PALLIATIVE
CARE
As concerns have grown about the poor quality of life patients
ex-perience during progressive illness, broadening the concept of palliative
care beyond the hospice has begun to take hold in health care settings across
the country ( Jones, 1997). Palliativecare
is an approach to care for the seriously ill that has long beena part of
cancer care. Both palliative care and hospice have been recognized as important
bridges between the compulsion for cure-oriented care and physician-assisted
suicide (Saunders & Kastenbaum, 1997). Advocates for improved care for the
dying have stated that acceptance, management, and understanding of death
should become fully integrated concepts in main-stream health care (Callahan,
1993a; Morrison, Siu, Leipzig et al., 2000). Increasingly, palliative care is
being offered to patients with noncancer chronic illnesses, where comprehensive
symptom management and psychosocial and spiritual support can enhance the
patient’s and family’s quality of life.
While hospice care is considered by many to be the “gold stan-dard” for
palliative care, the term hospice is
generally associated with palliative care that is delivered at home or in special
facili-ties to patients who are approaching the end of life. Palliative care is
conceptually broader than hospice care, defined as the active, total care of
patients whose disease is not responsive to treatment (World Health
Organization, 1990).
Palliative care
emphasizes management of psychological, so-cial, and spiritual problems in
addition to control of pain and other physical symptoms. As the definition
suggests, palliative care is not care that begins when cure-focused treatment
ends. The goal of palliative care is to improve the patient’s and family’s
quality of life, and many aspects of this type of comprehensive,
comfort-focused approach to care are applicable earlier in the process of
life-threatening disease in conjunction with cure-focused treatment. However,
definitions of palliative care, the services that are part of it, and the
clinicians who provide it are evolving steadily.
Some would argue that palliative care is no different from comprehensive
nursing, medical, social, and spiritual care and that patients should not have
to be labeled as “dying” to receiveperson-focused care and symptom management.
In addition to a focus on the multiple dimensions of the illness experience for
both patients and their families, palliative care emphasizes the
interdisciplinary collaboration that is necessary to bring about the desired
outcomes for patients and their families. Interdisci-plinary collaboration is
distinguished from multidisciplinary practice in that the former is based on
communication and co-operation among the various disciplines; each member of
the team contributes to a single care plan that addresses the needs of the
patient and family.
As discussed above, palliative care is broadly conceptualized as
comprehensive, person- and family-centered care when disease is not responsive
to treatment. The broadening of the concept of palliative care actually
followed the development of hospice ser-vices in the United States. Hospice
care is in fact palliative care. The difference is that hospice care is
associated with the end of life, and although it focuses on quality of life,
hospice care by ne-cessity usually includes realistic emotional, social,
spiritual, and financial preparation for death. In the mid-1970s, when hospice
care was introduced in the United States, it was more broadly conceived as care
that addressed the whole person—physical, so-cial, emotional, and spiritual—and
was available to patients ear-lier in the process of life-threatening illness.
After hospice care was recognized as a distinct program of services under
Medicare in the early 1980s, organizations providing hospice care were able to
re-ceive Medicare reimbursement if they could demonstrate that the hospice
program met the Medicare “conditions of participation,” or regulations, for
hospice providers.
While Medicare reimbursement resulted in new rules for hospices, it also
defined when Medicare beneficiaries are able to use their Medicare Hospice Benefit. In most programs, the Medicare
definitions for patient eligibility are used to guide all enrollment decisions.
According to Medicare, the patient who wishes to use his or her Medicare
Hospice Benefit must be cer-tified by a physician as terminally ill, with a
life expectancy of 6 months or less if the disease follows its natural course.
Thus, hospice has come to be defined as care provided to terminally ill persons
and their families in the last 6 months of the patient’s life. Because of
additional Medicare rules concerning completion of all cure-focused medical
treatment before the Medicare Hospice Benefit may be accessed, many patients
delay enrollment in hos-pice programs until very close to the end of life.
The reasons for late referral to hospice and the underuse of hos-pice
services are complex. They may include values and attitudes of health care
providers, the inadequate dissemination of existing knowledge about pain and
symptom management, health care providers’ difficulties in effectively
communicating with termi-nally ill individuals, and insufficient attention to
palliative care concepts in health care providers’ education and training.
Hospices care for approximately 29% of patients who are eli-gible
(National Hospice and Palliative Care Organization, 2001). For the most part,
the remainder of terminally ill patients die in hospitals and long-term care
facilities. It is clear that better care for the dying is urgently needed in
hospitals, long-term care fa-cilities, home care agencies, and outpatient
settings. At the same time, many chronic diseases do not have a predictable
“end stage” that fits hospice eligibility criteria, meaning that many patients
die after a long, slow, and often painful decline, without the ben-efit of the
coordinated palliative care that is unique to hospice programs. The palliative
approach to care could benefit many more patients if it were available across
settings for care and ear-lier in the disease process. In an attempt to make
this valuable ap-proach to care more widely available, palliative care programs
are being developed in other settings for patients who are either not eligible
for hospice or are “not ready” to enroll in a formal hos-pice program. As yet,
there is no dedicated reimbursement to providers for palliative care services
when they are delivered out-side of the hospice setting, making the
sustainability of such pro-grams challenging.
Since the advent of diagnosis-related groups (DRGs) as the basis for
prospective payment for hospital services in the 1980s, there has been a
financial incentive for hospitals to transfer patients with terminal illnesses
who were no longer in need of acute-level care to other settings, such as
long-term care facilities and home, to receive care (Field & Cassel, 1997).
Despite the economic and human costs associated with death in the hospital
setting, as many as 50% of all deaths occur in acute care settings (Hogan et
al., 2000). The landmark Study to Understand Prognoses and Pref-erences for
Outcomes and Risks of Treatments (SUPPORT, 1995) documented troubling
deficiencies in the care of the dying in hospital settings:
•
Many patients received unwanted care at the end of
life.
•
Clinicians were not aware of patient preferences
for life-sustaining treatment, even when preferences were docu-mented in the
clinical record.
•
Pain was often poorly controlled at the end of
life.
•
Efforts to enhance communication were ineffective.
It is clear that many patients will continue to opt for hospital care or
by default will find themselves in hospital settings at the end of life.
Increasingly, hospitals are conducting system-wide assessments of end-of-life
care practices and outcomes and are de-veloping innovative models for
delivering high-quality, person-centered care to patients approaching the end
of life. Hospitals cite considerable financial barriers to providing
high-quality palliative care in an acute care setting (Cassel, Ludden &
Moon, 2000). Public policy changes have been called for that would provide
re-imbursement to hospitals for care delivered via designated hospital-wide
palliative care beds, clustered palliative care units, or palliative care
consultation services in acute care settings.
The place of death for a growing number of Americans after the age of 65
is the long-term care facility (Alliance for Aging Re-search, 1997) As many as
one third of all Medicare beneficiaries who die in any given year spend all or
part of their last year of life in a long-term care facility (Hogan et al.,
2000). The trend fa-voring care of dying patients in long-term care facilities
will con-tinue as the population ages and as managed care payors pressure
health care providers to minimize costs (Field & Cassel, 1997). Yet
residents of long-term care facilities reportedly have poor ac-cess to
high-quality palliative care. Regulations that govern how care in these
facilities is organized and reimbursed tend to em-phasize restorative measures
and fail to reward palliative care (Zerzan, Stearns & Hanson, 2000).
Although home hospice pro-grams have been permitted since 1986 to enroll
long-term care facility residents in hospice programs and provide
interdiscipli-nary services to residents who qualify for hospice care, the
Office of the Inspector General, an oversight arm of the federal government,
has questioned whether such services are an unnecessary duplication of services
already provided by facility staff (Office of the Inspector General, 1997).
While there has been regulatory scrutiny on the one hand, long-term care
facilities of all types are under increasing public pressure to improve care of
the dying and are beginning to develop palliative care units or services,
contract with home hospice programs to provide hospice care in the facil-ities,
and educate staff, residents, and their families about pain and symptom
management and end-of-life care.
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