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Hospice and Palliative Care: Program Needs and Academic Issues

Hospice and Palliative Care: Program Needs and Academic Issues

ABSTRACT: With the renaissance of interest in how best to care for patients with terminal illness comes the need to recognize palliative care and hospice programs as the completion of comprehensive cancer care, not as its antithesis. In practical terms, admission to a hospice program is appropriate when efforts to control the biologic disease have ceased to be helpful and the primary medical focus is on symptom control and quality of life. In this article, the authors explore the goals of palliative care, review the transition to a hospice program, and assess the Medicare Hospice Benefit. Furthermore, they reflect on the importance of and barriers to the appropriate adoption of palliative care programs as well as palliative care education in oncology. [ONCOLOGY 10(7):1070-1074, 1996]

Introduction

For the past 25 years, there has been an intense research effort
to discover the cure for cancer. That research effort has led
to a mature appreciation of this challenge. Although there may
have been an unrealistic expectation for a single "breakthrough"
when the American research effort was expanded in the 1960s, it
is now apparent that progress in the "war on cancer"
will be incremental. For example, the critical insights into molecular
and cell biology spawned by this effort are tremendous. However,
the fact remains that many patients who are diagnosed with cancer
today will predictably die of the disease [1]. This sober fact
has led to a revision in the organization of the research efforts
on cancer and to a renaissance of interest about how best to care
for patients who are terminally ill.

Historical Perspective

The following quotation from an article on controlling pain in
1941 [2] illustrates the prevailing view of appropriate medical
management of patients with advanced malignancy at that time:

"While the patient is able to care for himself fairly well
he may be managed at home, but when he has reached the stage where
his is a bed and chair existence or where frequent attention is
necessary he is best cared for in some institution...the use of
narcotics in the terminal cancer [patient] is to be condemned
if it can possibly be avoided."

Patients tell us that their two biggest fears about advanced incurable
cancer are isolation from their families and severe pain. This
quotation poignantly illustrates that standard management of terminal
cancer during the first half of this century often fulfilled the
fears of patients with cancer. Sadly, this predilection for sequestering
seriously ill persons from their families in hospitals and for
avoiding the appropriate use of opioids remains widely prevalent.

A very different approach was described by Cicely Saunders [3],
after observing the care of some patients with terminal cancer
in England. She noted that when pain was treated with oral morphine
on a regular schedule, patients were much more comfortable than
when morphine was given "as needed." Furthermore, after
listening to what patients themselves said they needed, she founded
the first modern hospice--a place to care for terminally ill patients.
She learned that a team approach, involving members of multiple
disciplines working together, focusing on both patients and their
families, was better than the traditional approach. This approach
has been variably termed palliative care, palliative medicine,
hospice medicine, and hospice care. The choice of terminology
is less important than an understanding of the underlying
principles.

Goals of Palliative Care

Palliative care seeks to relieve human suffering, which is uniquely
subjective. To provide palliative care, practitioners must shift
their focus to the patient's point of view. The patient becomes
the expert on suffering, and the physician becomes the consultant.
Often, health-care professionals find this to be a striking contrast
to providing therapy with curative or remissive intent; in that
paradigm, practitioners' knowledge of the science of medicine
and the management of disease is paramount.

Dr. Saunders' insight from listening and responding to the description
of suffering by terminally ill patients has been amplified by
Dr. Eric Cassel. In a seminal article, Dr. Cassel described the
inherently subjective nature of suffering and its relationship
to the goals of medicine [4]. According to Dr. Cassel, suffering
occurs when any of the many facets of a person's life is threatened.
The threat can come from any of the following aspects: physical
pain, damaged self-image, destroyed social roles, inhibited secret
life, disrupted connections with other people, activities that
can no longer be pursued, a future that cannot be lived, and a
challenge to the sense of meaning in life or the spiritual dimension.
To relieve the suffering of patients with advanced, incurable
cancer, we must use a model that addresses all these aspects of
suffering. In essence, the objective methods of diagnosis and
treatment with which we characterize cancer rarely reveal the
most significant features of patients' illness [5].

It should be apparent that suffering can be physical, psychological,
social, and spiritual. It is experienced not only by patients,
but by their families as well. Again, the goal of palliative care
is to relieve suffering. No single health-care provider could
ever hope to address all these issues for a given patient and
family. Hence, a disciplinary team approach is required. Each
member of the team, be it physician, nurse, social worker, chaplain,
pharmacist, physical and/or occupational therapist, dietitian,
or volunteer, has a unique role to play in the palliative care
of a particular patient and his family. Suffering is best relieved
when all team members communicate and work together as an interdisciplinary
team.

Some aspects of good palliative care are broadly applicable to
all phases of cancer treatment. It is important to manage symptoms
and optimize quality of life throughout treatment. However, the
proportion of attention given to the relief of suffering will
vary during the course of cancer treatment. For example, the symptoms
associated with bone marrow transplantation protocols can be profound.
Although careful treatment of those symptoms is important, the
protocol would not be altered or abandoned to spare patients from
experiencing the symptoms. The primary goal is to prevent death
from cancer, not to prevent suffering. Patients should be made
aware of this goal before they enter into such cancer treatment.

Primary emphasis is given to the prevention of suffering when
efforts to control the cancer itself are no longer possible or
desired. When optimizing quality of life is the primary goal of
medical care, patients should be treated using the principles
and treatment approaches of palliative medicine. Patient referral
to a hospice program can be the optimal way to provide palliative
care to patients with cancer.

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