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Changing Perspectives on Palliative Care

Changing Perspectives on Palliative Care

ABSTRACT: In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in Great Britain in the 1960s. The hospice movement developed largely as a home-care program and alternative to conventional care. Hospice regulations and reimbursement allowances limit services to patients who are expected to die within 6 months and who forego many common oncologic treatments. On the other hand, palliative care is a more recent academic, medically mainstream discipline that attempts to integrate the hospice approach into oncology and other areas of clinical medicine from the earliest phases of diagnosis and treatment. Palliative care entertains all appropriate forms of care at any phase of an illness. In this review, we describe the key goals of palliative care, which include excellent pain and symptom control, psychosocial and spiritual support for the patient and family, informed decision-making, and coordinated services across the continuum of care. We focus on selected recent developments that are important to oncology practice: the role of artificial nutrition; management of malignant small bowel obstruction; communication tasks, such as information sharing, recognition of patient preferences, advanced-care planning, and bereavement care; and ethical principles related to the hastening of death. [ONCOLOGY 16:515-527, 2002]

Although the hospice movement in the United States began as a
grass-roots, antiestablishment approach to end-of-life care and was often highly
critical of oncology practices, the development of a more academic and medically
mainstream palliative-care movement promises greater integration of hospice
approaches into oncology and other areas of clinical medicine. Palliative care
is based on the hospice philosophy that emerged from Great Britain in the 1960s,
in which an interdisciplinary team approach was employed to provide
comprehensive patient and family care. Unlike hospice care, palliative care is
not meant to be available only when patients meet specific eligibility
requirements, such as having an expected survival of less than 6 months or
choosing to forego conventional oncologic treatments. The key goals of
palliative care—pain and symptom control, psychosocial and spiritual support
for the patient and family, informed decision-making,[1] and coordinated
services across the continuum of care—are often important at the earliest
phases of a fatal, progressive illness, and typically become more important or
even an exclusive goal as the disease progresses. Palliative care, therefore,
can be practiced alongside oncology and other fields of medicine.

Palliative Care and Oncology

Palliative care is defined as comprehensive, interdisciplinary
care, focused primarily on promoting quality of life for patients with a
terminal illness and for their families.[2] Based on the hospice philosophy that
emerged in England in the 1960s, most notably at St. Christopher’s Hospice in
London, this approach to end-of-life care includes the following key features:

  • meticulous symptom control.

  • psychosocial and spiritual support for the patient and the
    family, including bereavement care for the survivors.

  • the fostering of information-sharing and professional
    guidance in the development of a care plan that reflects the patient’s
    personal values and goals.

  • a team approach involving physicians, nurses, social workers,
    chaplains, and volunteers.

  • sites of care alternative to the usual acute-care hospital,
    such as hospice home care, but including inpatient hospices or similar
    institutional settings that promote a homelike atmosphere.

  • the provision of coordinated services across the continuum of

The term "palliative care" is commonly used as a
synonym for end-of-life or terminal care and may be viewed as an alternative to
curative or life-prolonging treatments, as in speaking of comfort or supportive
care when aggressive care has failed. However, palliative care has an important
role in all phases of a progressive, fatal illness, and should be viewed as
complementary to and compatible with management strategies focused on
eradicating an illness or slowing its progression. For example, good pain
control and the assessment and treatment of depression or anorexia/cachexia are
appropriate whenever these symptoms emerge during the course of a fatal illness,
regardless of other strategies used to eradicate the underlying disease.

Indeed, some cancer therapies that were introduced as
potentially curative or life-prolonging have been shown to primarily improve
quality of life, and may be described as palliative. Certainly, palliative care
has a more prominent role in the last phases of a terminal disease, but no clear
transition occurs between aggressive and palliative management.[3] A true
transition to hospice or comfort care occurs only when palliative care becomes
the sole focus of care.

Palliative Care in the United States

The best known example of palliative-care principles in the
United States is found in the hospice setting. Hospice became a benefit under
Medicare in 1982 and now is a regular, although somewhat underutilized feature
of most health insurance plans. As of 1999, the National Hospice and Palliative
Care Organization reported that more than 3,000 hospice programs were operating
across the United States. Of the nearly 2.4 million Americans who died in 1999,
roughly 700,000 (29%) received hospice services.

At present, hospices care for more than half of all Americans
who die from cancer. Increasing numbers of patients with nonmalignant terminal
illnesses, such as end-stage heart or lung disease, liver and renal failure, and
acquired immunodeficiency syndrome are referred to hospice care. Unfortunately,
most receive only a few weeks of hospice services.[4]

In response to the perceived lateness of hospice referrals,
"bridge programs" have emerged over the past 5 to 10 years. These
programs offer hospice-like care to patients and their families but do not use
the limited hospice admission criteria, such as having a probable life
expectancy of 6 months or less; forgoing all aggressive, expensive medical
interventions; favoring care in the home and having a primary caregiver there;
and carrying insurance that covers hospice services.

Also emerging in the past few years are palliative-care
programs, typically academic, hospital-based, and led by a physician—in
contrast to hospices, which generally are nonacademic, community-based, and
predominantly provide nursing services with minimal physician input. Indeed, new
palliative-care programs are often part of a medicine or oncology program and
may be more closely aligned with the values of oncologists. Palliative-care
programs typically reside in acute-care hospitals or subacute-care facilities,
and offer consultative services as well as direct patient care in a dedicated
inpatient unit or scattered beds, plus outpatient care and home care.

Palliative Care/Oncology Overlap

Much of an oncologist’s work is palliative, especially when
viewed with the above definitions in mind. Between 1985 and 1991 at the British
Columbia Cancer Agency, 46% of all radiation therapy courses were deemed
palliative.[5] Similarly, much chemotherapy is palliative. According to a
prospective survey in a large teaching hospital,[6] almost a quarter (23%) of
cancer admissions were for palliative care, either alone or in combination with
another aspect of care. Palliative-care activity accounted for 34% of daily bed
use, compared with 32% for the administration of chemotherapy. In one series, at
least 7% of all cancer patients received strictly palliative chemotherapy.[7]
Certainly, palliative-care education needs to be included in the training of all

MacDonald[9,10] suggests that palliative care, like many other
aspects of cancer control, should be regarded as an exercise in prevention—ie,
as a means of avoiding suffering by recognizing and treating as early as
possible, the symptoms associated with cancer. An optimal continuum of cancer
care, he suggests, recognizes that a mix of therapies should be used to treat
both the disease and the symptoms. These therapies are continually modified as
the disease progresses, symptoms change, and the goals of care are renegotiated.
Indeed, the same therapy may be used to attain different outcomes at different
stages of a disease.

Progress in Palliative Medicine

The evolution of both oncologic and palliative-care practices
and their cross-fertilization have already changed the manner in which the two
fields relate, and will continue to do so. In clinical situations in which any
oncologic treatment has little value, even at the onset of a recognized illness
(eg, in patients presenting with widespread metastatic solid tumors, advanced
hematologic malignancies, or a poor performance status due to the cancer or
comorbid conditions), palliative care may immediately assume a major role in
patient care. The development of more effective cancer treatments or the use of
bone marrow transplantation for some malignancies and for older patients may
mean that palliative-care teams assume a significant role later in the course of
the disease.

Just as oncology and medicine have continued to evolve since the
birth of the hospice movement, so too have pain and symptom management and
psychosocial and spiritual care. For example, pain management has improved with
the development of clear guidelines on the use of analgesics, the advent of new
formulations of opioids and nonsteroidal anti-inflammatory agents, greater
appreciation of the role of neuropathic pain and approaches to its treatment,
wider availability of programmable infusion pumps, and selected use of epidural
drug administration. Similarly, improvements in the management of other symptoms
are evident with the introduction of new antiemetics, antidepressants, and major
tranquilizers, the use of octreotide (Sandostatin) for small bowel obstruction,
and a greater appreciation of the value of psychostimulants and
glucocorticosteroids in end-of-life care.

Even a brief description of the progress in palliative medicine
is beyond the scope of this review, but we have focused on a few areas that may
be discussed less commonly by oncologists: artificial nutrition, malignant small
bowel obstruction, communication skills, and ethics.


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