AMA Journal of Ethics^®

Opinion 2.191 - Advance Care Planning

The process of advance care planning is widely recognized as a way to support patient self-determination, facilitate decision making, and promote better care at the end of life. Although often thought of primarily for terminally ill patients or those with chronic medical conditions, advance care planning is valuable for everyone, regardless of age or current health status. Planning in advance for decisions about care in the event of a life-threatening illness or injury gives individuals the opportunity to reflect on and express the values they want to have govern their care, to articulate the factors that are important to them for quality of life, and to make clear any preferences they have with respect to specific interventions. Importantly, these discussions also give individuals the opportunity to identify who they would want to make decisions for them should they not have decision-making capacity.

Proactively discussing with patients what they would or would not want if recovery from illness or injury is improbable also gives physicians opportunity to address patients’ concerns and expectations and clarify misunderstandings individuals may have about specific medical conditions or interventions. Encouraging patients to share their views with their families or other intimates and record them in advance directives, and to name a surrogate decision maker, helps to ensure that patients’ own values, goals, and preferences will inform care decisions even when they cannot speak for themselves.

Physicians should routinely engage their patients in advance care planning in keeping with the following guidelines:

1. Regularly encourage all patients, regardless of age or health status to:

   (a) Think about their values and perspectives on quality of life and articulate what goals they would have for care if they faced a life-threatening illness or injury, including any preferences they may have about specific medical interventions (such as pain management, medically administered nutrition and hydration, mechanical ventilation, use of antibiotics, dialysis, or cardiopulmonary resuscitation); 
   (b) Identify someone they would want to have make decisions on their behalf if they did not have decision-making capacity; 
   (c) Make their views known to their designated surrogate and to (other) family members or intimates.

2. Be prepared to answer questions about advance care planning, to help patients formulate their views, and to help them articulate their preferences for care (including their wishes regarding time-limited trials of interventions and surrogate decision maker). Physicians should also be prepared to refer patients to additional resources for further information and guidance if appropriate.
3. Explain how advance directives, as written articulations of their preferences, are used as tools to help guide treatment decisions in collaboration with patients themselves when they have decision-making capacity, or with surrogates when they do not, and explain the surrogate’s responsibilities in decision making. Involve the patient’s surrogate in this conversation whenever possible.
4. Incorporate notes from the advance care planning discussion in the medical record. Patient values, preferences for treatment, and designation of surrogate decision maker should be included in the notes to be used as guidance when the patient is unable to express his or her own decisions. If the patient has an advance directive document or written designation of proxy, include a copy (or note the existence of the directive) in the medical record and encourage the patient to give a copy to his or her surrogate and others to help ensure it will be available when needed.
5. Periodically review with the patient his or her goals, preferences and chosen decision maker, which often change over time or with changes in health status. Update the patient’s medical records accordingly when preferences have changed to ensure that these continue to reflect the individual’s current wishes. If applicable, assist the patient with updating his or her advance directive or designation of proxy forms. Involve the patient’s surrogate in these reviews whenever possible.

Opinion 2.17 - Quality of Life

In the making of decisions for the treatment of seriously disabled newborns or of other persons who are severely disabled by injury or illness, the primary consideration should be what is best for the individual patient and not the avoidance of a burden to the family or to society. Quality of life, as defined by the patient’s interests and values, is a factor to be considered in determining what is best for the individual. It is permissible to consider quality of life when deciding about life-sustaining treatment in accordance with Opinions 2.20 Withholding or Withdrawing Life-Sustaining Medical Treatment, 2.215 Treatment Decisions for Seriously Ill Newborns, and 2.22 Do-Not-Resuscitate Orders.