Assessing Patient Decision-Making Capacity in Clinical Practice
Margaret A. Fitzgerald, DNP, FNP-BC, NP-C, FAANP, CSP, FAAN, DCC, FNAP
I understand that a patient must be considered capable of making decisions in order for informed consent to be valid. How do I determine whether a patient has the ability to make an informed decision in daily clinical practice?
Respect for a patient’s right to make autonomous choices regarding his or her healthcare is a fundamental ethical principle underlying all healthcare interactions between clinician and patient. Clinicians show respect for autonomy by obtaining informed consent, whereby the patient makes an autonomous decision to undergo or forgo a procedure or treatment or to take part in research. For informed consent to be valid, the patient must have the ability to make healthcare decisions, a concept known as decision-making capacity.1 Because the clinician’s assessment of decision-making capacity has important ethical implications for a patient’s self-determination—that is, what role the patient will play in making choices about his or her own health care—all clinicians should have a good understanding of decision-making capacity and how to assess it.
What is capacity and how is it assessed?
Decision-making capacity is a functional assessment and a clinical determination made by a clinician regarding whether a patient possesses the ability to make informed decisions about his or her healthcare. It differs from competence, which is a legal concept that can be formally determined only by a judge in court.
Four abilities are commonly assessed when determining decision-making capacity: the ability to receive, process, and understand the relevant information; to appreciate the situation and its consequences; to rationally process the information; and to express a choice.1,2
This is assessed by asking a patient to explain in his or her own words an understanding of their condition, what the treatment or diagnostic test involves, including the recommended intervention, its potential risks and benefits, the probability that treatment will be successful, other possible treatments, and the potential risks and benefits of forgoing treatment.1,3
The ability of a patient to appreciate how the information provided by the clinician applies to her situation is assessed by asking what she really believes about her medical condition, why the clinician has recommended the intervention, whether she believes she needs the recommended intervention, what she thinks will happen if she forgoes the intervention, and why the clinician has recommended the intervention.1,3
A patient’s ability to rationally consider the information provided by the clinician can be determined by asking how he made his choice to accept or reject treatment, what factors he considered in making his choice, and how he balanced the various factors when making his decision.1
Express a Choice
The ability to express a choice can be assessed by asking the patient to indicate her decision on whether to proceed with the suggested treatment.1 This decision should be relatively stable over time, but changing this decision does not necessarily indicate compromised decision-making capacity as long as the patient can explain the rationale for the change.2
Does This Patient Have the Capacity to Decide Against Treatment?
Four abilities are commonly assessed when determining decision-making capacity:
- the ability to receive, process, and understand the relevant information;
- the ability to express a choice;
- the ability to appreciate the situation and its consequences; and
- the ability to rationally process the information.
A 90-year-old woman with moderate dementia, heart failure, and chronic renal insufficiency presented with newonset weakness. Further evaluation revealed marked hyper kalemia (eGFR = 22 mL/min/1.73 m2).
A nephrologist recommended the patient receive hemodialysis. When discussing this option with the patient, she declined the treatment. When asked why she does not want dialysis, she stated, “I do not want to be on a machine. I am quite old and my health is not good.” The patient was asked what she believed would happen if she did not have dialysis. She stated, “I guess I will die. That is OK.”
In addition to the clinical assessment, a formal assessment was performed because of the patient’s moderate dementia. Several instruments were used to conduct a structured assessment, including the Capacity to Consent to Treatment Instrument (CCTI). During the formal assessment, the patient inaccurately reported the current year, her location, and the name of the president of the United States.
From the information provided, does this patient have the capacity to decide against dialysis?
This patient does have the capacity to decide against dialysis. The patient understood why she needed dialysis, clearly stated why she did not want dialysis, and understood the consequences of not having it.
When is assessment necessary?
In practice, clinicians assume that adults are capable of making decisions unless there is substantial evidence suggesting otherwise. Decision-making capacity must be more carefully assessed whenever a patient undergoes a hospital or outpatient procedure and for routine care when there are strong reasons to question a patient’s decision-making ability. A number of conditions can compromise decision-making capacity, including delirium, dementia, psychiatric disorders, trauma, pain, medication effects, and intoxication.4 A patient’s capacity to make healthcare decisions can fluctuate over time, depending on his health status and other factors, and should be assessed more than one time. When a patient’s lack of capacity is considered to be temporary, periodic reassessments should be conducted and important decisions should be delayed, if possible, while the underlying illness is being treated.1 At the same time, a patient who is disoriented to time or location is often still capable of making an informed decision if he or she can demonstrate the four abilities outlined here. When delay is not possible, a surrogate decision-maker should be selected, with the patient’s authority for decision-making restored once he or she recovers.
When is a formal assessment recommended?
In most cases, it is sufficient for clinicians to understand the four components of decision-making capacity and be able perform a directed clinical interview regarding them. Use of a formal assessment tool, in addition to the clinical assessment, should be considered when capacity is uncertain, surrogate decision-makers do not agree, or judicial involvement is anticipated.3 Several instruments that have been used for conducting structured assessment include the MacArthur Competence Assessment Tools for Treatment (MacCAT-T)5 and the Capacity to Consent to Treatment Instrument (CCTI).6
Clinicians must thoroughly document in the patient record the details from the assessment interview and the reasoning underlying their final determination regarding capacity. Documentation should include a short summary of the questions asked as well as the patient’s answers and decision.4 Any formal assessment tools used should also be recorded.
When a patient is found to lack capacity for making decisions, a surrogate decision-maker must be identified. Resources that can be used when addressing the issue of surrogacy include existing advance directives and healthcare proxies, such as durable power of attorney for family members.2