The Hospice Option
Most patients served by hospice have either a form of cancer that is not responding to treatment or a progressive neurological condition such as amyotropic lateral sclerosis (ALS, also known as Lou Gehrig's disease). Hospice has been proving itself more flexible, however, by adapting its programs to serve children, people with acquired immunodeficiency syndrome (AIDS), and, so far to a limited extent, people with end-stage dementia.
Hospice care is intended as an alternative, not a replacement for management of terminal illness within the mainstream medical system. Several factors are important in making the choice. Awareness of impending death. Eligibility for the Medicare Hospice Benefit requires medical certification that the patient has a life expectancy of six months or less. Just as significant, however, is the patient's own judgment and attitude. One might feel like fighting all the way, seeking additional treatment even though the odds seem against recovery or remission. Families also might refuse to accept the terminal prognosis and urge physicians to do everything, no matter how slim the chances. Occasionally a person judged to be terminally ill does recover. Unreadiness to acknowledge that the patient is nearing death can be based upon actual glints of hope that remain in the medical situation or anxious denial, to mention only the extremes. The decision to select the hospice alternative generally requires that the individual understands that his or her life is nearing its end. The individual might have this understanding and nevertheless decide to remain within the traditional medical care system, but hospice care is intended primarily for those who, in fact, are dying and who are cognizant of this fact.
Accurate knowledge of hospice care. There is still the lingering misconceptions that entering a palliative care program is an act of despair that consigns the person to a death-obsessed isolation. However, Balfour Mount (1997) speaks for many other palliative care physicians when he observes that "[a]ctually, effective symptom control and the presence of those who are there because they choose to care for the dying, frequently produces a liberation that enables the patients to focus on living and the quality of each day rather than on dying" (pp. 79–80).
Much that has been learned about effective symptom control has come from hospice care (Muir et al. 1999). The mistaken assumption that patients would be exposed to less competent medical and nursing care in hospice programs has kept some people from exploring this alternative. Furthermore, the development of palliative care was motivated in large part by the concern that the psychological, social, and spiritual needs of dying people were being neglected by mainstream medical practices. Hospice programs encourage continued interactions with family and friends and the support of the patient's own preferences and values.
There has also been some misunderstanding about the role of religion in hospice programs. As already noted, hospice programs from the early middle ages onward were usually offered under the auspices of a religious organization. St. Christopher's, the first center of the modern hospice movement, was also under Christian auspices and staffed primarily by nuns. Many—but not all— hospice programs today are associated with a particular religious faith. Does this mean that people who are not religious or belong to the "wrong" faith are not welcome in hospice programs or would be pressured to convert? Some terminally ill people have shied away from hospice programs because of this concern. In actuality, hospice programs have long been open to people regardless of their religious beliefs. David Tasma, the man who inspired Dame Cicely Saunder's work, was Jewish, and St. Christopher's set the example of providing compassionate care without attempting to impose their own faith. Studies have shown that most hospice staff and volunteers have a strong religious faith to sustain their efforts, but do not infringe on the patient's own beliefs (Schneider and Kastenbaum 1993).
Family communication and participation. Palliative care is intended as a cooperative endeavor characterized by open communication and mutual trust. In the ideal situation a skilled hospice team works with a close and caring family. A primary family caregiver is identified and provided with ongoing instruction and support by hospice experts. Other family members also participate in the care process in various ways and provide relief for the primary caregiver. Hospice experts make themselves available to answer questions and respond to problems as they emerge so that the family as well as the patient never feel abandoned, neglected, or misunderstood. When decision points arise there is consultation within the hospice team, within the family, and between both units. The patient participates in this process to the extent of his or her ability and inclination.
Unfortunately, situations often are less than ideal. The family might have other significant burdens and obligations that must continue to be managed. For example, the person theoretically in the best position to serve as primary family care-giver might be a spouse with physical disabilities of his or her own or a teenager struggling with issues that require intensive family support. The family might also be having difficulty even in talking about the situation and experiencing a pattern of withdrawal or confrontation with each other because of the tensions generated by the illness. Furthermore, the family may not have a physician who knows them well, or a physician who is knowledgeable about hospice and willing to make a referral. Whatever encourages open communication within the family and between family and human service professionals will help to make the wisest and most timely decision about the hospice alternative.
Availability, access, and appropriateness. Although palliative care programs are available throughout much of North America, some areas and some populations are underserved. Information can be obtained through state and county health departments, as well as from websites of such organizations as Hospice Foundation of America, Hospice Nurses Association, and the National Hospital and Palliative Care Organization. Coverage for hospice expenses is provided through Medicare. Four requirements have been established:
- The patient is eligible for Medicare Part A.
- The patient's physician and the hospice medical director certify that the patient has a terminal illness with a life expectancy of six months or less. (The hospice medical director can also serve as the patient's own physician, if circumstances warrant.)
- The patient signs a statement choosing hospice care instead of standard Medicare benefits for the terminal illness.
- Care is provided by a Medicare-approved hospice program.
Regulations are always subject to change, so it is useful to check with local health, social work, or Medicare agencies before applying. Availability and access can also depend on the nature and course of the illness (Stuart 1999). It is useful to inquire of local health agencies to learn whether or not hospice care is a practical alternative for a person with a particular condition.
Useful information about hospice care is provided by books for the general public such as those by Michael Appleton and Todd Henschell (1994) and M. Catherine Ray (1997). Health care professionals can learn of new developments in books such as Improving Care for the End of Life by Joanne Lynn, Janice Lynch Schuster, and Andrea Kabcenell (2000).
Hospice is often and accurately characterized as a grassroots movement. Society—including many health care professionals—decided it was time to become more than alert consumers: We could also be compassionate and effective care-givers to each other in the final phase of life. The future of hospice depends on many factors, but none greater than society's continued commitment to compassionate care.
See also: ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS); CAREGIVING: FORMAL; CAREGIVING: INFORMAL; CHRONIC ILLNESS; DEATH AND DYING; DECISION MAKING; DEMENTIA; EUTHANASIA; GRIEF, LOSS, AND BEREAVEMENT; HEALTH AND FAMILIES; SUBSTITUTE CAREGIVERS
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