About Hospice Care
I. Home Hospice: An Introduction
Hospice is a range of health and comfort care services that are delivered to patients who are nearing the end of life. In most cases, these patients have refused or otherwise are ineligible for receiving curative measures such as surgeries or advanced medical treatments. They are expected to live for 6 months or less after their admission to hospice care. The foremost consideration in hospice delivery is providing increased comfort care services.
Included in hospice's range of care-focused services are activities such as medication delivery, particularly measures for pain relief; assistance with bathing and activities of daily living (ADLs); and spiritual counseling. The types and frequency of all hospice services can be targeted for hospice patients and very much based upon their particular needs that are indicated throughout their hospice admission period. These services are delivered most often in the patients' homes (that is, an estimated 90% of hospice services in the U.S. are delivered to personal residences, not a "hospice facility" of some sort). Furthermore, hospice care services are delivered by a hospice care team comprised of physicians, nurses, social workers, therapists, aides, pastors, and volunteers, all of whom address comfort care issues. In all, these services attend to physical, spiritual, and other human needs that matter to end of life patients.
Is hospice all a fairly professional managed team providing prescribed services and visits for 6 months or until a patient dies? We need to look at "how" the end of life days can be lived to better understand what roles the "team" can play. The following example is cited in Larry Beresford's The Hospice Handbook , from "Beverly," a wife of a hospice patient named Don, who had incurable melanoma, and who reports:
"The decision to enroll in hospice meant no more visits to the cancer clinic to see Don's physician. So we got from hospice that one-on-one, professional, physical caregiving, where he was being monitored regularly by the nurses, who kept in touch with the doctor. As far as medications, whatever, they kept track of what he needed and didn't need, as changes occurred. That was vital, because this could all be done in our home, in a very loving environment, rather than with hospitalizations and trips to the doctor..
I deeply appreciated the help with housekeeping [from hospice home health aides], because it wasn't just housekeeping, it was staff who would come and visit with Don and hold his hand, and get to know him, and talk. Then they would go do the laundry, which was increased because of his illness-caused incontinence.
[As the author, Larry Beresford comments: "This support from the hospice home health aide was invaluable because it freed Beverly up to spend more quality time with her husband."]..
What I saw happen with the hospice care folks encouraged me and encouraged Don to reminisce a great deal, and to talk about the life that he had lived, the life that I was yet to live, and there was always a sense of celebration in that-it was the craziest thing. During his illness, Don read a lot, enjoyed visits from the children of his first marriage, and said a lot of farewells. Fortunately, he knew the time limitations he had in life. A lot of people don't have that. He was able to close his life here in a lot of good ways. The telephone was beside him at all times,, and he called people frequently. We also talked a lot. My office hours were shortened, and when I came back home, I would get into loungewear and we'd both curl up on the hospital bed together and talk and talk and talk. They were very precious time, and I would encourage that for people who accept hospice into their lives, to really appreciate those moments, because they're treasures to me now. We created a lot of memories together.
(From Beresford, The Hospice Handbook, pp. 107-108.)
II. Hospice Care Delivery in the U.S. Today
Is hospice for everyone? It could be. There are currently more than 3200 hospice programs operating in the U.S. and serving approximately 1 million Americans/year during their final days and months. Sounds like a lot. However, this estimated number of patients indicates that only one in 4 Americans who die each year receive comfort care at the end of life. Hospice is more readily available (or affordable) than most people think, however. The Medicare Hospice Benefit, instituted in 1982, pays for all care services, many supplies, and drugs for pain control and symptom relief.
Nonetheless, most Americans in fact do not know about hospice service or that they are eligible for fully paid-for care by Medicare and some other insurers. An educational mission among many national and other hospice-related organizations, therefore, is informing the general American public about hospice's existence and its availability to patients with a life expectancy of 6 months or less. There is a considerable thrust, too, to inform people that hospice in not a place, per se, but a concept of care - that is, care that is delivered where the patient may feel most comfortable, namely the home. A second important mission of late is to increase access to services by culturally and/or geographically distant groups of Americans who may benefit from receiving hospice care services.
Hospice can be a very wide range of health and comfort services delivered to patients who are nearing the end of life. In general, the health and comfort services that could be expected by each patient are usual health assessments; assistance with activities of daily living (ADLs) such as eating, grooming, and bathing; and provision of certain medical equipment in the home, such as hospital beds and medical supplies such as bandages. However, many more particular services based on patients' needs could also be provided through a patient's hospice team members. For example, a social worker might help with financial planning and getting one's papers in acceptable (to the patient) order. In another case, a pastor might help counsel a patient to accept certain of his family member's shortcomings and leave his life feeling more tolerant and at peace.
The Hospice Team and Care Delivery
Hospice services are planned and delivered by a designated team at a hospice agency, but there are no "packaged" or general-purpose hospice services. A nurse may spend most of her visits focusing on pain relief and management techniques with the patient and family. A social worker may assist the caregivers in scoping out community organizations that can assist in providing assistance with family caregiving stress and lifestyle changes. All hospice services are based on assessment by hospice team members of each patient's needs and comfort levels. Providing full-time or 24/7 in-person professional care is not an aimed-for goal in hospice, although availability of contact with a team members is to be expected as required by the Medicare Hospice Benefit's stipulations, and particularly contact with physician, nurse, and/or pharmacist.
Given this circumstance of less regular, in-person professional care in hospice, a key concern in hospice care delivery is educating and working with in-home family caregivers so as to improve the day-to-day care of hospice patients as much as possible.
[Note: See the Telehospice essay on this site which indicates the likelihood of increased contact with and by patients and their families through use of telecommunications-ready technologies.]
However, there are many challenges to meeting this concern with providing improved not just increased day-to-day care. Among these challenges is in first recognizing the many cultural differences in Americans' approach to end-of-life care. As a result of these differences, hospice service delivery must be tailored in ways that are considered acceptable practices for multicultural hospice patients and their families. Just as there are no packaged hospice health and comfort care service delivery programs for patients, so hospice delivery to patients' families requires considerable care in targeting measures that are appropriate and acceptable to the families' cultural practices and beliefs.
Philosophy of Hospice Care Today
Hospice and the hospice movement were initiated in England in 1967 by Dame Cecily Saunders, RN, MD, who focused her efforts on reducing the excessive pain that cancer patients routinely experienced as they neared end of life. Improved pain management for end-stage cancer patients was a focal point of Saunders' work in hospice. In the U.S. , this same focus was particularly influential in planning hospice care and services by the mid-1970s. As a result of much lobbying and public education about cancer patients' needs for pain relief and insured medical care and payment for treatments, hospice became a paid Medicare benefit in 1982. At this time, hospice also became associated by many Americans as care delivered exclusively to cancer patients.
Correcting this misconception about cancer being the sole diagnosis making patients eligible for hospice services is a focus of today's American hospice movement's educational efforts. Targeted groups to receive education and information about hospice and its value are:
• Pastoral groups and various church and faith community leaders who are in an influential position to introduce and recommend hospice to their constituents
• Physicians who have opportunities to recommend hospice to their patients who are nearing end of life
• Other groups who are likely to have contact with dying patients and their families.
Information is being provided about the range of patients other than those with cancer who are eligible for hospice services, such as patients who have reached end stages of renal and respiratory diseases, HIV/AIDS, ALS, Alzheimer's, among other diseases and diagnoses that have reached an untreatable stage. There is also accompanying information being provided about the many hospice services that are available, such as assistance with nausea relief and with advanced depression in patients, as well as about respite services for family caregivers. The range of services is actually quite large, and given the very varied backgrounds and needs of hospice patients and their families, it has to be. According to Douglas C. Smith, an expert on hospice care service and planning, what's a given in hospice is this: "A person's problems are continually changing in category, type, and degree of severity."
III. Hospice Patients and Their Needs
While just over half of the total number of patients who are cared for annually by hospice services are cancer patients, a growing number of hospice patients have other chronic, life-threatening illnesses, such as end-stage heart and lung disease. According to statistics compiled by the National Hospice and Palliative Care Organization (NHPCO), a recent breakdown of hospice patients and their diagnoses includes this range:
Comfort care measures for all patients are pursued, as required by the Medicare Hospice Benefit, with an average of about 5 visits per week per patient by hospice workers on the designated team. In addition, bereavement services are offered to patients prior to death and are also offered to families for at least one year after death.
Use of hospice services by patients and their families varies considerably according to physical and other immediate needs of the patients. However, use of hospice also varies according to multiple other factors-among these, patients' and their families' cultural attitudes toward death, toward pain relief and suffering, and a number of other differences. There simply cannot be "packaged care" for anyone in hospice. Rather, there has to be a good deal of availability and choices to provide optimal comfort care.
Take, for instance, care provision to multicultural populations-there is much we don't know about "optimal" care and much to learn. Hospice care in the U.S. has been typically been used extensively only by White, often middle-class populations, rather than other groups, such as Black or Asian Americans. Providing care to these groups may require additional steps to be undertaken by the hospice team, such as this one suggested for delivery of care to members of the Black American community:
An important factor for planning hospice care in the Black community is recognizing the influence of family and extended family members in a patient's care. These individuals are particularly important to patient's care, as many Blacks are willing to divulge preferences and wishes to family members-who must, in effect, be incorporated into the hospice care team of doctor, nurse, social worker, and other of the usual players (Hans and Phipps, 2001).
In another example of reaching out to other cultures, say-Asian Americans, it should be noted that Asian American patients follow particular practices of which the hospice care team should be aware (Schmidt and Kinsella, 2003). For instance, in Asian culture, health decision making is clearly proscribed to be undertaken by specific individuals. Even if an elderly patient is competent to make decisions, the responsibility for making the decisions usually falls on the elder male family member. A hospice team member's focusing on the patient's preferences and wishes rather than this family member's decisions may antagonize the rest of the family. Clearly, all cultural and ethnic groups have unique customs and behaviors that can impact hospice care service delivery: learning more about the cultural histories and related needs of hospice patients can greatly enhance the care that is provided.
IV. Innovative Hospice Delivery Modes
New means of delivering hospice care services are all about increasing patient comfort levels. A recent issue of the National Hospice and Palliative Care Organization's (NHPCO's) Newsline magazine (Summer 2005) provides examples of these new means in hospice care facilities, for example (that is, in residences apart from individual homes but rather in stand-alone facilities). These examples expand on hospice's philosophy to increase comfort care delivery. The "new" means include, in one such facility, residential visiting animals such as cats and dogs who travel from room to room, regularly visiting musicians, aromatherapy, aviaries in the building, fresh flowers in every room and day trips to gardens and other sits offering comfort potential, as patients are capable of using them. According to an administrator of one such hospice featured in this issue: "The therapies used here complement traditional medical treatment for easing pain, controlling symptoms, and increasing the quality of life."
V. Projected Goals for Hospice Care Delivery in the 21 st Century
Goals for improved hospice care delivery include the following:
• Better public education about hospice-its services and its availability to all Americans who are nearing the end of life.
• Earlier admission to hospice and delivery of hospice care. It is believed that patients need at least 30 days to benefit from hospice care. Currently, many studies of "too-short" stays in hospice-30 days or less-indicate that more immediate and intensive care are required by patients and as a result, much less focus can be placed on the much-needed longer-term comfort care that attends to the patient's and family's medical and personal needs.
• Overcoming geographic barriers to hospice care, most likely by using telecommunications in hospice, or telehospice, or other means and services to reach out to rural and otherwise less accessible hospice patients and their families.
• Serving the underserved, especially minority group and meeting the multicultural needs/information provision to these Americans. In this regard, steps are being undertaken to recruit culturally diverse providers and making efforts to educate community spokespeople/leaders in underserved cultural populations to take the message of hospice to their communities.
• More focus on palliative care delivery, as a transitional step between chronic care and hospice care service delivery. New focuses on longer term palliative care, for the millions of Americans who live their adult lifetimes with chronic diseases such as diabetes and heart disease, can provide a bridge linking patients easily to hospice as the last piece in an expected continuum of care.
Even with burgeoning numbers of elderly American (the aging Baby Boomers) taking advantage of tomorrow's hospice system, hospice patient needs can expect to be met, despite cultural and geographic differences. Most particularly, as we become more aware of capabilities of telehospice (See the Telehospice article below), and other alternate means to communicate with end of life patients, we will be able to provide a very wide range of targeted hospice care services for them.
Beresford, Larry. 1993. The Hospice Handbook: A Complete Guide . Boston : Little, Brown and Company.
Dartmouth Atlas of Healthcare . 1998. Viewed online, August 20, 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.
Harris, D., Phipps, E. 2000. Study examines end of life concerns in Philadelphia African-American community. The Exchange , 5: 8-9.
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. 2004. Telehospice: A Resource Manual for Program Development and Implementation. Asheville , NC : Information For Tomorrow.
National Hospice and Palliative Care Organization. June 2005. Newsline , Quarterly issue.
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.
Smith, Douglas C. 1997. Caregiving: Hospice-Proven Techniques for Healing Body and Soul. New York : McMillan.