Ethics

Caring for patients at the end of life

Updated April 8, 2020

Caring for patients at the end of life is a privilege that draws deeply on physicians’ commitment to alleviate suffering. The fact that crisis standards of care have been invoked during a pandemic outbreak should not obscure the importance of ensuring that every patient reaching the end of life receives appropriate supportive care.

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The AMA Code of Medical Ethics addresses key issues at the end of life in:

  • Opinion 5.3, Withholding or Withdrawing Life-Sustaining Treatment
  • Opinion 5.5, Medically Ineffective Interventions
  • Opinion 5.6, Sedation to Unconsciousness in End-of-Life Care

Opinion 5.3 recognizes that decisions to withhold or withdrawn life-sustaining interventions can be ethically and emotionally challenging for everyone involved. It reminds physicians that patients who have decision-making capacity have the right to knowingly decline life-saving care even against the physician’s recommendations. When patients are not able to participate in decision making, their surrogates may make such decisions on their behalf.

Ideally, patients will have discussed their preferences and goals for care with their physicians (and surrogates) before a decision needs urgently to be made. When a patient has an advance directive, the preferences set out in the directive should govern care decisions.

Often, however, patients have not given much thought to what care they will or will not want at the end of life. In such cases, physicians should “elicit the patient’s values, goals for care, and treatment preferences” and capture those preferences in the medical record.

A decision to withhold or withdraw life-sustaining treatment is not a decision to withhold or withdraw care entirely. Opinion 5.2 requires that physicians “[re]eassure the patient and/or surrogate that all other medically appropriate care will be provided, including aggressive palliative care, appropriate symptom management if that is what the patient wishes.”

When it proves impossible to adequately manage symptoms despite vigorous palliative care efforts, for some terminally ill patients an option of last resort is sedation to unconsciousness. Opinion 5.6, “Sedation to Unconsciousness in End of Life Care,” directs physicians to reserve this option “to patients in the final stages of terminal illness,” and to ensure that options for appropriate, symptom-specific palliative care have been exhausted, ideally in consultation with a multi-specialty team. The patient, or surrogate, must give informed consent before sedation is administered and the decision appropriately recorded in the medical record.

For guidance on surrogate decision making, advance care planning, and the use of advance directives, see Opinion 2.1.2, “Decisions for Adult Patients Who Lack Capacity,” Opinion 5.1, “Advance Care Planning,” and Opinion 5.2, “Advance Directives,” respectively.

Additional ethics guidance in a pandemic