Introduction
There is
agreement that patients with life-threatening illnesses, including progressive
malignancies, need appropriate therapy and treatment throughout the course of
illness. At one stage, therapy is directed toward assessment and intervention
in order to control and/or to cure such illness and alleviate associated
symptoms. For some persons, however, the time comes when cure and remission are
beyond current medical expertise. It is then that the intervention must shift
to what is now often termed "palliative treatment," which is designed
to control pain in the broadest sense and provide personal support for patients
and family during the terminal phase of illness. In general, palliative care
requires limited use of apparatus and technology, extensive personal care, and
an ordering of the physical and social environment to be therapeutic in itself.
There are, as it
were, two complementary systems of treatment which may often overlap: One
system is concerned with eliminating a curable disease and the other with
relieving the symptoms resulting from the relentless progress of an incurable
illness. There must be openness, interchange, and overlap between the two
systems so that the patient receives continuous appropriate care. The patient
should not be subjected to aggressive treatment that offers no hope of being
effective in curing or controlling the disease and may only cause further
distress. Obviously, the clinician must be on the alert for any shifts that may
occur in the course of a terminal illness, which make the patient again a
candidate for active treatment.
Patients suffer
not only from inappropriate active care, but also from inept terminal care.
This is well documented by studies that only confirm what dying patients and
their families know at first hand.
These principles
have been prepared as an aid to those who have initiated or are planning
programs for the terminally ill in delineating standards of care.
GENERAL
ASSUMPTIONS AND PRINCIPLES
AssumptionsPrinciples1.
The care of the dying is a process involving needs of the patient, family, and
caregivers. The interaction of these three groups of individuals must
constantly be assessed with the aim being the best possible care of the
patient. This cannot be accomplished, however, if the needs of the family
and/or caregiver are negated. 2. The problems of the patient-family facing
terminal illness include a wide variety of issues: psychological, legal,
social, spiritual, economic, and interpersonal. Care requires collaboration of
many disciplines working as an integrated clinical team, meeting for frequent
discussions, and with commonness of purpose. 3. Dying tends to produce a
feeling of isolation. All that counteracts unwanted isolation should be
encouraged; social events and shared work, inclusive of all involved, should be
arranged so that meaningful relations can be sustained and developed.
4. It has been
the tradition to train caregivers not to become emotionally involved, but in
terminal illness the patient and family need to experience the personal concern
of those taking care of them. Profound involvement without loss of objectivity
should be allowed and fostered, realizing this may present certain risks to the
caregiver. 5. Health care services customarily lack coordination. The
organization structure must provide links with existing health care
professionals in the community. 6. A supportive physical environment
contributes to the sense of well being of patients, of family, and of
caregivers. The environment should provide adequate space, furnishings that put
people at ease, the reassuring presence of personal belongings, and symbols of
life cycles.
PATIENT-ORIENTED
ASSUMPTIONS AND PRINCIPLES
AssumptionsPrinciples7.
There are patients for whom aggressive curative treatment becomes increasingly
inappropriate These patients need highly competent professionals, skilled in
terminal care.8. The symptoms of terminal disease can be controlled. The
patient should be kept as symptom free as possible. Pain in all its aspects
should be controlled. The patient must remain alert and comfortable. 9.
Patients' needs may change over time. Staff must recognize that other services
may have to be involved, but that continuity of care should be provided. 10.
Care is most effective when the patient's lifestyle is maintained and life
philosophy respected. The terminally ill patient's own framework of values,
preferences, and life outlook must be taken into account in planning and
conducting treatment. 11. Patients are often treated as if incapable of
understanding or of making decisions. Patients' wishes for information about
their condition should be respected. They should be allowed full participation
in their care and a continuing sense of self-determination and self-control.
12. Dying patients often suffer through helplessness, weakness, isolation, and
loneliness. The patient should have a sense of security and protection.
Involvement of family and friends should be encouraged. 13. The varied problems
and anxieties associated with terminal illness can occur at any time of day or
night. Twenty-four hour care must be available seven days a week for the
patient/family where and when it is needed.
FAMILY-ORIENTED
ASSUMPTIONS AND PRINCIPLES
AssumptionsPrinciples14.
Care is usually directed towards the patient. In terminal illness the family
must be the unit of care. Help should be available to all those involved
whether patient, relation, or friend to sustain communication and involvement.
15. The course of the terminal illness involves a series of clinical and
personal decisions. Interchange between patient, family, and clinical team is
essential to enable an informed decision to be made. 16. Many people do not
know what the dying process involves. The family should be given time and
opportunity to discuss all aspects of dying, death, and related emotional needs
with the staff. 17. The patient and family need the opportunity for privacy and
being together. The patient and family should have time alone and privacy both
while the patient is living and after death occurs. A special space may need to
be provided. 18. Complexity of treatment and time-consuming procedures can
cause disruption for the patient/family. Procedures must be so arranged as not
to interfere with adequate time for patient, family, and friends to be
together. 19. Patients and families facing death frequently experience a search
for the meaning of their lives, making the provision of spiritual support
essential. The religious, philosophic, and emotional components of care are as
essential as the medical, nursing, and social components and must be available
as part of the team approach. 20. Survivors are at risk emotionally and physically
during bereavement. The provision of appropriate care to survivors is the
responsibility of the team that gave care and support to the deceased.
STAFF-ORIENTED
ASSUMPTIONS AND PRINCIPLES
AssumptionsPrinciples21.
The growing body of knowledge in symptom control, patient/family-centered care,
and other aspects of the care of the terminally ill is now readily available.
Institutions and organizations providing terminal care must orient and educate
new staff and keep all staff informed about developments as they occur. 22.
Good terminal care presupposes emotional investment on the part of the staff.
Staff needs time and encouragement to develop and maintain relationships with
patients and relatives. 23. Emotional commitment to good terminal care will
often produce emotional exhaustion. Effective staff support systems must be
readily available.
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