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Caring for patients unable to make medical decisions
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Have you ever had a patient who did not have capacity to make medical decisions? These are vulnerable patients who have impairments and disabilities caused by medical or psychiatric conditions. In patients with cancer, this can be particularly challenging because they may have impaired capacity caused by their cancer or adverse effects of treatment. Many treatments are longitudinal and require active participation from the patient, which becomes complicated if a patient’s decision-making capacity changes. It can also be challenging to enroll patients in research who cannot participate in the informed-consent process.
A determination of competence is made in a court of law, but medical decision-making capacity is frequently assessed by physicians. We often do this inherently as we care for patients and discuss with them diagnoses and treatment plans; this reflects the law’s standards, as well, to presume first that patients have the ability to make decisions. To remove this right from a patient requires a thorough evaluation.
In a landmark 1988 article in The New England Journal of Medicine, Appelbaum and Grisso outlined the legal standards for competence, which are still used today. These serve as the primary guidelines in assessing capacity. These four components include the ability to understand relevant information; appreciate its implications for the specific situation; reason using the information; and communicate a choice.
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To demonstrate understanding of relevant information, a patient must be able to remember the information given to him and explain the risks and benefits of a certain treatment decision. It is often helpful to ask the patient to explain in his own words what information he heard.
The next step is for the patient to apply that information to his own situation. This is the ability to appreciate the implications of that information for his future. The patient should be able to acknowledge and express understanding of the illness, evaluate the effects of the illness and various treatment options, and note the probabilities of risks and benefits.
How does a patient demonstrate an ability to reason? It helps to ask the patient to explain how he is thinking through the decision. Can he manipulate the information given to compare the risks and benefits of different options? The emphasis here is on the decision-making process and assessing its rationality, but not necessarily the rationality of the final decision itself. In this manner, a patient may make a decision that a physician does not recommend, but that patient is still permitted to make that decision.
The communication of the decision is often taken for granted, but this is an important component. It includes the stability of a patient’s choices. Although a patient certainly has the right to change his decision, repeated reversals of the decision suggest some impairment of his decision-making capacity and must be evaluated more closely.
If you determine that a patient does not have sound decision-making capacity, what then? More and more patients have completed an advance directive, which can designate a legal surrogate decision-maker and outline treatment choices. If an advance directive does not exist, often a family member can be designated as a surrogate decision-maker; although this surrogate does not have to be a family member, state laws vary as to the hierarchy of decision-makers. To consent for research, federal regulations allow “legally authorized representatives” to consent on behalf of patients who lack decision-making capacity, but again, the definition of who can be this “authorized representative” is left up to individual states.
When there are questions about a patient’s decision-making capacity, multiple resources may be used before having to escalate to the legal system. In terms of validated tools, the MacArthur Competence Assessment Tool is the most widely used, both for treatment and research. Psychiatric and/or neuropsychiatric consultation can be helpful in obtaining a more extensive evaluation. In some institutions, clinical bioethics consultation may be indicated to assist in a capacity evaluation, as well as in situations when it is unclear who an appropriate surrogate decision-maker would be.
Stephanie Harman, MD, is a palliative care physician at Stanford University Medical Center and director of its inpatient palliative care service.
For more information:
- Appelbaum PS. N Engl J Med. 1988;319:1635-1638.
- Appelbaum PS. Curr Neurol Neurosci Rep. 2010;10:367-373.
- Cassarett DJ. J Pain Symptom Manage. 2003;26:615-624.
Disclosure: Dr. Harman reports no relevant financial disclosures.