Symptom management and control: For the cancer patient, physical
symptoms and discomfort may change in nature, quality, and intensity within short,
unpredictable time periods, often requiring close monitoring and therapeutic
modifications at regular but nonspecific time intervals. Further, possible or
actual changes in mentation, functioning, and personal control may precipitate
intense emotions that are unfamiliar, unwanted, and anxiety-provoking. Chronicity,
remissions, and exacerbations of a variety of uncomfortable symptoms; family
separation; financial strain; functional limitations; and role disruptions are but
a few of the issues that characterize the lives of individuals with advanced,
progressive, or incurable illnesses. Even for those who experience lengthy
disease-free intervals, the challenge of reducing the effects of the illness in
their lives can be difficult, and assistance from multiple specialists is often
needed. Common symptoms that are treated and controlled or relieved by palliative
care interventions can include the following:
- Pain
- Difficulty breathing
- Loss of appetite and weight loss
- Fatigue
- Weakness
- Sleep problems
Depression and anxiety
- Confusion
Palliative treatment in context: The palliative treatment experience
must be examined within the context of the health care delivery system for its
potential and its pitfalls to be fully understood. Treatment advances, societal
attitudes, and changes in health care structure and financing have all had a
dramatic impact on the delivery of palliative care and the creation of gaps
between the philosophy and delivery of palliative care services. The secrecy that
prevailed in the 1960s and prohibited disclosure of a cancer diagnosis by most
physicians has given way to the practice of routinely imparting the particulars of
diagnosis, treatment options, and prognosis. Despite this change, it has been
observed that persistent cancer-related fears and negative attitudes among health
care providers have led to a discrepancy between words and actions, resulting in
communication of emotionally laden information in a fashion ranging from
overprotective and paternalistic to blunt and matter of fact. Further, patients
who are not candidates for curative treatment often find themselves without
adequate information and resources to manage their abundant physical and
psychosocial problems.
Discrepancies between attitude and practice have been demonstrated by
clinicians who have been found to avoid clear, open discussions of topics such as
prognosis and death despite consistently expressed beliefs regarding the
importance of openness and honesty with all mentally competent patients.
Therefore, while the prevailing attitude in health care supports disclosure of
medical information and active involvement by patients in decisions that affect
them, the actual behavior of health care providers reflects a more limited
improvement in patient care. Clinician concerns and personal issues can affect
communication with patients at key decision-making and transition points. The need
for clinician support and access to resources is recognized as key in helping
members of the palliative care team to assist patients fully, but there is much
need for improvement and more resources in this area.
Psychiatric and medical comorbidity: The time during which palliative
treatment is necessary has lengthened, causing an increase in the number of cases
in which patients need psychiatric care alongside medical care. This phenomenon
puts inordinate stress on patients, families, professional caregivers, and the
health care system at large. Psychiatric problems tend to be treated based on
whether reimbursement is provided by the patient's insurance company, and
reimbursement occurs only when psychiatric symptoms emerge as disease states.
Insurance rarely covers psychiatric interventions targeted toward symptom
management and quality-of-life enhancement, although comprehensive, low-cost
interventions supported by scientific evidence of their efficacy are available.
Multisystem problems are generally not addressed well by the medical system, which
is fragmented and oriented toward specialty care.
Because recipients of palliative cancer treatment are not candidates for
curative therapies, they are faced with their own mortality and are vulnerable to
intense fear and psychological distress. However, the health care system is
oriented toward cure and survival, and it typically places a lower priority on
treating and addressing psychosocial issues. Patients receiving palliative care
are often concerned about issues such as impending death, pain or other physical
discomfort that cannot be relieved, disfigurement, functional decline and
increasing dependency on others, loss of mental acuity and bodily functions, and
the effects of their illness on their families and friends. These patients need to
be closely monitored to manage changes in symptoms and functional status and to
evaluate the level of relief achieved through targeted interventions.
Ethical aspects: Care providers must be mindful that the
psychological vulnerability of patients receiving palliative care may put some
individuals at risk for unnecessary suffering, exploitation, and victimization
based on the cure-oriented values inherent in modern health care. For example, an
issue that repeatedly surfaces among patients, family members, and professional
care providers pertains to the use of aggressive treatment protocols in the
presence of progressive, incurable disease. Patients may seek or be recruited for
participation in experimental protocols even when treatment is not expected to
extend their lives. Questions of medical ethics and the meaning of
informed
consent arise in regard to the participation of terminally
ill subjects in experimental protocols. Some experts question whether having a
particular medical conditions or status (such as being terminally ill) diminishes
full participation in the process of informed consent.
The need for health care professionals to establish structured dialogue with
patients, family members, and care providers regarding treatment goals and
expectations is essential. Treatment planning should take into account the fact
that certain individuals with a terminal illness may respond to participation in
an investigational treatment with increased hope of survival, regardless of their
real chances of survival. These issues, however, become even more complex as
changes in health care financing prohibit reimbursement for experimental
therapies. Some people will be unable to undergo experimental therapies, and
others may assume the costs of aggressive yet often medically futile treatments,
creating compelling ethical issues and tensions. These are weighty issues that
require active dialogue and debate. The combination of rapid medical and
technological advances, diminishing ability to finance rising health care costs,
growing numbers of chronically ill patients living longer periods of time, and an
ever widening gap in health care access between the affluent and poor is adding to
the problem.
Patients, their families, and health care providers need to separate and clarify personal values, thoughts, and emotional reactions to these delicate issues if individualized, quality palliative care is to be provided. Psychiatric consultation-liaison nurses, psychiatrists, social workers, and chaplains can be invaluable in assisting patients, family members, and staff to grapple with these issues in a meaningful and productive manner.
Dying and terminal care: Once the terminal care period has begun, it
is usually not the fact of dying, but the quality of life, that is primary for
patients and families. Palliative care that continues into the terminal stage of
cancer should continue to relieve physical and psychological symptoms and promote
comfort and well-being until the patient dies. Often patients and families who
have received palliative services in earlier stages of the illness will be more
open and accepting of palliative efforts in the final stage of life. In addition,
it is important that professional and family caregivers recognize that their work
is emotionally draining, and they should seek guidance and support whenever
possible.
Professional caregivers should target therapeutic interventions toward
increasing the dying patients’ sense of personal control and self-efficacy within
the context of their functional decline and increased dependency. It is also
therapeutic in most cases to inform patients of available resources aimed at
discussing and addressing any concerns regarding death and
dying. From a practical standpoint, professional caregivers
may help patients by inquiring about any unfinished business, including wills and
conversations with family and friends, and to provide them with the necessary
support and encouragement to accomplish these final goals.
Factors including personal values, socioeconomic status, cultural background, and religious beliefs can influence patients’ expectations and experiences as they approach death. For example, a stoic attitude that minimizes or negates discomfort may be related to a cultural value learned and reinforced through years of family experiences. Similarly, an extremely emotional response to routine events during the terminal phase of illness does not necessarily signal mental maladjustment but rather the person’s cultural norm. Awareness of the person’s cultural, religious, ethnic, and socioeconomic background is important in the process of understanding individual behaviors and limiting value judgments.
Psychiatric complications and terminal care:
Delirium, depression, suicidal ideation, and severe anxiety
are among the most commonly occurring psychiatric complications encountered in
terminally ill patients. When severe, these problems require urgent and aggressive
assessment and treatment by psychiatric personnel who can initiate pharmacologic
and psychotherapeutic treatment strategies. It should be stressed that psychiatric
emergencies require the same rapid intervention as medical crises. In spite of the
seemingly overwhelming nature of psychosocial responses in cancer patients, most
do indeed cope effectively, and it is important to recognize that intense emotions
are not one and the same as maladaptive coping.
Hospice care:
Hospice
care involves structured programs that offer supportive and
palliative care at the end of life. The patient, family, and health care team
decide when hospice care should begin, but typically patients are eligible for a
hospice program when they are estimated to have about six months to live. Hospice
care can be home or institution based. Hospice care aims to manage physical and
emotional symptoms with the overriding goal of allowing patients to live their
last days with dignity and as high a quality of life as possible. Most hospice
programs offer family-centered care, meaning that they involve the patient and
family in decision making, which reduces distress and enhances control. A hospice
team usually consists of a physician, an advanced practice nurse, a bedside nurse,
nursing assistants, social workers, and chaplains. Goals of hospice treatment may
include increased time of survival, symptom control, and enhanced quality of life.
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