HOSPICE CARE IN THE UNITED STATES Essay

This essay has a total of 4555 words and 20 pages.

HOSPICE CARE IN THE UNITED STATES

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 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 care 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 hospice 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 the
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 is
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
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