Ethics and Advance Planning for End-of-Life Care
Advance directive is a term that is commonly used to describe the documents that specify the care a person wishes to have if he or she becomes unable to make medical decisions. The term is generally used for documents that include a living will, a durable power of attorney for health care and “Do Not Resuscitate” orders. The language of the actual document must be consistent with the laws of the state of residence. A number of web sites provide state specific forms and the Bar Association of the state of residence frequently makes the form available.
The American Academy of Family Physicians encourages the use of advanced directives including but not limited to living wills and durable powers of attorney for health care, so that the desires of the individual will be followed in the event he or she lacks the capacity to participate in health care decisions. If, because of mental infirmity or minor status, an individual with a terminal condition does not have the capacity to participate in health care decision-making and has not previously executed a living will or durable power of attorney, the law of the relevant jurisdiction should designate an appropriate surrogate to act on his or her behalf. (2007)
Care at the end of life should embody the following principles:
- Respect the dignity of both patient and caregivers.
- Be sensitive to and respectful of the patient’s and family’s wishes .
- Use the most appropriate measures that are consistent with patient and surrogate choices.
- Ensure that alleviation of pain and management of other physical symptoms are a high priority.
- Recognize, assess, and address the associated psychological, social, spiritual religious issues and cultural taboos realizing that different cultures may require significantly different approaches.
- Ensure appropriate continuity of care by the patient’s family physician and consulting physician when applicable.
- Advocate for the patient’s right to choose any therapy that may reasonably be expected to improve the patient’s quality of life, including alternative or nontraditional treatments.
- Provide access to palliative care and hospice care.
- Respect the right to refuse treatment.
- Respect the physician’s professional judgment and recommendations, with consideration for both patient and family preferences.
- Consider clinical and evidence-based research and education relative to providing care at the end of life. (2000)
The family physician’s continuing partnership with his or her patients provides a meaningful context for quality care at any time, and may be especially helpful at the end of life. The American Academy of Family Physicians (AAFP) promotes the following beliefs:
- The primary focus of end-of-life care should be on high-quality, compassionate and culturally sensitive patient care.
- Family physicians should continue to stay current and competent in knowledge and skills in the areas of palliative medicine and medical management at the end of life.
- Family physicians should continue to support the medical, psychological and spiritual needs of the dying patients and their families by initiating advanced directive discussions and end-of-life planning during times of relative health.
- In this era of advancing technology and increasing discomfort with our ability to apply it wisely, the debate will continue regarding the difficult questions of physicians' assistance in the patient’s process of dying. Only through dialogue can family physicians, their patients and society as a whole continue to explore what is reasonable and morally appropriate.
- The AAFP believes that the highest-quality health care is an outgrowth of a partnership between the patient, the family, and the health professional or professional team. Within the context of this continuing relationship, family physicians must seek the underlying causes of suffering at the end of life, and then aggressively implement measures to correct them. Appropriate education in palliative care and medical management, advanced communication skills to discover the patient’s wishes and value choices, and appropriate sharing of decision-making with the patient and the patient’s family can go a long way toward alleviating suffering and improving care at the end of life. With careful attention to this critical phase in the life cycle, requests for physician-assisted death could be greatly reduced. Even in the face of such requests, family physicians should and will continue to provide assistance in dealing with the dying patient’s symptoms, needs and fears.
- The American Academy of Family Physicians promotes the incorporation of advance directive discussions in a culturally sensitive and appropriate manner as a part of routine outpatient health maintenance. (1997) (2013 COD)
The AAFP does not support the publication and citation of data collected from cruel, egregious and inhumane experimentation, such as the Nazi experiments and data collected from the Tuskegee study (1998) (2008)
(Note: The Principles of Medical Ethics of the American Medical Association are the principles of ethics for the AAFP. The AAFP’s Congress of Delegates, however, can by a two-thirds vote adopt policies or positions relating to ethical issues which add to or contradict the AMA Principles of Medial Ethics. The statement above on publication of data from unethical experimentation is a variance with an opinion of the AMA Council on Ethical and Judicial Affairs.)
The AAFP believes that the ethical concerns involved in foregoing life-prolonging medical treatment are clearly outlined in the AMA's "Current Opinions of the Council on Ethical and Judicial Affairs." Family physicians should be familiar with these opinions (particularly 2.20) to enhance their cooperative efforts with patients and families in appropriate medical decision-making regarding the withholding or withdrawing of life-prolonging medical treatment. (1990)
The American Academy of Family Physicians supports the principle that each individual has the right to determine what medical treatment he or she will receive, including what life-sustaining treatment will be provided when the individual has a terminal condition.
The AAFP encourages its members to do the following:
- Become familiar with applicable state laws on living wills and durable powers of attorney.
- Become knowledgeable about the risks and benefits of resuscitation under different medical situations.
- With consideration of culturally relevant beliefs and practices held by the patient and family, discuss the issue of life-sustaining measures with each of their patients before a medical emergency occurs; optimally, before institutionalization.
- Document in the patient's records that such a discussion took place and note what the patient wishes to have done.
- Include in the patient's medical records any advance directives executed by the patient, such as living wills and durable powers of attorney.
- Review the above information with the patient at reasonable intervals and as circumstances warrant. (1989)
The AAFP supports efforts that help patients retain control over their end-of-life treatment, including portable medical orders such as Physician Orders for Life Sustaining Treatment (POLST) Paradigm Forms that inform medical personnel of their wishes. Further, the AAFP supports efforts to create and maintain free and voluntary centralized registries that contain accurate and up-to-date documentation regarding a patient's wishes related to end-of-life treatment and to allow members of the public to freely input their own wishes into such registries. When consulting a registry, it is important for medical personnel to confirm the filed forls are the patient's current expression of wishes.
The AAFP supports each patient's right to determine the disposition of his or her own remains, allowing him or her to die with dignity and peace of mind.
(2008) (2015 COD)