About Telehospice Care
I. What is Home Telehospice?
Home telehospice, the newest frontier of telehealthcare delivery, can deliver some of the usual hospice services now provided in patients' homes by usual hospice team members but now does so by using remote communications tools (the tele component, such as a telephone or a videophone). An example of telehospice delivery could involve a nurse using videophone contact to instruct a caregiver in repositioning a Foley catheter, as in this case:
Case. A Foley catheter has gotten twisted and is causing the patient great discomfort. As has frequently been done in home telehealth, a nurse instructs the family caregiver using a videophone on how to undo the twisted line for the hospice patient. With the use of the tele-tool and a show-and-tell approach, the problem is corrected, the patient's discomfort relieved, and a late-night in-person visit effectively avoided.
Of course the case has to occur late at night, with a patient in pain, family caregiver upset and worried about next steps if it were to be typical. A nurse at the caregiver's side would be a comfort. What's presented in this case comes close-that is, it shows how using new technologies in hospice can help the nurse to virtually be there for the patient and caregiver.
Home telehospice can be understood, at its most basic, then, as a replication of some of the usual hospice services delivered in person by members of the hospice team. However, as we can note from this case example: Telehospice is NOT mechanizing the home hospice process - so that the "usual" in-person care is somehow mechanized and delivered in an automated way. Instead, it's meeting usual hospice needs differently. In addition, consider how tele-contact is being used to deliver needed care. The real live nurse is working with the tool and with the caregiver. In this case example as in many others now being generated in hospices around the country, it's clear that choosing the telehospice service option is NOT forcing patients and their in-home caregivers to choose between nurse and patient contact OR machine and patient contact (Kinsella, 2004).
This case also provides an example of effectively using telehealth as an adjunct to and extension of services that can be provided to hospice patients and their caregivers today. By using this "remote" or "virtual" intervention, nurses and others on the hospice care team can significantly increase their contact level with their patients and the patients' caregivers and as a result, increase everyone's comfort level as well.
Virtual contacts like these are more than a 21 st century novelty and certainly much more than a nicety for very sick patients and very worried family caregivers. More and more of this type of contact will be a hospice care delivery necessity, in fact, as this century progresses. We need only to familiarize ourselves with this country's impending healthcare staffing shortages in hospice as indeed in all of the healthcare system to appreciate the real need to identify and develop alternatives to conventional care service delivery.
In addition, there is the need to care for burgeoning numbers of elderly patients who are now entering hospice and often at late stages of their lives and disease states than did patients in past decades. As a result, there are many more patients in today's hospice care, most needing many more services. These circumstances are among the factors affecting conventional hospice care delivery and should make us view telehospice as a potentially necessary new set of tools to provide needed services.
II. Telehospice Use in the U.S. Today
A look at the 15 programs in the U.S. which have begun to use telehospice at least in a small way suggests that early adopters are using the technology to see if and how well telehospice can replicate conventional hospice visits (Kinsella, 2004). Several home/hospice agencies are using full-scale telehealth workstations in a limited way with 5 or 10 very rural hospice patients to monitor certain, not all, physiological measurements, for instance. A prison-based telemedicine program is using tele-contact to assess and respond to pain levels experienced by two hospice patients living with HIV/AIDS. An overriding theme in these and other telehospice programs' development is the new capability to care for hospice patients who are particularly difficult to reach.
These telehospice use efforts should not be dismissed because of the very limited service delivery that they are testing, however. A small-scale and tentative approach is typical of most new technologies' adoption. In addition, these particular examples mirror early use of home telehealthcare (home telehospice's closest relative, and now quite in the ascendancy in alternate site care delivery). Home telehealthcare in its early days a decade ago had in fact typically targeted tiny segments of chronic disease populations (the two elderly ladies with diabetes in Kansas, for instance) to get a footing in tele-technology use.
Telehospice care delivery, though it shares many similarities with home telehealthcare, is very different from telehomecare service delivery. For one thing, a much broader range of health and comfort care services are required by hospice patients than by shorter-term home care patients. In addition, delivery of broader and comprehensive services to hospice is required, as identified within the scope of the Medicare Hospice Benefit (MHB). Familiarizing ourselves with this range of hospice services that ought to be delivered through conventional in-person means may help here, so that we can get a better sense of what should be planned for delivering, in part, via telehospice. We should note that hospice care services that are identified under the Medicare Hospice Benefit include:
- Physician services
- Home visits by nurses
- Home health aide assistance with activities of daily living (ADLs) such as bathing
- Social work and counseling
- Physical, Speech, and Occupational therapy, and dietary counseling
- Medical equipment and medical supplies
- Drugs for symptom control and pain relief
- Volunteer support
Under specific conditions (such as patients having a prognosis of 6 months or less to live; and patients' refusing curative measures), hospice services are paid for by the Medicare Hospice Benefit (MHB) or other similar insurers' hospice benefit, and paid for at a per diem rate of about $100. Telehospice services are included in this fixed payment amount. All covered services are provided free of charge to hospice patients.
Telehospice's development today is particularly important apart from addressing impending shortages of providers to deliver these usual services. Many new groups of patients in addition to the expected large numbers of aging populations will be admitted to hospice care in the near future. This expected change is a result of hospices today undertaking extensive outreach education to underserved populations who are not even aware of the existence and availability of hospice services. In these cases, we are looking at large numbers of culturally diverse patients and their family caregivers, many of whom may be located in already physically difficult to reach geographic locations. It is imperative that we locate new tools and alternate forms of delivery to serve these new hospice patients and provide targeted and appropriate care.
In addition, and not be overlooked, is the needier state of patients entering hospice today who require multiple and complex services delivered at a rapid schedule to provide needed comfort care. Delivering adequate services to all hospice patients requires us not only to increase usual contact with patients but use telehospice tools to significantly augment hospice care services that are required by today's more needy hospice patients.
III. Tools of Home Telehospice
Let's say that we do decide to start at step one of telehealth planning for hospice-which has long been thought of as the highest touch and lowest tech mode of service delivery of all- and simply try to replicate conventional hospice care services using telecommunications technologies in part to augment hospice visits. What tools are available to do so? Among telecommunications-ready tools that may be appropriate for home telehospice are these, as noted in Figure 1, below.
Telephones - the most familiar household communications tools, and of course one that can be used for checking on patients' status and providing reminders and other helpful interactions. Augmented features such as lighted dial pad and automated dial systems can make these tools easier to use by patients.
Individual measurement devices with telecommunications capabilities - include blood pressure cuffs, blood glucose meters, and other peripheral devices for tracking patients' individual measurements (blood pressure, blood glucose, pulse ox) more frequently between in-person visits.
Full-scale telehealth workstations - measure patients' range of physiologic parameters and transmit these readings to a central nursing station. Patients' status can thus be tracked more frequently between visits. Options are :
Videophones - are telephones with visual capabilities that can enable clinicians and patients/caregivers to speak directly to each other and see each other, too. Clinicians can use the phones to demonstrate care tasks and use them for other teaching opportunities.
Pre-programmed devices for clinical care , such as ambulatory infusion pumps, can meet multiple and complex infusion delivery needs, such as providing pain medications, hydration, and nutrition. An in-person professional visit to deliver this care is not always required.
Other educational and comfort measure tools - include audio and videotapes for show-and-tell purposes and for providing stress relief (by providing music or visualization therapies, for instance).
Figure 1. Telecommunications-ready tools that may be used for telehospice
The range of potential tools for telehospice delivery continues to grow. When choosing to use any or all of these tools in hospice, realistic expectations of how delivery can be improved include the ability to provide
- quicker assessments of patients;
- more timely interventions;
- more teaching opportunities for family caregivers.
We clearly have many new opportunities to "connect" with patients using telecommunications-ready tools.
However, not all telecommunications-ready tools can be used as effective adjuncts to conventional hospice care services. In fact, none of the tools on the list in Figure 1 is specifically a telehospice-ready tool. Few designers/manufacturers of telehealthcare tools have even considered whether there are any needed design issues for end-of-life patient needs (Kinsella, 2001). This is an important issue that hospice providers could do well to correct at this early stage in telehospice development, by contacting engineers and designers about specific needs for hospice. Hospice patients are usually more fragile and needy than home care patients. New tools (such as those in Figure 1), designed for the most part for home telehealthcare delivery, must be matched appropriately to the hospice patients' (and/or their caregivers') needs and to their capabilities to use them correctly and safely-a concern that will be addressed in the segment below.
IV. Making the Match Between Telehospice Tools and Patients and/or Family Caregivers
Matching telecommunications-ready tools with hospice patients' and family caregivers' needs and capabilities is essential for ensuring that the tools are used correctly and safely. Please refer to our Patient Assessment segment in the Home Telehealthcare essay for details on the kinds of capabilities patients must have to be assigned appropriately to home telehealth and so likely benefit from telehealth's use. A sample form is provided for this assessment there. All of these qualities and capabilities-to adequately hear, see, understand directions, and so on-apply to telehospice patients and/or their caregivers, too, and must be assessed before assigning any patient to telehospice.
But there's more. We must also bear in mind that we are choosing tools that match the patients' capabilities today and that these capabilities may decline sometimes significantly during the hospice admission period. Thus there is a clear need for assessment of patients and caregivers before assignment to telehospice as well as reassessment of patients during the admission at intervals that are specified by each agency. Reassessments in particular need to be undertaken at least once- the findings can guide hospice team members in continuing to use telehospice interventions productively. On reassessment, hospice providers can gauge whether and how care delivery should proceed-that is, with or without ongoing tele-support, depending on the patients' status and caregivers' needs and comfort levels.
The importance of assessing and reassessing patients as appropriate for telehospice really can't be emphasized enough. The increased and focused contact that telehospice allows actually requires that patients and their caregivers become in effect important members of the hospice team. They can and must send or tell their hospice providers about the patient's status and needs so that the providers can plan and deliver the appropriate care. For this reason, it is absolutely critical that patients and/or family caregivers can communicate well, and can use the technology correctly. Appropriate assignment to telehospice clearly require more than patients and family caregivers simply agreeing to receiving off-site contact or televisits some of the time.
V. New Delivery Approaches
At this early state of its development, there isn't evidence yet of widespread use of telehospice and of its effectiveness. However, interesting new approaches for using telehealth and educational focuses as they relate to hospice and telehospice are being tested and with good results.
One new approach uses telehealth to inform people in home care about the availability of hospice services and the nature of its range of services. Home telehealth equipment is being used as a transitional tool for patients to encourage patients to enter hospice service as death nears. Carol Pearce, RN, of Alacare Home Health and Hospice Birmingham, AL, reports cases of patients being treated for congestive heart failure (CHF) using telemonitoring workstation equipment and being able to note their own significant decline. Counseling for these patients and their families has been remarkably more convincing, she notes, as difficult decisions about accepting approaching death and enrollment in hospice have needed to be made.
These transitions which are typically accompanied first by denial, anger, and fear-common to all of us as death is known to be imminent-have been made easier with the telemonitored information on the patients' decline at hand. In this case at Alacare, telehealth has been used to educate/inform patients and their families about the appropriateness of hospice care.
A second new approach also uses telehealth as an educational tool to inform people about hospice and is being tried as part of an outreach effort to contact typically underserved populations in hospice, such as African Americans and Asian Americans. Dr. George Demiris, who heads the Missouri Telehospice Project that spans five rural home health agencies has noted that use of telehealth at these agencies enables staff to connect with patients that are not usually seen in hospice. Once contact has been made through home care and telehomecare, then the nurses can more easily inform these patient about hospice services and availability of the services to them.
Examples of other underserved populations, particularly those residing in rural America, and who are learning about hospice and its availability are increasingly being shared by the estimated 15 home telehospice programs that are currently underway, as of 2004 (Kinsella, 2004). However, quite an interesting example of extending care and minimizing barriers to care is provided by Gina Banks, RN, WOCN, of Integris Healthcare ( Oklahoma City , OK ), in a case which indicates that telehealth in some instances may also be useful for providing evidence of demonstrable needs for particular health service.
Ms. Banks notes a case of a very rural hospice patient whose severe wounds required specialized care. However, this patient's doctor refused to consent to ordering such services unless the ill and fragile patient could be examined by him personally in his offices. She notes:
"We took a videophone to the home and did a live transmission of the patient and wound status to the doctor in his office. He said he had had not realized the degree of decline in the patient's condition and promptly ordered appropriate palliative treatment."
As Ms. Banks concluded,
"the patient died within weeks but his comfort level had been significantly increased as a result of the convincing 'tele-connect' with the patient's doctor."
VI. Directions for Telehospice
Like telehomecare, studies of telehospice are showing that more frequent and as-needed contact with patients can provide needed care in a timely manner. But we are currently at the very edge of this new frontier-telehospice. Once we have used the capabilities at our disposal to introduce patients and their caregivers to hospice care, we will also need to find out how this mode of contact can raise the comfort level of patients and family caregivers by helping them feel connected to professional service or advice at the touch of a button.
Why is this contact so important? There is neither staffing nor funds to provide 24/7 professional care to most hospice patients. In fact, the great onus of daily hospice care delivery is placed on the patient and particularly on the family caregiver. As many hospice industry observers have noted, these caregivers are untrained, ordinary people who suddenly are thrust into a role of providing the same care that a team of professionals would have rendered in the hospital setting. Many if not most of these caregivers need regular and frequent contact. They very much need to be shown and told what to do.
We have the opportunity today with telehospice not to have patients and their caregivers just choose between machine or nurse or possibly no care at all. Rather, in view of impending nursing shortages and other factors that will potentially limit conventional hospice services, we need to look at using all appropriate means-machine, nurse, caregiver/team player, and all other such resources-to better extend improved care and comfort measures as patients near the end of life. For its part, telehospice's role must be wide ranging as well and extend on, not merely replicate usual care services so that more than adequate clinical care and support is provided to patients who are nearing the end of life and to their caregivers. As a result of taking a broad approach to using telehospice and other adjuncts to conventional hospice care service delivery, we can better increase patients' comfort levels. And, increasing patients' comfort levels is of course one of the key tenets of hospice service delivery.
Dartmouth Atlas of Healthcare. 1998. Viewed online, August 10, 2005, http://www.dartmouthatlas.com/pdffiles/ATLAS98.PDF on the availability of hospice, particularly in geographically distant areas of the U.S.
Government Accounting Office. 2000. Medicare: More Beneficiaries Use Hospice, Many Factors Contribute to Shorter Periods of Use . Washington , DC : GAO.
Information For Tomorrow. 2004. Telehospice: Needed and Improved Services at End of Life. Installment of the Home Telehealth Community of Care page, at: http://www.informationfortomorrow.com/community/telehospice.htm Viewed August 10, 2005.
Jennings , B., Rhydes, T., D'Onofrio, C., Baily, A. 2003. Access to Hospice Care: Expanding Boundaries, Overcoming Barriers. Garrison , NY : The Hastings Center . Special supplement, Mar/Apr. 60 p.
Kinsella, A. 2003. Home Telehealthcare: Process, Policy and Procedures. Kensington , MD : Information for Tomorrow. See particularly pp. 130-131 for a sample of the Patient Assessment as Appropriate for Telehealth Service Delivery form.
Kinsella, A. Mar. 2001. Tailoring telemedicine for end of life needs. Virtual Mentor segment of American Medical Association's Web site, at:
http://www.ama-assn.org/ama/pub/category/4373.html Viewed August 10, 2005.
Kinsella, A. 2004. Telehospice: A Resource Manual for Program Development and Implementation. Asheville , NC : Information For Tomorrow.
National Hospice and Palliative Care Organization. 2003. What is hospice and palliative care? Alexandria , VA. Online at: http://www.nhpco.org/i4a/pages/index.cfm?pageid=3281 Viewed August 10, 2005.
Schmidt, LM, Kinsella, A. 2003. Enhancing communications with multicultural patient populations. Caring Magazine, Mar.: 32-35.