Assumptions And Principles Underlying Standards For Care Of The Terminally Ill
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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