Hospice: A Resource for Patients and Those Who Care for Them
Susan Campbell, MSW, LSW
During the middle ages, a hospice was a place of shelter––usually provided by monastic orders––for pilgrims or other travelers in need of lodging. In keeping with the spirit of caring in these offers of hospitality, the word hospice has been used for at least a century to describe facilities devoted to the care of the dying and, more recently, to a specialized approach to the care of the dying that is used in a number of settings.
An English woman named Cicely Saunders—nurse, social worker, and physician—is generally credited with launching the modern hospice movement. Saunders was committed to providing care that responded to a patient’s “total pain”—her term for the physical, spiritual, psychological, and social pain of the dying patient—emphasizing a “multi-disciplinary approach to caring for the dying, the regular use of opioids to control physical pain, and careful attention to social, spiritual and psychological suffering in patients and families” (Hospice Education Institute, nd).
As these definitions, and others, make clear, one essential element of hospice is attention to the whole person, and the whole range of human needs invoked by the dying process. The Hospice Education Institute takes note of attention to the psychosocial component in a timeline of hospice history, as follows: “1935-1990s: Interest grows in the psychosocial aspects of dying and bereavement, sparked by the work of Worcester, Bowlby, Lindemann, Hinton, Parkes, Kubler-Ross, Raphael, Worden and others (Hospice Education Institute, nd).”
After many years of effort and preparation, Saunders established St. Christopher’s Hospice in London in 1967. The first U.S. hospice—New Haven Hospice, now Connecticut Hospice—was established in 1974. According to the National Hospice and Palliative Care Organization, more than 950,000 patients were served by hospice in 2003, and more than 8 million patients have been served since the inception of hospice care in the United States (National Hospice and Palliative Care Organization, nd).
Some Hospice Basics
Who:
Hospice was developed in response to the needs of the dying patient, but the family and others involved in the patient’s care are also, and equally, a focus of hospice attention. This focus is the natural outgrowth of a number of hospice principles and operational characteristics. For example, commitment to a team approach is a hallmark of hospice, and these teams include not just health care professionals, but the patients and their families. Including family members is motivated by more than family feeling. Family members are often the primary caregivers for hospice patients, and they may need support from hospice staff and volunteers to fulfill this role effectively. Compassion is another hallmark of hospice care, compassion not only for the patient but also for those who are threatened with, or experience, the loss of a loved one. This is reflected in the hospice commitment to make bereavement support available to families for up to a year after the death of a patient, which is also a Medicare requirement.
The professional portion of the team usually has the following core members: a hospice physician, a registered nurse, a nursing assistant, a social worker, and a chaplain. The patient’s doctor can be part of the team along with the hospice physician, and patients can choose nurse practitioners as their attending physicians. The team may also include homemakers, home health aides, and various therapists (e.g., physical, occupational, and speech-language). Music therapists have an increasingly recognized and valued role, sometimes playing music in sync with the breathing patterns of the patient who is actively dying. Volunteers are integral to the team, not only because of the valuable contributions they can make to the well-being of patients and families, but also because hospices receiving Medicare payments must document that volunteer services, direct or administrative, are equal to at least 5 percent of the total patient care hours of their paid and contract staff.
What:
Hospice is “a special way of caring for people who are terminally ill,” according to the booklet, Medicare Hospice Benefits (Centers for Medicare and Medicaid Services, 2005, p.3). In practical terms, this translates into the following list of “hospice services for your terminal illness and related conditions” (p. 6), defined by Medicare:
• Doctor services
• Nursing care
• Medical equipment (such as wheelchairs or walkers)
• Medical supplies (such as bandages and catheters)
• Drugs for pain control or pain relief (usually with a co-payment for each prescription drug, not to exceed $5; for those enrolled in Medicare prescription drug coverage, drugs unrelated to their terminal illnesses would be covered)
• Home health aide and homemaker services
• Physical and occupational therapy
• Speech therapy
• Social worker services
• Dietary counseling
• Grief and loss counseling for the patient and family
• Short-term inpatient care
• Short-term respite care (usually with a co-payment equaling 5 percent of the Medicare payment amount for inpatient respite care)
• Any other covered Medicare services needed to manage the patient’s pain and other symptoms, as recommended by the hospice team
When:
Hospice is sometimes described as care for those with “life-limiting” illnesses who are no longer seeking curative treatment. In operational terms, this has come to mean patients who have been certified as terminally ill, defined as those having six months or less to live if their illnesses run their normal course. Coverage of hospice services by Medicare requires that the patient’s own doctor and the hospice medical director certify that a patient has this prognosis. Patients can remain in hospice, however, much longer than six months—indefinitely, in fact.
Medicare provides hospice coverage in periods of care. Coverage begins with two, 90-day periods. After this initial six months, coverage is provided for 60-day periods, and a patient can receive coverage for an unlimited number of 60-day periods as long as a hospice doctor recertifies that the patient is terminally ill at the start of each. When a patient’s health improves, or a patient leaves hospice for other reasons, they go back to their pre-hospice coverage, for Medicare at least, with the option of returning to hospice when they again meet the eligibility requirements. (Although eligible patients can receive coverage for extended periods of hospice care, the great majority are in hospice for much less than even the first six-month period, as reported in the final section, below.)
Where:
Although the hospice started by Cicely Saunders was a freestanding inpatient facility, hospice has come to be associated largely with the provision of care, and the occurrence of death, in the patient’s own home. Some people believe that hospice is defined by home care. But hospice is defined by a philosophy, an approach to treatment, and a set of services, rather than by a location. Hospice patients can be cared for in their homes, in hospitals, in outpatient clinics, in nursing homes and other extended care facilities, and in freestanding hospice facilities. Patients sometimes move among these settings as their conditions, or family needs, change. One example of this is when patients move from home into a facility (hospital, nursing home, or freestanding hospice) for respite care, providing a break for their regular caregivers.
How:
Although most private insurance plans offer coverage for hospice care, Medicare is the principal payer for hospice services. According to the consumer website of the National Hospice and Palliative Care Organization, more than 90% of hospices in the United States are certified by Medicare, 80% of those who use hospice care are over the age of 65, and Medicare hospice benefits are available to all who are eligible for Medicare Part A (Caring Connections, nd). Medicare covers most of the services that might be used by those in hospice care (outlined in the “What” section above), but there are some exclusions. The most fundamental exclusion in Medicare hospice coverage is treatment intended to cure a patient’s terminal illness. Patients who seek curative treatment, or what is sometimes called “aggressive treatment,” for their terminal conditions are not eligible for hospice benefits. They are, however, eligible to return to the Medicare coverage they had before entering hospice. Moreover, Medicare does continue to cover treatments for health problems that aren’t related to the patient’s terminal illness while a patient is in hospice. Hospice is also covered by Medicaid, for those who are eligible for that program, in 47 states and the District of Columbia (Caring Connections, nd).
A Higher Profile for Palliative Care
Hospice and palliative care are so closely related that it can be hard to tell them apart. In fact, the definitions used by some offer little or no discernible distinction. For example, in 1990 the World Health Organization defined palliative care as “the active total care of patients whose disease is not responsive to treatment” (World Health Organization, 1990). More recently, WHO defined palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organization, nd). These definitions and others like them could easily be read as definitions of hospice.
Some definitions do make clear distinctions between hospice and palliative care, and some describe the two in relation to one another. For example, the following appears on a “Patient Page” in The Journal of the American Medical Association:
“Palliative care is therapy that focuses on decreasing pain and suffering by providing treatments for relief of symptoms along with comfort and support for patients of all ages. Palliative care uses a team approach that involves the treating doctor, the family, and other health care professionals and social services. Hospice care, which involves helping ill individuals and their families during the last period of life, is often an important part of palliative care” (JAMA, 2005).
Defining hospice, the Centers for Disease Control and Prevention used the following in the National Home and Hospice Care Survey: “a program of palliative and supportive care services providing physical, psychological, social, and spiritual care for dying persons, their families, and other loved ones” (Centers for Disease Control and Prevention, 2004). Hospice is described more simply as “the most intensive form of palliative care” in an article on end-of-life care published in the VA’s employee magazine (U.S. Department of Veterans Affairs, 2005).
Although the words are used differently by some, the similarities and differences between hospice and palliative care are perhaps most easily and widely understood as follows: The fundamental similarity between hospice and palliative care is a focus on comfort rather than cure and attention to the comfort, or well-being, of the patient on a number of dimensions, including, but not limited to, the physical. The fundamental difference between hospice and palliative care can be summarized in two distinctions: (1) hospice care is defined as care for the dying, whereas palliative care can be appropriate for any stage of an illness; and (2) hospice care assumes that the patient has forgone curative treatment for a terminal illness, or requires that the patient do so, whereas palliative care can be used alongside curative treatment (for example, to treat nausea associated with chemotherapy).
Both health care providers and the public have shown increased interest in palliative care in recent years. Some signs of this include the development of palliative care teams in hospitals, including major medical centers, and the addition of palliative care programs by some hospices, separate from their hospice programs. Some of the factors contributing to the increased interest in palliative care are the same as those that have contributed to the growth of hospice. These include a need to deal with the fact that people now survive for long periods with illnesses that would have ended their lives much more quickly in the past, and that technology has the potential to increase these periods still more. Growing attention to patients’ rights, including the right to pain management and relief, is another factor in the rise of palliative care.
The growing interest in palliative care includes an appreciation of its potential as a resource that can be used apart from hospice, even at the end of life. The idea of palliative care is, no doubt, less threatening to some dealing with life-limiting illnesses because palliative care does not include the hospice requirement of a terminal diagnosis. In order to secure hospice services patients must have, and be willing to face, a prognosis of six months of remaining life or less. This may put an obstacle between palliation and those who could benefit from it. Increased offerings of palliation as an approach to end-of-life care independent of hospice make it more likely that such care will be available, at least in theory, for those at the end of life who are not prepared to commit to hospice. (The benefit may be more theoretical than real because both Medicare and private insurance coverage is more limited for palliative care outside the hospice setting.)
Differences in needs and preferences concerning end-of-life care were highlighted in a press release concerning a National Institutes of Health study of the elderly: “A ‘one size fits all’ model for end-of-life palliative care doesn’t work,” according to principal investigator Dr. June Lunney. “People usually assume a terminal illness when thinking about the end of life. Yet only 23 percent of Americans die of cancer, the most common illness with a distinct terminal phase. Most, particularly those who are chronically ill, are not diagnosed as ‘terminal,’ yet they may also need palliative care” (National Institutes of Health, 2003).
Too Little Too Late?
Hospice workers often lament the limited time they have to work with their patients. Whether from reluctance to choose hospice care on the part of physician, patient, or family, or from other factors, length of service is lower than many in hospice would like it to be, and lower than some patients and families wish it had been after the fact. According to CDC’s National Home and Hospice Care Survey, “almost two-thirds of patients received hospice care for less than 30 days in 2000 and the median length of service in 2000 was 16 days, down from 27 days in 1994. . . Over a third of patients discharged in 2000 [for any reason, including death] had a week or less of hospice care” (Centers for Disease Control and Prevention, 2003). According to the Institute of Medicine, “the average length of stay in a hospice fell from an average of 90 days in 1990 to 48 days in 1999…[and] half of Medicare hospice users received care for 19 days or less” according to a General Accounting Office review in 2000. A week or less was common according to the GAO review” (Davis, 2001).
At the same time, there has been some broadening of the use of hospice across diagnoses. Hospice was initially used almost entirely for patients with cancer and, later, HIV/AIDS. According to the National Home and Hospice Care Survey, “Cancer remains the most common primary diagnosis for those discharged from hospice [for death or other reasons], but the proportion decreased from 75% in 1992 to 58% in 2000. Other primary diagnoses for recipients of hospice care are heart disease, dementia, cerebrovascular disease and chronic obstructive pulmonary disease” (Centers for Disease Control and Prevention, 2003).
Still, hospice is not for everyone. Many patients and family members are unwilling to stop curative treatment, no matter the prognosis, and see hospice as giving up—giving up on the patient, giving up hope. In addition, some people have negative views about hospice care, from their own experience or others’, because hospice is subject to the kinds of imperfections, limitations, and serious problems that plague all systems of health care, other service delivery systems and, in fact, all systems. Moreover, concerns about hospice have risen, along with concerns about health care more broadly, as financial factors are seen by many to threaten quality of care.
In a 2001 article in USA Today, criticism of hospice focused on this concern: “Hospice care traditionally has been viewed as a charitable service offered by professionals whose aim is to ease the suffering of the dying. And while that’s still true to a point, big changes in health care have had an impact, and hospice care has become big business. As a result, hospice care, like the rest of health care, has become prone to mistakes, as the needs of patients are balanced against the financial bottom line.” And later in the article: “Most people think of hospice care the way it began in the late 1960s and early 1970s, as a charitable service. But a major shift came in the 1980s when Medicare started paying for such care. The number of for-profit hospices soared, and by 1998, hospice care had become the fastest-growing benefit in the Medicare program” (Davis, 2001).
The USA Today article cited concern at the Institute of Medicine to shore up this point: “The Institute of Medicine (IOM) is urging the medical community to take a closer look. A report from the prestigious arm of the National Academies, which gathers independent scientists to advise federal policy-makers on matters of science, last June called for sweeping efforts to improve end-of-life care for those ‘who are dying nameless and faceless without a priority.’
“Among the recommendations: studies to show exactly how hospice care is being delivered in the USA.
“‘We are in the throes of social change, and we don’t have much measurement,’ says Joanne Lynn, who was on the panel and also serves as director of the RAND Center to Improve Care of the Dying, based in Arlington, Va. ‘We should do a random sampling of hospice care and learn what we are doing’” (Davis, 2001).
In the meantime, anecdotal evidence strongly suggests that most people have positive experiences in hospice. Hospice professionals and others frequently report that the comments they hear most often from patients, and still more often from family members after the death of a patient, are along the lines of, “The hospice people were wonderful, so helpful. Why did we wait so long?”
Despite the growth in acceptance and use of hospice, there are still major areas of ignorance and misunderstanding, and sometimes disagreement, among patients and families, as well as some health care providers. There are family members who believe, for example, that hospice will provide 24-hour care for their loved ones. Although hospice staff are on call 24 hours per day, the reality is that family members, or those they engage to help (in their homes or nursing homes), are expected to serve as primary caregivers. Hospice provides continuous care only rarely, for emergencies.
Another, more serious misapprehension is that hospices are advocates for euthanasia and work to hasten death. This view probably arises from the hospice requirement that patients forgo aggressive curative treatment on one hand, and the aggressive use of opioids in hospice on the other. One hospice response to this view is that hospice seeks neither to hasten nor to prolong death, but to assist patients in living until death comes. The view that associates hospice with euthanasia frustrates many who work in hospice, not only because it makes some patients and families reluctant to enter hospice, but also because it is antithetical to the views of many hospice advocates. This includes Cicely Saunders, who saw hospice as an alternative to euthanasia—a way to manage the dying process, and especially the pain that causes the greatest fear of the process among patients, so effectively that there would be no need to consider euthanasia.
A Note on Dame Cicely Saunders
Dame Cicely Saunders died in July of 2005, at age 87, in the hospice she founded. The BBC obituary included the following words from Dame Cicely: “I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, ‘For someone to look as if they are trying to understand me,’” she said. “Indeed, it is impossible to understand fully another person, but I never forgot that he did not ask for success, but only that someone should care enough to try” (BBC News, 2005).
References
BBC News. (2005). Retrieved September 14, 2005 from http://news.bbc.co.uk/1/hi/uk/4254255.stm.
Caring Connections. (nd). How is hospice paid for? Retrieved September 1, 2005 from http://www.caringinfo.org.
Centers for Disease Control and Prevention. (2003). Characteristics of hospice care discharges and their length of service: United States, 2000. Series Report 13, No. 154
Centers for Disease Control and Prevention. (2004). Retrieved September 4, 2005 from http://www.cdc.gov/nchs/ about/major/nhhcsd nhhcsdefhospicecare.htm.
Centers for Medicare and Medicaid Services. (2005). Medicare hospice benefits. Retrieved August 20, 2005 from www.medicare.gov.
Davis, R. (2001). The painful truth of hospice care. USA Today, August 19, 2001.
Hospice Education Institute. (nd). A short history from the middle ages to the 21st century. Retrieved September 17, 2005, from http://www.hospiceworld.org
JAMA. (2005). Patient page. 293(11), March 16, 2005
National Institutes of Health. (2003). NIH news (press release), May 13.
National Hospice and Palliative Care Organization. (nd). Retrieved September 12, 2005 from http://www.nhpco.org.
U.S. Department of Veterans Affairs. (2005). Comfort and compassion. Vanguard, LI(1), January/February.
World Health Organization. (1990). Cancer pain relief and palliative care. Technical Report Series 804.11. Geneva: WHO.
World Health Organization. (nd). Retrieved September 1, 2005 from http://www.who.int/ cancer/palliative/definition/en
Susan Campbell completed her MSW at Loyola University Chicago, including an internship at Edward J. Hines Jr. VA Hospital, in 2005.