Michael R Leming. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1: The Presence of Death. Thousand Oaks, CA: Sage Reference, 2003.
I’m afraid of the pain.
I don’t want to be alone when I’m dying.
I’m afraid of a long, protracted period of suffering.
I don’t want to die in a hospital. Let me die at home.
I’m not afraid for myself, but I am worried about the effect of my death on those I love.
~ Frequent responses to the question, Does dying frighten you?
Of the eight different types of death fears, the three that cause the highest anxiety are the fear of pain, the fear of dependency, and the fear of isolation (Leming 1979-80). Among Americans, as the comments above reflect, it is the process of dying, and not the event of death, that causes the most concern. In this chapter, I examine the worldwide hospice movement that has developed as a response to fears related to the dying process and the ways in which death is typically handled in institutional settings. The three primary patient concerns that hospice care addresses specifically are problems related to symptom and pain control, the apprehension caused by having others in control of one’s life, and anxiety about being alone at the time of death (Magno 1990).
Hospice should be thought of primarily as a concept of care—a way to provide humane and supportive care for dying patients and their families (Burns, Carney, and Brobst 1989:65). The philosophical origin of the hospice movement is found in the teachings of Jesus, who encouraged his followers with these words:
Then I, the King, shall say to those at my right, “Come, blessed of my Father, into the Kingdom prepared for you from the founding of the world. For I was hungry and you fed me; I was thirsty and you gave me water; I was a stranger and you invited me into your homes; naked and you clothed me; sick and in prison, and you visited me.” … “Whenever you did these things for the least of these my brothers, you were doing them for me!” (Matthew 25:34-36, 40)
The words hospice, hospital, hostel, and hotel are all derived from the same Latin root, spitium, which means “host” or “guest.” According to Kenneth Cohen (1979), “The first hospitals were actually an outgrowth of religion rather than of medicine” (p. 15). As early as the fourth century, Roman Emperor Julian expressed his concern about the emergence of the Christian movement. As a response to the Christian emphasis on humanitarianism, Julian encouraged the priests of the ancient Roman religion to “establish hospices (xenodochia) in every city and thereby not permit others to excel us in good deeds” (quoted in Phipps 1988:93).
In medieval times, the word hospice referred to a way station for travelers needing assistance. Sandol Stoddard (1978) and William Phipps (1988) describe some of the early medieval hospices. Probably the most famous hospice in the world is the Hospice of Great Saint Bernard in the Alps. This hospice, founded more than a thousand years ago, trains dogs to rescue travelers lost on the Alpine slopes. With the passing of time, the word hospice came to encompass houses maintained for the sick as well as for travelers.
As the secularization of the modern age has progressed, hospitals have come to be dominated by secular administrators and medical practitioners who have established the priority of providing medical cures for the acutely ill rather than caring for those who are incurable. In 1905, the Irish Sisters of Charity established St. Joseph’s Hospice in Hackney (near London) to provide patient-centered care for the terminally ill. One-third of the beds at St. Joseph’s Hospice are reserved for patients who are expected to live only 3 months or less (Phipps 1988:96). According to the medical director of St. Joseph’s Hospice, J. F. Hanratty, M.D., many physicians find it difficult to care for patients whom they cannot cure and to accept palliative medical skills and treatments as authentic medical protocol. It is not uncommon to hear a medical practitioner tell a terminal patient, “There is nothing more I can do.” Hanratty notes:
At St. Joseph’s “more” is done, and the “more” is sophisticated therapies to control, as much as possible, all of the patient’s distressing symptoms. The practice at St. Joseph’s Hospice is, first of all, to establish that the diagnosis is accurate and that death is not far distant. The management of terminal illness then requires a change of roles and attitude on the part of those caring for the patient. (quoted in Carr 1989:266)
St. Christopher’s Hospice in London, England, played a pivotal role in the development of the modern hospice movement by disseminating the hospice concept of care—that of ministering to the spiritual and physical needs of dying patients. St. Christopher’s was founded in 1967 by Dr. Cicely Saunders, who began her career as a nurse and subsequently became a social worker. However, it was not until Saunders became a physician and obtained a grant to work with the Sisters of Charity at St. Joseph’s Hospice for several years that she began to influence the course of institutionalized health care for dying patients on an international scale. Queen Elizabeth II recognized Saunders’s achievements in 1981 by honoring her with the status of dame.
The first modern hospice program in the United States was the Connecticut Hospice, the origins of which were directly related to St. Christopher’s. In 1963, Dr. Cicely Saunders was invited to lecture in New Haven at the Yale University School of Medicine. Over the next several years, contacts between Saunders and personnel from the Yale Nursing and Medical Schools were frequent. Local leaders from various disciplines became involved in the development of a hospice in Connecticut, and their planning resulted in the establishment in 1971 of Hospice Inc., the name of which was later changed to the Connecticut Hospice.
The original intent of the planning group was to build an inpatient facility similar to St. Christopher’s. Funding proved to be a problem, however, and the group decided to inaugurate a home-care program in 1974. To test the viability of home care, the National Cancer Institute provided funds for a 3-year demonstration project. As a result, an inpatient facility was eventually built with the help of both federal and state funds; this facility opened in Branford, Connecticut, in 1980.
After the inpatient facility was completed, the Connecticut Hospice, with the help of a foundation grant, organized a separate corporation—the Connecticut Hospice Institute for Education, Training, and Research, Inc. The institute offered special help to health care leaders who wanted to improve the quality of care offered to terminally ill patients and their families. In 1981, the institute was merged with its founding organization; today, it continues its educational work as the John D. Thompson Hospice Institute for Education, Training and Research, Inc., the teaching arm of the Connecticut Hospice. The institute’s purpose is to “share the hospice philosophy, and experience and skills with students, caregivers, administrators, the lay community and all those who desire to improve the quality of care for patients experiencing an irreversible illness and their families” (Connecticut Hospice 1997).
Since that beginning, the number of hospice programs throughout the United States has increased dramatically. Currently, more than 2,800 programs across the country serve more than 400,000 patients annually. In 1978, the National Hospice Organization was formed to provide for coordination of hospice activities and to assure that high standards of care would always be demonstrated by any program calling itself a hospice. Instrumental in working toward an accreditation procedure, this organization, which was renamed the National Hospice and Palliative Care Organization (NHPCO) in February 2000, also provides educational programs, technical assistance, publications, advocacy, and referral services to the general public. In addition to the NHPCO, which serves most of the nation’s hospices and more than 4,200 professional members (National Hospice Organization 1997), every state now also has its own hospice organization to promote education and standards of care.
As of 1997, the National Hospice Organization estimated that more than 25,000 people were employed in hospice care across the United States, serving an estimated 400,000 patients each year. The 2,800 hospice programs existing at that time each served an average of 140 patientfamilies per year, and in serving these patients, more than 96,000 volunteers contributed more than 5.25 million hours of their time each year.
The Nature of the Contemporary Hospice
Although there are different types of hospice institutions, all hospice programs are unified by a shared general philosophy of patient care. Hospice is a specialized health care program that serves patients with life-threatening illnesses. In 1996, approximately 78% of hospice patients in the United States had cancer, 10% had cardiovascular diseases, 4% had AIDS, 1% had renal or kidney disease, 1% had Alzheimer’s disease, and the remaining 6% had a variety of other diseases (National Hospice Organization 1997). Nationally, in 1992, the average hospice patient spent 64 days in hospice care (National Hospice Organization 1997). More than 90% of hospice care hours are provided in patients’ homes, with inpatient care available as needed. In hospice, the patient-family is the unit of care. The primary goals of hospice care are to promote patient-family autonomy, to assist patients in obtaining pain control and real quality of life before they die, and to enable families of patients to receive supportive help during the dying process and in the bereavement period.
A hospice program is basically a medical program with physician direction and nurse coordination. Hospice leaders have discovered that patients cannot achieve a good quality of life unless their physical pain and symptoms such as nausea, vomiting, dizziness, constipation, and shortness of breath are under control. A major emphasis of hospice, therefore, is pain and symptom management.
Traditional medical care is often based on a “PRN” (from the Latin phrase pro re nata) approach, which means that medication is given “as the situation demands.” In practice, this means that often a person must first hurt and ask for relief before his or her pain can be stopped. This approach is responsible for much of the suffering experienced by terminally ill patients.
When Cicely Saunders first began working at St. Joseph’s Hospice in 1958, she developed an alternative method of pain control that has become the standard in hospice care. She writes:
Here [St. Joseph’s], as elsewhere at that time, one saw people “earning their morphine,” and it was wonderfully rewarding to introduce the simple and really obvious system of giving drugs to prevent pain happening—rather than to wait and give them once it had occurred. Here too there was the potential for developing ideas about the control of other symptoms, and also for looking at the other components of pain. But first of all I must salute the Sisters of St. Joseph’s and the compassionate matter-of-factness of their dedicated care. Together we began to develop the appropriate way of caring, showing that there could be a place for scientific medicine and nursing. We could illustrate an alternative approach to the contrast between active treatment for an illness (as if to cure it were still possible) or some form of legalized euthanasia. (Saunders 1992:20)
Hospice physicians believe that a patient should not hurt at all. Regular medication is, therefore, given in advance, before the pain begins. The aim is to erase the memory of the pain the patient has experienced and to deal with the fear of pain in the future. Pain medications are standardized to the needs of the patient. The aim is to control the pain and other symptoms without sedating the patient. Every symptom is treated as a separate illness, for only when each symptom is under control can a patient begin to find fullness and experience a good quality of life.
Home and Inpatient Care
The hospice concept includes both home care and inpatient care. Ideally, hospice care represents a continuum that includes both forms of care, beginning with home care and moving to inpatient care when it becomes necessary. However, the major emphasis of hospice treatment is on home care.
Inpatient care usually becomes necessary for one of three reasons. The first is that a stay of a few days in an inpatient facility may be helpful in bringing the patient’s pain and other symptoms under control. The second is that the family taking care of the patient at home may become exhausted and need a few days’ rest while the patient is cared for elsewhere. The third reason is that home care becomes inappropriate at a given stage of the illness due to the patient’s condition or home situation. When a patient is admitted to an inpatient facility, the hope is usually that he or she will be able to move back and forth from home care to inpatient care as needed at various stages of the illness.
The Hospice Team
Hospice care is provided by an interdisciplinary team, with the representatives of each discipline having something to contribute to the whole. All of the team members work together, each in his or her own area of expertise, and each interdisciplinary team includes several layers or levels of care. At the center of the team is the patient and his or her family. The hospice movement emphasizes the need for patients to make their own decisions with the supportive help of health care professionals and other trained persons. A vital part of this process is the patient’s own physician—the professional who will continue to be in charge of the care of the patient and write medical orders when necessary.
The next layer of the team includes the hospice’s professional caregiving staff. This consists first of physicians, who are required to direct medical care. Nurses constitute the next category. Registered nurses are responsible for coordinating the patient’s care, and licensed practical nurses and nurse’s aides are also included—especially in inpatient settings.
The hospice social worker is an important part of the team. The social worker spends considerable time working with the patient’s family, encouraging and helping family members to communicate with each other. Although family members may be aware that the patient is dying, they may never have discussed this among themselves or with the patient. The social worker also spends time dealing with social problems in the family, such as alcoholism and marriage problems, and working with the young children or grandchildren of patients. In modern society, all too often, children are shielded from participation in events centering on the death of a family member.
Pastoral care is also a basic part of the team. A relatively large hospice may employ a chaplain who directs pastoral care to patients and their families, counsels other members of the caregiving team on spiritual issues, and tries to involve members of the clergy in the community in the care of their own people. In a small hospice program, all of the spiritual care may be provided by local clergy who work closely with the hospice staff.
Financial counseling is another significant aspect of the hospice team. Because patients and their families have often exhausted their financial resources at the time of care, the financial counselor helps the family in seeking forms of third-party reimbursement, such as those provided by Medicare and private insurance companies, as well as in finding other programs for which the patient may be eligible.
The next layer of the hospice team involves a variety of health care professionals and other key leaders in the community whose help may be called upon during the illness. A psychiatrist or psychologist may be needed to provide expert counseling help. Nurses, home health aides, and homemakers employed by public health nursing agencies—such as visiting nurse associations—may be needed to provide special continuing health care or to share in the provision of patient care. Physical and/or occupational therapists may be needed to work with the patient to ensure his or her maximum daily functioning. Finally, the services of a lawyer and/or funeral director may be required to help the patient settle personal affairs and provide for the needs of survivors after the death.
Artists are increasingly being recognized as important members of the hospice team. The Connecticut Hospice pioneered the development of an arts program based on the philosophy that the arts can help patients to find meaningful fulfillment during their last days. In many hospice programs, artists working in varied areas, such as metalwork, photography, pottery, drama, dance, and music, are paired with patients who are interested in such self-expression.
Trained volunteers constitute an essential part of the hospice team. Medicare reimbursement for hospice care is predicated on the requirement that volunteer time represent 5% of all patient care, thus no hospice can exist for long without a strong volunteer component. NHPCO-affiliated programs recruit volunteers from many sources: churches (94% recruit in churches), civic groups (80%), social groups (70%), professional organizations (65%), business and industry (47%), colleges (34%), and secondary schools (12%) (National Hospice Organization 1997).
Hospice volunteers include many different kinds of people, including housewives, students, retired persons, and professionals such as social workers, psychologists, teachers, gerontologists, members of the clergy, and architects (Chng and Ramsey 1984-85:240). Many volunteers have lost loved ones and find that hospice work provides them with an opportunity to serve others. Some volunteers are retired health care professionals, such as physicians or nurses. Others are nonprofessionals who are deeply interested in the needs of dying patients and their families. Each volunteer brings with him or her skills and experiences that can greatly enhance the life of a terminal patient (Chng and Ramsey 1984-85:240).
Before volunteers begin a hospice program’s extensive training program, they are interviewed by the volunteer coordinator and may be asked to complete specially designed questionnaires that assess their feelings and sensitivity toward dying persons. Hospices also require volunteers to undergo an average of 22 hours of training before they are allowed to work directly with patients or patients’ families. In addition to this initial training, every hospice program requires volunteers to take part in regular inservice training to maintain and update their skills. The average hospice volunteer provides services for 3 years; 50% of volunteers stay for 6 or more years (National Hospice Organization 1997).
Some volunteers help with patient-care tasks, such as providing transportation, sitting with a patient to free family members to get out of the house for a while, carrying equipment, or providing bereavement counseling for family members after the death of the patient. However, according to Chng and Ramsey (1984-85), hospice volunteers primarily perform three roles: companion/friend, advocate, and educator. In 1992, the average hospice received 3,300 hours of service from volunteers. Nationwide, that translates into more than 5.25 million hospice volunteer hours—approximately two-thirds of which pertain directly to patient care (National Hospice Organization 1997).
In a national study of volunteers conducted in 1992, the National Hospice Organization (1993) found that 87% of volunteers were female and that 58% of these were 60 years of age or younger, compared with 53% of male volunteers. The vast majority of these volunteers had experienced the death of a significant other—most of them had had a parent who was cared for in a hospice program.
The hospice volunteer represents a double benefit in that the patient and family identify him or her as being knowledgeable, but without the kind of professional status that can create a social distance. In the hospice program where I volunteered, we referred to the volunteer’s companion/friend role as being a “competent presence” or “safe place.” As a stranger who provides a “listening ear,” without emotional involvements or professional entanglements, the volunteer can support the patient and his or her family members in a way that no other participant in the social network of dying can.
The volunteer also functions in an advocate role by acting on behalf of the dying patient and the family. Sometimes patients and their loved ones are afraid to challenge or ask questions of physicians and other medical personnel. The volunteer who becomes a trusted friend and confidant can often speak up for the patient and family members and make their needs known to those responsible for their care. I once served as the primary volunteer for a male patient who was undermedicated. When the patient complained to his nurse regarding his pain, the nurse told him to “brave it out.” Knowing the medical system, I was able to contact the appropriate individuals, who were, indeed, able to have the patient’s pain medications reevaluated. As Chng and Ramsey (1984-85) observe:
To be truly effective, the suggestions of the volunteer have to stem from knowledge and understanding of the intricate patient-family-institutional configurations. Under the careful guidance of professionals, the volunteer can serve a significant role as ancillary to professionals. (P. 240)
The final role served by the hospice volunteer is that of educator. Most individuals in our society have not had many personal experiences with death. The hospice volunteer can learn from each experience in working with dying patients and pass on insights that may be helpful to patients and their families. The volunteer can help the dying and their loved ones to understand that the dying process is usually complex, stressful, and disordered. In addition, most patients and their families have a strong need to have their feelings and experiences validated. The volunteer can assure patients and families who are having a difficult time understanding their feelings, emotions, and experiences during the dying process that they are “quite normal.”
Within the community at large, there are a number of influences at work that either assist with patient care or help to make it possible. In hospice care, the patient’s family members and friends are urged to participate in the patient’s care as much as possible. When family members cannot provide as much care as may be needed at certain times, hospice personnel try to meet the patient’s needs by exploring all possible options for doing so (National Hospice Organization 1988). The patient-family support system is the most significant factor in the dying process for many patients, but the system also often includes numerous close or distant relatives, friends, neighbors, members of local churches, and/or other civic groups.
Hospice programs are dependent on a high degree of community interest and support. To develop and maintain such interest and support, those who seek to establish a hospice program must undertake a well-planned public information campaign. They must sell the concept of hospice to the medical community and to other members of the larger community. Specific activities during this process require financial support (especially while the hospice program is being developed), and, in addition, those planning the hospice program must be willing to testify before regulatory agencies about the granting of hospice accreditation, Medicare certification, and/or approval to begin offering services to people in the area.
One of the distinguishing features of the hospice concept of care is that, whenever possible, hospice enables patients to make their own decisions about how and where they want to live their lives. Patient-centered care is nonjudgmental, unconditional, and empowering.
One of the patients of the hospice program where I volunteered provides an example of this philosophy of care. This patient had adult children in town but lived as a single person with his dog. He had lung cancer and desired to die at home, alone. He was also a smoker and heavy alcohol drinker. Our hospice program agreed to honor the patient’s desires whenever it was possible. Therefore, a hospice nurse visited his house every 4 hours, and members of the police department checked in on the patient every hour from 10:00 P.M. to 7:00 A.M. The patient’s pain was kept under control without sedation. A hospice volunteer (who also happened to be a licensed vocational nurse) visited the patient two or three times each day, and she, along with friends and family members, met the patient’s requests for liquor and cigarettes. All visits from members of the hospice team never lasted longer than 10 minutes. The patient died as he wanted—in his home, free from pain, and in control of his own care.
Although not every member of the hospice team, or the patient’s family, would have chosen to die as this patient did, everyone respected the patient’s right to make decisions regarding his care. The hospice philosophy states that patients and their families have the right to participate in decisions concerning their care, and that caregivers should not judge those decisions based on their own beliefs.
Because the family is part of the unit of care, the responsibility of the caregiving organization does not stop when the patient dies. Hospice programs offer continuing bereavement follow-up to members of patients’ families for as long as may be appropriate, and the vast majority of hospice patients and families accept these bereavement services.
Most hospice programs have bereavement teams, consisting primarily of interdisciplinary volunteers, that follow up on all family members after a patient dies or on those family members identified by the patient’s interdisciplinary teams as possibly being at major risk for the development of serious problems. Often hospice programs offer such bereavement services to the community at large, not just to those families served directly by hospice.
Hospices work with a wide variety of community organizations (e.g., churches, hospitals, nursing homes, and community mental health agencies) in providing bereavement support. Among NHPCO-affiliated programs, 80% provide support group services, 67% offer memorial services, 63% provide educational programs to the community, 60% provide individual/family counseling; 43% provide crisis counseling, 35% provide specific services to children, and 15% provide emergency room support for children (National Hospice Organization 1997).
Hospice bereavement care has several goals (Boulder County Hospice 1985):
- To assess the normal grief response
- To assess individual coping mechanisms and stress levels
- To assess support systems
- To set up additional support (groups, individual therapy, visits by team members) when needed
- To identify individuals at high risk and intervene appropriately
- To make referrals for financial problems and medical care
In bereavement services, as in other aspects of hospice care, the art of listening is emphasized. Family members need someone who is willing to listen while they discuss their feelings. Bereavement team support may last for a year or more, although the team tries to encourage family members to stand on their own feet as soon as possible.
Persons Served by Hospice
Hospice care knows no age restrictions, but most patients (70%) are over 65 years of age—of the remaining, 29% are adults under 65, and 1% are children (National Hospice Organization 1997). Most hospices provide care for patients suffering from any illness with a time-limited prognosis. According to Bass, Garland, and Otto (1985-86):
The “average” hospice patient is white, in his or her middle sixties, … is afflicted with a form of cancer and … is being taken care of by his or her spouse. The patients remain in the program for an average (mean) of forty-seven days. The profile of the “average” patient, while helpful in a number of ways, also conceals as much as it reveals. For example, while it is true that the average hospice patient is sixty-two years of age, there is a substantial segment of patients who are either much younger or older than this average. Further, evidence presented in our research suggests that younger-than-average patients have different experiences with hospice care (i.e., they remain in the program for a shorter period, receive fewer staff visits, and are more likely to die in a facility). (P. 67)
Patient eligibility criteria usually include a diagnosis of a terminal illness, a prognosis of 6 months or less, consent and cooperation of the patient’s own physician, and a willingness to deal with the dying process in an open awareness context. Some 98% of hospices require that all patients sign informed consent forms, but only 40% require DNR (do not resuscitate) orders (National Hospice Organization 1997).
Home care for a patient is often most viable when a relative (or friend) who can be a primary caregiver lives in the home and can assume responsibility for patient care when the patient is unable to provide care for him- or herself. For inpatient care, hospices usually require that the patient need help with pain or symptom control. For these reasons, only 45% of hospices admit patients without primary caregivers, even though another 31% admit patients without caregivers on a case-by-case basis (National Hospice Organization 1997).
Special Aspects of Home Care
Given that 77% of American hospice patients die at home (National Hospice Organization 1997), one of the questions frequently raised by family members is what to do if an emergency develops in the middle of the night or on a holiday. Although most physicians and other health care professionals do not make house calls, hospice personnel do. Home care for hospice patients is made viable by the fact that physicians and nurses are on call 24 hours a day, 7 days a week. This gives patients and their families confidence that they can manage at home.
Community physicians continue to be involved in the care of their patients, and usually remain primary caregivers, while the patients are receiving home care. Such community involvement relates the hospice program to the area in which it is located and tends to give hospice care greater visibility than is sometimes true of health care programs.
When a hospice patient is admitted for inpatient care, the patient’s own physician turns over the care of the patient to a hospice physician but must be willing to resume care if the patient is able to return home. Whereas traditional medical care in recent years has tended to concentrate care in specialized hospitals or in nursing homes, hospice care returns the focus to the family.
Special Aspects of Inpatient Care
Because the family is the unit of care, inpatient hospice facilities must include sufficient space for large numbers of family members to congregate. In addition, such care requires a homelike environment—the aim is to make the facility as much like a home away from home as possible. Patients are encouraged to bring with them a few favorite possessions, such as photographs, a favorite chair, or plants.
No arbitrary time restrictions are placed on those wishing to see patients in a hospice facility—they may visit at any time of day or night. Visitors of any age, including young children, are welcome. Furthermore, family pets, such as dogs and cats, may visit as well. The goal of an inpatient hospice facility is to provide a homelike environment where the patient and his or her family can appreciate the joys of social relationships.
The inpatient facility of the Connecticut Hospice in Branford illustrates the above principles. The family room is off-limits to staff—it is provided solely for the comfort of family members. Hospice care places considerable emphasis on the tastiness, attractiveness, and nutritional value of the food prepared for patients, and the Connecticut Hospice employs a gourmet chef who trained in Paris to supervise the facility’s food preparation. Kitchens complete with refrigerators, microwave ovens, stoves, and sinks are also available for use by patients’ families. Washing machines are maintained for their use. Large living rooms with fireplaces are available. Twelve four-bed rooms for patients help to develop social support systems among family groups. The facility also includes four single bedrooms. Spacious corridors next to patient rooms are decorated with plants and provide areas for family gatherings. Beds may be moved around as family members desire—on a nice day, many are seen outside, on patios. A commons room and chapel are used not only for religious services but for presentations by various kinds of artists. A beauty parlor, operated by volunteers, is available to help patients feel better about themselves. The facility also includes a preschool for 3- and 4-year-old children of staff, volunteers, and people in the community. When a patient dies (14% of all hospice deaths in America occur within inpatient facilities; National Hospice Organization 1997), he or she is taken to a viewing room for the family members.
Models of Inpatient Hospice Care
As of 1997, approximately 100 hospice inpatient facilities existed across the United States, with a total of 1,200 beds. Of these, approximately 72% were nonprofit facilities, 4% were government funded, and 15% were for-profit facilities; the funding status of the remaining 9% was unidentified. Among these inpatient facilities, 30% were independent community-based institutions; 51% were divisions of hospitals, nursing homes, or home health agencies; and 5% were divisions of hospice corporations; the remaining 14% fell into the “other” or “not identified” category (National Hospice Organization 1997).
The first model of hospice care, the freestanding hospice, is entirely independent—it works closely with other components of the health care system but employs its own staff and raises its own funds; 30% of hospices in the United States are of this type. The Connecticut Hospice is an example of an independent community-based facility. This 52-bed, freestanding inpatient facility and home-care program offers palliative care for those needing to have their pain and symptoms brought under control before returning home as well as intensive round-the-clock medical and nursing care for those who cannot be cared for at home.
The second model of inpatient hospice care is hospice based in a hospital, nursing home, or home health agency; 51% of all NHPCO-affiliated hospice programs are of this type. This model provides inpatient care within the physical plant of a hospital, nursing home, or home health agency. It also provides home care through its own homecare department, by arrangements made with a local public health nursing agency, or by its own staff employed for that purpose. The Northfield Hospice in Northfield, Minnesota, where I have served as a volunteer, is an example of a hospital-based program.
The third model of inpatient care is the hospice corporation, which provides inpatient care for profit through affiliated local and regional hospice agencies; 5% of all hospice programs in the United States are of this type. The largest and most well-known of these is the VITAS Healthcare Corporation, which has its headquarters in Miami, Florida; this corporation has provided palliative hospice care since 1978. VITAS has 19 affiliated programs in seven states (Florida, California, Texas, Illinois, Pennsylvania, Ohio, and Wisconsin). All VITAS hospice patients must have a prognosis of a life expectancy of 6 months or less and agree to a care plan that is palliative rather than curative. The VITAS palliative care plan involves aggressive treatment of physical and emotional pain and symptoms. All such treatment focuses on enhancing the patient’s comfort and quality of life. Like other hospice programs, VITAS employs a team approach, with teams made up of health care professionals and volunteers. Although VITAS is a for-profit corporation, it accepts Medicare and Medicaid as 100% coverage for its services, and patients have no additional out-of-pocket expenses. VITAS services are also paid for by private insurance plans. Annually, VITAS’s approximately 4,900 full- and part-time employees serve more than 25,000 patients and their families (the average daily census is nearly 6,000 patients).
Hospice planning groups exist in virtually every major city, and in many smaller cities, across the United States. They range from discussion groups made up of interested citizens to fully developed freestanding hospice programs. Currently, there are more than 2,800 hospice programs in the United States. In the 1990s, the annual growth of new hospices averaged approximately 8%, and growth in the numbers of patients served by all hospices averaged 17% (National Hospice Organization 1997).
Some have called the development of hospice care a “people’s movement.” If existing health care programs had been meeting the needs of the dying and supporting their families throughout their periods of illness and bereavement, no one would have needed hospices. The hospice movement originated in local communities as a result of the desire of health care professionals and civic leaders to provide better care than was previously available. Many leaders of the movement envision eventually working themselves out of their jobs as the larger health care system adopts the principles of hospice care. In the meantime, however, hospices pose a number of critical issues for health care in the United States, in areas such as patient quality of life, the patient-family as the unit of care, the cost of hospice services, the training of professionals, and public attitudes.
Quality of Life
Proponents of the hospice movement proclaim that every human being has an inherent right to live as fully and completely as possible up to the moment of death. Some traditional health care professionals, emphasizing the curing of the patient at any cost, have ignored that right. Many physicians have been trained, for example, to emphasize restoring the patient to health. Accordingly, many patients are subjected to series of operations designed to prolong their lives even though curing them is sometimes impossible, as in the case of rapidly progressing cancer. Most hospice patients have had some surgery, chemotherapy, or radiation treatments. Some continue these even while they are hospice patients because the treatments provide some pain relief (radiation, for example, may reduce the size of a tumor and, therefore, reduce the patient’s discomfort). There comes a point, however, if good quality of life is a goal, that the patient should refuse further surgery, seek ease of pain without curing, and attempt to live qualitatively rather than quantitatively. In hospice, cure goals for patients are changed to comfort goals, and all patients play a significant role in the health care decisions affecting them.
Because of this emphasis on quality of life, hospices pay attention to many different facets of pain reduction, including but not limited to physical pain. Hospice medical professionals have spent considerable time in developing a variety of methods of pain control that subdue not only what the patient describes as pain but also symptoms related to various illnesses. Much of this emphasis on pain control has developed despite the common practice in mainstream health care of sedating patients in pain. A patient who is “knocked out” or has become a “zombie” cannot experience a good quality of life. Hospice physicians try to find the point at which the patient’s pain is managed, but the patient is not sedated. To provide this kind of pain management, hospices have had to conduct considerable retraining of health care workers.
Hospice staff and volunteers also deal with the social, psychological, financial, and spiritual pain of patients and their families. Outside of hospice care, a terminally ill patient may experience social abandonment or personal isolation that comes when friends and acquaintances stop visiting because they are unable to cope with issues of death, don’t know about what to say or do, or simply are not aware of what the patient is experiencing. As Chng and Ramsey (1984-85) note, “In too many cases family members may inadvertently ‘reject’ the patient when confronted with the reality of death, while the professional staff may distance itself to avoid becoming too emotionally involved” (p. 237). Hospice workers can help a dying patient’s family members and friends understand that the patient has a great need for social support and companionship at this time.
Patients and their families also often experience financial problems; many face large hospital and medical bills at a time when family income may also be diminished. In addition, many experience spiritual pain as they seek answers to existential questions and ponder the ultimate meaning and purpose of life in the face of suffering. “Why did God allow this to happen to me?” and “Why do bad things happen to good people?” are questions frequently asked by terminally ill patients and their families.
Hospice care makes the meeting of all the patient and family’s needs—social, psychological, financial, and spiritual—a major priority. By doing this, hospice provides an alternative to the kind of health care found in most medical treatment centers. However, no health care professional can begin to meet the social, psychological, financial, or spiritual needs of terminally ill patients (and their families) until he or she is comfortable with discussing death-related issues. If a physician, for example, is afraid of death or chooses to ignore it, he or she will find it difficult to enable patients to deal with the issues involved in dying.
The hospice movement also emphasizes the importance of the patient’s environment to his or her quality of life (in this context, the term environment refers to the setting where provisions are made for the patient’s needs). In hospice, patients receive care in their own homes or in inpatient facilities designed to be as homelike as possible. In contrast, the floor plans, decor, and furnishings found in most health care facilities have been designed for the convenience of staff rather than for the needs of patients.
A critical question is, What constitutes a good quality of life? What does an individual most want to accomplish or experience before he or she dies? When one of the patients I knew at Northfield Hospice was asked that question, he said that he had always wanted to take a helicopter ride. With the help of the local NBC television station, the hospice made his dream a reality. Like that patient, almost everyone has unfinished business in life. Some may wish to renew relationships with friends or family members with whom they’ve lost touch. Others may desire to put their own affairs in order, to write their memoirs, to plant a garden, to watch the sun set, or to plan their own funeral services.
The Patient-Family as Unit of Care
Traditional health care in the United States has long concentrated on the patient and ignored the patient’s family. Perhaps many health care workers would say, if given an opportunity to state their opinions confidentially, that they would prefer that their patients’ family members stay away. Traditional ideas about the appropriate ratios of physicians, nurses, social workers, or chaplains to those needing care have been based on the assumption that only the patients need attention. Although hospice staff, to be sure, are not given the responsibility of meeting the physical needs of all patients’ family members, they do take tremendous care to address the social, psychological, and spiritual needs of patients’ families.
Compared with the traditional health care system, hospices provide much higher ratios of professional staff members to patients served. For example, in the state of Connecticut, the public health code’s regulations for hospice licensure stipulate that at all hours of the day and night, a hospice must have on duty at least one registered nurse for every six patients and at least one nursing staff member (licensed practical nurse or a nurse’s aide and a registered nurse) for every three patients.
Family care, however, involves much more than numbers of staff. It requires that health care workers know how to cope with the fears, worries, tears, and turmoil of a terminally ill patient’s family members; this includes knowing when to speak, when not to speak, and what to say. Hospice workers take the time to listen, to determine how they may be most helpful.
Hospice care is costly care due to the numbers of staff involved. It challenges society as a whole to give priority to such care because of the right of the dying to a good quality of life. In a traditional hospital setting, a nurse on a night shift must often struggle to meet the needs of perhaps an entire floor of patients; he or she is not able to take the time to sit with a dying patient for whom the nighttime is especially difficult. Nor does this nurse have the time to be of assistance to any dying patients’ husbands, wives, or children as they struggle with grief.
In hospice care, each staff person is supported by the patient’s interdisciplinary team as the various disciplines come into play in meeting family needs. For example, when a patient asks a night-shift nurse a question relating to spiritual care, the nurse might wish to give an answer at the time, but he or she can also rely on the team’s chaplain as a resource to determine the best way to meet the patient’s spiritual needs.
In hospice care, the patient-family unit is involved in all decision making concerning the patient’s care. Caregivers who have worked mainly in traditional health care may find it difficult to adjust to such a system, as they may be accustomed to making decisions and having everyone go along with what they have decided.
Cost of Hospice Care
Even though hospice care is personalized to meet the needs of each patient (with each patient’s care involving an entire team of professional and volunteer caregivers), it is also very cost-effective, because more than 90% of hospice care hours are provided in patients’ homes, substituting for more expensive multiple hospitalizations. In a 1995 study commissioned by the National Hospice Organization (1997), the health care policy research organization Lewin-VHI found that for every dollar Medicare spent on hospice, $1.52 in expenditures was saved. Furthermore, in the last year of life, a hospice patient incurred an average of $1,786 less in costs than did an individual not in hospice care. When the time period examined was just the last month of life, the savings of the hospice patient totaled $3,192, as hospice homecare days often substituted for expensive hospitalizations.
Ideally, no prospective hospice patient may be turned away because of lack of money. Only 15% of all hospice programs are operated by for-profit organizations, and each year even these programs provide some care for patients who cannot afford to pay; in addition, most poor, underinsured, and uninsured families do receive some financial assistance. As of 1997, the sources of payment for hospice services broke down as follows: Medicare, 66.8%; private insurance, 14.6%; Medicaid, 9.1%; indigent (nonreimbursed) care, 6.3%; and “other,” 3.2% (National Hospice Organization 1997).
Medicare-eligible patients are insured for hospice care from Medicare-certified providers by the Medicare Hospice Benefit, which was enacted in 1982. To become Medicare certified, a hospice program must undergo a vigorous evaluation of the services it provides and must agree to provide the following services directly to patients: nursing care, medical social services, physician services, counseling, and volunteer services. As of 1997, 77% of all hospices in the United States were Medicare certified, and another 3% had pending applications (National Hospice Organization 1997).
The General Electric Company was the first major employer in the United States to provide a hospice benefit for its employees. Currently, coverage for hospice is included in the health insurance packages of more than 80% of employees in medium and large businesses. Furthermore, the majority of private insurance companies offer comprehensive hospice care benefit plans, and major medical insurance policies, provided through insurance companies and offered to employees as part of benefits packages, also underwrite hospice coverage in most instances. However, many hospice programs still rely on income from grants and donations to meet the needs of their patients and families as they provide services not covered by Medicare, Medicaid, and insurance reimbursements (National Hospice Organization 1997).
Proponents of the hospice movement hope to make it possible for any person of any age who suffers from a terminal illness to be eligible for coverage of the costs related to hospice care. They are also firm in their conviction that such care saves considerable money in the long run. Many patients who are currently hospitalized would not need to be if hospice services were available for them and their families. A basic question for Americans is whether, as a society, we believe enough in ensuring a good quality of life for the dying that we are willing to do whatever it takes to make that possible.
As the American way of life has become increasingly impersonal, dying has shifted from the home to the hospital or nursing home—away from kin and friends to a bureaucratized setting. The birth of the hospice movement in the United States might be considered a countermovement to this trend. As we seek out primary group relations in our largely individual-oriented society, more and more Americans are seeking to die in the setting of a familiar home rather than in the sterile environment of a hospital. Perhaps we are evidencing a return to a concern for each other—a new dignity in dying may be on the horizon.
Hospice represents a return to caring and compassion. It is a revival of neighbors helping neighbors—a concept so often lost in our urbanized society. Hospice consists of professionals literally going the extra mile, going to patients’ homes when needed—medical personnel actually making house calls. Hospice, for example, encourages children under the age of 14 to be present with the terminally ill person rather than making them wait in the hospital lobby. Hospice is a grassroots movement springing up in small communities, as well as larger urban settings, to provide better health care. To paraphrase the words of Robert Kavanaugh (1972:19), the hospice concept of care helps us to unearth, face, understand, and accept our true feelings about death and provides us with opportunities for joyful living and dying as we choose. In short, hospice is a movement that can transform our awkwardness in death-related situations into a celebration of life.
With federal money now covering most hospice expenses, and with rigid government requirements in place for approval of hospice programs, the newest challenge for the hospice movement is to prevent hospice programs from being strangled by the bureaucracies from which they receive financial assistance. Hospice programs must also continue to make the patient-family unit the central focus of care, treating these clients in a nonjudgmental and unconditional manner and thus empowering them as autonomous human beings. Finally, given that 55% of all hospice programs do not admit patients who do not have primary caregivers, it is imperative that in the future hospice programs do more to make it possible to extend services to patients who are without such resources. These are the dying patients to whom Jesus was referring when he said, “Whenever you did these things for the least of these my brothers, you were doing them for me!” (Matthew 25:40).