Back to Chapter 2 Consent, Communication & Decision Making
Opinion 2.1.2

Decisions for Adult Patients Who Lack Capacity

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Respect for patient autonomy is central to professional ethics and physicians should involve patients in health care decisions commensurate with the patient’s decision-making capacity. Even when a medical condition or disorder impairs a patient’s decision-making capacity, the patient may still be able to participate in some aspects of decision making. Physicians should engage patients whose capacity is impaired in decisions involving their own care to the greatest extent possible, including when the patient has previously designated a surrogate to make decisions on his or her behalf.

When a patient lacks decision-making capacity, the physician has an ethical responsibility to:

  1. Identify an appropriate surrogate to make decisions on the patient’s behalf:
    1. the person the patient designated as surrogate through a durable power of attorney for health care or other mechanism;
    2. a family member or other intimate associate, in keeping with applicable law and policy if the patient has not previously designated a surrogate.
  2. Recognize that the patient’s surrogate is entitled to the same respect as the patient.
  3. Provide advice, guidance, and support to the surrogate.
  4. Assist the surrogate to make decisions in keeping with the standard of substituted judgment, basing decisions on:
    1. the patient’s preferences (if any) as expressed in an advance directive or as documented in the medical record;
    2. the patient’s views about life and how it should be lived;
    3. how the patient constructed his or her life story;
    4. the patient’s attitudes toward sickness, suffering, and certain medical procedures.
  5. Assist the surrogate to make decisions in keeping with the best interest standard when the patient’s preferences and values are not known and cannot reasonably be inferred, such as when the patient has not previously expressed preferences or has never had decision-making capacity. Best interest decisions should be based on:
    1. the pain and suffering associated with the intervention;
    2. the degree of and potential for benefit;
    3. impairments that may result from the intervention;
    4. quality of life as experienced by the patient.
  6. Consult an ethics committee or other institutional resource when:
    1. no surrogate is available or there is ongoing disagreement about who is the appropriate surrogate;
    2. ongoing disagreement about a treatment decision cannot be resolved; or
    3. the physician judges that the surrogate’s decision:
      1. is clearly not what the patient would have decided when the patient’s preferences are known or can be inferred;
      2. could not reasonably be judged to be in the patient’s best interest;
      3. primarily serves the interests of the surrogate or other third party rather than the patient.
AMA Principles of Medical Ethics: I, III, VIII
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Informed consent to medical treatment is fundamental in both ethics and law. Patients have the right to receive information and ask questions about recommended treatments so that they can make well-considered decisions about care.
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A patient who has decision-making capacity appropriate to the decision at hand has the right to decline or halt any medical intervention even when that decision is expected to lead to his or her death, When a patient lacks appropriate capacity, the patient’s surrogate may halt or decline any intervention. There is no ethical difference between withholding and withdrawing treatment. When an intervention no longer helps to achieve the patient’s goals for care or desired quality of life, it is ethically appropriate for physicians to withdraw it.
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Orders not to attempt resuscitation (DNAR orders) direct the health care team to withhold resuscitative measures in accord with a patient’s wishes. Physicians should address the potential need for resuscitation early in the patient’s course of care, while the patient has decision-making capacity, and should encourage the patient to include his or her chosen surrogate in the conversation.
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Sedation to Unconsciousness in End-of-Life Care

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