In looking toward the future of hospice care, Simson and Wilson (1986) found that respondents were concerned about certain issues and their impact on hospices. These issues included: Medicare certification, government intervention, models of hospice home care, and program expansion. Respondents also offered some suggestions regarding tactics and strategies for the future. Simson and Wilson summarized them as follows: provision of services, patients, community, medical community, hospice team, volunteers, board of directors, certification, the political arena, finances and research.
An eighth issue concerning hospices is their integration into nationwide health care policy. Paradis (1984) noted three major problems that have developed as hospice programs have become integrated. First, there was increasing division among people within the hospice movement concerning the degree to which programs should become integrated with mainstream medical institutions. Opponents of this integration argue that important concepts and values of hospice care will be compromised. Second, the process of integration has created competition and policy conflict among hospice program developers and traditional health care providers who view the emerging hospice programs as competitors. Third, as programs gained access to other sources of reimbursement, flexibility in serving patients decreased, and more emphasis was put on accepting those patients who required the least amount of care. Still, despite these difficulties, integration is the major strategy used by hospice programs to gain organizational stability. Hospice program directors seek to integrate their program into the mainstream health care system in order to benefit from a variety of funding resources, gain status and official recognition, and more readily recruit physicians.
A ninth issue important to the hospice concept is the different types of hospice care. Although individual programs may vary, there are at least five distinguishable types of hospice programs in the United States: the free-standing hospice that provides inpatient service along with home care, the home-health agency hospice, a hospice unit within a hospital, the roving hospice team working with dying patients wherever they are located, and the hospice program with hospital and medical school affiliation.
Russell (1985) found that there are two broad types of hospice programs. One type, the independent hospice, is associated with longer planning periods, a greater amount of home deaths, organizational qualities that stress the need for alternative care of the dying, and more frequent availability of mental health days for staff workers. Independent hospice programs are likely to be in communities with larger populations, fewer hospitals and lower hospital bed vacancy rates. The second type, institutionally based hospice programs, has a tendency to be older, to have ideas emphasizing the cooperation of hospice with preexisting institutions and cost effectiveness, and to have a larger direct care staff along with more financial deficits. Communities with institutionally based programs tend to have a greater number of hospital beds.
A tenth issue involves people s attitudes about death. One problem in our society is the general denial of death in our society and the acceptance of death by those who must face it. Two of the most frequently expressed fears of dying people are the fear of a painful death and the fear of being forgotten, uncared for, ignored, and left alone. Dying patients are often cared for in acute-care hospitals that are geared toward aggressive, curative intervention. Younger people, for example, have a distant awareness of death; death is not supposed to happen at this age. A study by Newsome and Dickinson (2000) on college undergraduates perceptions of death and dying found that most participants had some experience with death. 91% of the respondents reported that they had seen a dead body, and 33% had witnessed a death (Newsome & Dickinson). As for their knowledge of hospice, 77% had heard of a hospice, but only 2 of the 122 students had volunteer experience with hospice. 21% had had a family member or friend involved in hospice at some time (Newsome & Dickinson). Most of the participants had some knowledge of hospice, but few had any actual experience with hospice. There are several factors that may have affected this study. Only 122 of the 521 students returned the survey. Also, since 90% of the participants were planning on entering the health care field, a control group of students who were not planning on entering the health care profession would have been useful for comparison.
An eleventh issue is chronic pain. The hospice concept focuses on dealing with a patient s chronic pain. Chronic pain is immensely different from acute pain. Experience with acute pain cannot be used to understand chronic pain, which is perpetual and progressive rather than transient and reversible. A patient dealing with acute pain, which is likely to be temporary, can summon the strength for endurance while looking forward to the future. The mental attitude of someone with chronic pain, which is likely to get worse, is quite different. That person may be able to summon the strength to endure but may also feel a kind of hopeless resignation, or anger.
A final issue concerns the occupational stress experienced by hospice workers, volunteers and families. The greatest strain on the hospice caregiver comes from the level of intimacy with the patient and family. Caregivers also experience stress because of their perceived role as a curer and their actual role as a carer . The entire health care community struggles to exist in any role other than healing. Stress also comes from having to wait for the patient to die. Quite often, caregivers wish they could do more for the patient.
The research regarding hospice that currently exists is adequate. A journal devoted to this subject has been published since 1985. A search for journal articles containing the keyword hospice will generate results in the hundreds. One problem that exists is the type of research. The majority of this research consists of case studies, surveys and interviews; there is very little experimental research. Of course, the subject being examined does not lend itself well to this kind of research. There are numerous moral and ethical problems that arise when dealing with dying patients. A researcher would be very unlikely to find financial backing for a study that assigned hospice patients, families or workers to different conditions. Therefore, research must be limited to less intrusive and manipulative kinds.
Another problem was the limited response of the participants in many of the studies. Hospice care is a relatively new concept, and many people have not been exposed to it yet. Also, death is still a somewhat taboo subject; the low participancy rate might have been due to people s unwillingness to share their feelings about death.
More research is needed to determine the benefits of hospice care over traditional methods of care. As more people become aware of this alternative approach to care for the dying, more potential participants will be available for research. One suggestion for future research is to provide surveys for families of patients enrolled in hospice programs and all other programs involving care for the dying. Surveys could be given at various times during the patient s life and after so as to assess the families attitudes at different times of the grief process. This survey would be designed in an attempt to determine what factors led people to choose hospice programs, and what factors led people to choose other programs. Also, the survey would ask for what people s needs are for the patient and family during the dying process. This information would give hospice programs suggestions for how to reach a broader spectrum of society.
Another are that requires future research involves hospice caregivers. Information is needed on effective coping strategies for all those involved in giving hospice care. It is obvious that care for the dying with no hope of recovery is extremely stressful from someone in the health care field, where so much emphasis is out on healing the physical body. While hospice care can be seen as ignoring physical health, it instead chooses to put more emphasis on the emotional, psychological and spiritual health of the patient and family. More research on successful coping styles would give hospice programs ideas for how to provide for the needs of the caregivers.
Hospice care has grown immensely in the last 35 years. One element that is critical to the success of hospice care is that society must see that the hospice philosophy offers the best strategy of care during the dying process. Despite the image portrayed on the evening news that death is always a tragic event, death is in fact a natural part of life. Once more people in society recognize that death is a natural, inevitable process, they will better understand and respect the hospice concept.
References
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Hanrahan, P., & Luchins, D. J. (1995) . Access to hospice programs in end-stage dementia: A national survey of hospice programs. Journal of the American Geriatrics Society, 43(1), 56-59.
Mesler, M. A., & Miller, P. J. (2000) . Hospice and assisted suicide: The structure and process of an inherent dilemma. Death Studies, 24(2), 135-155.
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Paradis, L. F. (1984) . Hospice program integration: An issue for policymakers. Death Education, 8(5-6), 383-398.
Russell, G. M. (1985) . Hospice programs and the hospice movement: An investigation based on general systems theory. Dissertation Abstracts International, 45(9), 3082.
Simson, S., & Wilson, L. B. (1986) . Strategies for success: An examination of the organizational development of early hospice programs. Hospice Journal, 2(2), 19-39.
World Health Organization. (1990) . Hospice Facts [On-line]. Available HTTP: www.cp-tel.net/pamnorth/facts.htm
Zehnder, P. W., & Royse, D. (1999) . Attitudes toward assisted suicide: A survey of hospice volunteers. Hospice Journal, 14(2), 49-63.