Hospice Care Essay, Research Paper

Hospice is a concept of caring borrowed from medieval times, where travelers, pilgrims and the sick, wounded or dying could find rest and comfort. The contemporary hospice offers a program of care to patients and families facing a life threatening illness encompassing medical, nursing, spiritual, and psychological care. It is more than a medical alternative – it is an attitude toward death and the process of dying. Terminal disease is managed so that patients can live comfortably until they die. The hospice program in the United States has evolved in part as an attempt to compensate for the inadequacies of the present medical system, particularly in caring for patients with a terminal illness. Hospice care has grown from an alternative health care movement to an established component of the American health care system.

The modern hospice movement began in 1967 when Cicely Saunders opened St. Christopher’s Hospice in London. In the late 1960 s, several Yale University students invited Dr. Saunders to come speak at Yale. These students were inspired to open a similar place in the United States. They opened the Connecticut Hospice in Branford, Connecticut and pioneered the hospice movement in the United States. This became the nation s first specially designed hospice care center.

But what is hospice care? In an attempt to answer, the World Health Organization (WHO) issued a statement in 1990 about the philosophy and techniques of hospice care.

+ Hospice affirms life and regards dying as a normal process.

+ Hospice neither hastens nor postpones death.

+ Hospice provides relief from pain and other distressing symptoms associated with dying.

+ Hospice combines aspects of psychosocial and spiritual care.

+ Hospice offers a support system to help patients live as actively as possible until death.

+ Hospice offers a support system to help the family cope during the patient s illness and during the bereavement process.

We can see that the hospice concept is a biopsychosocial approach to the dying process, concerned with biological, psychological, and social health.

By its proponents, hospice is considered a more humane and sensible approach to terminal illness, combining care, comfort, and support of family and friends as the individual faces death. Their concern for dignity and for maintaining quality of life rather than mere quantity lead to the following practical principles as an appropriate approach to care for the dying and their families. The patient must be as symptom-free as possible in order to enjoy the remaining portion of life as fully as possible. Physicians, nurses and other health care employees must be easily accessible to the patient and family. The same health care team should provide care for the patient, whether at home or in the hospital. The patient s and family s life style must be preserved, and their life philosophies respected by the health care practitioners. Loneliness, isolation and fears of abandonment are to be expected and should be dealt with accordingly. No one person can fully meet the needs of the dying patient; instead, a multidisciplinary team must be available to deal with any needs the patient or family may have. The patient should be treated as a person, not a disease. The family must receive adequate support to help in coping with the impending loss of a loved one. The terminally ill patient must be allowed to give as well as receive. The self-respect, identity and freedom of the dying patient should be built up. The family must feel a sense of participation in care giving and decision-making. The primary care person attending to a patient at home needs support and occasional relief help.

Several issues pertaining to hospice care that are worthy of discussion are individuality, quality of life, palliative care, assisted suicide, access to hospice, benefits of hospice care over traditional care, hospice development, hospice integration, types of hospice, attitudes toward death, chronic pain, and the stress of giving hospice care.

The first issue is the importance of individuality. Belief in the uniqueness of the individual is an essential part of the hospice philosophy. Two aspects of the health care system complicate this belief. The first problem is that traditional health care institutions in the US were begun during the Industrial Age and are still run under the ideals of maximizing efficiency and maintaining cold precision. What they intend to produce is disease free patients. The second problem is that health care practitioners are unable to empathize to a sufficient degree with their patients. Patients in a hospital are expected to be well behaved; health care workers label patients who assert themselves as troublesome . A major component of the hospice concept is respect for the individual. It is a perspective that is concerned with the needs of the person, not with the treatment of a disease. Hospice minimizes the importance of the institution and attempts to make the patient and family the center of concern. Hospice care strives to treat patients as living human beings and not as people who are about to die.

A second issue is quality of life. An essential part of the hospice concept is the quality of life of the patient. The patient and family decide what is meaningful for them, and what constitutes an acceptable quality of life. Hospice caregivers believe strongly in the family s right to determine how they will handle their problems and live out their lives. Hospice supporters feel that the families, not the professional helpers, must play the major role in life and death decisions. The families must decide the type, amount, and quality of care they will seek for their loved ones and for themselves. Hospice workers support the family in their final determination of what dignity is for them. Another aspect of the hospice philosophy is the belief that a good life deserves a good death. When no further treatment of the illness is given, hospice does everything possible to keep the patient comfortable and to let the patient die when the time comes. Surgical procedures are followed only to decrease pain and to increase comfort.

A third issue is palliative care. Is this a reasonable substitute for hospice care? The concept of palliative care is more widely accepted in the health care field than that of hospice. Some of the reasons for this preference include the restrictiveness of hospice regulations and the perceived death sentence of the word hospice. In comparing palliative care and hospice programs, there are several differences. Palliative care aims to alleviate symptoms, control pain and provide support to terminally ill patients and their families. By easing death, rather than prolonging life, palliative care avoids interventions that are excessive, non-beneficial, and costly. Favorable attitudes toward palliative care been followed by increasing use of hospice. But palliative care programs are lacking in spiritual care, social work, volunteers, home care visits, and bereavement services. Hospice includes elements of palliative care, but not all palliative care includes all the elements of hospice care.

In an article by O Connor (1999), two hospital surveys were conducted on health care professionals who had dealt with death and dying. The findings of both studies showed that the participants were not educationally prepared or emotionally supported concerning the issues involved in care for the dying. There are 103 medical schools and only one has a required course with a curriculum in the care of the dying. (O Connor) Some medical schools have electives in end-of-life care; most nursing schools have a curriculum course on death and dying. But since 80% of deaths occur in a health related institution, it is important for health care workers to be prepared for deaths to occur. The development of principles of care for the dying should result in the promotion of palliative care. But, if palliative care does not contain all the basic elements of hospice care, then it will be limited in its contribution to dying patients and their families.

A fourth issue that has implications for hospice care is assisted suicide. Assisted suicide is a major question for those in health care who are involved in end-of-life care. As stated in an article by Zehnder and Royse (1999), The National Hospice Organization does not support the legalization of voluntary euthanasia or assisted suicide in the care of the terminally ill. Their study examined the attitudes of hospice volunteers toward assisted suicide and compared them to a sample of adults. The two groups had very similar favorable attitudes on three of the seven items. Zehnder and Royse found that 50% of volunteers and 47% of adults answered strongly agree or agree to the statement Assisted suicide should be legally permitted in certain cases. The two groups responded equally to the statement Society should put limits on how much it will pay for life-prolonging treatment (30%), and the statement If assisted suicide was legal and a family member or friend wanted assistance in dying, I would be willing to help (27%). A close connection was also found in response to the statement If I were terminally ill, I would prefer treatment to make me comfortable rather than having someone assist me in committing suicide. 70% of volunteers and 79% of adults answered strongly agree or agree. Differences between the two groups were noted on the remaining three items. 21% of volunteers and 34% of adults responded favorably to the statement Life should be maintained regardless of the financial cost to the person or society, 35% of volunteers and 48% of adults answered affirmatively to the statement Legalizing assisted suicide will lead to a perceived duty to die , and 48% of volunteers but only 35% of adults replied positively to the statement If I were terminally ill and experiencing uncontrollable pain, I would consider assisted suicide as an option.

There are several reasons why hospice volunteers were found to be more supportive of assisted suicide than non-volunteers overall. Hospice volunteers have more personal experience with dying and death. They have witnessed difficult deaths and seen lives that have lingered too long. In addition, hospice volunteers have a greater familiarity with the physical, emotional and spiritual pain some patients and their families experience during the dying process. Perhaps the favorable attitudes concerning assisted suicide held by hospice volunteers indicate that too often not enough is being done to manage the pain of the terminally ill. One concept of hospice care training is to respect the decisions, beliefs and cultures of the patients they serve. It is possible that the openness of hospice volunteers to assisted suicide illustrate their support of patient autonomy and freedom of choice.

The study by Zehnder and Royse (1999) has a couple of limitations. First, little is known about those who did not return their surveys; they might have held differing views from those included in the research. The elective nature of returning surveys often leads to sampling problems, so the sample of adults may not accurately represent the attitudes of the general public. Second, the attitudes of hospice volunteers in Kentucky may not be able to be generalized to other hospice volunteers.

A related research article by Mesler and Miller (2000) explored the link between hospice and assisted suicide. In theory, the hospice philosophy strives to make terminal patients feel as comfortable as possible, while neither hastening nor postponing death. But because an important principle of this philosophy is an emphasis on patient autonomy, what happens when what a patient or family wants is to hasten death? In their interviews Mesler and Miller found three recurring themes concerning the tension between hospice care and assisted suicide: whether hospice can provide sufficient comfort to eliminate requests for assisted suicide, the value of life, and an individual s freedom of choice.

Access to hospice care is a fifth issue that requires discussion. Hanrahan and Luchins (1995) reported that hospice care has been found to have better control of pain symptoms, greater satisfaction with care, less anxiety among family caregivers and less cost compared with conventional care. Despite these findings, relatively few dying patients receive hospice services. According to Hanrahan and Luchins, a recent British study reported that only 7% of dying patients received hospice care. The results of the research by Hanrahan and Luchins confirm that very few patients who are dying from dementia receive hospice services. The majority of hospice programs do, however, enroll patients with a secondary diagnosis of dementia. This suggests that hospice care for patients whose primary diagnosis is dementia is feasible from a clinical and fiscal perspective (Hanrahan & Luchins). One obstacle to providing hospice care for dementia patients is in determining survival time, an essential component prior to admission in most hospice programs.

A sixth issue concerns the benefits of hospice care over traditional care. An article by Dawson (1989) compared the needs satisfaction of hospice and traditional programs of care. Dawson noted that hospice recipients frequently express a greater level of satisfaction with their program of care. This article explored the relationships of needs satisfaction, perceptions of the nurse and overall satisfaction with the program of care. Results showed that home care provided by a Medicare certified, community-based hospice program had the highest levels of needs satisfaction, satisfaction with the psychosocial support of the nurse and overall program satisfaction (Dawson). Traditional hospital care had the lowest levels on each of these dimensions (Dawson). The results of this study show that families experiencing the death of a loved one are most likely to have their needs met in a hospice situation rather than a traditional hospital.

A seventh issue is the development of hospice programs. Research on the development of existing hospice programs is important for future hospice growth. Simson and Wilson (1986) indicated that there are several areas within society that affect hospices. The federal government makes decisions about who receives what kind of treatment and how much financial help is given, health professionals have to make choices to enter this growing field, patients and families must maintain their family life in the midst of disability and death, societal values concerning treatment and the dying process, and the existing hospice movement. Any new hospice program has to deal with these unstable issues, and balancing them takes some time. One strategy for developing and maintaining successful hospice programs is to learn from the experiences of established, effective programs.

Simson and Wilson (1986) found that five events that have influenced the development of hospice programs were independently identified by at least two-thirds of the respondents as being particularly significant in the development of their hospices: they referred to Medicare certification, the planning process, resources, the interdisciplinary team, and enrichment activities.

Simson and Wilson (1986) reported that Medicare certification had both positive and negative impact on the development of hospice programs. Positive benefits included legitimizing a hospice in the eyes of others and financial stability. Negative consequences included the added paperwork and bureaucracy, the reluctance of some hospices to terminate good working relationships with other organizations, and the inadequacy of Medicare reimbursement.

A planning process was reported by Simson and Wilson (1986) as an important component in the development of a hospice. The initial planning process was comprised of three key activities: a study period, site visits and invited guests, and leadership (Simson and Wilson). A study period offered a low risk opportunity to investigate the possibility and benefits of establishing a hospice program. Visits to other hospice programs and lectures by invited visitors offered exposure to different models of hospice care and provided practical information. Leadership is also needed during the planning process to keep the program committed to providing the services that patients and their families need.

Resources are absolutely essential to the formation of any new program. The respondents in this study all specified that their programs required some kind of funding that was designated specifically for their use. Simson and Wilson (1986) reported the Health Care Financing Administration demonstrations awarded sufficient funds to participating hospices to ensure fiscal stability and to make financial considerations secondary to an emphasis on program development and delivery of services to patients.

Development of the interdisciplinary team was identified by Simson and Wilson (1986) as an important event in the success of the hospice program. Different people in the health care team, including physicians, clergy, nurses and volunteers, must learn to work together as a team. Areas of potential conflict such as position and authority, distribution of facilities and equipment, and financial issues had to be resolved.

Enrichment activities continued to be created as new initiatives and evaluations occurred. One type of enrichment activity reported by Simson and Wilson (1986) dealt with the establishment of new programs. Bereavement programs are common to all hospices, but a more in-depth approach is not feasible until a hospice program is more securely established. A second type of enrichment activity stated by Simson and Wilson was the expansion of existing outreach to additional patients, particularly the unserved or underserved. The presence of outreach activities indicated the willingness of a hospice program to take a stand on difficult issues and to act on behalf of neglected and even stigmatized clients (Simson and Wilson).

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

Dawson, N. J. (1989) . Needs satisfaction of primary care providers: A comparison of hospice and non-hospice programs of care. Dissertation Abstracts International, 49(12), 5227.

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.

Newsome, B. R., & Dickinson, G. E. (2000) . Death experiences and hospice: Perceptions of college students. Death Studies, 24(4), 335-341.

O Connor, P. (1999) . Hospice vs. palliative care. Hospice Journal, 14(3/4), 123-137.

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.