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HOSPICE CARE

The key concept of hospice is that, in the dying patient, there are physical,
psychological, social, and spiritual aspects of suffering. Hospice care is centered
upon an interdisciplinary team that collaborates to provide comprehensive care by
addressing each of these facets.
Eligibility for hospice care: There are only two general criteria for hospice care: the
patient must have a terminal illness, and an estimated prognosis of six months or
less.hospice care is equally appropriate for patients with nonmalignant disease.
However, for seriously ill patients with advanced chronic obstructive pulmonary
disease, heart failure, or end-stage liver disease, clinical prediction criteria are not
as effective in identifying a population with a survival prognosis of six months or
less.The National Hospice and Palliative Care Organization has published general
guidelines for determining general suitability of a patient for hospice care , and for
determining prognosis for selected non-cancer diagnoses
Structure of home hospice care
Hospice provides home services to patients who are facing a serious illness, and
their families . The interdisciplinary team provides services seven day per week, 24
hours per day . A medical director is part of the interdisciplinary team, although not
usually directly responsible for patient care; that responsibility is generally retained
by the primary (referring) attending physician. However, the primary responsibility
for care still falls on a family member or other identified caregiver. The hospice
team supplements the caregiver, on whom a considerable burden is placed.
Inpatient hospice
In some patients, home hospice care is not feasible or desired. In these cases,
inpatient hospice may be considered. Functionally dependent or cognitively
impaired patients are more likely to be referred for inpatient hospice than home
care . The Medicare hospice benefit and most private insurers do not cover the cost
of room and board at these facilities. These expenses can be significant, often $150
to $250 per day.
THE MEDICARE HOSPICE BENEFIT In the United States, home hospice care for
patients over 65 years of age or for those who have been disabled for longer than
two years is covered through Medicare. Health maintenance organizations (HMOs)
and most private insurers also provide hospice benefits, which are usually modeled
on the Medicare hospice benefit. The Medicare hospice benefit, which went into
effect in 1983 , was based upon similar hospice services in the United Kingdom but
with important differences:
It limited physician involvement. In the United Kingdom, physician leadership
had been essential and integral to the development of the hospice principle.
The loose definition of what constituted hospice care (which was largely needsbased) in the United Kingdom was replaced with specific reference to prognosis
(estimated survival of six months or less).

Eligibility for Medicare hospice benefit There are four criteria for enrollment in
the Medicare hospice benefit:
Eligibility for Medicare part A (hospital insurance)
Medicare approved hospice
The patient signs a statement choosing hospice care instead of regular
Medicare.
The patient's personal physician and the hospice medical director both certify
that the patient has a terminal illness and less than six months to live.
Not all hospice organizations require that a patient have a "do not resuscitate"
(DNR) order.
Structure of the Medicare hospice benefit The Medicare hospice benefit is
divided into a number of certification periods. The patient is first eligible for two 90day periods. These are followed then by unlimited periods of 60 days. For each
certification period, the attending physician must certify that the patient is
terminally ill. In theory, a patient can continue to be eligible for hospice care even if
he or she has survived longer than the specified six-month period. In practice, this is
unusual. In a study of over 260,000 Medicare beneficiaries enrolled in hospice for
terminal cancer, fewer than 8 percent had entered more than 180 days prior to
death [7].
THE HOSPICE PHILOSOPHY OF CARE The hospice philosophy embraces the
general principle of a comfortable death with dignity. Toward this end, there are
both advantages and disadvantages of the hospice approach.
Advantages of hospice There are numerous advantages to care provided in a
hospice program. These include:
Comprehensive interdisciplinary care
Twenty-four hours per day, seven days per week access
Reduction in out-of-pocket expenses for medications, durable medical
equipment, etc
A broad range of nursing, psychosocial, and pastoral care services
Coverage for all age groups
For patients who are eligible for Medicare, the benefit is covered by Medicare part A
(hospital insurance). Patients can still use Medicare to cover all other health
problems unrelated to the terminal illness. These regulations allow reimbursement
under regular Medicare reimbursement for incidental medical expenses unrelated to
the terminal illness (eg, myocardial infarction).
Disadvantages of hospice There is one major disadvantage to the hospice
program, in the eyes of both the physician and the patient: it implicitly restricts
access to other aspects of treatment. Medicare provides a fixed sum of money, paid
on a per diem basis, from which all medical care provided must be paid. The

following difficulties result:


Items such as a chest x-ray or a blood test, which the attending physician may
feel is warranted in providing care of the terminal illness, become the financial
responsibility of the hospice as part of the hospice benefit. This puts the hospice
administration under pressure to reduce or prevent patient access to the acute
medical care system.
Hospitalizations are usually discouraged once a patient is enrolled in a hospice
program. The hospice benefit allows admissions to the hospital for short-term
symptom-related admissions, but the definition is imprecise. As an example, it is
unclear whether this would include the aggressive management of symptomatic
hypercalcemia in patients with metastatic cancer, or radiation therapy for
symptomatic brain metastases. In any event, the hospice benefit is inadequate to
pay for such care.
Specific anticancer treatments, including participation in phase I clinical trials,
are not allowed as they are considered life-prolonging [8].
These significant disadvantages have resulted in a situation in which the
fundamentally excellent concept of hospice care has become a problem for all
parties, including the referring physician, the patient, and the hospice provider. It is
difficult for many physicians to refer for hospice care, even if appropriate, because
they feel they lose control over medical care once the patient is admitted to hospice
[9]. The hospice, on the other hand, is under pressure to reduce medical contact.
Patients and families are concerned that, if they do accept hospice, their medical
care may suffer, and that acceptance of hospice will effect a more rapid death.
Other reasons for late referral include misconceptions and lack of awareness of the
components and skill associated with hospice care, and a reluctance to disclose,
discuss, or acknowledge patient terminality ].
The net effect is that the length of stay in most hospices in the United States is
short and falling, and there is significant underutilization of services. Although
hospice enrollment is increasing, many patinets are referred to hospice care within
days of their death [7,12-14]. In a 2003 study of over 260,000 Medicare
beneficiaries enrolled in hospice for terminal cancer described above, the median
length of stay was about 30 days and 20 percent of patients entered hospice within
seven days of their death [7].
Another analysis of Medicare claims evaluated 28,777 patients 65 years of age or
older who died within one year of the diagnosis of breast, gastrointestinal, or lung
cancer in 1993 and 1996 [12]. Compared to 1993, a significantly higher percentage
of patients who died in 1996 received chemotherapy within two weeks of death
(18.5 versus 13.8 percent), and had at least one emergency room visit (9.2 versus
7.2 percent), one hospitalization (9.1 versus 7.8 percent) or an admission to the
intensive care unit (9.4 versus 7.1 percent) in the last month of life. Although
significantly fewer patients died in acute care hospitals (29.5 versus 32.5 percent),
a higher proportion who used hospice services were enrolled only in the last three
days of life (17 versus 14.3 percent).

This short length of stay drives at the philosophical heart of hospice. The referral is
often precipitated by some crisis, either medical or on the part of the family or other
caregivers. This has several adverse effects:
Higher expense of hospice care but lower reimbursement because of the per
diem payment
Inability of the hospice team to get to know the patient and family in a
therapeutic relationship before death ensues
Damage to hospice team morale and increased burnout in an already stressful
occupation
We believe that the hospice benefit should be reformed to a needs-based system
that should supplement existing Medicare rather than be competitive.
The hospice care team To be Medicare certified, every hospice must provide a
care team with the following specified services.
Registered nurse The patient's nurse acts as the case manager and is
responsible for coordinating the care among the other members of the
interdisciplinary team. A nurse will usually carry an average case load of 10 to 15
patients. He or she will visit each patient regularly, generally between once per
week and once daily, depending upon the need.
Hospice physician The hospice medical director is responsible for participating
in the hospice interdisciplinary team. His or her role is to provide medical input and
direction to hospice administration, liaise with referring physicians on various
aspects of care, including the appropriate use of hospice services, and serve as
physician back-up to the nurse case manager and other professionals. The medical
director acts as a resource for difficult symptom management problems and should
work closely with referring physicians to optimize symptom control in individual
patients.
Attending physician The Medicare hospice benefit encourages the primary
attending physician to remain involved by allowing that physician to participate in
managing care following the hospice referral. In theory, this principle is satisfactory,
but in practice, it is problematic if the referring physicians does not often deal with
dying patients. No interventions should take place without a physician's order; all
orders must be approved by the attending physician. It is the case manager's
responsibility to see that these are carried out, and that close communication with
the attending physician is maintained throughout the illness.
Medical social worker The medical social worker interacts with the patient and
the patient's caregiver and family to identify and resolve psychosocial issues,
provide counseling, and facilitate access to psychosocial services and support
systems.

Volunteers The volunteer is typically a lay person who gives time to help
patients and their families. This might involve running errands, collecting groceries,
reading to the patient, or perhaps visiting the patient while a caregiver leaves the
house on personal business.
Chaplain The chaplain or pastoral care member of the interdisciplinary team is
responsible for spiritual care of both the patient and family. This can be challenging
in a complex multiracial society with a changing religious balance and a varying
attitude towards religious practice. However, recognizing and placing value on
religious and spiritual beliefs is a essential part of caring for the whole person
and/or family. Individuals who have structured religious beliefs obtain considerable
comfort from these beliefs, as do their family members.
The team member responsible for pastoral care obviously cannot provide all of
these disparate services, but should act as a resource person to provide a spiritual
focus. He or she should then involve other appropriate individuals depending on the
person's religious beliefs.
Nursing aides Nursing aides are provided for practical care to assist the
caregiver in the home. These involve typical daily activities such as bathing and
dressing. It is not intended that aides provide custodial care in the home; a typical
visit may be for one hour three times a week, but the rest of the caregiving is by the
caregiver(s). Nursing aides are often permitted to perform light housekeeping, food
preparation, and shopping if these are required for patient care and cannot be
performed by family members.
Basic principles of hospice care The following services are provided by the
hospice team.
Symptom control A key component to effective hospice care is symptom control
in advanced illness. (See "Overview of symptom control in the terminally ill cancer
patient".) This applies to symptoms during the course of the illness as well as in
persons who are actively dying. Effective symptom control requires close
collaboration between the nurse case manager and the physician. Ideally, the
attending physician should feel comfortable in extending the ability to the case
manager to adjust medications within certain parameters to increase the flexibility
of care.
Most hospices use standing orders to facilitate this approach. The attending
physician signs approval at the time that the patient is admitted to hospice. As an
example, titration of analgesics or other drugs may be specified within
predetermined parameters which can then be adjusted by the nurse without having
to constantly refer back to the attending physician for new orders.
Psychosocial care Psychosocial care is of great importance in patients with
advanced incurable disease. A humanitarian approach, sensitivity to cultural issues,
and openness to differing religious and spiritual beliefs are all important. An

important concept is to extend similar consideration to the patient's family or


caregivers who carry a considerable burden during this time. Support of the family
and caregivers is a preoccupation of any good hospice service.
Nursing Practical nursing of the hospice patient is a considerable challenge. This
is usually achieved by a combination of nurses aides, caregivers/family members,
and the nurse case manager. On occasion the nursing burden can be overwhelming,
due, for example, to an extensive wound. Delivery of care necessitates effective
education of the family and other caregivers given the limited time the hospice
aides or nurses spend in the home.
Bereavement Bereavement care of the family and caregivers after the patient
has died is another central concept. Bereavement itself causes morbidity and
mortality. There are specific requirements for bereavement care mandated by
Medicare for one year after the patient's death, although no specific reimbursement
is provided. The precise nature of bereavement services varies. In most cases, there
is a process to identify persons at high risk of difficult bereavement (eg, unexpected
deaths, multiple deaths in a family in a short space of time, or family or caregivers
with poor social support systems).
Respite care Respite care typically involves admission to a local nursing home
for a three- to-five day period to give the caregiver a rest from caregiving. As an
example, this might allow a caregiver to take a short vacation. Hospices usually
have contacts with local nursing homes to facilitate this. However, respite care is
probably underused as many caregivers are unwilling to relinquish the responsibility
of care, even briefly.
HOSPICE AND THE FIELD OF PALLIATIVE MEDICINE As hospice developed
through the 1970s and 1980s, it became clear that, although it arose outside the
acute medical care system, there was a need to bring these philosophies and
practices into that area. The specialty of palliative medicine has grown out of this
concept [15].
Palliative medicine incorporates the approaches developed by hospice but applies
them in the traditional medical care system [16]. Palliative medicine and hospice
care are therefore not synonymous especially as practiced in the United States.
Specific skills that are important in palliative medicine are:
Communication
Decision making in advanced disease
Management of complications of advanced disease
Psychosocial care of the patient and family
Symptom control
Care of the dying
Coordination of care
The development of palliative medicine in the United States is now progressing

rapidly, with numerous institutions setting up palliative care teams using a variety
of models and structures. The concept is to use an interdisciplinary team that
typically consists of physician, nursing, and psychosocial professional members.
Some are linked to local hospices.
Palliative medicine is not restricted by the Medicare hospice benefit in terms of
reimbursement for medical interventions. The concept of "hospice" is a part of this
practice but does not define it either from a clinical care or reimbursement
perspective. Significant physician involvement and leadership is characteristic of
these programs . In a patient who has an inevitably fatal illness, early referral to
hospice is desired. However, as noted above, there is an inherent tension in the
timing of referral because of the restrictions the Medicare hospice benefit puts on
acute medical care.# uw new discovery