Knowing Who to Contact for Help
by Thomas Day
Personal Care Manager Services
Home Care Services
Aging and the Attitude of Health Care Providers
Medications and the Elderly
Geriatric Health Care Providers
Reverse Mortgage Specialist
Long Term Care Insurance Specialist
Elder Financial Advisor
Elder Mediation Services
eHealth Services For the Elderly
Assistive Technology and Monitoring and Alarm Systems
Government and Community Elder Care Services
Personal Care Manager Services
Also known as Geriatric Care, Elder Care or Aging Care Managers, a Personal Care Manager represents a growing trend to help full time, employed family caregivers provide care for loved ones living close by or needing long-distance care. Care managers are also particularly useful in helping caregivers at home find the right services and cope with their burden.
Below is a partial list of what a care manager or Geriatric Care Manager might do:
- Assess the level and type of care needed and develop a care plan
- Take steps to start the care plan and keep it functioning
- Make sure care is received in a safe and disability friendly environment
- Resolve family conflicts and other family issues relating to long term care
- Become an advocate for the care recipient and the family caregiver
- Manage care for a loved one for out-of-town families
- Conduct ongoing assessments to monitor and implement changes in care
- Oversee and direct care provided at home
- Coordinate the efforts of key support systems
- Provide personal counseling
- Help with Medicaid qualification and application
- Arrange for services of legal and financial advisors
- Manage a conservatorship for a care recipient
- Provide assistance with placement in assisted living facilities or nursing homes
- Monitor the care of a family member in a nursing home or in assisted living
- Assist with the monitoring of medications
- Find appropriate solutions to avoid a crisis
- Coordinate medical appointments and medical information
- Provide transportation to medical appointments
- Assist families in positive decision making
- Develop long range plans for older loved ones not now needing care
Services from care managers should be something that every family takes advantage of but in reality very few families use care managers. Care managers could go a long ways towards helping the family find better and more efficient ways of providing care for a loved one. The concept is simple. The family hires a professional adviser to act as a guide through the maze of long-term care services and providers. The care manager has been there many times. The family is experiencing it usually for the first time.
Hiring a care manager should be no different than hiring an attorney to help with legal problems or a CPA to help with tax problems. Most people don't attempt to solve legal problems on their own. And the use of professional tax advice can be an invaluable investment. The same is true of using a care manager.
Unfortunately there are too few care managers and the public is so poorly informed about the services of a care manager that help that could be provided goes lacking. Let's look at two hypothetical examples to see how a care manager could be invaluable.
Here is the first example:
Mary is taking care of her aging husband at home. He has diabetes and is overweight. Because of the diabetes her husband has severe neuropathy in his legs and feet and it is difficult for him to walk. He also has diabetic retinopathy and cannot see very well. She has to be careful that he does not injure his feet since the last time that happened he was in the hospital for four weeks with a severe infection. She is having difficulty helping him out of bed and with dressing and using the bathroom. She relies heavily on her son who lives nearby to help her manage her husband's care.
On the advice of a friend Mary is told about a care manager, Susan Brown, who helped the friend's family cope with the care of a loved one. The cost of an initial assessment and care plan from the care manager is $300.00. Mary thinks she has the situation under control and $300.00 for someone from the outside to come in and tell her how to deal with her situation seems ridiculous.
One day Mary is trying to lift her husband and injures her back severely. She is bedridden and cannot care for her husband. Her son, who works fulltime, now has two parents to care for. On the advice of the same friend he decides to bring in Susan Brown and pay her fee himself.
Susan does a thorough assessment of the family's needs. She arranges for Mary's doctor to order Medicare home care during Mary's recovery. Therapists come in and help Mary with exercises and advice on lifting. Susan advertises for and finds a private individual who is willing to live in the home for a period of time to help Mary with her recovery and watch over her husband. Susan makes sure the new caregiver is reliable and honest and that taxes are paid for the employment. Susan enlists the support of the local area agency on aging and makes sure all services available are provided for the family. Susan also calls a meeting with Mary's family and explains to them the care needs and how they need to commit to help with those needs. Susan makes arrangements to purchase medical equipment for lifting, moving and easier use of the bathroom facilities. Medicare will pay much of this cost.
Susan suggests using a geriatric care Physician she works closely with to help Mary in the care of her husband. The geriatrician meets with Mary and her husband and spends a great deal of time explaining the proper treatment and care of elderly with diabetes. He rearranges medications and puts Mary's husband on a new insulin regimen to better control his blood sugar. He starts a strict diet and insists on weight loss and exercise. The previous doctor seemed more interested in treating symptoms than in changing lifestyles. Besides, many Physicians reason that the elderly are going to die from one thing or another so there's no sense in trying to bring about a cure. The inevitable outcome of old age is death. In contrast to this philosophy, the geriatric Physician feels that Mary's husband has a chance of improving his health with proper treatment.
Susan also works closely with an elder law attorney and a financial planner who specializes in the elderly. The attorney prepares documents for the family including powers of attorney, a living well and advice on preserving Mary's remaining assets. The financial planner recommends a reverse mortgage specialist to help Mary and her husband tap unused assets in their home's equity. In addition, an income vehicle is put into place to convert assets into income in order to provide for Mary for her life when her husband is gone.
With the help of the care manager, Mary's life and future have been significantly improved. Her husband as well, if he adheres to the care plan, may end up having a better quality of life for his remaining years.
Here is another example of the value of the care manager.
Michelle is a single divorced mother with two teenage children. Her mother, Martha, has a stroke which apparently causes some memory loss as well as some disability in being able to fend for herself. Michelle decides to move in with her mother and take care of her. In return, Michelle who is temporarily out of work, has a place to live and share her mother's retirement income.
Martha is anything but easy to take care of. She has mood swings and often forgets what she is doing. She seems to display a lot of anger and takes it out on Michelle, calling her all kinds of horrible names. She is never happy and is constantly calling for attention. In trying to take care of her own children as well as her mother, Michelle is quickly being drained of her physical and emotional strength. In addition Michelle's brother and two sisters are happy she is taking care of her mother since they are now absolved of the responsibility, but they treat Michelle terribly. They also call her awful names and accuse her of being a "leech". On the other hand they have plenty of advice on how to deal with their mother but never offer any of their own time to help. After all, they reason, Michelle is receiving benefits from caring for her mother and logically she should be responsible for all the care.
On the advice of a friend, Michelle hires a care manager, Brent Smith, who comes highly recommended in solving family disputes. Brent is a licensed mediator. Brent first does a care assessment of Martha and comes away suspecting there is more to her personality disorder than a stroke. He makes arrangements to take Martha to a geriatric Physician who does a complete physical assessment and recognizes that Martha's mental state is due more to improper medications and severe depression. Martha's medications are reduced and changed and she is put on antidepressants. In addition her diet is upgraded, she is to receive more fluids, more healthy foods and especially receive vitamin supplements. Particularly important is a prescription for vitamin B12 shots.
The doctor insists on as much exercise as Martha can handle. Brent, the care manager, helps convince Martha of the need for her new care program and helps oversee her following through on the exercise program. Over the ensuing months Martha's lack of memory and abusive behavior become less severe. She is also better able to care for herself without Michelle's assistance.
In addition to the assessment, one of the first things Brent does is to contact Michelle's older brother who is the family leader. He has a long talk with her brother and gives the brother a different perspective on the issues. With a better understanding of the situation, the brother calls a family meeting and Brent mediates a successful resolution of the family mistreatment of Michelle and the ensuing bad feelings. Everyone including Michelle is called upon to do their part in managing the care of her mother and to work on better family relations. The issue of Michelle "sponging" off of her mother is addressed and an adequate solution is agreed to by all. Brent will follow up in a month to make sure everyone is following through on his or her commitment.
As with hiring a paid provider to come into the home, hiring a care manager is a similar situation. For those who desire to remain in the home the care manager can help make that a reality and keep the care-recipient away from a premature admittance into a care facility.
But the care manager can also help in the other direction. Oftentimes the family is attempting to keep a loved one at home when that is not the best situation. For many and various reasons care in the home may be impossible. For example consider the family where all family members are employed full time and both mom and dad need intensive care at home. There is also not enough money to pay for caregivers to come into the home. In an attempt to cover the situation, the family trades off taking care of mom and dad in the morning and in the evening and on weekends. But they simply can't attend properly to the needs. A care manager may have a better perspective of the situation. In this case an assisted living facility would be a much better choice. If there is not enough money then a Medicaid facility may be the only choice.
Or take the example of an individual who has Alzheimer's and has become difficult to manage. It just may not be possible for a caregiver in the home to deal with it. But yet because of stubbornness or lack of proper judgment the caregiver is trying to cope. Again, a care manager can help in this situation and recommend a different care environment.
Care managers can charge anywhere from $50.00 an hour to $ $200.00 an hour. Or they may charge a flat fee for a care assessment and plan. It is important to check out the background of the care manager for the situation you are trying to solve. For example if it is a family dispute, a care manager with a background of mediation would be best. If it is a matter of proper medical treatment, a care manager with a background of geriatric nursing would be valuable.
The cost of a care manager is shouldered by the family. Long-term care insurance may also cover the cost of a care assessment. Many policies will pay $250.00 to $300.00 for a care assessment. Policy language usually refers to this as care coordination.
Home Care Services
Home Health Agencies (Medical home care services)
Home health agencies offer professional nursing and therapy services in the home. These services, provided by Registered Nurses, Licensed Practical Nurses, therapists and social workers include
- Health assessments,
- Patient education,
- Caregiver counseling,
- Physical and occupational therapy,
- Taking samples for lab tests,
- Wound dressing,
- Medication training and compliance,
- Hospice care,
- Management of IVs and more.
They also provide aides, who incidental to medical care, help patients with activities of daily living. Home health agencies rely heavily on Medicare for reimbursement for their services.
Personal Care Home Health Services (Non-medical home care services)
These providers represent a rapidly growing trend to allow people needing help to remain in their home or in the community. The services offered may include:
- Grooming and dressing,
- Recreational activities,
- Incontinent care,
- Handyman services,
- Teeth brushing,
- Medication reminders,
- Bathing or showering,
- Light housekeeping,
- Meal preparation,
- Respite for family caregivers,
- Errands and shopping,
- Reading email or letters,
- Overseeing home deliveries,
- Dealing with vendors,
- Transportation services,
- Changing linens,
- Laundry and ironing,
- Organizing closets,
- Care of house plants,
- 24-hour emergency response,
- Family counseling,
- Phone call checks and much more.
These providers receive reimbursement directly from families, from other care providers whom they subcontract for or from long term care insurance. It is becoming common for traditional home health agencies, those who offer medical care at home, to have a division that offers non-medical home care as well. Also many non-medical home care providers will contract their services to a traditional home health agency or to hospice.
Integrated Home Health Care Services
Many larger home care providers are integrating both services above. Also many large integrated facilities providers (combined nursing homes, assisted living and independent retirement arrangements) are offering more of the services above.
Aging and the Attitude of Health Care Providers
In many cultures in the world, elderly people are revered and their advice is sought and respected. In our culture, the wisdom, the knowledge and the social skills of the elderly are often overlooked and instead we focus on the mental and physical deficits of our older generation. Because of this prevailing attitude, older people are generally regarded as less valuable than younger people. The younger person has responsibilities of raising a family, maintaining a career and supporting the economy. The older person generally has no responsibilities and in addition is a drag on the economy since a great part of the tax base must go towards the support of older Americans.
It is inevitable that medical care providers will unconsciously have this same attitude towards their older patients. As a result, if an older person has a medical complaint and the cause is not readily apparent, a medical practitioner is more likely to accept the condition as a consequence of old age and treat the symptoms with medication as opposed to aggressively trying to identify the problem. In younger people, if the medical complaint is interfering with normal daily function, typically a more concerted effort will be made to identify and correct the problem.
A 90 year old man meets with his doctor and complains about pain in his right knee. The doctor tells him,
"Well Henry, what do you expect? You're 90 years old."
"But doctor my left knee is the same age as my right knee, there's no pain and it feels just fine!"
Many in the health-care profession consider old age to be a disease itself. Any medical problems are inappropriately attributed to old age as if it were a medical condition. And since there is no cure for old age, appropriate tests and treatment are never performed. Thus, medical problems that may not be related to age and may just as frequently occur in younger people are often not treated. As an example a recent survey of physicians involved in the health-care of the elderly reported that 35% of the doctors considered hypertension a result of the aging process and that 25% of them felt that treating an 85-year-old for symptoms of hypertension would cause more harm than the benefits it would produce.
Consider these real-life examples.
A 71 year old woman has surgery on her shoulder for a bone spur that is causing her considerable pain. The surgery is successful and she goes through several months of physical therapy to help her recover. But she is not recovering as expected. She continues to experience pain that radiates through her entire back. Her physical therapist does not know how to help her and attributes her failure to recover to old age. She visits her family care doctor at least twice over the next six months complaining of extreme tiredness and lack of energy. Her skin color is gray and she does not look healthy. Finally she visits her doctor and insists he check her for some problem since she is not recovering from the surgery and she feels awful. After her insistence he does a CBC blood lab and discovers she is severely anemic. He puts her in outpatient care and gives her four units of red blood cells and puts her on iron supplementation. Within two weeks the pain has disappeared and within a month she has recovered fully from the surgery. Numerous tests are done but there is no explanation for the anemia. Six months later she is healthy and active and her cheeks are ruddy. When she asks her doctor why he did not suspect anemia he tells her that she has never had anemia and based on her history he would never expect her to develop it. (He obviously has no training in geriatric care.) He then tells her, in an obvious contradiction of his previous position, that older people sometimes fail to absorb iron. Ironically, she defends the action of her doctor and does not feel he acted inappropriately.
Susan and John have been married for 46 years. Susan has always demonstrated a tendency for depression but it has generally been kept under control with medication. John's health begins to deteriorate and within a year he is dead. Several months after her husband's death, Susan is exhibiting signs of severe depression. She is given ever-increasing levels of various antidepressants but they have no effect. She is also exhibiting signs of a psychosis and is inflicting wounds upon herself. The family puts her in an assisted-living facility but they are unable to deal with their aberrant behavior. Her son who lives in New York decides to bring her to live with him and he admits her to a hospital in New York City . Tests indicate she is suffering from severe hypothyroidism and she is put on appropriate treatment. (Apparently no health practitioner had to this point suspected there may be another condition contributing to the depression other than old age.) The low thyroid undoubtedly was a significant factor in the development of her depression. But treatment of the depression is not addressed in the hospital and it has progressed considerably. She is transferred to a nursing home and wrongly diagnosed with dementia and placed in the dementia unit. She is deteriorating rapidly, she continues to abuse herself and she refuses to speak or acknowledge anyone. Within a few months she will probably be dead. At this point an experienced geriatric care physician steps forward and correctly diagnoses her condition as clinical depression. She is hospitalized for six months and undergoes aggressive treatment for depression. They also discover she is severely malnourished and correct that problem as well. She has now moved back into the home of her son. She is a normal functioning person and is even volunteering to work in the local library. The elderly health care system almost dropped the ball on this one.
A 65 year old woman, who has been active all of her life, has a small stroke which leaves her with some discomfort and pain in her right arm but does not limit her in any other way. She is anxious and nervous about her condition and the possibility of another stroke and the doctor prescribes pain pills and Valium to help her with her anxiety. Over a period of 15 years, she becomes addicted to Valium and does little else except sit in front of the TV all day long. She makes sure she maintains contact with a doctor who will provide her need for Valium. (No doctor or pharmacist would allow this abuse to go on with a younger person without intervention. Older people are often ignored and allowed their vices.) Early on, her family can see the problem and they decide to intercede. On the advice of friends they contact the geriatric care unit at a local university hospital. A geriatric care physician is alarmed at her addiction and insists they wean her off of the mood altering drug. He is willing to treat her and help her. She refuses to cooperate and in deference the family backs off. Over a period of 15 years she gets no exercise except for trips to the bathroom or trips to the living room to visit occasionally with her family. But family and grandchildren over the years visit less and less often.
After many years of sitting in the same position her knees deteriorate and she finds it difficult to walk. In order to avoid getting up from her chair to walk to the bathroom, she drinks very little fluid and becomes chronically dehydrated. This does not help her mental or physical condition. She has the joints in both knees replaced but does no exercise and the combination of the invasion of muscle tissue and lack of use of her legs causes muscles around her knees to atrophy. No follow-up is done by the orthopedic surgeon to make sure she remains active, after all she is old. She can now barely walk at all. She spends her final three years confined to one room in her daughter's house, refusing the use of a wheelchair and refusing to go anywhere beyond the bathroom.
In this case a general lack of concern by all involved demonstrates the apathy of family and the healthcare community to making sure elderly people can experience a meaningful existence in their remaining years. Had this been a younger person, say in her 40's, everyone involved would have been more aggressive in helping her solve her addiction and in making sure she had a better quality of life.
A Holistic Treatment Approach
Most practitioners who specialize in care for the elderly are aware of the above-mentioned problems with older patients and they take a holistic approach with the medical treatment of these people. An attempt is made not only to treat the specific condition or conditions but to make sure there are sufficient activity, proper nutrition and family support at home. They work closely with family members to make sure their loved ones are taking medications properly and are reporting their symptoms. They require those caring for the elderly to closely monitor health conditions and report any changes before things get worse. They meet with their patients regularly enough to monitor their health. This broad-based approach results in better health and in fewer visits to the emergency room because intervention for a worsening condition is achieved at an earlier stage.
A good example of this holistic approach is the Veterans Administration health care system. The VA system over the years has become the nation's largest geriatric care provider for older men. Almost all veterans are men and because most veterans hearken back to World War II, the Korean conflict and the Vietnam War most of them are older than age 60. Because of this the VA has found it necessary to adapt its health-care to this age group. The VA schedules regular exams at least every six months or yearly depending on available funds and personnel. A health examination always includes lab work. Screenings for cancer, cardiovascular problems, eye problems, hearing problems and many other conditions common to aging are a routine part of veteran's administration health-care. The VA was one of the first health providers in the nation to require its local hospitals to keep their records on computer and in a central database. This allows health practitioners in the system to quickly and efficiently access all information and avoid misdiagnoses and possible drug interactions. By taking a hands-on, preventative approach to the treatment of older men the system is able to keep its patrons healthier and avoid costly medical interventions due to lack of follow-up.
A significant problem with providing holistic treatment is many health insurance providers, including Medicare, will not pay for routine office visits without an underlying medical complaint. Some private health plans are starting to use so-called "pay for performance" or "outcome based care" where the overall health of the patient takes precedence over the procedures used to get there. But Medicare, up to this point, has not made this change. This makes it extremely difficult for the geriatric care provider to monitor his patients and intervene before a health problem becomes bad enough to require hospitalization or major surgery. Doctors practicing this type of medicine have to be inventive in order to provide adequate treatment. Family of the elderly can also help in this respect by "finding" medical complaints to justify setting regular appointments with the doctor.
Treatment of Depression
Older Americans have a suicide rate that is four times the national average. Much of this is a result of depression. It is estimated that 20% of the aging population suffers from depression. Practitioners not trained in geriatric care automatically assume that depression is a normal part of the aging process. This is not true. Depression can be treated just as effectively in older people as it is in younger people. But sometimes medications are not as effective in older people as they are in a younger population. Unfortunately, practitioners often rely too heavily on medications and don't try other non-medical therapies.
Many doctors simply don't choose to recognize depression and help their older patients with it. It is interesting to note that over 70% of elderly suicide victims committed suicide within one month of seeing their health care practitioner. Many of these people were not referred or treated for depression by that health care practitioner.
Medications and the Elderly
Facts about Medications and the Elderly
- Older Americans comprise about 13% of the population but they consume over 30% of all prescription drugs.
- It is estimated that 30% of the older population taking medications have had an adverse drug reaction.
- Up to 20% of hospital admissions for the elderly are due to adverse drug reactions.
- It is estimated that over half of the deaths attributed to adverse drug reaction are for people age 60 and above.
- The Journal of the American Medical Association recently reported that if adverse drug reactions were classified as a disease it would rank as the fifth leading cause of death in the United States .
A major problem with medical treatment for the elderly is the large number of prescription medications the average older person is taking. On average a person over age 75 has five prescription drug medications and is using at least two over-the-counter medications as well is taking herbal supplements. Due to impaired ability to "clear" medications from the body, recommended dosages of prescription drugs are generally too much for older people. This can result in over-dosage and drug reaction and in some cases even death. The medical community is well aware of this problem, but finding the right dosage is often a problem because drug reactions are often masked by symptoms of the many chronic medical problems most elderly endure. In addition older people often don't recognize or they fail to report drug reactions. Another huge problem is that the primary care provider may not be aware of all of the prescriptions being taken and some of these drugs may be causing interaction with each other. Finally, many elderly either over-dose or under-dose or fail to take medications.
The most common problem with medications is that the doctor or the pharmacist may not be aware that a patient is taking a number of drugs prescribed by other doctors. Many older patients continue prescriptions with a number of doctors and specialists and no one doctor, not even the primary care physician, often knows the number or extent of medications being taken. Add onto this the fact that the elderly are most likely consuming a variety of over-the-counter medications as well as herbal supplements and it is not surprising to see the large number of adverse drug reactions and hospitalizations and deaths due to drug reactions among the elderly.
Elderly people also often fail to adhere to proper dosage and frequency of dosage with their medications. Some will take more pills than prescribed because they think more is better and will cure the condition faster. Others have a noncompliant attitude towards medical treatment in general and often refuse to take any drugs prescribed for them. Many are confused or have memory problems and aren't even aware they have taken pills or need to take pills. Oversight and administration of medications by a responsible person is an extremely important duty for caregivers of the elderly.
Controlling Problems with Medications
Here is a list of herbal supplements that may interact or interfere with prescription drugs.
- Ginkgo Biloba
- St. John's Wort
- Saw Palmetto
- Senna Or Cascara
There are also a number of prescription drugs that should be avoided with the elderly. The elderly person or a responsible family member should always consult with the doctor and asked that doctor if he or she is sure that the medication is safe for an older person. It is not inappropriate to challenge a physician. If prescription drugs are bought through a trusted pharmacist, the pharmacist may also be willing to consult on the safety of the medications for an older person.
Doctors and pharmacists are generally careful about overdosing or using harmful mixtures of drugs but other than dosages based on body weight, most prescription drugs do not have recommended dosages for older people. Often the doctor must experiment to find the right dosage and the problem is that many older people or their families fail to recognize drug reactions or they fail to report them. Without the proper feedback, under-dosage or over-dosage might occur and effective treatment of the condition is not possible. And of course over-dosage may cause more severe problems than the condition being treated.
Controlling the Problem of Multiple Medications
In order to control the problem with an older person taking multiple prescriptions from many doctors, the older person or a responsible family member should bring all medications being taken by the patient to a doctor's appointment. This definitely includes all herbal supplements and over-the-counter medications as well. It is useful to go over with the doctor what each medication is for. If there is no reason to take that medication or if it may be causing interaction the doctor should indicate that and should withdraw the prescription. As a general rule the more the medications the more the potential problems. A concerted effort should be made to prescribe the fewest medications possible to control a medical problem.
One way to combat the problem with an older person not complying with taking pills at the proper time or not taking enough or taking too many is to use the popular "pill calendar box". Most people have adopted this idea but for those who haven't this is an extremely effective way to administer medications.
Many elderly order their medications through the mail and some may even obtain prescriptions on the Internet. Internet prescriptions might be a common practice for very popular medications such as phetermine or Viagra. It is recommended that all medications be ordered through one pharmacist particularly a pharmacist that has a certification in geriatric pharmacy. By controlling all medications through one database, the pharmacist can alert the older person or his or her family about a possible drug interaction or adverse drug reaction. This central database approach should become much easier for those older people who enroll under the Medicare part D drug program. Presumably the company offering the drug benefit will have a database for its insureds.
Geriatric Health Care Providers
There is currently little incentive to encourage established doctors or students in medical school to specialize in geriatric medicine. Even though it is a recognized specialty, according to the American Geriatrics Society, there are only about 9,000 M.D. Geriatricians and several hundred osteopathic physicians (DO) certified in geriatrics, as well as some 2,400 board-certified geropsychiatrists in the United States . (A geropsychiatrists it is a psychiatrist trained to deal with the mental health needs and specific syndromes faced by older adults).
According to the statistical abstract of the United States there are approximately 770,000 practicing doctors of medicine in the United States . This means there is roughly 1 doctor, including specialists, for every 300 persons in the United States . Based on the numbers above there is only about 1 Geriatrician for every 3,000 elderly persons in this country. Because there are so few of them, it may be impossible to find a physician specializing in geriatric care in some areas of the country.
There are probably many more family physicians or internists who specialize in treating older people and from experience they have probably learned many of the issues associated with treating the elderly, but many of these practitioners could probably benefit from more specialized geriatric training if it were available.
Out of 145 medical schools in the United States only five have geriatric care departments. Many more medical schools offer elective courses in geriatrics but only 3% of all medical students ever enroll for such classes.
Helping elderly people who are nearing the end of their lives and who suffer from multiple, incurable and chronic disorders is often not an appealing prospect to family doctors or to young medical students. Besides, geriatric care typically does not produce as much income as other specialties.
Most doctors who treat the elderly are reimbursed either through Medicare or sometimes through Medicaid or sometimes a combination of both. These government programs have become more and more stingy over the years. Many doctors who in the past have accepted Medicare find that they have better paying opportunities treating younger patients and they will no longer accept new Medicare patients. And as long as those younger patients are available for treatment, few doctors are going to go out of their way to seek out Medicare or Medicaid reimbursement.
There are doctors, geriatric nurse practitioners or physicians assistants who derive satisfaction from working with older people. And they may be taking a cut in pay by doing this. These practitioners are most likely going to be Geriatricians. An older person or his or her family should seek to find these geriatric care specialists in their area or if that is not possible an effort should be made to locate a geriatric clinic in the area. Geriatric clinics are becoming more popular and even though the doctors who staff them may not always be geriatric physicians they are likely to be well aware of the problems associated with treating elderly people. Many geriatric clinics include a team of specialists to help older people. Here are some of the specialists who may be available in a geriatric clinic.
- Social worker
- Physical therapist
- Occupational therapist
- Consultant pharmacist
If there are no Geriatricians or geriatric clinics in the area, an attempt should be made to find those doctors who specialize in elderly care. This can be done by making phone calls to various doctor's offices or by checking in the Yellow Pages. Too often, the elderly or their family is content to work with the doctor whom they like but who has little experience in geriatric care. Personality is an important issue but it is more important to find a qualified doctor to care for an aged loved one.
Home Visiting Doctors
Many doctors are returning to the practice of medicine a hundred years ago and are making house calls. Health insurance plans including Medicare will now reimburse a doctor and possibly a staff member, if test equipment is involved, to visit homebound patients in their homes.
To qualify for a home visit the patient must have to experience great difficulty in leaving the home in order meet with the doctor in his or her office. This does not however mean the care recipient need be totally disabled. It simply means that transportation requirements or help needed to get to a doctor might be very expensive or difficult to provide or the patient's safety might be jeopardized by leaving the home. Doctors are willing to visit in the home and provide service because they are paid more money by health insurance providers to compensate them for their time and their loss of efficiency in meeting patients in their offices. Probably the insurance providers reason that the additional cost of meeting with patients at home, before major medical problems evolve, is more cost effective than paying for ambulances and treatment in emergency rooms.
Doctors who make home visits are more likely to be experienced in geriatric care. This is because most homebound patients are typically older. This is a positive advantage for a family using a home visiting physician since we have been making a point that it is better for the older person to be treated by a doctor with experience in this area. It will typically result in better care.
There are also a number of advantages to using home visits as opposed to office visits. The patient will be more relaxed and cooperative in familiar surroundings. Older people are thrilled that a doctor would take time to visit them in their home. They will be more compliant, more open and as a result receive better treatment as opposed to receiving care in the doctor's office. Typically the doctor will take more time and be able to establish a better rapport with his patient. The idea of the doctor not having to hurry off to another patient in another room is comforting to an older person.
A very important benefit is that a physician can see the environment in which his patient is living and have a better understanding of how that environment may affect his patient's health. By seeing it first-hand he can make recommendations for care that would have been impossible in his office. In essence the doctor learns much more about a patient in her home and he can achieve a personal connection that would have been difficult to establish in the office. The ultimate outcome of a house call is that the doctor can provide a greater degree of holistic medicine.
A home visit patient can receive house calls on a periodic or ongoing basis. The patient need not give up other doctors if the reason for being homebound is temporary. Testing equipment in the past few years has become more portable and the doctor can bring an assistant who might provide tests on site. Heart function, lung function and simple blood tests performed on site can give the doctor an immediate feedback on the needs of his patient and allow him to make treatment decisions without the delay of waiting for test results.
Health Care Advocates
Sometimes it's easier for a person to hire someone to walk through the maze of finding doctors, making sure treatments are appropriate and working with insurance companies. There is a growing industry designed to help people in this area. It is also important to remember that area agencies on aging can provide counseling services for Medicare at no cost. But the services of health-care advocates are typically broader and can save a great deal of time for people who have the money to hire someone to be their advocate.
The Need for Legal Services for the Aged
Potential for Abuse
Many elderly rely entirely on family or other trusted individuals to help them. Whether it is physiological or psychological, as people grow older they tend to grow more childlike. The dependence upon care givers or family members makes an older person more vulnerable for abuse. For example an older person relying on her children to provide meals and transportation and make financial decisions finds it difficult to complain when one of her children takes advantage of her. If for instance the child takes her money, slaps her or is neglectful in caregiving, the parent may be threatened with loss of support if he or she complains. The child may also use threats of violence to keep the parent in line.
It is estimated that 5% to 10% of elderly Americans are suffering abuse. But nationwide only about 10% of it is ever reported. Much attention has been focused on abuse in nursing homes but most of the elder abuse in this country is at the hands of family members in the home. Most states have laws protecting the elderly from abuse. Here is a description of the various types of adult abuse.
- Sexual abuse
- Physical abuse
- Emotional abuse
- Financial abuse, stealing money or changing title on assets
- Active and passive neglect by caregivers, "Active neglect is the willful failure by a caregiver to fulfill care-taking functions and responsibilities. This includes, but is not limited to, abandonment, deprivation of food, water, heat, cleanliness, eyeglasses, dentures, or health-related services. Passive neglect is the non-willful failure to fulfill care-taking responsibilities because of inadequate caregiver knowledge, infirmity, or disputing the value of prescribed services."
- Self-Neglect, which means an individual is failing to care for his or her own self needs.
All states have agencies that receive complaints of abuse. In some states failure to report abuse of the elderly is a crime. To contact an abuse complaint department, call your local area agency on aging.
Potential for Financial Exploitation
The trusting nature of many elderly people also makes them vulnerable to financial exploitation. Here are some examples of the most common types of financial exploitation.
- Telephone Solicitations for Dishonest Charities or Fraudulent Investments
- Identity Theft to Get Credit Card Numbers and Other Information
- Pay in Advance Prize-Winning Schemes
- High-Pressure Door-To-Door Sales
- Dishonest Home Improvement Contracts
- Dishonest Miracle Health Cures
- Unnecessary Living Trusts through a Trust Mill
- Dishonest Funeral Arrangement Plans
All elderly should be made aware of and told to avoid any financial transactions that require upfront deposits. No contracts are to be signed without two or three days of consideration in consultation with knowledgeable family members. All dishonest schemes promulgated through the mail are guilty of mail fraud and appropriate complaints should be filed. All states have consumer reporting departments to take complaints on consumer fraud. Again a good source for help is your local area agency on aging.
Help with Medicare and Medicaid
Qualified legal help is available from elder law attorneys to help individuals in applying for and accelerating payments for Medicaid. An elder law attorney can also help with disputes with Medicaid. Likewise attorneys who specialize in Medicare can help with disability claims and sometimes this help is the only way claims are ever granted. The local area agency on aging has an advisory service for help with understanding Medicare, Medicare supplements, Medicare advantage and Medicare part D.
Inability to Handle One's Affairs
Private legal help or free community legal services for low income people are available to help people with advanced directives. Advance directives are such things as living wills, medical powers of attorney or do not resuscitate orders.
Guardianship or Conservatorship . According to the American Bar Association Commission on Law and Aging, guardianship and conservatorship involve the following:
"Guardianship or Conservatorship is the legal tool of last resort for decision-making and management of your affairs.
Generally a guardianship involves the court appointment of someone to act as guardian to manage the property and/or personal affairs of an incapacitated person (commonly referred to as the ward). Conservatorship typically involves management of just one's assets without control over the person. However, definitions vary, and to simplify we will just use "guardianship" here.
In addition, limited guardianship is recognized in most states. Under it, the court can limit the guardian's authority and tailor it to the specific areas of incapacity of the ward. Limited guardianship offers a more finely tuned and less restrictive approach to guardianship, but some courts have been reluctant to use it.
If someone is appointed your guardian, but you already have an agent under a durable power of attorney or under a health care advance directive, the court will normally determine whether the agent's authority shall continue.
When is it appropriate?
People need a guardian:
when they can no longer manage their affairs because of serious incapacity, and
no other voluntary arrangements for decision making and management have been set up ahead of time, or if they have been set up, they are not working well, and
serious harm will come to the individual if no legally authorized decision maker is appointed.
Guardianship is a major intrusion into one's life and should be used only where there is a serious inability to make or understand the consequences of decisions.
The criteria courts use to determine "incapacity" or "incompetency" was described at the beginning of this chapter. A decision to seek guardianship should never be based on stereotypical notions of old age, senility, mental illness, or handicaps. A person has a right to make foolish or risky decisions. These decisions by themselves do not mean that the person lacks capacity. A competent person chooses to run risks. An incompetent person runs risks not by choice, but by happenstance."
11 reasons for estate planning.
- Take care of your family financially and legally when you are gone
- Provide instructions, in the event of death, for guardianship of minor children.
- Provide for disabled adult children, elderly parents, or other relatives.
- Get your property to chosen beneficiaries quickly and determine in advance who gets what.
- Plan for incapacity
- Minimize expenses of transferring property
- Choose executors or trustees for your estate.
- Ease the strain on your family by making funeral arrangements and having your financial affairs in order.
- Create tax savings and leave money to charity
- Reduce state and federal estate taxes
- Provide a plan for an orderly transition of your business ownership to others
Settle Family Disputes
It is becoming more common to use an attorney, an arbitrator or a mediator in solving disputes among family members relating to the care of elderly parents. For instance, one child may have stolen assets and the rest of the family wants that person brought to justice. Or there may be a disagreement over the final disposition of property in an estate plan and it may take an attorney to solve that. Or one member of the family may want the parents declared incompetent but other members don't agree. A lawyer may be necessary to settle the differences either through the courts or through mediation.
Age Discrimination in the Workplace
The Age Discrimination In Employment Act protects people who have been laid off or fired because of age discrimination. We have discussed in earlier sections how in some companies older employees are considered less valuable than younger employees. As baby boomers approach their 60s many will be opting to continue employment or find employment with another company. Age discrimination issues will become more prevalent in the coming years.
Rights of Persons with Disabilities
According to the American Bar Association Commission on Law and Aging:
"A third of us over the age of sixty-five have a physical disability, as do half of us over eighty-five. A disability does not mean that you must give up the places, activities, and livelihood you have been used to. Three important federal laws, the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990 ( ADA ), and the Fair Housing Amendments Act of 1988 (FHAA), protect people with disabilities from discrimination. In addition these laws require employers and providers of housing or services to make reasonable modifications to their rules to meet the needs of persons with disabilities."
Rights for Grandparents
The ability for grandparents to see their grandchildren might be impaired when the parents of the children divorce and the parent with custody may deny the grandparents seeing the children. All states have grandparent visitation laws that allow a judge to determine whether the court can order visitation rights or not. But it is not an easy task and can be expensive and time-consuming and at the end grandparents may be frustrated that they come away with no visitation rights.
It is becoming common in our society for grandparents to assume the parenting role of their grandchildren. This may be due to parents who are totally irresponsible, or who have drug problems or who have simply abandoned their children or it may be a single parent who is struggling with earning a living and has asked grandparents to help raise a child. If the grandparent is to assume total parenting for a grandchild the grandparent should ask a state court to grant custody or guardianship depending on rules in the state. This allows the grandparent to register the child for school, get health insurance, get public assistance and so on. If the courts are too expensive or too hard to use, parents may be willing to grant temporary custody to grandparents for certain activities such as obtaining medical records for registering for school.
Finding legal help
Elder Law Attorney
Below is a partial list of what an elder law attorney (lawyer) might do:
- Preservation or transfer of assets seeking to avoid spousal impoverishment when a spouse enters a nursing home
- Medicaid qualification and application and Medicaid planning strategies
- Medicare claims and appeals
- Social security and disability claims and appeals
- Supplemental and long term health insurance issues
- Disability planning, including use of durable powers of attorney, living trusts, "living wills," for financial management and health care decisions, and other means of delegating management and decision-making to another in case of incompetency or incapacity
- Conservatorships and guardianships
- Estate planning, including planning for the management of one's estate during life and its disposition on death through the use of trusts, wills and other planning documents
- Administration and management of trusts and estates
- Long term care placements in nursing home and life care communities
- Nursing home issues including questions of patients' rights and nursing home quality
- Elder abuse and fraud recovery cases
- Housing issues, including discrimination and home equity conversions (reverse mortgage)
- Age discrimination in employment
- Retirement, including public and private retirement benefits, survivor benefits and pension benefits
- Health law
- Mental health law
Estate Planning Attorney
An estate planning attorney will help you with the following:
- Give tax advice pertaining to estate issues
- Perform probate services
- Draw up wills and trusts
- Design powers of attorney and other consent documents
- Design special trusts or partnership programs to save estate or gift taxes
- Design charitable gifting programs
- Design programs to pay for estate taxes
State Legal Services
Most state bar associations have attorney referral programs for people seeking specific help. There are also programs to provide some free legal service for people with low income.
Services under the Older Americans Act
State aging departments and area agencies on aging offer limited free legal advice to qualifying persons under the Older Americans Act. Contact your local area agency on aging.
Reverse Mortgage Specialist
A reverse mortgage specialist will help you determine whether a reverse mortgage is best for you, which type of loan is best and will help you obtain a loan. Also when you obtain a government-backed reverse mortgage there is a requirement to meet with a HUD counselor to make sure you understand why you are doing the mortgage. A person cannot rely entirely on the counselor to determine whether the mortgage is best or not. A major responsibility for dispensing advice lies with the reverse mortgage specialist.
Many state laws do not allow the specialist to have a conflict of interest such as doing the reverse mortgage in order to put money into an investment. In other words the specialist is not allowed to sell investments or insurance products using the mortgage proceeds. However, this does not dissuade many specialists from teaming up with a financial salesperson and to have an arrangement to refer clients to this person. Some insurance agents have been known to own a reverse mortgage company and they require their loan originators to send clients to these owners in order to invest the money in insurance products such as annuities.
There may be situations where using proceeds solely for the purpose of investing could be a good idea. But in many cases it may only be a good idea for the financial salesperson to create a commission and it may end up being an expensive proposition for the homeowner. For instance suppose a homeowner can get $70,000 out of his or her equity on a reverse mortgage. It might cost $8,000 in origination fees to obtain this money. Then a recommendation is made to invest the money in a deferred annuity which the homeowner does. Suppose that a year later, the homeowner decides to sell the house and move into an assisted living facility. In order to sell the house, the reverse mortgage must be paid off. Suppose also that the value of the home has declined over the previous year and there is little excess equity left to cover part of the payoff. In addition the homeowner is forced to cover some of the closing costs in the sale. In this case, assume the entire $70,000 will have to be taken out of the deferred annuity to cover the cost of selling the home. But there is a 10% early withdrawal charge on the annuity surrender. The total cost of doing the reverse mortgage and buying an annuity is $15,000. In the end the homeowner has taken a loss of $15,000 -- about a quarter of the value -- on the $70,000 in equity that would have been available in the sale of the home had no reverse mortgage ever been done in the first place.
As a general rule it is not a good idea to do a reverse mortgage solely for the purpose of reinvesting the money in something else. Reverse mortgages were designed to help people pay costs or provide extra income to allow older Americans to remain in their homes. Or sometimes older people want extra cash to buy things they currently can't afford. Such things as remodeling, finding money for a down payment for a second property, buying a new RV, financing travel, buying a new car, buying long-term care insurance and so on.
When doing a reverse mortgage make sure all costs are disclosed and the alternatives are discussed as well. When choosing a reverse mortgage specialist ask for a signed statement from that person that he or she has no relationship with insurance annuity or investment companies either directly or through an associate and that he or she will make no recommendations for selling an investment vehicle. If you want to use the money and put it in an investment, that should be your choice alone, and someone wanting to make a commission off of you should not induce you to do the mortgage for that purpose.
Long Term Care Insurance Specialist
Increasingly we see insurance agents or financial advisers that are specializing solely in the sale of long-term care insurance. Not only is long-term care insurance a complicated product but companies are constantly coming out with new products as well. In addition a person selling long-term care insurance needs to have an understanding of what long-term care is in order to make suitable recommendations to people buying the insurance. Most insurance agents and financial planners simply don't have the time to keep up with these issues and that is why some of these people have specialized exclusively in long-term care. Here are the advantages of using a specialist.
- The specialist usually works with more than one long-term care insurance company and can find the company with the best benefits and the best price.
- The specialist often has experience with a number of companies and can recommend those that are good at paying claims, are expected to continue selling long-term care insurance or are prone to rate increases.
- The specialist has experience with medical problems involved in the issue and underwriting of long-term care insurance and he or she can find the right company for underwriting or help to get the insurance through the underwriting in a chosen company.
- Specialists are generally experts in understanding long-term care issues, especially those specialists certified to sell partnership policies. Because of this knowledge, the specialist can recommend the best coverage to dovetail with the insured's assets, income and desires for care settings and services.
- Many specialists work with a team of eldercare advisers such as care managers, pre-need funeral planners, elder law attorneys, home health providers, retirement financial planners and reverse mortgage specialists. This allows them to help the pre-retirement generation with long-term care insurance and retirement planning and also help the parents of those people with elder care needs.
Elder Financial Advisor
A financial planner or advisor who works with the elderly is going to understand how to invest assets for that age group. This person will also understand how to use assets and income when there is a need for long-term care.
This person will work closely with an estate planning or elder law attorney to make sure all arrangements for the estate, for disability, for loss of capacity, for medical treatment and for long-term care are covered.
An elder financial advisor is also likely to work with a team of eldercare advisers such as care managers, pre-need funeral planners, long-term care insurance specialists, reverse mortgage specialists and home health providers.
Advance directives for medical treatment ordinarily involve the four following written documents.
- Living will
- Health care treatment plan
- Health care power of attorney
- Do not resuscitate at-home (for states that allow a legal procedure for this action)
Many if not all healthcare organizations have standard forms for living wills. Some may also allow for signing a do-not-resuscitate order. A health care treatment plan is usually created between a patient's physician, the patient and an attorney. A health-care power of attorney is a legal document that would not usually be available as a standard form from a health-care provider. The do not resuscitate at-home arrangement is a very complicated procedure where a person needing emergency medical treatment in the home and not desiring resuscitation makes that wish known to emergency medical personnel. This involves an identification bracelet, a complicated verification procedure and an OK from a central clearinghouse not to perform any life-saving actions.
All too often a patient or his or her spouse or a family member will call 911 in the event of a life-threatening emergency. Almost never will the living will, the health care treatment plan or the health-care power of attorney end up with anyone in the emergency room. Without specific instructions, the emergency room will typically have the family sign a living will. But other health treatment wishes of the patient may be at home in the desk drawer. It is therefore extremely important to remember to take these documents to the emergency room whenever a crisis arises. If the patient has a do-not-resuscitate at-home legal arrangement -- for those states that allow such an arrangement -- and is not wearing his or her bracelet to identify this to emergency medical technicians, then it will be ignored and the EMTs will attempt resuscitation because that is what they are legally required to do.
Without the advance directives in hand for an emergency room or for a standard hospital admission many patients and family will be given the opportunity to sign a standard form from the health-care provider. Many hospitals, nursing homes and home health agencies have confusing, nonstandard living will forms that allow or disallow a number of treatments. It is extremely important for the patient or the family to read these institutional advance directives thoroughly before they sign them. We have seen a number of these documents that are both contradictory and confusing. Some of these documents claiming to be a living will, in effect, allow life-saving heroic efforts to be performed in contradiction to the principles of a living will.
Palliative Care and Hospice Care
Providing Comfort in a Facility or at Home
Palliative care is a new trend in medicine to provide comfort for the symptoms of the disease while not directly treating the disease itself. It is being used more and more in hospitals, nursing homes and by home health agencies to support the disease process. It is primarily used for people with severe illnesses and suffering from chronic pain, anxiety or discomfort.
Hospice is a form of palliative care for patients who are terminally ill. A commonly used definition for terminally ill patients is, "patients who have a progressive, incurable illness that will end in death despite good treatment, and who are sick enough that you would not be surprised if they died within six months." Whereas hospice comes into play when a patient is diagnosed as terminal, palliative care can be used at any stage in the treatment of a severe illness, from diagnosis on.
Because it is new, palliative care may or may not be covered by insurance plans such as Medicare. Or only certain protocols or medications might be covered. As it evolves so will the definitions, procedures and treatment plans. The concept involves a team approach using doctors, nurses, social workers and chaplains, similar to the hospice team. If a loved one is experiencing a great deal of discomfort or pain in the treatment process for a serious illness, the family should inquire whether the institution or care provider has a palliative care plan. Use of this care will help alleviate the suffering.
Hospice care has been around for 30 years and is a much better defined subcategory of palliative care. Hospice involves a team approach using the following providers.
- Family caregivers;
- The patient' s personal physician;
- Hospice physician (or medical director);
- Home health aides;
- Social workers;
- Clergy or other counselors;
- Trained volunteers; and
- Speech, physical, and occupational therapists, if needed.
The purpose of hospice is the following:
- Manages the patient's pain and symptoms;
- Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
- Provides needed medications, medical supplies, and equipment;
- Coaches the family on how to care for the patient;
- Delivers special services like speech and physical therapy when needed;
- Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
- Provides bereavement care and counseling to surviving family and friends.
A person can receive hospice from Medicare if he or she is
- eligible for Medicare Part A (Hospital Insurance), and
- the doctor and the hospice medical director certify that the person is terminally ill and probably has less than six months to live, and
- the person or a family member signs a statement choosing hospice care instead of routine Medicare covered benefits for the terminal illness, and
- care is received from a Medicare-approved hospice program.
A person may continue to receive regular Medicare benefits from his or her customary doctors for conditions not related to the hospice condition.
Although hospice is an outstanding service, Medicare does not pay enough or provide enough care for many patients. For those who have long-term care insurance, they may be able to get more hospice coverage from the insurance than from Medicare.
Pain management is the process of bringing pain under control. Pain can be a problem with many people at the end of life. Persistent pain can accelerate the decline in health due to poor nutrition, depression, lack of social stimulation and lack of exercise. And persistent pain becomes a form of disability, interfering in the ability to perform common daily tasks. Here is a list of problems that pain causes to one's self or to others:
- It is difficult to sleep
- It is difficult or impossible to pursue hobbies or personal activities
- Exhaustion can become a constant companion
- Depression is a very likely outcome
- There is little desire to eat
- It is difficult to enjoy the companionship of one's family
- There is reluctance to move about or exercise
- The patient and the caregiver become more isolated from the community because of the disability
- Family and friends who are caregivers become exhausted because of constant worry.
Chronic pain is a problem most often experienced by terminal patients who are dying from cancer. But non-cancer patients at the end of life may have other pain-causing conditions in addition to their terminal illness. This may be caused by such conditions as neuropathies, chronic back disorders or arthritis. Chronic or ongoing pain only adds to the suffering of a critically ill person. If the pain can be brought under control, a seriously ill patient can have a better quality of life for the remaining time available to him or her. Constant pain can also bring on depression which in turn could lead to suicide. Many people who cannot endure chronic pain take their own lives or seek out assisted suicide. Pain management may be a better alternative than suicide, not so much for the patient but more for the family. If a loved one takes his or her life, that can produce a permanent scar of shame or guilt within the family.
A major problem with persistent or chronic pain is that allowed to go on without treatment, the pain can become harder to treat. Research indicates that, over time, stimulation from persistent pain produces neural pathways in the brain that increase the intensity of the pain. In addition, pain receptors in the skin that are normally inert, may start transmitting sympathetic pain signals making the patient even more miserable. This can create a condition where a mere breeze or the wearing of clothing can be excruciatingly painful. Taking a pain pill occasionally as needed is not an effective treatment. Initially, it takes large doses of pain medication, on a regular schedule to bring the situation under control. Once the pain is under control, it is easier to maintain with continued lower doses of medication.
Sometimes people refuse to take strong pain medicine on a regular basis fearing dependency. But knowing that persistent pain itself becomes addictive should be incentive enough for people to seek treatment. Which is worse, addictive pain or reliance on medication? It is important to seek professional help with pain management and to establish an ongoing daily program to keep it under control. There are also numerous other non-drug techniques being developed for controlling chronic pain. Some of these might involve mind control techniques, acupuncture, electrical nerve intervention, massage or a host of other holistic approaches.
It is not necessary to refuse pain management because of a desire to display courage in dealing with terminal illness. A person is not a complainer because he or she admits to having pain. It is important to remember that caregivers are also susceptible to the stress of pain in their loved ones. The constant worry to the caregiver from ongoing suffering with the loved one will adversely affect the physical and emotional health of the caregiver. If not for themselves, persons experiencing persistent pain should seek their own treatment out of consideration for others who are concerned about their welfare.
The most common line of treatment in pain management is the use of medications. Here is a list of medications commonly used with three levels of pain.
- Mild pain - For mild cancer pain, acetaminophen or nonsteroidal anti-inflammatory medications (NSAIDs), such as ibruprofen, are often used.
- Mild to Moderate Pain - For mild to moderate cancer pain, when pain relief is not achieved with acetaminophen or NSAID medications, opioid medications are often used, usually as combination tablets with NSAIDs or acetaminophen. Some of the opioid medications used as combination products are hydrocodone, codeine, or oxycodone. Adjuvant medications may also be used for pain that is difficult to manage. Adjuvants are medications that were originally designed to treat conditions other than pain, such as tricyclic antidepressants.
- Moderate to Severe Pain - Moderate to severe pain is usually best treated with higher doses of opioid medications often not given as combination products. Adjuvant medications, NSAIDs, and acetaminophen may also be used. The opioid medications used to treat moderate to severe pain include morphine, fentanyl, oxycodone, and hydromorphone.
If the attending physician does not seem to know much about pain management or is unwilling to provide a referral to a pain clinic, the patient or caregiver need to take matters into their own hands to bring the situation under control. Referral from a friend or a listing in the Yellow Pages can lead to specialists who can help.
Choosing Where to Die
Birth and death are consequences of life. They happen to every one of us. Where birth is often a joyous occasion, death is often a sad occasion. But it not need be. It is hard to let go of someone we are close to but death also releases the loved one from pain, anxiety and unhappiness. For a caregiver, death is a welcome relief from years of sacrifice, stress and financial burden. And for those who believe in a life after death, a loved one has been released from a life of burden to a life of happiness.
Regardless of religious belief, the death of a loved one can often be a spiritual experience. But dying in the wrong setting can often lead to the departure of a loved one being an upsetting experience for the family. When a person expires, at peace in his or her own home, in a familiar setting and surrounded by loving family, that death can be an experience that the family cherishes forever. When a person dies in a hospital or nursing home amid the confusion of busy workers, tied to tubes and noisy machines and agitated by the lack of a familiar setting, that death may be remembered as an unsavory experience.
A recent survey by the End-of-Life Care Partnership, a Utah nonprofit end-of-life support group, sheds some additional light on the preference of Utahns where they would have chosen to die. A random phone survey of 150 survivors of recently deceased people was conducted. The deceased ranged in age from 23 to 100 but the mean age was 74 and over 75% of those who died were 65 or older. Over 80% of the respondents were spouses or children with the remainder having some other relationship to the deceased. The chart below indicates where the decedent's actually died.
|Place of Death||Home||Nursing Home||Hospital||Other|
About 54% of the subjects died where they wanted. This means the other half of the group were denied their preference of their place of death. Those who were 65 or younger more often died at home (55%) and 97% in this group preferred their home as a place of death. Of those over 80, 38% actually died in a nursing home whereas 76% of those over 80 wanted to die at home. Comparing their last desires to where the study group actually died indicates we are doing a very poor job in meeting the end-of-life wishes for terminally ill patients. The study also compared these results to national statistics reporting where death occurs and found that people from Utah died more frequently at home than people nationally. Also studies done nationally indicate that those who are currently living, predominantly would prefer to die in their homes.
The person who is dying can choose the setting if he or she wants. There is no reason to die in an institution unless there is little time to transport the person to a more familiar environment or unless a person specifically wants to die in a facility. A person who is cognizant always has complete control over the medical care he or she receives. If the person who is terminal cannot make such a decision, then the family can. There is no reason for anyone to accept death in an environment not of his or her choosing. Too often people accept the situation and don't act aggressively in making their needs known. Too often for a loved one at home, who is dying, and who is in crisis from pain or other acute attack, calling 911 becomes the first option. The loved one in crisis is transported to a hospital where death may occur. With proper planning a crisis need not result in transportation to a hospital emergency room.
Palliative end-of-life care is now a commonly available alternative for people at home who are in the last stages of their life. This could be hospice or some other form of palliative care. A crisis under palliative care would result in a call to the attending nurse or doctor and based on prior arrangements or advice, the crisis would be handled without calling an ambulance. We recommend that all terminally ill patients and their family make planning for death, using palliative care, a routine part of the preparation for the end of life.
Our purpose in discussing this subject is not to pass judgment or to create controversy but simply point out that there is a growing movement for people to end their lives in order to avoid suffering from a debilitating terminal illness. And people seeking assistance of others, primarily the medical profession, to help them take their lives is becoming more common.
Assisted suicide basically hinges on a religious debate as to whether suicide is morally right or wrong. Those who profess no religious foundation for their actions may not see a moral problem with assisted suicide. There is however the legal issue which makes it unlawful in all states except for Oregon . Oregon has had an assisted suicide law on the books for a number of years.
Other cultures will condone suicide under certain conditions. For instance in Japan a person can take his life to protect his honor. It appears that in Muslim culture, suicide is a noble act when one destroys enemies in the taking of one's life. But even in our society, suicide is forgiven when a person sacrifices himself for the greater good of saving others.
Here is the position of the American Medical Association on allowing a member of the medical profession either assisting someone to take his or her life or in an act of compassion -- called euthanasia -- taking that life without permission.
Euthanasia is the administration of a lethal agent by another person to a patient for the purpose of relieving the patient's intolerable and incurable suffering.
It is understandable, though tragic, that some patients in extreme duress-such as those suffering from a terminal, painful, debilitating illness-may come to decide that death is preferable to life. However, permitting physicians to engage in euthanasia would ultimately cause more harm than good. Euthanasia is fundamentally incompatible with the physician's role as healer, would be difficult or impossible to control, and would pose serious societal risks.
The involvement of physicians in euthanasia heightens the significance of its ethical prohibition. The physician who performs euthanasia assumes unique responsibility for the act of ending the patient's life. Euthanasia could also readily be extended to incompetent patients and other vulnerable populations.
Instead of engaging in euthanasia, physicians must aggressively respond to the needs of patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.
Physician-assisted suicide occurs when a physician facilitates a patient's death by providing the necessary means and/or information to enable the patient to perform the life-ending act (eg, the physician provides sleeping pills and information about the lethal dose, while aware that the patient may commit suicide).
It is understandable, though tragic, that some patients in extreme duress-such as those suffering from a terminal, painful, debilitating illness-may come to decide that death is preferable to life. However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician's role as healer, would be difficult or impossible to control, and would pose serious societal risks.
Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Multidisciplinary interventions should be sought including specialty consultation, hospice care, pastoral support, family counseling, and other modalities. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.
The AMA does not condone such actions and the statements imply that a physician engaged in such practice would be committing an undesirable act not in keeping with the purpose of medicine. But notice also that the AMA does not prohibit such activity.
This leaves open the possibility that medical professionals living in a state where euthanasia under certain circumstances or assisted suicide might be legal, could engage in such a practice if they chose to.
The biggest problem with using suicide to avoid prolonged suffering at the end of life is the effect it has on family. If there is no family or the family has been consulted and is at peace with such a decision, then suicide might be acceptable. But our society does not generally except suicide and for someone to take his or her life willingly could be a great psychological blow to the family. The stigma, guilt and shame a family may carry from someone committing suicide could cause emotional wounds in family members for the rest of their lives. Anyone, not suffering from severe depression--which can cloud rational thinking, should be counseled to consider the consequences of suicide before using it as an option to avoid the distress of an unpleasant natural death. The person contemplating suicide may not know of options other than suicide, such as treatment for depression and hospice care and pain management
When Death Occurs
When a loved one dies at home, family or others who are there must often cope with the reality of the dying process. We recommend strongly that when a person is first considered being terminal, the doctor should be asked to order hospice care. We cannot stress enough how hospice care can help those involved get through a death at home or even in a care center. Oftentimes the family waits until a loved one is well along towards the end of life before hospice is considered.
Hospice is generally used for cancer patients because it is often easy to determine in advance whether a person will survive or not. If the cancer is not cured and continues to spread, death is usually inevitable. Whether that occurs in a matter of weeks or months is not important to the doctor prescribing hospice. The only requirement is the doctor must have a reasonable expectation that his patient cannot survive beyond six months. Sometimes hospice patients can receive care for years before they succumb.
For other medical conditions hospice may be just as appropriate but oftentimes the family fails to inquire or the family doctor simply doesn't consider it. Hospice should be considered for such conditions as congestive heart failure, advanced diabetes, advanced lung disease, advanced autoimmune disorders, advanced kidney disease and so on. Even in the absence of any medical condition, a person can still qualify for hospice if he or she is deteriorating rapidly and overall health is declining. Another condition often overlooked for hospice is advanced dementia or Alzheimer's disease. Family often wait until a loved one starts shutting down before hospice is ordered. Or sometimes hospice is not even considered for Alzheimer's because doctors are so used to using palliative care only for cancer. If a loved one is not improving, family should always ask or even press for hospice. Remember not to wait until close to the end but order hospice at an earlier stage since it will help provide the necessary transition to the death of a loved one.
Why are we so adamant about using palliative care? Because these services focus on dying patients and will help the family get through not only the death but also give physical and spiritual comfort to the person dying as well as offering bereavement support after the death. We simply can't stress enough the importance of using this type of support when the end is near.
When a person is close to death, physical changes occur. Blood flow slows down and fingers and toes may start turning blue or black. Breathing is labored, there is a rattling at the back of the throat and the breathing process may even cease for long periods and then resume again. A loved one will be cold and it is important to provide blankets for warmth. A loved one may be confused or he or she may simply sleep a lot. Since these changes will be noticeable to the caregiver, a call to the hospice will receive immediate response with either a visit or instructions over the phone.
Remember hospice is on call 24 hours a day and the service is there to provide exactly this kind of support when death is imminent. Because of this support, the caregiver and other family members will be able to spend more quality time at the bedside of their loved one. Their fears for their loved one will be dealt with by a staff that can be relied on for knowing exactly what to do. Supportive services with the death of a loved one can make a huge difference in the way family handle the consequences of the death.
After death occurs, the hospice workers will also make arrangements for a funeral home to pick up the body. They will also help clean up any soiled bedding and talk to the attending physician about other follow-up, say an autopsy.
Coping with the Loss of a Loved One
Understanding Bereavement, Grieving and Mourning
Bereavement or grieving is the process and period of time during which someone suffers grief from the loss of a loved one. Mourning is a public display of grief. In our culture, mourning is not an officially prescribed ritual except perhaps for certain religious groups. In other cultures it can become a prolonged public display lasting for many days or even many weeks. This might include multi-day public wakes, the use of professional mourners, the wearing of black attire, remaining sequestered in the home or the prescribed use of religious rituals.
Grief is a condition experienced by all where someone suffers a loss of another person who is close. When we love someone and they die, the feeling of loss can often become an overpowering experience. It is almost like a part of us has been torn out and we can't cope with the feelings it brings upon us. Grief is a normal part of our human experience. As human beings, we work together and rely on each other as a part of our existence. Human culture could not exist without this inter-cooperation. This reliance on others, especially someone we love, becomes over time intertwined into the function of our brain. When a loss occurs, our mental process must physically readjust to a new reality and the period of grieving is the process we go through to retrain our minds.
Even though no one really ever completely recovers from the loss of a loved one, most of us tend to find strategies that allow us to push it into our distant memory. It lingers there and we can retrieve it from time to time but it does not evoke the same powerful emotional response it once did. On the other hand, some people simply never deal with the emotions of grief and it remains in the forefront of their minds for a long time if not forever. This can have a powerful disabling effect on a person and may prevent that person from leading a normal life. It is extremely important to learn to deal with grief not only for personal reasons but for the sake of other loved ones who are still alive.
The intensity of the grief experienced and the subsequent ability or inability to deal with it are often a result of the nature of the loss itself. When a death is anticipated from a long illness or because of extreme old age it is often easier to deal with than an unexpected death. The time between knowing that death will come and the actual death allows for the grieving process to take place in advance. A spouse, children or other close people will rehearse in their minds many times over what will happen when a loved one is gone. This helps prepare them for the day it will happen and often shortens the grieving period. On the other hand, even with an anticipated death, sometimes two married people are so close that when one dies the other is completely lost and never fully recovers. It's not surprising when the survivor dies soon after.
The most difficult death to deal with is a sudden death involving violence or a suicide. Not only is the unexpected event a shocking experience but the nature of the death also leaves the survivors feeling violated, guilty and unprepared. Normally deaths of this type require professional assistance from a counselor to help the living cope with the extreme grief such a death can cause.
There is no timetable for bereavement. Every person deals with it in his or her way. For some the process requires but a few weeks and they can go on with their life as before. For others it may take years. And for some grief becomes a chronic daily burden and if that person doesn't deal with grief then it can prevent one from living. Also chronic grief often results in depression. If the intensity of the grief does not diminish and there are problems with eating, sleeping, continuing feelings of guilt or the inability to function, professional assistance is needed.
Managing the Grieving Process
Some authors like to break down the grieving process into stages. The reason for this is so that those grieving can recognize if they are making progress towards resolving their grief. Recognizing the various emotions associated with the process will help a person determine at what stage they are. Here is one author's dichotomy.
Almost everyone has difficulty accepting a loss. Most people simply want it to go away as if it never happened. They will tell themselves such things as "why me?", "why can't I start over?", "this seems like a bad dream" and so on. Their thinking is numb and they want to forget it, but in the back of their minds there is a deep foreboding of what happened. They can't shake the reality of their experience.
After the initial shock has worn off and there can be no more denial then there must be a reckoning. Some will express anger. Some will blame others. Some will retreat and become brooding and stoic. Each person has his own way of reacting to a loss.
When striking back at a loss no longer seems an acceptable strategy, then sorrow sets in. A person might feel sorry for himself or for others or both. A great deal of tears are normally shed and it is at this stage that one seeks comfort from others. The person in mourning may also find it difficult to do anything or to talk to anyone. Family or friends should recognize that comfort is being sought, regardless of the attitude of the person in mourning, and offer their support. But sympathy may not always be the best strategy. Encouraging activity and involvement in other things might be a better way to support someone in grieving.
At some point most people who have lost a loved one have worked through their emotions and no longer have the need to be angry or to feel sorrow. Those emotions may still be there but they are placed in the back of the mind and a concerted effort must be made to relive them. Otherwise they seem as a wisp of smoke, something seen but not recognized.
Some People can work through bereavement very quickly and resolution comes within a matter of days or weeks. They readily accept the loss, work through their anger and sorrow and are ready to move on. Unfortunately some people get stuck in one phase of the process. They may spend considerable time in denial. They may spend months or even years being angry. Or they may have gotten past the anger and they are preoccupied continually with feeling sorry for themselves.
In fact this is the test that one uses to determine if the grieving process is spent. If a great deal of one's waking moments are spent on rehashing what could have been (disbelief) , working on strategies of "getting even" (reaction) or allowing thoughts of the loss to interfere with daily life (sorrow) , then a person is not through the grieving process. By stepping back and looking at oneself as if from someone else's eyes and then recognizing the problems we have just discussed, a person in grieving can then make a decision about what to do next. This may involve seeking help from family or friends or it may involve the services of a professional counselor.
Grieving and depression are not the same thing. Prolonged grieving, however, can often lead to depression. And as we have discussed previously, depression is a major contributor to suicide in older Americans. The suicide rate of the elderly is about four times that of the rest of the population. It is therefore very important to avoid depression with the loss of loved ones. Grief may manifest symptoms similar to depression such as sleeplessness, loss of appetite or a feeling of gloom but unlike depression, grief can be set aside. One way to recognize the difference is if engaging in physical or mind stimulating activities results in the gloom going away, at least for that period of time, it is unlikely to be depression. Depression does not go away regardless of what one does.
As a general rule the grieving process is a mental process that can be overcome by retraining one's thinking. Depression on the other hand may have resulted from improper thinking but it has become a physiological problem with an imbalance of chemicals in the brain. The brain itself is not working correctly. Depression is much harder to treat. It may require medications or it may respond to cognitive therapies but the intensity of those therapies is much deeper than what one would need to work through a grieving issue.
When a person feels he or she cannot cope by themselves with grief or the potential of depression it is time to seek help. It is important for family or friends to realize that many people can't recognize by themselves they have a problem. Especially those who have become depressed. Depression creeps up over a period of time and results in mood changes and changes in thinking patterns that the afflicted person may not recognize have happened. A person with depression often feels he is "normal" and will even resist someone telling him that there might be a problem.
For those needing professional help there are two types of therapy. The first is called grief support. Grief support may simply consist of talking through issues with a counselor and recognizing the faulty thinking and implementing corrective strategies. Or it may involve group sessions with people in a like situation, again with the idea of coming away with strategies to deal with the grief problem. Grief support can be found by contacting a local hospice agency as these people specialize in helping their clients through the bereavement process.
The other therapy is called grief therapy or grief counseling. This usually involves sessions with a trained therapist to resolve underlying issues. Grief therapy is often needed when a person is dealing with very intense grieving issues. This may be a loss of a loved one in an accident or a murder or through suicide. Such losses can be so traumatic that people can't get through them themselves and require professional help to deal with it. For example, grief therapy is an automatic response for students who might experience a fellow student dying in a tragic accident, taking his or her life or using firearms in the school to take the lives of others. Grief therapists are going to be licensed therapists, psychologists or psychiatrists specializing in this practice.
Final Arrangements--Preparing the Body
In the early days of our country when a person died, members of the community would come together, wash the body, clothe it and prepare it for burial. Then often members of the community or family would pay their respects by coming to the home of the deceased for a viewing. Finally, a day or two later, there might be a funeral service followed by a burial. There were no fancy caskets, no embalming (except for a period after the Civil War) and no cemetery vaults. The practice of burning a body after death in a furnace or funeral pyre was not generally done. As a consequence of our history, our culture has become accustomed to preserving the body for burial. This is not necessarily true in other cultures. Hindus and Buddhists almost always cremate their loved ones.
The period of time between interment in a mausoleum or burial in the ground could be as much as a week or more, owing to the need to notify members of the family who are living far away, allowing them to travel to where the interment will take place and allowing time to make arrangements to buy burial plots and so forth. Nowadays, funeral homes and undertakers usually have refrigerators to preserve the remains while arrangements are being made. Also it is common tradition to have a viewing either a day or two before the burial or funeral or just prior to burial or funeral.
Embalming is a common practice in the United States and Canada but is generally not as popular in the rest of the world. For some, embalming is a way of providing respect by retarding the natural decay of human flesh. For others and for certain religions embalming is considered a desecration of the body. Studies done at the University of Tennessee reveal that all bodies decompose, embalmed or not. It just may take longer for the embalmed body to return to the earth. Embalming fluid may also contain dye to make the skin look more lifelike. The embalming process also allows for funeral home workers to safely "restore" the body by repairing injuries, filling out the face through padding, forcibly closing the jaw, injecting collagen and using cosmetics to make the deceased appear "natural", as if he or she were slightly younger and in good health. It is also traditional to dress the loved one in formal or favorite attire. Families appreciate seeing their loved ones in a favorable light. It helps them remember the departed one in a pleasing setting. A common phrase used by those filing through a viewing is "He/She looks so good!" On the other hand, lifelike viewings are sometimes disturbing to people as well.
Embalming and restoration are not a necessary process if there is no viewing or for that matter even if there is a viewing. Even though viewings would be safe without embalming, very few funeral homes will consent to viewing without the process. In many states there are no laws requiring embalming except if bodies are transported across state lines, shipped internationally or shipped commercially. It is never required for the first 24 hours in any state; 22 states require embalming after 24, 48, or 72 hours, but refrigeration is usually an alternative option. (Refrigeration is not an option in Alaska , Minnesota or North Dakota. ). Under certain circumstances, medical examiners may require embalming pursuant to an investigation or if death were due to contagion. Due to the use of refrigeration, the remains can be transferred to a coffin for a funeral or graveside service without incurring this additional cost. For funerals and viewings conducted in the home, dry ice is often used to retard decomposition.
The cost of embalming and restoring as well as the cost of expensive coffins and vaults can be avoided by using cremation. Cremation is typically a much less expensive process and some families prefer it to keeping the body in its natural state. It is also a simpler process as far as making arrangements for viewings and services if such services are not desired. Since a funeral and interment can often be the third largest expense a family can incur after purchase of a home or a car, many families simply must find a less expensive way to provide final arrangements for loved ones. Some don't have the money for expensive services but still want to provide respect for a decedent and not simply put them in a pine box and place them in the ground. For these reasons and many others cremation is becoming more popular. Estimates are that 20% to 30% of all last arrangements use cremation.
It is interesting to note that legally in more than half of the states; the deceased person has no postmortem rights to what happens with his body. In those states, the family does what it wants, although many times the wishes of the departed are respected if that person made his or her wishes known before death or has created some binding condition in a will that forces the family to comply. If the decedent wanted a traditional burial, the family may choose cremation. If the decedent wanted cremation, the family may choose a traditional burial.
What is often not understood about cremation is that it does not prevent having a funeral or graveside service or even burying the remains in a grave. The body is still there, it is just in another form. In fact a traditional viewing and funeral service can even be arranged before the cremation takes place. If the family does not want to purchase an expensive casket for a pre-cremation, traditional service, a casket can be rented. Family may also view the cremation process. In most states there must be a waiting period before cremation can occur, for legal purposes, since there is no way to identify cause of death after cremation. Also some states require permission from a medical examiner or corner for the same reason. If it is a suspicious death, obviously cremation will not be allowed.
The process consists of first removing a possible heart pacemaker and external metal objects from the body and then it's common to place it an inexpensive wooden or cardboard coffin. But needing a coffin for cremation is not always required and simply adds to the expense. The body and or coffin are placed in a very hot furnace until everything is reduced to ash. This takes several hours. There may be remnants of metal parts such as artificial joints and there may remain a few pieces of bone. The metal parts are removed and the ashes and bone are processed to a very fine powder. The family has chosen beforehand a suitable receptacle or urn and the ashes are placed in it. The family can choose to have a funeral, a memorial service, or nothing at all. The ashes can be placed in a mausoleum in a cemetery, they can be buried in a cemetery plot, they can be kept in someone's home or they might be scattered in a suitable location.
Services centered around a cremation can be considerably less expensive than traditional funeral services. It is estimated that the average cost of a funeral in the United States is about $8,000. Interment using cremation can cost anywhere from $500 to $2,000. The less expensive version would entail only a cremation and a scattering of the ashes in an appropriate location. This would also mean no services and no memorialization and no urn. The more expensive version might entail a funeral service or memorial service, an expensive urn and memorialization in a cemetery.
Cremation is forbidden by Orthodox Judaism, the Eastern Orthodox Church and Islam. The Roman Catholic Church has allowed cremation since 1963 as long as traditional ceremonies respecting the body for purposes of resurrection are maintained. The ashes cannot be scattered or kept in the home but must be buried or entombed. Some Protestants allow cremation, some discourage it and others take no position.
Funeral Services and Funeral Service Providers
Probably the most common arrangement for closing out the life of a loved one is to have a funeral service and a burial in a local cemetery. Ostensibly funerals are touted as a way to honor the person who has passed away but in reality funerals are for the surviving family. The funeral is part of the mourning process. If the family has been proud of their loved one or if the loved one has had some standing in the community such as being a scholar, a doctor, a lawyer, a politician, a church leader or someone famous, the family wants the community to recognize their family member. They want to "show off" the deceased. As a general rule, the greater the status the more lavish the funeral. This recognition from the community and the emotional support from those who attend, in turn, help the family cope with the loss of their loved one. Here's an excerpt from the national Funeral Directors Association about funerals.
"Funerals fill an important role for those mourning the loss of a loved one. By providing surviving family members and friends a caring, supportive environment in which to share thoughts and feelings about the death, funerals are the first step in the healing process.
The ritual of attending a funeral service provides many benefits including:
- Providing a social support system for the bereaved.
- Helping the bereaved understand death is final and that death is part of life.
- Integrating the bereaved back into the community.
- Easing the transition to a new life after the death of a loved one.
- Providing a safe haven for embracing and expressing pain.
- Reaffirming one's relationship with the person who died.
- Providing a time to say good-bye."
If the deceased person was not respected by the community or the family, it is less likely that a formal funeral service will be held. But it is also possible that regardless of the status of the person who has died, the family may not want a public viewing and service because they do not want the attention of the community. Oftentimes they will simply have a burial service at the grave site for a very select number of people. Or they may choose cremation and scatter the ashes in a private ceremony somewhere that would have been special to the person who died.
Concerns from consumer groups that funeral homes or undertakers were taking advantage of family and asking them to make purchase decisions when they were most vulnerable to manipulation, after the death of a loved one, led to the Federal Trade Commission publishing rules for the sale of funeral services.
The Funeral Rule prohibits specific misrepresentations in six areas (FTC 1997):
- Embalming - Funeral homes may not tell consumers that embalming is required unless a specific state or local law requires it. In MOST STATES, embalming is not required by law.
- Casket for Direct Cremation - Funeral homes cannot tell consumers that state or local law requires them to buy a casket if they are arranging a direct cremation for the cremation itself or for any other reason. An alternative container must also be made available.
- Outer Burial Container - Funeral homes cannot tell consumers that they are required to buy an outer burial container, unless a specific state or local law requires it. They also must tell consumers that state law does not require them to purchase an outer burial container.
- Legal and Cemetery Requirements - Funeral homes cannot tell consumers that any federal, state, or local law or particular cemetery or crematory requires them to buy a particular good or service, if that is not true.
- Preservative and Protective Value Claims - Funeral homes cannot make any representations to consumers that funeral goods or services will delay the natural decomposition of human remains for a long term or an indefinite time.
- Cash Advance Items - If funeral homes mark-up the charge on cash advance items or receive a commission, discount, or rebate that is not passed on to the consumer, they cannot state that the price charged for the cash advance item is the same as its true cost. This rule, however, does not prevent them from adding a service charge, nor does it require them to disclose the amount of that charge to the consumer.
Other Misrepresentations--other kinds of misrepresentations, though not specifically prohibited by the Funeral Rule, are nonetheless illegal. The FTC Act prohibits deceptive acts or practices. Likewise, the consumer protection laws of each state prohibit deceptive practices. The federal rule does not apply to businesses that sell funeral services only (cremation as an example) or goods only (caskets or grave markers as an example).
In times past family organized the funeral and the burial themselves. An undertaker may have been used for preparing the body for burial, providing a casket and providing a hearse to transport the body to a cemetery. Modern day funeral homes have made the arrangements more convenient, but also much more expensive. The funeral home or funeral director can handle everything from
- picking up the body after death,
- securing the death certificate,
- providing embalming,
- providing restoration services,
- printing funeral programs, sending invitations, providing guest books, etc.
- providing space for viewings and funeral services,
- submitting obituaries,
- obtaining required permits,
- making claim for Social Security or veterans benefits,
- providing a casket,
- securing cemetery lots,
- providing outer burial chamber, liner or vault,
- providing transportation to the cemetery,
- moving the flowers from the funeral to the grave,
- arranging for the opening of a grave,
- making arrangements for a graveside burial service,
- arranging for closing the grave
- making arrangements for grave markers
- and possibly more.
Any of these services might be bought separately and the family could make arrangements for the balance or forgo such things as viewings, embalming and restoration, but it is more common the family will buy a "full service package" which includes all or most of the services outlined above.
As a general rule family-owned funeral homes or mortuaries are in the business of providing trusted service to members of their community. There may be a few that take advantage but by and large integrity is an important part of most providers operations. Funeral directors have responded to criticism of their industry of pushing people into expensive and elaborate funeral services by providing more of the low cost services some families may desire. Not only do they offer cremation or simple burial without trying to pressure families into more costly programs, but a recent trend has been to offer memorial services instead of an elaborate funeral. With a memorial service there is no viewing, no embalming, usually no flowers except maybe a few at the grave and there is a simple service designed to memorialize the departed loved one. The service can be held at the grave site or it can be held at a suitable meeting place later during the day or a few days following the burial. A memorial service can save considerable money over a traditional funeral.
Some groups feel that funeral directors monopolize the business of final arrangements for the dead and that they might be crowding out competition or influencing state legislatures to ban other types of similar services. The concern is that by discouraging competition, funeral homes can charge more money than is reasonable for their services. In fact eight states require using a mortuary for funeral arrangements if a casket is involved. In these states only funeral homes are allowed to sell caskets.
There is also concern that individual funeral homes are being purchased by large corporations and the public is not aware of this, since the original business name will be retained. As a general rule people have more trust in the local family-owned mortuary than in a faceless corporation. Funeral directors or morticians are often highly respected citizens in the community. By owning all of the funeral service providers in a given area, the corporation essentially has no competition from other homes and can charge higher prices for services. The recommendation is to check prices and plans before picking a particular funeral provider. Federal law requires them to give consumers accurate, detailed and itemized quotes over the phone. In 42 states there are other alternatives to a funeral home or mortuary.
In those states where market forces prevail, a call to several funeral service providers in the area will demonstrate that the family may not have to pay $5,000-$10,000 for a funeral. Some competitive providers don't follow the funeral home model, with fancy showrooms, beautiful hallways, very expensive caskets and lavish chapels or meeting rooms. They simply provide the services such as placing the body in the casket and transporting it to a burial site or arranging for cremation. It is up to the family to take care of the rest of the details. These companies may provide help with organizing a funeral or in dealing with the cemetery but these businesses are more often oriented towards selling caskets at competitive prices and providing guidance with the rest of the final arrangements.
In fact some companies only sell caskets as the casket is usually the largest single cost of a funeral. The "funeral rule" requires funeral homes to accept caskets from any source, not just their own. So a family can save money purchasing a casket from a casket dealer and using a mortuary to provide the other services. Caskets can also be ordered over the Internet. There are also many local artisans that will fashion caskets and sell them directly to the public at very reasonable prices. A list of these can be found on the Internet by searching for "caskets".
Alternate providers of funeral items and services can be found in the Yellow Pages under the headings "funeral homes", "funeral information" or "funeral services". Many of these service providers may offer funeral services in the range of $1,500 to $3,000.
In response to what they consider abusive pricing in the funeral industry, some consumers have organized nonprofit memorial societies. There are memorial societies in most states and they can be located in the Yellow Pages under the categories of "funeral homes" or "funeral information". Or they can be located on the Internet. These groups provide consumer counseling and written advice on alternatives to using high cost, funeral home "package" plans.
- They will provide documents and instructions for preplanning funeral arrangements
- They will provide reasons for not embalming.
- They will provide lists of reliable and low cost undertaker services.
- They will give reasons and instructions for cremation.
- They will give advice on where to go for quality caskets or basic funeral plans at a reasonable price.
- They will provide instructions on conducting memorial services instead of funerals.
- They may provide numerous low cost package programs as an alternative to using a funeral director to arrange these options
Social Security will pay $255 to be used towards a burial. It's important to follow up and apply for Social Security burial benefits even though it's not a lot of money. The Veterans Administration will also provide cemetery space for veterans. If the veteran's family can't afford a cemetery plot the VA will provide one in a veteran's cemetery. The VA will also pay for opening and closing the grave, for a standard marker and for the burial itself.
The Cemetery, a Place for Memorialization
In earlier times when our country was mostly rural, loved ones were often buried in a special area reserved for family near the family home or on the family property. And generally people in rural areas can still exercise this option. Today, where most people live within the boundaries of a government community, burying a loved one on one's property would not be allowed. A cemetery is the only option for interment of a body or the secure storage of one's ashes.
A cemetery is a place where one can go to remember loved ones. The grounds and markers are designed to create a memorial to people who have passed on. Larger cemeteries often have well-kept trees and lawns and perhaps even sidewalks or benches. They are typically in neighborhoods that are quiet and if a family member wants to spend some time there the environment is conducive to that.
The concept of providing a memorial to someone who has died is fundamental to humanity. All cultures past and present have some way of identifying a place to remember loved ones by. This is also an important part of providing closure for the grieving process--to have a place to identify our loved ones with. One of the problems with scattering ashes in a public place or over a body of water is that there is often no ability to identify that place and memorialization cannot take place. It may be important to some members of the family to have a special place. Cemeteries make allowances for cremations by providing places where urns can be placed. Some cemeteries also have special garden areas that allow for scattering of ashes. A memorial plaque can also be installed reminding the family where the ashes were scattered.
Wealthy rulers, politicians, people of status and rich people are the most ostentatious in having memorials in their honor. Consider the pyramids as an example. But even in local cemeteries it seems that families compete with each other by trying to erect grave markers or monuments that are better than the ones around them. Some cemeteries recognize this tendency and will restrict the size or design of grave monuments.
Probably the most important thing to remember in picking a cemetery is picking out a location that makes it convenient for the survivors to visit in the future. A cemetery halfway across the country that is picked simply because it was the birthplace of the decedent is not being considerate to the family that may be hundreds of miles away. On the other hand if family are scattered all over the country, location may not be a problem. A second important consideration is also a convenience issue. Many families have parents, grandparents, aunts and uncles and children buried in the same cemetery. This makes it convenient for family members who want to remember more than one loved one to do so by visiting only one location. The cemetery where the rest of the family is buried should be the logical choice. Oftentimes a person will pick his or her cemetery plot based solely on the atmosphere of the place and not take into account the convenience issues expressed above. Being considerate to the surviving family is an important issue in picking a cemetery.
There are presently two types of cemeteries. The first is the traditional cemetery that has been used for perhaps hundreds of years and is filled with upright monuments of stone or above ground mausoleums. The second is a newer concept called a memorial park or memorial garden. This is an effort to equalize everyone who is buried by not allowing any one family to erect monuments different from anyone else. The only markers allowed are ground level tablets of a prescribed size. The Memorial Park is designed to resemble a garden where people can repose or reflect in beautiful surroundings. There may be fountains, sculptures, inviting buildings, water features and so on. Some cemeteries use both concepts.
Here are some issues to consider or issues to generate questions to ask when buying a cemetery plot when preplanning funeral arrangements.
- The plot is not owned, only the usage of the plot for a perpetual interment.
- Prices will vary considerably but generally be more expensive in urban areas with high land values and less expensive in rural areas.
- If a plot is purchased but the family desires another cemetery instead, many cemeteries have exchange programs where the equivalent values can be exchanged between cooperating cemeteries, but many cemeteries do not have exchanges or the exchanges may not work as advertised and the family may be stuck with an unwanted cemetery lot.
- Some cemeteries may be willing to repurchase plots.
- Grave liners or vaults are not required by law but some cemeteries may require them to prevent the ground from sinking.
- Generally plots cannot be resold privately to another individual.
- Most cemeteries that sell memorials place restrictions on the installation of memorials purchased elsewhere. This limits the consumer's choice and drives up the price.
- Most cemeteries will only allow their own personnel to open and close graves.
- Cemeteries may use high-pressure tactics to get people to make a decision on the spot.
Pre-planned Funeral and Burial Arrangements with No Formal Funding
Laws in all states generally hold that funerals benefit the survivors and the person who has died has very little to say in the manner in which services are provided for his or her final interment. In most states a person can express the method of final arrangements in a will but in reality, unless there is a sizable estate and the division is contingent upon probating the will, very few families actually execute a will in probate court. Even if there is a will at death, there is usually no reason to respect it, since most personal assets and savings have been transferred in fact, through beneficiary arrangement or by default to the survivors and the home may pass by joint tenancy, by separate probate or in a trust. Most often wills are never used and remain at home in the drawer or in a safety deposit box.
This does not mean; however, that someone can't plan in advance for his or her funeral. There are reasons that people want to plan in advance.
- They have been through final arrangements with their own loved ones and experienced stress in making decisions dictated by time constraints.
- They have been concerned with what the loved one would have wanted for his or her final arrangements.
- They have been troubled by how much they should spend and not be considered spendthrift's by those who attend the funeral.
- Or they have wondered if the choice of funeral speakers, music and other recognition rituals had been what the loved one would have appreciated.
As a result, many older people want to spare their own family the stress they went through in burying their loved ones. They want to plan in advance for their funeral.
The person planning final arrangements provides a written plan for the family and possibly for a trusted funeral service provider outlining the details of what is to happen. A family meeting is arranged and an agreement is reached that the family will respect these last wishes. However, this is not a legal arrangement. Money can be set aside for this plan or the family may find money from other sources. If there is permanent life insurance, a portion or all of those proceeds can also be used to pay for the services and goods. The funeral services provider agrees to follow through with the plan upon approval of the family after the death. The following issues should be considered when designing a pre-arrangement plan.
- If a funeral service provider is selected in advance, will that provider offer similar services in the future, try to pressure the family to "buy up" to more expensive options or even be in business?
- Will the desired funeral items such as caskets, vaults or liners or grave markers be available in the future? If not, are contingency plans provided?
- About half of the states allow a disposition authorization form to be signed before death choosing cremation or burial as a final disposition. This bypasses approval by the family. If you live in such a state and you want this provision have you checked with your funeral service provider for availability of signing the form now?
- If there is no pre-arrangement with a service provider, will the family know how to properly shop for a funeral?
- In some states, if cremation is desired, all family members must agree. Has this been worked out before hand?
- Where will the money come from to provide for the funeral and burial and if it is to come from savings or insurance, has enough been set aside to allow for inflation with future costs?
- Is the funeral program flexible enough to allow for participants who may not be available at the time of the funeral?
- Do all family members agree on the price range or will one person bolt and insist on spending more?
- If a nonpublic interment with no viewing, no services, no flowers and no fancy caskets is desired will the family respect this request?
- If the person having preplanned, moves to another state is there a contingency plan?
About half of all states recognize the right of the deceased to pick the final disposition of the body -- either burial or cremation. In those states with no disposition laws, courts will likely recognize a written declaration by the decedent on his or her preference for disposition especially if the document came from a state that had a disposition law. Some states allow appointment of a designated agent for body disposition. This is most useful as it provides someone who can represent the interests of the person making the request after death occurs.
One way to informally provide future funds for a prearranged funeral and burial is to buy a life-insurance policy specifically designed for this purpose. And of course anyone who has an existing life-insurance policy that is a permanent contract -- will not lapse at some future date -- can use all or a portion of that death benefit to pay for future funeral costs. Traditional life insurance policies are generally designed for younger people who are in reasonably good health. In addition these policies are usually not available in amounts less than $50,000 in face value. Older people may qualify for these policies, but many elderly who are in good health may not want to buy a policy that large since it could be very expensive. Some life insurance companies specialize in permanent life insurance burial policies for older ages and for people with health problems.
These so-called "final expense" policies are designed to accommodate smaller amounts of death benefit and people who might normally be uninsurable through traditional policies. Available death benefits may range from $2,500 to $25,000. As an example, for a 65-year-old in reasonably good health, a permanent policy with a $10,000 death benefit might cost about $42 to $87 a month depending on the gender and smoking habits of the applicant. The policy will generally have cash value after a certain number of years and may also increase in death benefit value in future years. For those who have cancer or heart disease or life-threatening health problems or in some other way may be uninsurable there are so-called "guaranteed issue" policies. A $10,000 policy like this for a 65 year old might cost $75 to $87 a month depending on gender. In order to protect itself from too many premature death claims with guaranteed issue policies, the insurance company usually has some kind of a waiting period on these policies before a benefit will be paid. One arrangement might pay nothing if death occurs in the first six months, 50% of the death benefit in the second six months, and the full death benefit after the first year. Another policy might simply exclude payment for any death claim in the first two years. This policy would probably be less expensive than the one quoted above.
A major problem with final expense policies is that overhead costs, claims, commissions and other costs associated with managing these contracts make premiums much higher in proportion to death benefit than with larger policies of $100,000 or more. Final expense policies are also generally designed to be more lenient in covering the death of policyholders who may have major health problems. And those final expense policies that guarantee coverage regardless of health are obviously going to pay out death claims sooner than a policy that required someone to be in good health when they applied. All of these factors make final expense policies very expensive relative to the death benefit.
Someone in good health buying one of these policies could live a long time. Premiums are generally set up to be paid monthly or yearly as long as the person lives. Some people living a long time and paying into one of these policies could end up paying significantly more in premiums than the policy would pay at death. Such a policy is only a good idea if a person is in poor health and not expected to live very long. For someone in good health, putting money away in a savings account is usually a better option.
Some people use a memorial society to help with preplanning funeral arrangements. One popular group is the Funeral Consumers Alliance which has affiliates in most states. Memorial societies can be found by looking under funerals in the Yellow Pages or local affiliates can be found by going to www.funeral.org.
PreNeed (Pre-Paid) Funeral and Burial Plans
Advantages and Disadvantages of Prepaid Plans
Another way to plan in advance is to sign a formal contract called a "preneed funeral plan", where money is held in a trust, in an escrow account or paid through an insurance policy. Parts of or all of the funeral service and burial are designed in advance and prefunded in advance and the family has little to do but show up. This type of planning has become very popular in recent years. A survey conducted by the AARP in 1999, found that two out of five people over age 50 had been approached to pre-purchase funerals and burial goods and services. An AARP survey in 1998 indicates that 32% of all Americans over age 50, roughly 21 million people have prepaid some or all of their funeral and or burial expenses (but not necessarily through a formal preneed plan). Breaking that down, about 25% of the over age 50 population have prepaid for their burials (cemetery plot, mausoleum or niche), 18% have prepaid for headstones, urns, caskets , grave liners or vaults, opening and closing of graves and so on and 13% have prepaid for goods or services from a funeral home or funeral director. The same article indicates that over $25 billion is being held in pre-need trust funds. Roughly another $25 billion is waiting to be paid out in life insurance benefits. Prepaid or preneed funerals and burials are big business.
Prepaid funerals and burials funded privately by the family, or paid from an individual life insurance policy and arranged informally through a funeral home or funeral director, are generally not subject to state regulation. Any formal arrangement through a second party or involving a contract is subject to regulation in all states. Each state has adopted different rules as to who can sell these plans, what the plans can provide, what contract provisions must be, how the plan is to be funded and what recourse purchasers might have in the event of fraud or default. All states call these regulated plans "preneed" funeral and burial arrangements.
Here are some advantages to why one would want to buy a preneed plan for funeral and burial services and goods.
- It provides peace of mind knowing these arrangements have been made in advance
- It avoids the burden on family members to make decisions when they are most vulnerable to manipulation.
- It allows one to virtually control from the grave by determining in advance the funeral products, funeral services, burial products and burial services that one would prefer having for final arrangements.
- It helps the family to avoid taking loans, arranging finance plans, raiding savings or selling assets to pay for a funeral and burial.
- It guarantees (for many contracts) that if products and services currently purchased are not available in the future, equivalent substitutes will be provided at no additional cost.
- It locks in guaranteed prices (available with some contracts) forever.
- It allows for inflation in future costs (for those contracts that do not guarantee prices) by investing money in an interest-bearing account or buying life insurance that increases in value over time.
- Depending on the contract, it may allow for transfer to another funeral home or for partial or full refund.
Unfortunately, there are also problems with prepaid, preplanned final arrangements.
- With some trust fund and insurance funding options there may be no refund if someone wants to cancel the plan in the future.
- If a purchaser moves to another state there may be no transfer options or there may be different rules governing the funding option.
- In some contracts, interest earnings on investments resulting in excess money not needed for the plan may be retained by the funeral home or funeral director.
- On installment plans interest may be charged but not credited to the account.
- In certain insurance funded contracts, the ownership or death benefit may be irrevocably assigned to the contract holder, preventing the purchaser from enjoying ownership rights in the policy.
- In certain insurance funded contracts, a growth in the death benefit over time that exceeds the cost of the pre-need plan services and goods may be pocketed by the contract holder instead of being refunded.
- If the contract provider goes out of business or fails to secure 100% of the funds for future payment, there may be no recourse to get all of the money back that was put in.
- If certain services or goods that were purchased initially are not available in the future, but more expensive versions might be, the family may be forced to pay extra for those items.
- In certain insurance funded plans, if the insured dies too soon, there may have been a waiting period in which few or no benefits are paid at death, thus forcing the family to pay out of pocket for the funeral.
- Certain unscrupulous providers may have failed to provide an itemized list of services and goods or failed to identify properly, specific services and goods, thus allowing the provider in the future to substitute less expensive items or to leave out services and goods that were originally anticipated in the agreement.
What Services and Goods Can Be Prepaid?
All states allow for prepaid plans for funeral services and merchandise. This would include such things as picking up the body, embalming and restoration, rooms or chapel for viewing and funeral services, casket, vault or grave liner, transportation, permits, death certificates, obituaries and so forth. Almost all states allow for prepaid burial services and merchandise as well. Only about six states do not allow it. Burial services and merchandise might include opening and closing the grave, grave markers, vaults or grave liners, mausoleums or niches. Cemetery plots are excluded from prepaid plans in all states.
Who Can Sell These Plans?
In 16 states, anyone with a special license can sell preneed funeral plans. About the same number of states allow special license sales of preneed burial plans. If the preneed sale involves insurance, all states require an insurance license as well. Most states generally restrict sales of preneed plans to funeral homes, or funeral home directors or their employees or agents. Again if employees or agents of the employer sell insurance funded plans they also need to be insurance licensed
Most states allow for using life insurance for funeral plans and a large number of states allow it for burial plans. In those states that allow insurance, three or four insurance companies have designed policies specifically to fund preneed contracts.
A standard contract is used with all funeral providers in each state that may or may not guarantee the cost of goods and services and does not require irrevocable assignment of the death benefit to the funeral provider. Where allowed, the contract will include burial services as well.
Persons wanting a preneed contract will sit down with a Forethought agent, go over the various package plans available, choose the desired plan, apply for the insurance and sign the contract. A detailed description of services, merchandise and prices is given to the purchaser. The purchaser also agrees to provide a revocable assignment of death benefit on the policy to the funeral provider. Since the assignment of death benefit is revocable, the purchaser can walk away from the contract at any time and transfer that death benefit to another funeral home if desired. If the contract guarantees prices, however, a new funeral provider may not except those prices and may charge more money.
How Are These Plans Funded?
About six states allow the use of an escrow account to hold money paid into a preneed arrangement. An escrow account is typically a bank trust account funded by the purchaser and managed for the contract provider. Four of these states also allow for at least one other funding option as well. Rhode Island and Connecticut do not.
Most states allow for a specially established trust fund to hold money for preneed arrangements for both funeral and burial plans. A trust fund must be managed by a third-party trustee. Banks often provide this service. The trust fund may be revocable -- meaning the purchaser can remove his money -- or irrevocable -- meaning the purchaser has no claim to the money. These options depend on state rules, on the contract or whether it is a Medicaid spend down trust. The purchaser may put the money in with a series of installment payments or may put the entire amount in within a short time of signing the contract. Most states require that at least 90% of the money destined to pay the preneed plan must remain in the trust. Some states allow the trust to be funded at a lesser percentage. Some states require 100% of the money must remain in the trust.
For those trusts that are partially funded, the money not invested can be spent by the funeral provider with the understanding that the provider will have to replace it when the purchaser dies. What this means for the purchaser is in those states which don't require 100% funding, if the provider has spent the money from this trust account as well as all other trust accounts it is using for prepaid plans, when the time comes to pay for services and goods, the provider may be short of cash and may be unable to pay the balance. A handful of states have recognized this problem and they assess all preneed providers a certain amount of money that goes into a consumer protection fund to reimburse the purchaser if the provider is unable to perform.
Most states allow for using life insurance for funeral plans and burial plans. Estimates are that about 70% of all preneed plans are funded with life insurance. Using Forethought Insurance again as an example, the company offers two kinds of insurance plans starting at an $800 death benefit amount and not exceeding a $25,000 death benefit. The first policy is a guaranteed issue policy -- meaning no health questions are asked -- that is paid up either in one lump sum payment, or with three years of payments, or five years of payments or 10 years of payments. With the single sum payment policy, if the insured dies before six months, the single sum plus interest is returned. After six months the death benefit is paid in full. With the three and five-year payment policies, if the person dies before one year, premiums plus interest are returned. After one year, percentages of the full death benefit are paid based on an increasing scale each year until 100% of the death benefit is reached. With the 10-year paid-up policy the insured must wait two years before the death benefit is paid and the year-to-year increasing scale of benefits also applies. Except for the 10 year paid-up plan, none of this company's insurance plans result in an insured paying in more than the initial death benefit of the policy. The policy death benefit also increases over time to keep pace with inflationary costs of services and items if the preneed contract is not price guaranteed. Increases in death benefit are dependent upon interest earnings and other factors and are not guaranteed.
The major problem with these policies other than the single pay policy is a risk that if a person dies shortly after getting the policy, there is no death benefit to pay for the prearranged funeral plans. On the other hand, the family is not out any money because premiums plus interest are returned. It means the family now must come up with a lump sum of money that would have come instead from an insurance policy death benefit. Since the single sum payment policy will be fairly close to the actual death benefit, the return of that premium will mostly cover the cost of the preneed plan. Forethought estimates that about 70% of its policies are paid with one single sum.
The other type of Forethought Insurance policy is for people whose health might permit them to buy a cheaper premium in proportion to the death benefit. With this policy the insured gets more death benefit for less money. This policy asks for a person's health history and goes through an "underwriting" process where the company determines if it can accept an immediate risk on the potential death of the applicant. If the applicant is approved, the death benefit is in effect as soon as the policy premium has been paid. All policies provided by Forethought increase in value over time and when the insured dies the excess not used to pay the preneed plan is refunded to the insured's family.
One advantage to the Forethought contract and policy is that preneed costs may in many cases be guaranteed. Another advantage is the policy does not need to be irrevocably assigned to the funeral home. In essence the policyholder can designate whomever he or she wants to receive the death benefit. This in turn makes the contract conditional because nothing has been given to the provider in return for services and goods. This also means the contract holder can walk away from the contract at any time. The problem is the purchaser may end up losing a cost guarantee if he or she tries to use the insurance to set up a new plan with another funeral home. The new funeral home is not required to honor the previous contract but may do so.
How Are Consumers Protected from Fraud or Default?
We've already discussed consumer protection funds in eight states that are designed to repay the purchaser if the funeral provider cannot replace monies used in trust funds. A number of states allow for a full refund upon cancellation, including interest, as long as the preneed contract was revocable and the purchaser followed all provisions for obtaining the refund. A handful of states allow further legal recourse to purchasers either under the state's Unfair and Deceptive Acts and Practices Law, or by allowing consumers who have been injured to file a civil action in state court.
Prepaid Trust Plans for Medicaid Spend Down
Medicaid rules allow someone going through a Medicaid spend down -- in order to have Medicaid pick up all or part of their nursing home bill -- to retain $1,500 for funeral expenses. For many that is not enough. Most states allow potential Medicaid recipients going through spend down to put up to an additional $7,000 or possibly more, with allowances for burial expenses, into an irrevocable funeral and burial plan. Preneed plans are most often used with this spend down provision. Money must be put into a trust arrangement where the trustee will pay for funeral costs and burial costs after the death of the trust owner -- the purchaser. The trust must be irrevocable meaning the purchaser of the preneed plan has no claim on the money or interest earnings. If insurance is used for funding, the ownership of the policy or the death benefit must be irrevocably assigned to the trust. Some states may not allow insurance to be used in this type of trust. Neither cash value nor the death benefit is available to the family. Purchasers who have entered into irrevocable funeral and burial trusts may only use the funds for payment of funeral services and merchandise upon the death of the intended funeral recipient. Any excess in the trust account after payment of funeral expenses might go back to Medicaid or be returned to the local county Social Services Department in which the intended funeral recipient resided, to be earmarked for indigent burials.
Federal law protects the beneficiaries of Medicaid funeral trusts. The law allows the consumer to change funeral homes at any time prior to death without affecting the irrevocability of the arrangements themselves. If such a transfer is desired, a new irrevocable preneed agreement with the newly selected funeral home must be generated. The transfer of irrevocable preneed funds may, however, ONLY be made payable to another funeral home, or another funeral trust program.
Additionally, the law permits the beneficiary's family, at the time of need, to select different goods and services from those originally prearranged. Please note, however, that the funds in the account may only be used for payment of funeral services and merchandise. Any remaining funds in the account after payment of funeral services and merchandise must be remitted by the funeral director to the appropriate trust designated government recipient. The money cannot go back to the family.
The easy to remember phone number "211" was designated by the Federal Communications Commission on July 21, 2000 as a nationwide single source public benefit to help people find resources in their communities. This phone number service is not a business but is a collaboration effort among community nonprofit organizations in each state. Its purpose is to provide information and referral to callers who are seeking help with the ever-growing maze of health and human service providers, government agencies, and community-based service organizations and their associated programs. Information and referral services over the years have been standardized by a group called the Alliance of Information & Referral Systems. This nonprofit group trains both community and corporate information providers in how to handle requests and how to find resources. The AIRS maintains many databases and helps providers design their own database.
In 1999 the United Way of America and the AIRS formed a partnership to promote a national, standardized, information and referral service network. The intent was to have a common phone number and common service procedures that anyone in the country could call from any location. Each state would have its own database of information for local inquiries. The information and subsequent referral from calling the 211 number is designed to offer help in the following areas.
- Basic Human Needs Resource: food banks, clothing closets, shelters, rent assistance, utility assistance.
- Physical and Mental Health Resources: health insurance programs, Medicaid and Medicare, maternal health, Children's Health Insurance Program, medical information lines, crisis intervention services, support groups, counseling, drug and alcohol intervention and rehabilitation.
- Employment Supports: financial assistance, job training, transportation assistance, education programs.
- Support for Older Americans and Persons with Disabilities: adult day care, congregate meals, Meals on Wheels, respite care, home health care, transportation, homemaker services.
- Support for Children, Youth and Families: childcare, after school programs, Head Start, family resource centers, summer camps and recreation programs, mentoring, tutoring, protective services.
- Volunteer Opportunities and Donations.
After the terrorist bombing of September 11, 2001, local communities and states saw how valuable a common source of information could be in helping emergency calling centers coordinate rescue efforts, health services, infrastructure repair, availability of food clothing and shelter and locating loved ones. Dial 211 was an obvious answer to this need. The implementation of 211 has grown dramatically and by the middle of 2005 the system serves approximately 137 million Americans - over 46% of the US population. There are currently 169 active call centers covering all or part of 32 states (including 14 states with 100% coverage) plus Washington , DC and Puerto Rico . The alliance and United Way are currently seeking $150 million from Congress for two years and an additional $100 million for three more years to help expand the system to 100% of the population.
A 211 center is especially useful for long-term care issues because many of the services such as Medicaid and aging network providers don't advertise and community members often don't know where to look for those services. One state coordinator observes that a great number of 211 calls come from caregivers who are looking for services, housing, monetary support and counseling. The drawback of calling 211 is that services are only referred for government or nonprofit organizations. Callers are not given names of private care providers but are typically referred to a government agency that in turn may provide them with lists such as the health Department.
The 211 service is currently funded through local United Ways , other nonprofit organizations and business and government contributors. If the requested federal funding comes through, the $250 million over a five-year period will have to be matched dollar for dollar from local contributions. The federal funding will also place the department of Health and Human Services in charge of coordinating 211 services nationwide. This can provide central direction and administration and make the system more efficient.
Elder Mediation Services
What Is Elder Mediation?
It is amazing how quickly formerly cordial relationships between family members will sour when the family has to deal with care of elderly parents or inheritance at their death. Sometimes the consequence of dealing with the final years of elderly parents can break families apart and create long-lasting animosity. Elder mediation is a promising new tool to help families heal broken relations, solve difficult issues arising from dealing with elderly parents or prevent misunderstandings or problems from happening in the first place.
Mediation has been around for a long time but only recently is it being applied to solving problems with elder care. The term "elder mediation" is still not widely used and someone seeking services in this area would most likely contact a "family mediator". Elder mediation is a rapidly growing specialization in the area of family mediation. Family mediators typically handle disagreements and negotiations in divorce, juvenile cases, parenting disputes and the design or settlement of estate plans. As the population ages, as children move further away from their parents and as more traditional caregivers find themselves in the workforce, there is more tension being created among families caring for their elderly loved ones. Mediation can help with problems arising from this tension.
isA mediator is a neutral third party who typically has no relationship with the family members who are in dispute or disagreement. The mediator brings the disputing people together, sits them down in the same room and causes them to talk to each other. The mediator's role is to negotiate a resolution to the problem that is causing the disagreement. The mediator does not dictate or make decisions for the disputing parties but finds ways to facilitate communication between them. The goal of mediation is to produce a written agreement that all parties will abide by.
It is amazing how little some families communicate with each other. Perhaps when they grew up together they were not accustomed to come together as parents and children and work out problems. And now that children are older and taking care of parents they don't have this family council strategy to rely on. It may seem unnatural to them. But that is often exactly what is needed, especially in situations where perhaps one child is caring for the parents and the others are left out of the loop. Children all have a common bond to their parents and as a result a common obligation or responsibility to each other. When disagreements arise suspicions begin to grow. Suspicions or distrust often lead to anger and the anger often leads to severing the channels of communication between family members. This breaking up of ties can occur between parent and child or between siblings or between all of them. It is often at this point that a neutral third party can come in and repair the damage that has been done and help correct the problems that have come about because of the disagreement. A mediator experienced in elder mediation is a perfect choice for solving disagreements due to issues with the elderly.
On the other hand mediation is not always needed when disagreements arise. Some families remain closely connected through frequent visits with each other or on the telephone. Or in today's modern society they may use the Internet as well. It is important that when a member of a closely knit family recognizes a potential relationship problem because of caregiving, inheritance or disturbing behavior from the parents, that person should make sure that the family comes together and resolves the issues before they become disputes.
Advisers to family members such as attorneys, care managers or retirement planners should be aware that potential disagreements can lead to bigger problems with families. These advisers should be quick to recommend to the family member who is their client to get the family together and work out the disagreement before it becomes a major problem. If the client is not willing to do this then the advisor should recommend a competent elder mediator.
Three Different Possibilities for Solving Disputes
The predominant system for solving disputes in this country is the local, state and federal court system. The system is based on Roman Law and English common law and is adversarial -- two parties are pitted against each other in a conflict of words. The parties with disagreements produce evidence of wrongdoing or failure to perform to a judge, or in some cases a jury, and the judge or jury weigh the evidence, typically providing relief to the party with the most convincing evidence. Instead of working out their differences together and reaching a mutual agreement, parties in a court action allow a neutral decision maker, either judge or jury, to dictate the solution to the dispute. Remedies to the dispute are generally determined by common law precedent and the judge decides, based on the situation, the size of the award, the extent of the remedy or the severity of the punishment. If the guilty party or the party ordered to provide a remedy fails to comply with the order of the court, the court can use coercive methods such as fines or jail time to force compliance.
Court actions are often divisive, very expensive and time-consuming. Another alternative is arbitration. Arbitration is a method of rendering a decision for disputing parties that can take less time and cost less money than going through the courts. Arbitration can sometimes result in fewer hard feelings as well. The difference between arbitration and a traditional court proceeding is that the court proceeding is typically involuntary for one of the parties, meaning the disputing parties are forced to come together in a court because of a complaint from one of them. Arbitration is a voluntary alternative although occasionally it can be ordered by a court.
Both sides in the dispute sign an agreement that they will use arbitration instead of the court system and that the decision of the arbitrator will be final. There can be no appeal. But like the court system, an arbitration agreement signed in advance of any current dispute will also result in one of the parties being forced to appear for arbitration if a dispute occurs. Decisions from arbitration can also be enforced legally. The arbitration process is similar to a court process where witnesses and evidence are produced but it is generally much simplified and more straightforward than the court system. The arbitrator weighs the evidence and renders a decision in favor of one of the parties.
Mediation is a non-adversarial approach to solving disputes. Mediation is a process of bringing two or more disputing parties together and having them mutually negotiate a solution to their disagreement. The mediator is not a judge and does not render a decision but is there to make sure that communication flows freely between the disputing parties. Mediators are trained in the art of negotiating resolutions. Unlike the court system or arbitration, parties to a mediation generally cannot be forced involuntarily to meet. They must mutually agree to come together. Arbitration and mediation are often called "alternative dispute resolution" because both methods avoid using the court system.
Types of Providers, Fees, Training and Licensing
Community mediation services are generally provided free of charge to socially needy or poor families. Or they may charge a small fee ranging from $20-$50. Their funding may come from a variety of sources such as state legal service programs, nonprofit community service organizations, grants and foundations and local and state government. Services are typically provided for solving disagreements or disputes in the following areas.
landlord tenant disputes
neighbor to neighbor disputes
disputes between service providers and their customers
parents having conflicts with their teenage children
Community mediation services may also become involved in elder disputes. A family or an adviser to a family may want to see if a local community mediation service can provide help before hiring a private mediator.
Companies specializing in dispute resolution can also provide elder mediation services if a member of the firm specializes in this area. These companies, however, are more likely to serve deep-pocketed corporate clients and their fees might be prohibitive. Such firms may charge an upfront administrative fee of $500 or more before they will even get to a session. Then they may charge $200 or more in hour for their services in a formal mediation. And finally they will charge an additional fee for writing up a final agreement.
Independent mediators may be individuals who have training in mediation and who specialize in specific areas of mediation. These are the people most likely to be of help to families needing elder mediation. Some of these people may actually specialize in elder mediation and they are likely to have a background as a care manager, a social worker, a gerontologist or a psychologist. Those who specialize in elder mediation are most likely to have a background dealing with issues with the elderly. Others of these providers may be able to help with elder mediation but their specialty may be more broad and they will typically present themselves as being family mediators. Depending on their reputation and their effectiveness, independent mediators may charge anywhere from $50 per hour to $150 per hour. Typically they do not charge any additional fees other than their hourly rate.
Attorneys and court-connected mediators are most likely to be associated with mediation in the court system. For instance attorneys who also act as mediators may be providing an additional source of revenue for themselves in states which require mediation in certain legal proceedings. A court connected mediator may be a free service of a court ordered procedure. Mediators with a legal background are less likely to specialize in elder mediation but that may not always be the case. For instance some elder law attorneys may have found as a necessity of their practice a need to provide elder mediation. They must however avoid a conflict of interest with their own clients unless the family is willing to agree to a mediator who has a connection to one of the complaining parties. This is usually not an acceptable position to the other family members since having an attorney as a mediator who represents a member of their family is going to make the rest of them highly defensive. An elder law attorney is most likely to become a mediator on recommendation from a professional adviser such as a retirement planner or a tax adviser. Attorneys specializing in elder mediation are going to charge about the same hourly rate that they would charge for their legal services.
Because they provide no legal services or render judgments and because they provide no other services other than facilitating communication, mediators currently have no licensing requirements in any states. And there are no definite training requirements as well. Theoretically anyone wanting to be a mediator could simply hang out a shingle and start providing services. But the majority of mediators have been through a training program either offered through a local college or university or from a school specifically organized to offer mediation training. Since it is a rapidly growing field, states will likely require specific training, licensing and continuing education for mediation services in the future. Or mediators through their professional societies may require some sort of a certification based on training or experience. This is not currently the case.
Since there are currently no standards for mediators, it is difficult for someone requiring these services to know whether a particular provider is qualified or not. But qualification based on training or licensing may not be the only determinant whether a mediator is effective. Some people regardless of training have a natural talent for getting opposing parties to agree with each other. And the person with a knack for mediating might not have the most elegant technical qualifications. So how can families find the right person who will "get the job done"? We will discuss in more detail at the end of this section how to find a qualified mediator.
Arranging a Mediation
The Value of Using Mediation
As people age the relationships with their families sometimes change. Impaired mental and/or physical abilities often cause a child to view the parent in a different light. Relationships created by caregiving can often cause tensions among siblings. And sometimes greed, generated by the anticipation of obtaining their assets when the parents are gone, can have a surprisingly huge negative impact on the behavior of siblings and parents. Below are some of the changes that can occur in family relationships.
- Roles can reverse and the child becomes the parent and the parent becomes the child.
- There may be a loss of respect from children due to the unsavory appearance, errant behavior and disability issues of parents.
- Because of the change in the environment or the perception of the change there may be behavioral changes in a parent receiving care and reactive behavior changes in the caregiver.
- Other siblings may display jealousies, lack of respect or distrust of a sibling caring for parents.
- Aging loved ones may display the same lack of respect or regard for a child or a spouse caregiver.
- The childlike dependence of a care recipient may allow a spouse or child caregiver to take advantage and engage in physical or financial elder abuse.
- There may be a disagreement with family members over how to handle a loved ones lack of mental capacity
- The disposition of parents' assets can create greed, resentment, heated discussions and even physical attack between squabbling siblings.
For unexplained reasons a family may disregard a change in relationship and instead of finding a solution resort to name-calling and isolation of the perceived troublemakers. Perhaps families don't have the skills to solve their own disputes. Perhaps they think disputes are a normal consequence of caring for aging loved ones. Perhaps there is a lack of respect for a sibling due to divorce and failure to maintain a job and this attitude blocks any dialogue between family members. Maybe the behavior changes have occurred over a period of time and the family has not recognized what has happened. Whatever the reasons for not dealing with the problem, it may be impossible for the family to find a resolution internally. Without knowing it the family needs help from a professional.
Family problems have always existed but in the past we were rarely exposed to a family's dirty laundry. Perhaps this generation of the elderly is different from the one preceding or the generation of baby boomers currently moving into their elder years. The current cohort of Depression and World War II era elders may be creating more tension in their families by refusing to discuss financial issues and showing an unwillingness to share their feelings, intentions or wishes.
Or there may be other reasons for the apparent modern dysfunction of families dealing with the elderly. Modern families are often living further apart and it is more difficult to communicate. Or because of the parent-child relationship, parents may not respect their children's views but be more willing to respect the views of a neutral expert. Perhaps it is the openness of today's society that is allowing us a glimpse into what has always existed. Or maybe more is coming to light because traditional caregivers are working and parents are being exposed more to services of professionals who are being hired to come into the home. Professionals may recognize the problems with the family relationship where the family hasn't. Whatever the reason for an apparent increase in elder related disputes, families and advisers should know that professionals are available to solve problems the family is probably not capable of solving itself.
Mediation can achieve results that the family by itself may not be capable of realizing or have the expertise of achieving. Here are some reasons that make mediation so valuable.
- Allows for a trained expert on communication to give the family a perspective it could not gain by meeting together on its own;
- Allows all involved to meet and prevent problems from arising by anticipating situations that may cause disputes;
- Allows for a meeting in a relaxed atmosphere where people are more likely to share their feelings;
- Allows for the mediator to invite experts such as care managers or other care providers into the meeting to educate the family and give them a new perspective;
- Allows individuals to discuss undisclosed or undiscovered issues that may be causing the dispute;
- Allows parents to focus on their abilities rather than their limitations;
- Allows children to come up with and consider options not thought of previously;
- Allows those sheltering feelings to express themselves in complete confidentiality;
- Allows the family to come closer together instead of drifting further apart;
- Allows uninvolved family members to become involved;
- Allows parents to maintain their dignity by being involved in making decisions for themselves;
- Allows parents to express wishes and desires that had previously gone unuttered;
- Allows everyone to agree on the disposition of parents' assets;
- Allows for a neutral third party to challenge family members and make them take responsibility for their actions;
- Allows for participants to feel personally empowered with their ability to handle problems themselves;
- Allows for consensus of all involved which in turn creates a much higher rate of compliance with the plan than with any other process; (the success rate for compliance with elder mediation is estimated to be about 80% to 85%)
- Allows for and requires a written plan with specific responsibilities which makes compliance feasible.
Disagreements Suitable for Elder Mediation
Elder mediation is a brand-new field and is still finding its roots, but those active in this area have identified the following issues with older people that can lead to disagreement, conflict or dispute.
parental living arrangements,
health and personal care (such as driving ability),
provisions in the case of terminal illness,
home upkeep and repair,
nursing home care,
trust and estate issues,
power of attorney,
relationships between parents, grandparents and grandchildren.
Court Ordered Mediation
It is becoming more common in some states for the court system to order mediation because of state laws that require it with certain civil cases. Some states require mediation in divorce property settlements, custody of minor children, with certain employer/employee and company/customer disputes and sometimes with small claim commercial disputes. At least one state requires mediation as the first step in a contested divorce process. And it is becoming more common for judges, at their discretion and when court jurisdiction allows it, to order mediation in any civil case where the judge thinks it might be appropriate. They do this because realistically only about 2% of all civil cases result in a verdict. About 98% of disputing parties negotiate a settlement before a verdict is passed, usually before the trial even starts. In order to save the court time and effort, or at the request of the complaining party, a judge may require the disputing parties to come together before a trial and attempt a solution through mediation first. If mediation does not work then the trial can proceed.
Although it is rare for disagreements concerning the elderly to end up in court, there might be two or three situations where this might occur. The family may go to court to contest a will, there may be a civil action brought by family members against a member of the family suspected of stealing assets or one or more members of the family may press the court for a guardianship or conservatorship for an elderly family member. In all these cases it is possible the court could order a mediation. A court ordered mediation would be most likely in a contested guardianship situation where some members of the family want the judge to declare a parent incompetent and others of the family do not want this.
Getting the Parties Together
There are number of key problems encountered in getting a family together for a mediation session. The first of these would obviously be a denial that mediation is needed or can help. If a family member is initiating an invitation to other members of the family to attend mediation, and there has been little communication to this point with the others, an invitation would likely be rejected. A member of the family who has recognized the need for mediation would have to find some way to convince the others that it is needed. Generally the acknowledged leader of the family such as the eldest or the person who has the most respect is going to succeed if that person is also requesting the meeting.
If a non-leader is initiating the request, that person must win over the family leader in order to be successful. Or another approach might be the parents requesting such a meeting if one or both of the parents are capable of doing that. Another approach might be using a trusted family adviser such as an attorney or a church leader to initiate the request. Yet another approach may be to hand the responsibility for invitation over to the mediator who would then contact each person, explain what is going on and invite everyone to an initial meeting to outline the concept of mediation. A number of mediators provide a 30 or 40 minute video dramatizing a mediation meeting. The purpose is to allow those who are skeptical to see a live example of how it works.
Another key objection to mediation is the cost and who is going to pay for it. The mediation process could cost $200 to $1000 based on the hourly fee and the amount of time needed. If a community mediator is used there may be no cost or at the most $50. If a family member is initiating the request, that person may be willing to shoulder the cost entirely. Or if the family comes together for an initial meeting to be convinced of the need for continued mediation perhaps the family member could cover that initial meeting cost and then if other members of the family agree, they might all consent to put in their share of the remaining cost. Knowing that participants must be convinced of the process first, many mediators will offer a no cost initial consultation. If an adviser is recommending mediation to one or more family members, that advisor will have to justify the cost. Even though people are willing to pay $200-$1000 to repair their cars, make repairs to their homes or to take a trip, the same money put towards mediation might seem to them a waste. They would have to be convinced of the value.
Another deal breaker is that in order to be successful all parties to the disagreement or dispute must be involved. If one or more of them refuses it would be impossible to go on. Or another issue related to this is that perhaps one or more people are willing to participate but they live a great distance away and it is difficult for them to come together with the others. In this case, the mediator can arrange for them to participate through voice conferencing. Or the initial face-to-face meeting might be arranged but subsequent meetings, if necessary, might be conducted over the phone or even on the Internet.
Choosing where to meet can sometimes be a challenge as well. If family are scattered over a great distance it may be more convenient not to hold the mediation in a mediator's office but perhaps in a place convenient to all but where no interruptions can occur. Sometimes, meeting around a conference table can be confrontational. A better setting might be in someone's living room or around someone's dining room table.
A family lawyer may attend as well as religious advisers but these people are there only as support or for informational input and are not part of the negotiated process. Everyone would have to agree to allowing outsiders to come in since everything discussed in a mediation process is confidential and everyone agrees that all written notes or other things discussed only stay in the meeting. The mediator may also get permission from the participants to invite experts such as a care manager or a home care provider. In many cases the mediator may likely already be a care manager.
How a Mediation Works
Prior to the first formal session, participants will receive a written copy of rules and procedures. This may include a description of how a session is conducted and the rules that everyone agrees to abide by. The most important of these is confidentiality. The parties will agree to not divulge or talk about anything discussed during the mediation. Any notes, including those of the mediator will be destroyed. Keeping information confidential is a key element of achieving success in the mediation process. Unless it has been ordered by a court, the outcome of mediation cannot be used in any court proceeding. Each participant may also be asked to fill out a form giving the mediator some background on that person. The document will also discuss the fees and how they are to be paid and finally the participants will be asked to sign a statement that they will not hold the mediator legally responsible for any problems that may result from mediation.
Mediation is not just an informal get-together but a structured process guided by the mediator. After everyone has come together and the meeting officially convenes the mediator will make introductions, then describe the rules that the meeting will follow and then urge all who attend to be open-minded and to cooperate.
The next step would be an invitation to those who are in disagreement to describe their side of the issue, how they have been affected and the outcome they would like to see. This is not a discussion and others are not allowed to argue or interrupt. Everyone has his or her turn. After everyone has spoken, the meeting may be opened to comments from the group to attempt to draw out additional issues or to clarify the issues already expressed. Argument is not allowed and it is up to the mediator to make sure that the purpose of the meeting is to communicate and not to fight. At some point the mediator restates or translates the essence of the disagreement and continues to restate if necessary until all participants agree to accept a common definition of what the dispute entails. Once common ground has been reached the next step is to come up with a solution that is acceptable to all.
The mediator might use several different methods to facilitate communication, to recognize the issues and to come up with strategies that will be acceptable to all. If participants are unwilling to share their thoughts, the mediator may have to pick a side and become confrontational in order to draw out information. But it is not the job of the mediator to predetermine which side of the dispute is the right one and a confrontational technique would soon be abandoned after the intended outcome is achieved. Another favorite technique is to encourage brainstorming to come up potential solutions to the problem. According to Elisabeth Seaman, the founder of Conflict Prevention & Resolution Services,
"My aim is to help people get a better understanding of each other,"..."The point is to get people listening to each other and in such a way that they understand another's point of view," she continues, "They don't necessarily have to agree with each other, but solutions are only possible when each party respects the integrity of the other."
The next step in the process is to come up with a solution that is acceptable by all. It is up to the mediator to keep the momentum going towards this common goal. The mediator will never suggest a solution but will allow the parties involved to design their own. Once all have agreed to a resolution, the final step is for the mediator to produce a written agreement based on this mutually accepted solution that all parties will sign. The agreement is not a legal document, but the process used to produce it generally results in a very high compliance with its provisions. The parties can agree to make it a legal contract and enforceable in court but in most elder mediation cases there would probably be no need to do this.
If communications break down and no immediate solution is found, this is not necessarily the end. Family members may agree to go home and think about it and come together at a subsequent meeting. Or the process of mediation may have opened doors to communication that were not previously there and possibly over time an informal solution may evolve with family members more willing to talk to each other.
Finding An Elder Mediator
There are a number of different areas of mediation and it is important to find someone who specializes in family or elder mediation. We have already mentioned above that a family is likely to find someone specializing in this area either through a community mediation service or by contacting an independent mediator. Lawyers who are mediators are probably less likely to specialize in the family area.
Most mediators have training and experience in the area that they are working. Most can produce evidence of certification. As we mentioned before they are no licensing requirements to be a mediator. The number of cases processed and the background of the person offering this service is an important consideration in the selection. Here are some suggestions for finding this service.
- Yellow Pages, look under "mediation services"
Internet search, try some of the following web sites:
- The Association for Conflict Resolution http://www.acrnet.org/
- National Association for Community Mediation http://www.nafcm.org/
- The Association of Attorney Mediators http://www.attorney-mediators.org/
- or type in a search engine "family mediators (state)"
- Contact the local area agency on aging
- Contact your state bar association
- Contact a local university or college and asked to speak to the department that provides mediation training and ask for a referral.
- Contact a care manager, many care managers may also be mediators or may know an elder mediator. Find a care manager under "senior services" in the Yellow Pages.
eHealth Services For the Elderly
Ehealth is a nebulous word to describe a trend to use computer technology in the delivery of medical care. We will use the word in the context of our discussion below to describe technology initiatives that promise better health care for elderly Americans. Some of these initiatives are already in use but not yet widely supported through payments from Medicare. Others are in the process of formation and will bring future benefits. The most effective tool available to all today is the use of the Internet for healthcare information and to some extent interactive health-care treatment.
Using the Internet
A recent survey reveals that 19% of all Internet users "often" use the Internet for healthcare information and another 31% "sometimes" search for information related to health care. The Internet is a major new source of information for the public to research health care issues. Here some are ways in which people are using the Internet:
- People are able to educate themselves in medical vocabulary.
- Thousands of sites allow users to research and understand medical conditions and how they're treated.
- New information being posted daily helps people to research new treatment options that their health provider may not be aware of.
- Hours of research and study empower individuals and allow them to confidently discuss medical issues with their doctors.
- About 7% of Internet users actually interact with their health care provider on the Internet to manage their care. We expect this number to grow in coming years.
Electronic Health Records
A major impediment to quality care is the current paper system for medical records. Elderly patients often generate a large number of office visits, hospital visits and prescriptions. An older person's file could end up being an inch thick or more. No doctor can remember all the details of every patient and in many cases must spend a great deal of time reviewing records. Former treatments and medications can be missed, previous consultations are not easily tracked and referrals to other specialists may be difficult to pinpoint.
Complete information is critical in the treatment of patients who have large medical files. A computerized medical records system tied to a database allows the doctor or nurse to pull up selective information such as a list of drugs, the dates of previous consultations, a history of lab results, potential drug reactions and treatment outcomes or referrals to other doctors. The computer also allows staff to follow up on treatment, to electronically submit prescriptions to pharmacies, to schedule appointments and to provide proper treatment codes and automatic billing.
One witness in a recent Senate subcommittee hearing points out the power of using electronic health records. According to Dr. Robert Kolodner, chief health informatics officer at the U.S. Veterans Health Administration,
"As U.S. health-care costs rose dramatically, the U.S. Department of Veterans Affairs (VA) doubled the number of patients served in the past 10 years, while increasing its health-care budget by only 50 percent."
Kolodner attributed the VA's ability to hold down costs directly to its use of electronic health records. He states, "I have used VA's electronic health record system for years. As a doctor and as a patient I am very enthusiastic about the benefits of this technology."
Kolodner continues, "Recent Hurricanes Katrina and Rita showed the need for electronic health records that follow patients. The VA began rolling out an electronic health records system in the mid-1990s, and today, all 1,300 VA medical facilities use electronic records. Katrina had a "significant impact" on the operation of a dozen VA facilities, destroying one and forcing another to be evacuated, and the two recent hurricanes scattered Gulf Coast evacuees across the country," he continued. "But the VA was able to get access to basic medical data such as medication information for patients treated at those facilities a day after Katrina hit, with full medical records available in about a week," Kolodner added.
But converting the current paper system to computers may end up being a very difficult task to accomplish. For small clinics or individual doctors' offices the cost and effort of switching from a paper system to a computer system can be overwhelming. Procedures must be redesigned, doctors spend considerable time retyping previous histories and existing paper records must be transcribed into the system. The implementation often represents a major increased commitment in time sometimes over a period of a year to get the system implemented. Personnel and workflow procedures must be completely reorganized and the consequence is usually longer patient waiting times and a high frequency of mistakes made during the changeover. There is also a need to hire or contract with a technology expert to handle equipment failure, virus attacks, system failures and software glitches.
Once accomplished, the results are outstanding. Prescriptions and renewals are handled more efficiently and safely, appointments and checkups are handled automatically, lab results from cooperating ewired labs are immediately added to electronic files, prescriptions are data based and potential interactions avoided, patient questions are answered on the spot and expensive duplication in testing and treatment is avoided. In the end there is also a cost savings to the clinic or office due to improved efficiency.
But very few small practices or small clinics are willing to change over because no one reimburses them for the cost or time. And no one is giving them an incentive to change the current system. Insurance companies still pay the same regardless of the system used to deliver the care. And many of the savings in the cost of care are passed on to the insurance company and are not realized by the health-care providers.
The message to the public desiring better care from ehealth initiatives is to use larger clinics or hospitals that have the resources to implement this new technology.
The use of computers and the Internet in a hospital setting is also improving the efficiency and quality of care. Here are some examples.
Preventive telemedicine services allow nurses at a central station to monitor patient vital signs. But these records are also automatically added to the patient's database and a history of input is available to the treating staff which might be the personal physician, a medical specialist or someone else in the hospital. Instead of a bed chart and an in-room visit from the medical provider, all information can be accessed on the computer and any changes in condition can be dealt with immediately. The data accumulated from the patient's daily monitoring and interactive healthcare sessions can be used for early diagnosis of general deterioration in the patient's health. This feature allows for preventive actions to be taken before the patient develops a major health crisis, which can save the patient unnecessary suffering, the necessity of drastic and expensive medical intervention and prolonged hospitalization. All of this early intervention due to electronic monitoring and data storage results in lower costs and better quality care.
Interactive Consulting is proving beneficial in some settings. Using a mobile computer monitor and a video camera, a specialist can make a "virtual" visit to any patient anywhere in the world. With the help of an assistant, the specialist can observe any physical problems; query the patient about symptoms and at the same time access online records from the patient's file. Any simple tests can be done and immediately transmitted. This allows specialists or professors in teaching hospitals to see more patients and to effectively use their time better. Considerably more patients can be consulted from the specialist's office as opposed to the specialist driving to various locations or consulting on the phone. This service would probably not currently be used by hospital staff or the personal physician visiting his patients in the hospital. But it may not preclude these providers using such a service in the future
Videoconferencing is about connecting surgeons and other medical professionals with the information they need. Systems can link operating rooms with facilities around the world. These systems exchange MRI's, X-rays, live pictures and other kinds of information between operating rooms, doctors' offices and teaching institutions everywhere. The goal is making telemedicine a reality, in real time, with worldwide access.
Telehomecare or Home Telehealth
Telehomecare is a more effective way to deliver home care under certain circumstances. Since it is a rapidly developing field, it's difficult to define all telehomecare applications. It usually involves two-way electronic communication between the patient and the formal caregiver such as a nurse or doctor. Communication can occur with two-way radio, telephone or as is usually the case, two-way interactive video using a computer and phone lines, cable Internet, wireless Internet or satellite Internet downlink. This electronic face-to-face home visit also requires some means for the care provider--who might be hundreds of miles away-- to access patient vital signs and receive patient-initiated medical tests. The patient or her in-home informal caregiver has been trained to use electronic monitoring or test equipment that sends the relevant video snapshots or numeric data via phone line, or radio wave to the formal caregiver.
Telehomecare is often more cost-effective in rural areas. And in many cases it provides a higher quality of care. Here are some of the ways telehomecare is proving to be beneficial:
- reducing number of visits to the emergency rooms
- reducing unnecessary visits to physician's offices
- avoiding unnecessary costly visits by health providers
- providing education of the patient in early symptom management
- monitoring vital signs on a 24-hour basis, therefore providing a potential for early intervention and/or prevention of repeat hospitalization
A Typical Day In The Life Of A Home Telehealth Patient
(A Composite Case Drawn From Many Examples)
63-year-old Mary Smith of Gatesville , Kansas has lived with diabetes for 15 years and has had many complications during that time. Travel to hospitals and specialists has been difficult and the visits expensive. On her last discharge from hospital to home, her doctor approved home telehealth service and monitoring.
It's 6:30 AM in Mary's rural farmhouse. A house where she has lived most of her life. Mary is awakened by her alarm going off reminding her to measure her blood glucose and blood pressure and to check her weight and to send those readings through her telephone to her telenurse, Susan Brown, who works 200 miles away in Wichita. Susan will receive the information and contact Mary if there is a change of health status or if help appears to be needed.
Mary sends her first report at 8:00 AM but she doesn't do it with a regular phone call. She does it by using three telemonitoring devices-a blood pressure cuff with a telecommunications plug-in, a similar device to monitor blood glucose and a body weight sensor. These devices are all attached to a telehealth, computer workstation. The telehealth work station is connected to Mary's phone line and is linked through the line to Susan's computer in Wichita . After Mary's computer sends its data, Susan receives the information on her own computer and can instantly interpret the state of Mary's health. In addition, an inexpensive camera perched on top of Mary's telemonitor can take snapshots of Mary as she measures her insulin, inserts her syringe, and rotates injection sites, and will send the pictures along to her nurse so that Susan can actually see Mary and how she is doing. If she needs to, the nurse can give her patient a phone call and coach her along. Using her telemonitoring machine and a telephone, Mary can be connected with a nurse, ask a question, or be reminded of a routine on a 24/7/365 basis.
Mary, who lives alone, also suffers from hypertension and has had some bouts of depression related to living with multiple chronic diseases. Until now, her children had felt that sending her to live in a nursing home was a good choice, but, with telehealth, Mary can monitor herself regularly and learn lifelong self management routines. Currently, nursing home placement is not necessary; she can get the assistance she needs at home. And the challenge of monitoring and managing her own health on a daily basis has given Mary focus and helped her with her depression. In addition, with the regular counseling she receives from her nurse and careful management of exercise routines, she has already reduced her number of medications and has not made any emergency room visits in a long while.
Mary also notes: "I'm able to stay at home with my books, my music, and my birds."
Here is how Medicare currently treats the payment of home Telehealth.
"201.13 Telehealth.--An HHA (home health agency) may adopt telehealth technologies that it believes promote efficiencies or improve quality of care. Telehomecare encounters do not meet the definition of a visit set forth in regulations at 42 CFR 409.48(c) and the telehealth services may not be counted as Medicare covered home health visits or used as qualifying services for home health eligibility. An HHA may not substitute telehealth services for Medicare-covered services ordered by a physician. However, if an HHA has telehealth services available to its clients, a doctor may take their availability into account when he or she prepares a plan of treatment (i.e., may write requirements for telehealth services into the POT). Medicare eligibility and payment would be determined based on the patient's characteristics and the need for and receipt of the Medicare covered services ordered by the physician. If a physician intends that telehealth services be furnished while a patient is under a home health plan of care, the services should be recorded in the plan of care along with the Medicare covered home health services to be furnished."
The delivery of hospice care requires the coordinated effort of a team of skilled medical personnel, spiritual counselors, volunteers and family. Telehospice is a promising new approach to helping the hospice team better do their job. By using a high-tech means of communication and monitoring, telehospice allows busy care providers to use their time more efficiently and to respond to patient needs more quickly.
Due to a burgeoning elderly population, government funding and available skilled care providers for the elderly are becoming more scarce. Telehospice can help support this growing lack of resources.
Tele hospice and home Telehealth are quite similar in the fact that they monitor health conditions in the home and Telehospice may use similar remote monitoring equipment as a Telehealth workstation, but the emphasis with hospice is on comfort and support. Currently, Telehospice is being tried on a limited basis mostly in rural communities where it is difficult for the providers to make regular visits.
This new concept is designed primarily to augment and not replace the services of the hospice team. For instance if a crisis occurs in the middle of the night and the nurse on duty is a long drive away, a consultation over the phone and using computer video could probably substitute for a personal visit. Or perhaps the doctor needs to see how his patient is doing but is busy on a particular day or his practice is a long distance away. A Telehospice visit using computer video may be adequate to helping him assess the situation. Or another use might be in remotely monitoring and controlling IV pumps for pain management. Uses of Telehospice are only limited by imagination and we suspect as more uses are identified it will become a common part of all hospice treatment.
National Health Information Network
In 2004 the Bush administration created the Office of the National Coordinator for Health Information Technology (ONC) a part of the Department of Health and Human Services. The purpose of this agency is to create the National Health Information Network. The network is to be a national Internet database of all medical records in the United States . In order to achieve this, all health-care providers will have to convert from paper records to electronic records. There will also have to be a national standard for all records to be shared across providers using the Internet database. It is estimated this initiative will cost the private health-care sector $150 billion over the next five years. This may seem a formidable task but HHS awarded its first six contracts for networks in October 2005. Even without the initiative some 100 or so local network projects have already been started by hospitals and large clinics across the country. But so far there is no standardization for linking these networks together.
Initial estimates are a national network could save $120 billion a year by eliminating duplicate tests, shortening hospital stays and improving care for chronically ill patients. Total savings estimates for all sectors of health care run as high as $600 billion a year or about a third of the current $1.9 trillion being spent on health care in this country. The government, particularly Congress, is solidly behind this initiative because it could be a major factor in saving Medicare from running out of money. Here are the goals the network plans to achieve by the year 2014.
Eliminate Medical Errors According to Business Week, dated October 31, 2005, "Medical errors, which cause as many as 195,500 deaths a year, are an unmitigated epidemic. The doctors and medical technology that go into American medicine may be the best in the world, but the care that comes out the other side is beset by woeful inefficiency, dizzying bureaucracy, and enough mistakes to make medical care the third leading cause of death, behind heart disease and cancer." Eliminating medical errors will be a primary goal of this database.
Eliminate Duplication There is a great deal of duplication in medical tests. Sometimes previous tests are not available in time for a doctor to make a decision or the care provider may not even be aware of tests that were done previously. As a result duplicate or even triplicate tests are often ordered. The network would prevent this problem and allow instant access to any tests that have been performed.
Track Prescription Drugs We have mentioned in a previous section that many health-care providers are unaware of the number of prescription drugs and over-the-counter drugs their elderly patients are taking. A central database would identify these drugs and also automatically raise a warning flag if there is a potential for drug interaction.
Online Medical Records Currently everyone is entitled to a copy of his or her medical records but actually obtaining those records is a difficult and cumbersome task. The network would allow anyone to access his records on the Internet. The projection is to make this available nationwide by 2014.
Sort out Best Treatments This is one of the key elements of the database and one of the key sources of cost savings. The idea is that a national database would allow the health-care system and insurers to track the effectiveness of various treatments and discard those that were ineffective and promote those that work the best. It would also help standardize treatments across the country where there currently appears to be a great disparity in the amount of care provided individually in various sections of the country. In some sections the elderly receive twice as much care for the same types of conditions as they do in other parts of the country but yet there seems to be little difference in the outcome or the death rate.
Allow for Performance-Based Health Care A central data base would make it possible to track the cost/benefit outcome of hospitals, clinics and doctors offices. This would result in a long-sought innovation in the health-care system to reward those providers who achieve the best medical outcome for the least money and penalize those providers who cost the system a great deal of money.
Manage Chronic Diseases Chronic diseases such as diabetes, congestive heart failure and asthma, consume a third of all medical spending in this country. Home monitoring systems would feed vital sign health readings into the central database. A nurse or doctor could periodically check the vital sign readings of their patients and if it appeared that the condition was worsening, the providers could intervene with treatment before more costly care was necessary.
Three major obstacles may stop this initiative in its tracks.
- Cash-strapped hospitals, small doctor's offices and small clinics won't foot the cost to convert since most of the savings go to insurance companies and not to the providers themselves.
- Medical records privacy advocate groups are very concerned about the security of online records and without adequate assurance or even with it they may seek to stop the initiative.
- Advocacy groups and most Americans in general are concerned that a central database could be used by the government or by large corporations to spy on people or to gain control over this country's citizens.
Assistive Technology and Monitoring and Alarm Systems
Assistive technology is a broad term and may mean different things to different people but for our purposes we will define it as the following:
- Devices or systems to help people who have no skilled medical needs manage their disabilities
- Devices or systems that may also support disabilities with people who are receiving Medicare home care
- Personal items or devices that make life easier for people with disabilities
- Living environments that accommodate disability
- Consultants, books and other advice
- Home Modification
1. Devices or systems to help people who have no skilled medical needs manage their disabilities
Many assistive technology devices and systems that support disabilities may serve as well a disability caused by a medical condition, but we have chosen in this article to differentiate between a medical or a non-medical use because we are talking about the elderly. As a general rule Medicare will reimburse 80% of the cost for rental or purchase of devices or systems that support disabilities due to a medical problem. Some items on the list we provide below of these devices or systems may also be included in Medicare's list of allowable durable medical equipment. Here is our list of devices in this category
- Oxygen equipment
- Sensory Augmentation Devices
- Computer Usage Arrangements for the Disabled
- Wheelchairs and Scooters
- Other mobility related devices
2. Devices or systems that may also support disabilities with people who are receiving Medicare home care
- Oxygen equipment
- Sensory Augmentation Devices
- Wheelchairs and Scooters
- Other mobility related devices
If there is a medical need and if the device or system meets Medicare's definition of durable medical equipment (DME) below, then Medicare will pay for 80% of the cost and the Medicare recipient pays for the other 20%. In addition if the care recipient has a Medicare supplement policy, that policy usually covers the other 20% of the cost.
The term DME is defined as equipment which
- Can withstand repeated use; i.e., could normally be rented, and used by successive patients;
- Is primarily and customarily used to serve a medical purpose;
- Generally is not useful to a person in the absence of illness or injury; and
- Is appropriate for use in a patient's home.
3. Personal items or devices that make life easier for people with disabilities
This could include some of the following exclusive items for disabled persons or for those going through rehab at home.
Hydrotherapy, Paraffin & Fluidotherapy, Iontophoresis, Biofeedback, Hot & Cold Therapy, Wellness & Massage Therapy and Electrotherapy & Ultrasound
Arthritis Supports, Wrist Supports, Elbow Supports, Cervical Collars, Back Supports, Ankle, Foot, & Heel Supports, Foot Management, Bed Positioning & Safety Products, Compression Products, Edema Garments, Thumb Supports, Contracture Management Splints, Upper Extremity Positioning/Supports, Thoracic & Pelvic Support, Knee Immobilizers, Knee Straps, Knee Supports, Thigh Supports, Ankle / Foot Orthoses, Heel & Elbow Protectors, Lower Extremity Positioning, Wound Care Products, Scar Management & Gel Products, Lymphedema Products and Taping Products
Knives, SupergripT Utensils, Sure Hand Utensils, Tapes & Tubing (for enlarging the diameter of an object), Utensil Holders, Acute Care Tables, Clothing Protectors, Dycem® Nonslip Plastic Food Catchers, Home Care / Long Term Care Tables, Non-Slip Matting & Trays, Cups, Mugs & Nursers, Drinking Aids & Straws, Nosey Cups, Self Feeders & Arm Supports, Feeders, Arm Supports & Overbed Tables, JAECO / Rancho Mobile Arm Supports, Mobile Arm Support Accessories, Dinnerware, Feeding Evaluation Kits, Food Guards, Scoop Dishes, Suction Bowls & Plates, Tableware, Jar & Bottle Openers, Kitchen Supplies And Cooking Utensils
Bath , Toileting and Hygiene
Bath & Shower Chairs, Bath & Shower Seats, Bath Boards, Bath Transfer Benches, Bathing Systems, Beluga Bathlift, Folding Shower Seats, Hydraulic Bathlift, Reclining Shower / Commode Chairs, Shower Stools, Bath lifts, Commodes, Folding Commodes, Grab Bars, Lifting & Wooden Commodes, Raised Toilet Seats, Raised Toilet Seats & Splash Guards, Raised Toilet Seats with Armrests, Safety Rails, Toilet Frames, Toilet Supports & Reducer Rings, Bathing & Shower Cushions, Bathing & Shower Mats, Bathtub Grab Bars & Rails, Diabetic Foot Accessories, Grooming & Accessories, Hand-Held Showers, Scrub Sponges & Brushes, Incontinence Products, Mirrors, Catheterization Accessories, Urinals and Mattress Covers
Aids of Daily Living
Reachers, Door Knobs & Grip Assists, Furniture Risers, Home Accessories, Household Helpers, Trolley & Carts, Respiratory Care, Low Vision aids such as magnifying glasses and reading screens, Mouth Sticks & Headpointers, Speech & Communication aids, Language & Cognition aids and activities, Dressing Aids (button hooks, hooks, etc.), Dressing Education, Fasteners & Shoe Laces, Shoehorns, Slippers & Fasteners, Socks & Slippers, Leisure Activities and Helpers, Environmental Controls, Activity Tables, Book Holders, Page Turners & Reading Aids, Scissors, Writing Aids, Dysphagia Resources, Oral Motor aids
Outer garments, underwear, leisure wear, footwear and other specialized clothing for elderly people with Alzheimer's, arthritis, mobility issues, foot problems, incontinence, scoliosis or obese individuals.
4. Living environments that accommodate disability
There are a growing number of companies that will make the home into a safe environment for a fee. Here is a list of what one company called Safe Living Solutions, at http://www.safelivingsolutions.com/ will do.
What We Do
Reflecting on our mission statement, we are committed to improving the lifestyles of the older aged and the disabled. The many services we offer are based on an extensive and diligent focus on enhancing the lives of those that have a need of our services and will benefit from them.
SafeLiving SolutionsT (SLST) is a non-profit. community-focused service provider with a commitment to improving the lifestyles of the older aged and the physically impaired that reside in the Yakima Valley and surrounding areas. The many services we offer are based on an extensive and diligent focus on the enhancing the lives of those that have a need of our services and those who will benefit from them.
SLS Tdiffers from many other service agencies because we are consumer-directed. People with disabilities are significantly involved in SLST, not just as clients but as Founder and representative on the Board of Directors and our employment goal is for staff members as well. We are funded through federal, state, and local grants, contracts and private donations.
Our goal is to expand opportunities for people with disabilities to achieve their highest potential in independent living and community life. We provide individualized and group services for people with disabilities, and also are actively involved in community outreach and advocacy. These services are available to all persons with disabilities in the Yakima Valley and outlying areas. Individuals and families can receive assistance through services provided in-office, in-home.
By learning to make independent choices and by taking control of their own decisions, clients, with our support and assistance, move away from unnecessary and costly dependency. SLST itself, through community education and advocacy, works to encourage removal of institutional barriers to full inclusion of people with disabilities in community life allowing Independent Living and remaining in the home.
5. Consultants, books and other advice
There are numberless books available from bookstores and from online sources that give advice to caregivers in all areas of disability support. These sources often go beyond the issue of devices and equipment and deal with such things as meal preparation, menus, activities, music and other social issues important to the disabled. Private and government consulting are also available. Check online or dial 211 or call the local area agency on aging.
6. Home Modification
Many people with disabilities want to remain in their home as long as possible. Such things as narrow doorways that cannot accommodate wheelchairs, more than one living level and inconvenient layout of the home may prevent a person from living there. In addition disabled people often require rails, special bathroom facilities and special dining facilities as well. There are three options to modifying the home.
- Research can be done and materials procured to make the home more livable and the family friend or relative can pitch in and do the remodel.
- A contractor can be employed to do the necessary modifications.
- An attempt can be made to find a local company that specializes in the home modification for the disabled. These providers may be readily available in larger population areas.
In addition help can be sought from the following community service providers.
- Local area agency on aging
- State department on aging
- State housing finance agency
- Department of public welfare
- Department of housing and community development
- Senior center Independent living center
The national Association of home builders and the AARP have teamed together to form the Certified Aging-in-Place Specialist (CAPS) program. These people have been trained in the unique needs of the older adult population, aging in place home modifications, common remodeling projects, and solutions to common barriers. It may be possible to find a person in the desired area by going to http://www.nahb.org/or by calling the local home builders Association and asking for someone certified in this area.
Also, consider taking these steps:
- Get recommendations from friends who have had similar projects completed.
- Hire a licensed and bonded contractor. Be specific about modifications in advance.
- Ask for a written agreement with only a small down payment. Make the final payment only after the project is completed.
- Check with the local better business Bureau regarding the contractor's or program's reliability and performance record.
Alarm, Tracking and Prevention Devices
This area of assistance focuses more on the use of devices that warn of problems with homebound people who are often without caregivers for certain periods of the day. This may include
24-hour vital sign monitoring,
emergency signaling systems or
GPS locator devices for wandering care recipients.
Government and Community Elder Care Services
We cover these services in more detail in the other chapters. The purpose of this section is to summarize government services and provide contact information.
Administration on Aging
The Older Americans Act of 1965 created a program to provide community aging services to Americans 60 years of age and older. Over the years, with numerous amendments, the focus of the act has been changing to provide more long-term care services and caregiver support to help individuals remain independent in their homes and avoid going into long-term care institutions. Programs created by the Older Americans Act are managed by the Department of Health and Human Services, Administration on Aging.
The Administration on Aging, as an agency of Health and Human Services, has guided the development of the national aging services network that today consists of 56 State units on aging, 655 area agencies on aging, almost 250 Tribal organizations, 29,000 community-based provider organizations, over 500,000 volunteers, and a wide variety of national non-profit organizations. This nationwide infrastructure currently provides a wide array of home and community-based services to over 8 million elderly individuals each year, which is 17 percent of all people aged 60 and older, including 3 million individuals who require intensive services and meet the functional requirements for nursing home care. It also provides direct services to over 600,000 informal caregivers each year, who are struggling to keep their loved ones at home. The national aging network is the largest long-term care provider network in the country.
The Eldercare Locator, a public service of the Administration on Aging , U.S. Department of Health and Human Services, is a nationwide service that connects older Americans and their caregivers with information on senior services. The Eldercare Locator is designed to help older adults and their families and caregivers find their way through the maze of services for seniors by identifying trustworthy local support resources. The goal is to provide users with the information and resources they need that will help older persons live independently and safely in their homes and communities for as long as possible.
Established in 1991, the Eldercare Locator links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers. Whether an older person needs help with services such as meals, home care or transportation, or a caregiver needs training and education or a well-deserved break from caregiving responsibilities, the Eldercare Locator is there to point that person in the right direction.
The Eldercare Locator is administered in partnership with the National Association of Area Agencies on Aging and the National Association of State Units on Aging. The locator is available online at www.eldercare.gov/or by calling 1-800-677-1116.
State Aging Services
State aging departments or units as they are referred to under the Older Americans Act coordinate and distribute funding from the administration on aging to local area agencies on aging in the state. Some programs of the older Americans act are coordinated at a state level but may be administered at the local level through an area agency. Here is a list of services typically coordinated at a state level.
Long Term Care Ombudsman
A long-term care ombudsman is a sounding board for residents of long-term care facilities such as nursing homes, assisted living or board and care facilities. Residents or families of residents can contact an ombudsman if there is concern about services or treatment from staff in a facility. The ombudsman investigates and if necessary resolves the problems.
Each state, under the older Americans act, is required to have a state long-term care ombudsman program that is managed at the state level. About 38 states include the office of ombudsman under the state aging unit and 15 other states or territories manage the office under a different state agency or use a private contractor. The state office manages a corps of local volunteers who respond to complaints or, time allowing, visit with residents of long-term care facilities to gain feedback. In 2002 more than 261,000 complaints were handled by about 8,000 volunteer ombudsmen nationwide.
Adult Protective Services
The term commonly used by most states to describe the department responsible for adult abuse is "adult protective services". But not all states use this term. A few states have put adult protective services under their social service, health or human service or children and family services departments. But most states have put protective services under the state aging units described above. This is because the Older Americans Act already requires services for elder abuse and also some funding. In addition, local area agencies on aging are in a good position to report abuse and help with abuse problems. Many states that have elder abuse laws combine legislative funding and other federal funding with OAA funding and give the responsibility for elder and vulnerable adult abuse to the state unit on aging.
Health Insurance Counseling
Many elderly have difficulty understanding their Medicare coverage and many unscrupulous health care providers may be preying on the system by charging for services not actually provided. The elderly may also have questions about whether to buy Medicare supplement policies or buy into Medicare advantage plans. In the fall of 2005 Medicare is introducing part D, the new drug prescription program. The aging network has been given responsibility by the Centers for Medicare and Medicaid services to counsel the elderly about this program. The health insurance counseling services, typically coordinated at the state level, are designed to deal with these issues.
State Legal Services
The Older Americans Act requires state aging units and area agencies on aging to provide legal services for older Americans. There is also a requirement for the state to appoint a person known as a "legal assistance developer" to coordinate legal services in the state. The administration on aging has also formed coalitions with various national groups to help states and local agencies implement legal services. Not only is there concern for the elderly about dealing with issues relating to estate planning, income and long-term care planning but there is a great deal of concern that the elderly may be vulnerable to exploitation by con artists and unscrupulous businesses. The OAA specifically directs legal services for the following issues: income, health care, long-term care, nutrition, housing, utilities, protective services, defense of guardianship, abuse, neglect, and age discrimination.
There may only be enough money for most states to hire a legal assistance developer and other staff attorneys may only be possible for larger states. States and local area agencies on aging must rely on the volunteer services of the legal community. Some states and federal government agencies may also provide money for this program. Licensed attorneys may donate some of their time for assessments and law students may be used to help identify problems and offer solutions. Extensive legal help is only available without recipient out-of-pocket cost in a few cases.
The services can be obtained by calling a local area agency on aging.
Area Agencies on Aging
There are 655 area agencies on aging in every state and territory of the United States . Area agency services are also available to over 240 Indian tribes and native Hawaiians. Area agencies on aging represent the largest single aging services network in the United States , with over 29,000 participating service providers and over 500,000 volunteers. Services are numerous but concentrate primarily on helping elderly people remain independent in the community, delaying the possibility that they will need help in a facility. But area agencies also support caregivers and coordinate government paid services for nursing homes, assisted living and board and care homes. Agencies also support caregivers and grandparents caring for their grandchildren. Here is a list of common services.
- Access Services , such as transportation, outreach, information and assistance, case management and so on
- In-Home Services , including homemaker and home health aides, home repair, snow removal, chore and maintenance, supportive services for families of older individuals who have Alzheimer's disease and so on
- Community Services such as adult day care, senior centers, legal assistance, recreation and so on
- Community served meals and meals on wheels
A local area agency on aging can be reached by dialing 211.
Community Aging Services
There are many private, religious and government organizations across the country that provide supportive services for older people. Many of these services center around helping people stay in their homes and avoid having to go to live in an institution or perhaps move in with family. Other community services may provide socialization or training opportunities. Many community programs are coordinated by a local area agency on aging or many community programs may overlap services with the local AAA. Community aging programs might include:
- Meals served in community centers or delivered to the home
- Community Senior Center activities and training
- Transportation and shopping services for people who can't drive or leave their homes
- Home repairs, snow shoveling, telephone support, caregiver support, care management, legal services, energy and weatherization services, housing subsidies, home health care, counseling and much more
- Adult day care
- Protection from abuse
- Help with health insurance and government entitlement programs
Senior centers are often the focal point for all aging services in a community. Experts or contact people are housed in senior centers and can provide many services in the center itself or refer out to other organizations that can help. The community served meals or congregate meals in senior centers are a means for attracting older people into the centers. Seniors can then be exposed to the many services that are available. A call to 211 will help in locating these services.
Single Source Resource Centers
This concept is fairly new and is probably going to be the most helpful source of information and referral available to the public. Currently the administration on aging is funding pilot programs in 24 states to test the idea of a single point source of all elder care services in a community. Not only will the center be a source for government programs but it will coordinate local church and nonprofit and charity programs as well. The state of Florida was so enthusiastic about this program that the Legislature provided funding for resource centers in all areas of the state not only just for a test area. Within the next three years, testing should be complete and results fully evaluated and states should start implementing their programs statewide.
In most states the single resource centers will be called Aging and Disability Resource Centers (ADRC) but states may choose to call them something differently. These resource centers are most likely to be incorporated into the services of a local area agency on aging. The boundaries of an ADRC will most likely correspond with the area served by the sponsoring area agency on aging. The fastest way to locate a resource center is to dial 211.
The Veterans Administration provides aging services to veterans of war who qualify. The veteran must be receiving health care benefits through a local VA hospital and generally be at least 70% service related disabled. But disability rules are often relaxed in areas where funding is available to provide care for non-disabled veterans. Veterans receiving benefits must have a medical need and a staff at the local hospital decides the type of care the patient will receive. This may include nursing care, home care, adult day care or domiciliary as it is called and assisted living. Unlike Medicare, the VA has no time limit on how long a patient can receive long-term care services. Some VA hospitals have nursing units in-house but those facilities that do not have nursing care will contract with a local nursing home. Contracts are also arranged for home care, assisted living and domiciliary. To receive this care call the local VA hospital service area number.
The VA also supports another system of long-term care called State Veterans Nursing Homes. There are about 115 of these homes in all states, but a number of them are in rural areas far from major cities. State nursing homes are constructed by the state with participating funds from the Veterans Administration. States will either operate the homes themselves or more typically contract with a management company to operate the nursing home. Eligibility is determined by each state but as a general rule anyone who is a veteran is eligible.
The Veterans Administration also provides a subsidy for operating these homes called a per diem. The per diem for 2005 is $59 a day. As a general rule the per diem has not been keeping pace with inflation. If it costs the state $130 a day per patient to operate the home and the VA chips in $59 a day, typically the veteran will pay the difference of $71. But there also may be state subsidies for low income veterans. The VA itself also has a subsidy for very low income veterans that will pay about $800 a month of the nursing home cost if the veteran is can't cover it. Some veterans' nursing homes in urban areas have waiting lists depending on the time of year. One urban home as an example has a waiting list of two years for its Alzheimer's wing. The local veterans contact phone number may be able to provide a referral to the closest VA State home.