Assumptions And Principles Underlying Standards For Care

Of The Terminally Ill Essay, Research Paper

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

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

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

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

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.