Hospice Care In The United States

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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 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 England. In the late 1960's, several Yale University students invited Dr. Saunders to come speak at Yale

These students were inspired to create a similar service 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. 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. A. Hospice affirms life and regards dying as a normal process.

B. Hospice neither hastens nor postpones death. C. Hospice provides relief from pain and other distressing symptoms associated with dying. D.

Hospice combines aspects of psychosocial and spiritual care. E Hospice offers a support system to help patients live as actively as possible until death. F. 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 bio-psychosocial approach to the dying process, concerned with biological, psychological, and social health.

Because of 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 their life as fully and comfortably as is 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.

The 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 in the decision-making. The primary care person attending to a patient at home needs support and occasional relief. 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 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/illness free patients. The second problem is that health care practitioners are unable to empathize to a sufficient degree with their patients.

Patients and families in a hospital are expected to be well behaved at all times. Health care workers label patients who assert themselves as "troublesome". A major component of the hospice concept is respect for the individual. A common perspective of Hospice is that it 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 Care 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. 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 restrictions 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 have been followed by the increasing use of hospice.

However, palliative care programs are lacking in spiritual care, social work, volunteers, home care visits, and bereavement services. Hospice includes elements of palliative care, however palliative care does not include 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. However, 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. However, 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 seve...

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