AAGP Position Statement: End-of-Life Care
Adopted by the AAGP Board of Directors, February 2001
Principle 1. Respect must be given to the dignity of both patient and caregiver, with special attention to the requirements brought about by the changes in mental state, psychodynamic and social functioning and behavior that are an integral part of the aging process and that are not to be considered psychopathological per se.
Rationale: The mental state is affected not only by the terminal condition(s) but also by the aging process. In turn, this affects the processes of diagnosis and treatment and appraisal of the quality of life. Thus, an informed sensitivity must be brought to the care of the elderly person at the end of life that takes account of these changes as they occur in the individual patient. The individualís own perspective on this time of closure, support of psychodynamic defenses and the personality structure that have developed over the lifespan, life review, awareness of sensory changes that accompany aging and the effect these have on communication, countering fear of helplessness and abandonment by the provision of a comforting presence, and assistance with active conflicts (e.g., within the family) are only some of the issues that must be assessed and knowledgeably managed.
Principle 2. End-of-life care must be sensitive to and respectful of the patientís and familyís wishes, both with regard to treatment options and the wider concerns they may have about end-of-life processes and the ensuing period of bereavement.
Rationale: Patients as well as their families and other caregivers need to be provided with the information, resources and support they need regarding the final phase of life and the immediate aftermath for the survivors.
Principle 3. Care should make use of the most appropriate measures that are consistent with the patientís choices.
Rationale: Optimal medical care of all patients, not just those who are dying, rests on frank and sensitive communication between patients and physicians. For dying patients, this ordinarily entails recognition and discussion of the facts surrounding prognosis and the likely course with active treatment or a palliative plan of care. The conversations throughout must continue to elicit and respond to the patientís needs. When the patient loses decision-making capacity, care should be guided by these previous conversations as well as by written advance directives, if available.
Principle 4. High priority should be given to alleviation as far as possible of pain and distress in psychological and social domains as well as in the physical arena.
Rationale: In recent years emphasis has been placed on the alleviation of pain in dying patients. Many have drawn attention to the fact that pain control is frequently sub-optimal in this group. AAGP wishes to ensure that an equivalent emphasis is placed upon the alleviation of psychological distress. This often takes the form of treatable Axis I mental disorders, e.g., delirium, depression, anxiety, and behavioral disturbances. Symptoms of these disorders can be effectively managed with pharmacological, psychotherapeutic and environmental interventions, all of which are themselves in need of modification to take account of the aging process. In addition, however, AAGP recommends that distress arising from normal psychological reactions, as distinguished from psychiatric syndromes or disorders, should also receive skilled attention. This includes sensitivity to and ability to work with feelings of hopelessness (not necessarily arising in the context of depression), absence of self worth when not productive, weariness with life and a desire not to be a burden to others. Well-informed consideration must also be given to the interplay between the physical and the psychological, i.e., the manifestations of psychiatric and somatic co-morbidity.
Principle 5. Dying patients should be guaranteed access to palliative care and mental health treatment as part of end-of-life care, without care being contingent on the financial status of the patient. Reimbursement and administrative arrangements should encourage continuity across sites and time, so that commitments to patients can be relied upon over time and across sites.
Rationale: Palliative care is often provided most appropriately in the patientís own home, a setting where reimbursement is inadequate under many existing insurance plans. Dying patients should be able to receive palliative care in the home, the hospital, and the nursing home, depending on the needs and preferences of the patient, without a disruption in the continuity of the patientís care.
Patients and families are presently faced with major financial obstacles to choosing palliative care, while payment for continuing highly technological acute care, (e.g., dialysis, ventilator care, etc.) is readily available. Physician reimbursement should also be modified to promote palliative care. Like other forms of primary care, palliative care is time-consuming, does not involve highly reimbursed procedures, and requires substantial counseling of patients and families.
Rationale: A rigid reliance on traditional therapies denies recognition that the process of dying is not simply a medical issue and that it requires culturally competent treatment. It is therefore appropriate to acknowledge and provide for therapies outside of traditional health care disciplines, according to individual patient values and preferences.
Principle 7. Dying patients should have access to palliative care and hospice care, to encompass psychiatric care where appropriate.
Rationale: Regulatory barriers to the provision of appropriate psychiatric interventions at the end of life are especially found in long-term care settings. These need to be modified in order to enable access to and continuity of psychiatric care.
Current arrangements for care make it difficult to provide symptom management, continuity, or advance planning. Indeed, current reimbursement structures make it financially problematic to provide excellent care for the very sick, except perhaps in hospice. Conventional fee-for-service payments make sustaining team care over time very difficult, and managed care in Medicare pays no more for very sick persons than for healthy ones. Requirements regarding availability of family and a home for caregiving regularly prevent some patients from receiving palliative care through hospices. Uncertain or unavailable estimates of prognosis also may serve inappropriately to exclude patients from hospice care.
Many laws and regulations made for other purposes end up making good palliative care difficult. For example, regulations intended to promote adequate nutrition for nursing home residents can cause great hardship for dying nursing home residents. Laws intended to make it more difficult to divert narcotics into abuse can also make it very difficult to ensure adequate treatment for persons who need pain relief. Laws and regulations like these should be rewritten or revised.
Principle 8. A patient has the right to select among and/or refuse treatment, as expressed by the patient or an authorized surrogate. When the patientís decision-making capacity becomes impaired, this must be recognized, and a surrogate decision maker should be identified to ensure the continued provision of appropriate care and the preservation of optimal quality of life for the patient who is cognitively impaired.
Rationale: Due attention must be paid to the sometimes subtle changes in mental state which are frequently present at the end of life and which may, either owing to dementia, delirium, depression or other causes, affect the patientís capacity to make treatment decisions and enjoy the best quality of life in the time remaining.
Principle 9. Respect the physicianís professional responsibility to discontinue some treatments when appropriate, with consideration for both the patient and family preferences.
Rationale: Physicians now may face substantial legal pressure to continue treatments which may be counterproductive and contrary to good palliative care that is called for when a patient is dying.
Principle 10. Adequate funding for clinical and evidence-based research on the optimal care of dying patients is essential to improving end-of-life care.
Rationale: Much of the information base needed to inform patients and physicians regarding optimal care of dying patients does not yet exist. Studies should be undertaken to document the outcomes of various models of care delivery, medications, and treatment settings, focused on the experience of the dying patient and significant others. Although traditional biomedical research on symptom relief is needed, much of what is already known about symptom relief is not implemented effectively because of professional ethical concerns about aggressive symptom management and institutional barriers to the provision of palliative care. Research to identify these barriers and to evaluate educational approaches and interventions to improve the quality of end-of-life care is needed.
Principle 12. Physicians and other health care professionals, at all levels of training should receive concrete, insightful and culturally sensitive instruction in the optimal care of patients at the end of life. Health care professionals and patients need to be educated regarding the availability of palliative care as an important option for dying patients.
Rationale: Education of AAGP members, other professionals at all levels of training, and the community is one of the central goals of AAGPís mission. This element of our mission includes matters pertaining to the end of life. Health professional students and practitioners throughout their lifetimes in training in the United States rarely receive specific and in-depth instruction on the care of dying patients. This instruction should address attitudes toward and reactions to death and care of the dying, the physiciansí roles during the dying process and bereavement, symptom management (especially pain control and adequate use of analgesics), and communication skills. The importance of knowledge about the care of dying patients should be reinforced by its evaluation on board exams and other specialty certification exams.