Bert Hayslip Jr. Encyclopedia of Human Development. Editor: Neil J Salkind. Volume 2, Sage Reference, 2006.
Hospice is a philosophy of care for people who have terminal illnesses and their families through the use of an interdisciplinary team that develops a coordinated, individualized plan of care. The focus of such care is on pain management and symptom control, within the context of maintaining quality of life for the dying patient and his or her family. In this respect, death in the hospital (or nursing home for that matter) is “hidden,” in contrast to the death of a person in hospice, which is real, human, and meaningful. Rather than view death as the end of life, death in hospice is better thought of as “spiritual transformation” from this life to the next. This redefined notion of death in hospice is predicated on the basis of the fact that death need not be accompanied by suffering; that is, that such care is palliative, and that the patient’s and family’s wishes will be identified and honored. In effect, death and dying in hospice are a natural event, in contrast to dying in an institution, the many problems of which have begun to be addressed by societal and professional efforts to humanize dying by defining the rights of dying persons and by making recommendations about how end-of-life care might be improved. Such efforts were stimulated by the failure of project SUPPORT, which attempted to enhance the quality of life for dying patients by improving the communication skills of health care professionals (i.e., physicians). Although hospital care has been characterized as event oriented (focused on the prevention of the event of death), hospice care is process oriented—dying is its focus.
In North America, five models of hospice care exist: (a) home-based care, often provided by community-based professionals and volunteers (90% of Hospice care is provided in the patient’s home); (b) home-based care provided by home health care agencies, or Visiting Nurse Associations (VNAs); (c) free-standing, full service, autonomous hospice facilities; (d) separate hospital-based palliative (pain-reducing) care units; and (e) hospital-based subacute units, emphasizing continuum of care. In addition, some hospices have begun to explore the concept of adult hospice day care. Pediatric hospice programs are also becoming more common. About half of all hospices are hospital based, and the remainder are operated by home health care agencies. Most (nearly 75%) are nonprofit in nature, whereas 15% are for-profit. One third are free-standing facilities. It is also becoming more common to see nursing homes and assisted-living communities provide hospice care. Although most hospice patients have cancer, people being cared for by hospice also die of acquired immune deficiency syndrome (AIDS), end-stage renal disease, dementia, and cardiovascular illness.
Regardless of one’s model of hospice care, all hospices share certain characteristics that set them apart from other forms of health care: (1) the dying person and family are the unit of care; (2) the interdisciplinary team serves both the dying person and the family; (3) care focuses on both the physical and psychosocial aspects of dying; (4) services are available on a 24-hour per day, 7 days per week basis; (5) inpatient and home care services are available; and (6) bereavement counseling and support (both before and after the individual’s death) are available to both the dying person and the family. Many, if not all, of these issues are reflected in the dying person’s perception of what is important at the end of life.
These characteristics reflect some very basic ideas about life and death: (1) that dying is a natural experience, with life and death being equally important and meaningful aspects of our existence; (2) that dying people and their families are important in themselves, with the dying person’s welfare coming first; (3) that dying people should be able to continue to make decisions for themselves until they are unable or unwilling to do so; and (4) that dependence on others and being cared for by them are not demeaning.
The essential one-on-oneness of the hospice care philosophy has historically stood in contrast to the cure orientation of conventional hospital oncological care or the maintenance mentality of the nursing home. In this light, hospice patients are less likely to receive intensive medical interventions such as chemotherapy or surgery as well as diagnostic tests (e.g., blood tests, X-rays) in the weeks before death than are those in conventional hospital oncology units. Moreover, although analgesics are also more likely to be regularly prescribed for pain on a fixed schedule in conventional health care, pain medication is prescribed on an as-needed basis in hospice.
History and Origins of Hospice Care
The primary stimulus for hospice in America came from the St. Christopher’s hospice in London, founded by Dr. Cicely Saunders in 1967, although hospices clearly had existed for many years in Europe. Since then, initiated by the opening of a home-based care hospice, Hospice, Inc. in New Haven, Connecticut, in 1974, nearly 3,300 hospices have been founded in North America. Changes in attitudes toward death, legal decisions and legislation affirming the right of the individual to refuse life-sustaining treatment, and the development of the Medicare Hospice Benefit have also encouraged the expansion of hospice in the United States. Other events important to the development of hospice are the founding of the first hospital-based hospice in North America—the palliative (pain-reducing) care unit at the Royal Victoria Hospital in Montreal, and the formation of the National Hospice Organization (NHO) in 1977 (now known as the National Hospice and Palliative Care Organization [NHPCO]). In 1992, the principal fund-raising arm of the NHPCO, the National Hospice Foundation (NHF), was founded. NHPCO has been important in educating the public about hospice and in formulating standards for quality hospice care critical to their accreditation, which makes hospice a viable alternative to institutional care for terminally ill persons and their families.
Hospice care became a recognized benefit under Medicare in 1983. Studies have shown that although dying persons represented only a small percentage of all Medicare beneficiaries at any given time, such persons were consuming a disproportionate share of all Medicare expenditures. Three years later, legislation was passed permitting state Medicaid programs the option of covering hospice. The hospice benefit under Medicare requires that core professional services—physician, nursing, counseling, and medical social work services—be directly provided by the hospice. However, it does not require that hospices directly operate home care or inpatient care facilities. Rather, Medicare simply requires that the hospice staff maintain responsibility for all services regardless of their location and that they guarantee access to such services on a 24-hour basis. The same concerns regarding the costs of acute care for dying persons that convinced Congress to establish a Medicare benefit have moved private health insurance companies toward hospice coverage. Even when covered by Medicare, hospice costs are sometimes unnecessarily paid by patients and families because questions about private health insurance coverage were not asked.
Health Care Delivery in Hospice
Case management ensures that quality care is available to, and continuous for, each patient and family. This is especially important because patients and families often know little about caregiving and may have difficulty in dealing with other agencies. The coordination of care within the interdisciplinary team, as well as with other professionals outside of hospice, is an essential component of the case management mold in hospice. Case management matches each unique patient-family unit with whatever services they may need, as well as monitoring changes in their needs for such services. Case management also helps patients and families arrange for insurance coverage, plan for emergencies, and if necessary, arrange for services from other agencies. In hospice, case management is often carried out by the primary care nurse or the social worker.
The care plan for the patient and family is implemented with the patient’s and family’s needs in mind. It is likened to a process—something that patient and family actively participate in. Information about the patient’s needs is often gathered by interactions with patient and family, and such information is assessed by the interdisciplinary team in formulating a care plan. The team also arranges to coordinate and deliver hospice services, monitors the effectiveness of these services, and if necessary, reevaluates the care plan if the patient’s physical or emotional status changes. Numerous decisions regarding everyday changes in the dying person’s energy level, emotional state, functional (decision-making, self-care) skills, and needs for pain medication must be made by the team, yet balanced against the quality of the dying person’s life as well as against the demands of work, school, raising children, house cleaning, cooking, and bill paying. Additionally, changes in the family’s needs for support and information are likely. For example, the patient and family may initially ask about insurance coverage, the nature of the illness, its progression and treatment, or what the family can do to help to care for a dying loved one. They may also want to know about the side effects of pain-relieving medications. As the patient’s condition worsens, needs for reassurance and support may surface, and concerns about planning a funeral, writing a will, or living without a loved one may be shared. Near death, the family may be less verbal about their needs, and emotional support from a staff member or volunteer may be all that they require. Rather than “doing” something, hospice personnel may meet this need by simply “being there.”
Legal and Ethical Aspects of Hospice Care
NHCPO does not support either suicide or euthanasia in hospice, and indeed, they are infrequent among hospice patients. However, there is the occasional individual for whom “rational” suicide or euthanasia may be perceived as an alternative to living in pain or dying an undignified death. Although such statements may mean that the patient’s needs are not being met by the hospice, they may also reflect family difficulties, resulting in the dying person’s feeling rejected and unloved. Suicidal thoughts may be shared openly, or they may remain unexpressed. Such patients may have a hard time sleeping or eating, refuse medications or visitors, or suddenly change a will. A wish to commit suicide may reflect an individual’s particular moral values about the quality versus quantity of life. If such concerns do surface, one should explore whether they are shared by family members, and if they are not, or if family members are unaware of them, the caregiver must make a choice regarding whether to discuss them with the family. In most cases, it is preferable that the patient’s wishes to discuss suicide or euthanasia with his or her family be respected. Many hospices have adopted a policy against active euthanasia and against the acceptability of suicide. What death and dying mean to each person should be explored, so that the dying patients can understand and clarify their feelings as to why suicide or euthanasia might be preferable to living, and so the caregiver can more fully understand the dying person. Not discussing such topics or making them seem unimportant suggests communication difficulties that must be remedied quickly.
Hospice uses the interdisciplinary team in tending to the well-being of dying patients and their families, and has been demonstrated to be effective in this respect. The term interdisciplinary reflects the variety of skills that professionals, paraprofessionals, and volunteers contribute in meeting the complex and changing physical, psychosocial, and spiritual needs of the patient and family. In this regard, the team functions to ensure that the dying patient and family function as well as possible given the burden of having a terminal illness and the realities of daily life, including maintaining a household, holding a job, and raising children. Not only are the patient’s medical needs given priority, but also the patient’s and family’s needs for intimacy, privacy, and support from relatives, friends, or neighbors must be met. As the essential component of hospice, the team functions to evaluate and meet the special requirements of each patient-family unit. Within the plan of care that has been developed for the patient and family, the patient care coordinator, who is often the social worker or nurse, brings together each member of the team to assure continuity of care. Not only is this vitally important during the period of time the patient is actually receiving hospice services, but it is also essential to providing effective bereavement support. Such support is especially critical if the staff sense that the family wishes to disengage from them after the death.
Ideally, the team is composed of people with a mix of professional expertise and background: nurses, social workers, clergy, physicians, counselors or psychologists, dietitians, physical therapists, pharmacists, and volunteers. For the most part, direct patient hospice care is managed and carried out by nurses in either inpatient or outpatient settings, under the direction of the hospice medical director in concert with the patient’s physician. Important roles are also played by clergy, social workers, and especially volunteers. In most cases, teams meet on a weekly or semi-weekly basis to review each case and to discuss problems encountered in carrying out the plan of care, as well as to discuss problems within the patient-family unit itself. As noted earlier, the care plan may need to be modified for any number of reasons.
Physicians have direct input into the delivery of care and are primarily responsible for the direction of the medical care that includes both ongoing, daily, and emergency care. Physicians formulate a medical regimen of pain and symptom control using an array of narcotic and nonnarcotic analgesics (pain-relieving drugs). In hospice, however, the physician’s role is best defined in the context of the entire team and most likely varies a great deal from hospice to hospice. In rare cases, the role of the physician may be minimal, and the physician may not actively function as the medical director or as a participating member of the team. Relative to the more traditional physician, hospice physicians are more likely to play a less authoritarian role in the delivery of care. They are more patient and family oriented and emphasize more strongly clear, effective, and empathic communication with both patient and family as well as with other hospice staff. Perhaps the physician’s most important role, other than in prescribing pain medication, is to serve as a liaison between the hospice and physicians in the community as well as with the patient’s personal physician, from whom referrals often originate, and whose attitudes about hospice are critical in this respect.
Nurses in hospice often make an initial assessment visit with the family, and because they see the dying person most often, frequently oversee the coordination of direct patient care among the team. In an initial visit, the nurse learns about the history of the illness from both the dying person’s and the family’s point of view, and assesses their needs to help the hospice care team to design a care plan. The nurse is equally attentive to the emotional needs and physical well-being of the patient and family. Relieving pain promptly, wherein pain often but not always accompanies a terminal illness, and keeping the patient as pain free as possible, are vitally important. Listening and “normalizing” everyday life are also very important aspects of the role that the hospice nurse plays.
Although nurses often provide most of the direct, hands-on skilled care, the social worker may also serve as a case manager. The social worker often conducts the initial psychosocial assessment of the patient-family unit, dealing with such issues as insurance coverage, pensions, wills, and funeral planning. Although medical social workers may function similarly to the nurse regarding the family’s well-being, they usually assume primary responsibility for tending to the financial and legal aspects of terminal care with the family, and in helping the family obtain outside assistance with home care, meal planning, or meeting transportation needs. The social worker also often oversees the follow-up bereavement care of the family.
The volunteer assists the patient and family in a variety of ways on a continuing as-needed basis. Volunteers can, by simply listening and observing, monitor the family’s physical and emotional status so that a crisis of caregiving can be avoided. Volunteers can also help in the provision of care itself: turning patients in bed, personal grooming and hygiene, helping with household chores, picking up children from school, and most important, simply being present. Volunteers have been and are viewed as an absolutely essential component of the hospice team and should function as such. In most hospices, a volunteer coordinator helps match and assign volunteers to patients and families and may assist in coordinating and delivering volunteer training. By accompanying the nurse or social worker on an initial visit, the volunteer coordinator can learn about each family’s background, interests, and unique needs that influence hospice care, as well as form an impression of each family member as a person.
The role of the clergy is usually more subtle and often only on a demand basis in hospice, although it is difficult to generalize about the extent of their involvement. Clergy are involved in the team to shed light on the spiritual needs of the patient, and if the patient has no religious affiliation, to minister to the patient and family. Rather than promoting a particular religious philosophy, the chaplain sees to the patient’s spiritual well-being by being a link to the religious community. The chaplain often assists in bereavement follow-up, as well as in the training of volunteers. The chaplain can also function as counselor, listener, problem solver, mediator, or friend, as can the hospice administrator, depending on his or her training, over and above the overseeing of personnel and reimbursement issues within the hospice.
Few hospices actually have a psychologist as a paid staff member or a volunteer, although this is changing as the patient-family unit’s emotional well-being is being recognized as an even more important influence on the health of the dying person and his or her family. Moreover, hospice staff members offer more counseling than any other activity other than providing nursing care. The psychologist or counselor, for the most part, plays a supportive role in consulting with the team regarding the psychosocial functioning of the patient or family. Counselors’ or psychologists’ expertise is sought regarding family conflicts associated with the stress of terminal care, or long-standing difficulties that are brought to the surface by the dying of a family member. Such conflicts often interfere with either the delivery of care or the patient’s or caregiver’s well-being.
Burnout and Attrition in Hospice
Stress among hospice workers is unique in that uncertainty about whether one’s efforts are effective, the duration of time spent with patients, and the importance attached to one’s work are all high. Although individuals vary in their ability to appraise and respond to stress, the unique commitment hospice staff have to their work and the demanding nature of working with dying people make them especially prone to stress and burnout. Most hospices now recognize that some form of regular, timely staff support is crucial to lessening stress and minimizing staff turnover, although this has not always been so. Staff with little family support, who work in home care–based hospice situations, appear to be at greater risk for job stress and burnout. Younger and less mature caregivers also seem to be more prone to dysfunctional stress reactions owing to a lack of emotional preparation, as do people who are more death anxious or who are trying to cope with the loss of a loved one by immersing themselves in hospice. Given that burnout predicts the long-term attrition of hospice staff, perhaps most important to minimizing burnout is the selection of hospice staff. Excluding people who have experienced recent personal losses as well as those with a great deal of anxiety or concern about their own deaths or about being around dying people is important. Over and above the selection of team members, the team itself must have time to be alone with one another to discuss technical and creative issues, as well as to express their feelings and provide emotional support to one another regarding their work. Taking care of oneself is central to lessening hospice team stress and burnout. Moreover, opportunities for continued training and cross-disciplinary sharing outside of hospice are essential to minimizing attrition.
Patient-Family Dynamics in Hospice
Although the needs of the dying person are an important focus of hospice, that person is nevertheless embedded in the matrix of relationships and interactions with other family members. Death may disrupt patterns of communication, role responsibilities, decision making, and assertions of power or dominance within the family. The very identity of the family and of the individuals in that family may be threatened by death. Each family’s reaction to the diagnosis of a terminal illness, its management of a loved one’s dying, and its postdeath functioning are determined by previous family styles and patterns of coping. The impact of death also varies by whether a parent or a child dies, interacting with what stage of the family life cycle the family is in.
When hospice care is provided by the family at home, caring for a dying loved one can present an additional burden the family may see as impossible to cope with. The family must believe that home care is both possible and desirable, and they must have access to professional assistance as well as specialized equipment often essential to quality terminal care. The family must also have the nursing skills to make physical care possible. Moreover, knowing when death is imminent, what to do at the moment of death and what to do immediately after death are important skills and knowledge that are important in choosing home care. Families report that changes in the dying person’s mental status (inability to communicate, confusion, seizures), and such changes in his or her inability to care for oneself are the most troublesome, as are administering medications and dealing with the loss of bladder or bowel control. Putting personal and career goals on hold, having little “alone time,” being isolated from others, feeling guilty, and neglecting one’s own health are also sources of stress among caregiving families. Recent findings suggest that families who have a loved one dying of AIDS face even greater difficulties. Such families express more difficulty in sharing their feelings, report more stress, are less trusting, and have more illness anxiety than families with other terminal illnesses. Hospice staff can help in the performance of many of these needed tasks through education of the family and through the provision of psychological and spiritual support to them. In most cases, details that seem unmanageable, horrid, or repulsive become less so with a bit of hands-on teaching and knowledge. As hospice care extends beyond the death of the patient, it is also important to observe how both the patient and family deal with their grief because it influences the postdeath adjustment of survivors. Opening up lines of communication may help families face the reality of a loved one’s death, particularly if they have had little recent contact with the dying person or when there are long-standing family difficulties.
In evaluating the patient-family unit, the focus is likely to be on the woman’s well-being, health, and extent of social support from others because female spouses tend to experience more family caregiver burden than do both men and children. Indeed, psychosocial and emotional support to primary caregivers by family is crucial. It is also helpful to explore the extent to which family caregivers are depressed, whether they have used social services in the past, and their explanations for the dying person’s behavior because these factors have also been found to predict caregiver burden and may constitute adjustment difficulties in themselves. Such insight may require several visits to achieve and may necessitate an assessment by more than one hospice staff member. An evaluation of the family’s support system is also crucial to understanding how they will cope with the illness—do they have extended family, friends, neighbors, or coworkers available? What area support agencies have they contacted (e.g., nursing home, home health care services)? Do they have savings or private insurance? How much of the cost of care is Medicare likely to cover? Has a will been written? Have funeral arrangements been made? Do they attend or are they members of a church? Would a visit from the hospice clergy be helpful? Through all of this, the family should sense this active support and interest in their welfare and functioning by hospice staff. In cases in which significant family dysfunctional patterns are interfering with care, more formal family therapeutic interventions may be necessary.
Grief and Bereavement in Hospice Care
Bereavement follow-up is a primary characteristic of hospice, and it sets hospice apart from other types of health care for dying persons and their families. In many respects, the job of the formal caregiver has just begun when the patient dies. The family must be sustained and cared for well beyond the death of a loved one, and bereavement care facilitates the expression of grief before death and thereby lessens its severity after death. Because the same personnel are encouraged to stay in contact with the family, this ensures continuity of care. Different staff, however, may be involved to encourage the family to develop new relationships.
The major objectives of hospice bereavement care are (1) accepting the reality of the loss of a loved one, (2) experiencing the pain of grief, (3) adjusting to an environment without a deceased family member, and (4) reinvesting energy into other relationships. At present, research growing out of the National Hospice Study suggests that although hospice bereavement programs can be very beneficial, objective evidence supporting their efficacy is sparse; however, the odds of a surviving spouse dying in the 18 months of his or her spouse’s death are greater if hospice is not used. In addition, better postdeath adjustment has been found among spousal survivors who used hospice.
Bereavement care is often carried out by social workers, nurses, or volunteers. Bereavement care often focuses on those whose grief is pathological, or on the identification of persons who might have later difficulties in coping. A variety of very diverse bereavement services are offered by hospices. These include attending the funeral, providing individual or group counseling, sending postcards, making telephone calls, and holding memorial services and other social events. The intensity of involvement by individual hospice staff or by the interdisciplinary team varies, as does the formality of objective bereavement follow-up. Counseling, companionship, and assessment are the prime reasons reported by staff for bereavement visits, and persons in home-based hospices typically receive more bereavement support and counseling than do those in hospital-based hospices. Related to such bereavement support is the fact that people in home-based hospices are more emotionally distressed and experience more caregiver burden before death than those in hospital-based hospices. Because hospice care places a special burden on those family members caring for a loved one at home, individuals who have suffered more because of the demands of caregiving may fare more poorly after death.
A Final Word
Perhaps the greatest lesson that hospice teaches us is that people can grow spiritually and emotionally by being with a loved one at a very sad and emotionally difficult time of life. This lesson is vividly expressed in the words of the wife of a hospice patient who died of cancer:
Knowing that your spouse has a terminal illness is not all bad. It gives you time. Time for all the things you might otherwise not do. Time to talk, mend bridges, get to know each other better, and even time to fight through the things that you need to fight through. This great thing we call time allows us to let go of that loved one without regrets. We can say goodbye and mean goodbye with all our hearts. The time spent preparing for my husband’s death is probably the most valuable time of our 17-year marriage. Perhaps in your mind that casts a shadow over our marriage. I think not. I believe that we were very typical of the great percentage of couples. We got caught up in the work of life and often lost contact with each other. We were fortunate to be extremely close and in tune to one another, but we still got caught up in our own personal strives for survival. Had Ray suddenly dropped dead one day we would not have had 6 months to bond and prepare. I am fortunate to be able to say that I have no regrets after Ray’s death.