What Does It Mean for My Patient to Have Decision-Making Capacity?

“The patient wants to leave. Can you please come and have them sign the AMA form?”

Many of us who work in the hospital, especially the emergency department, have been asked this question — typically when we're in the middle of doing something else. Often, these patients are challenging to manage, so we print the paperwork in relief and, after a cursory conversation, document the EMR with a quick text "AMA discharge" to cover our bases.

How well do we identify incapacity in our patients? 
Roughly 1 in 4 hospitalized patients lack decision-making capacity¹ and clinicians recognize incapacity in less than 50% of affected patients.²

How are medical trainees trained to perform decision-making capacity assessments (DMCAs)?
Often, this concept is taught briefly during an introductory ethics course (as capacity is fundamental to the concept of informed consent) or within the psychiatry clerkship of medical school. There are sparse published examples of attempts at educational interventions to help improve this knowledge deficit. Most initiatives develop within the psychiatry department of various institutions, and many demonstrate that direct teaching about capacity improves clinician knowledge base and confidence,^3-5 but there is no standardized way of teaching or testing on this topic. 

Who should be doing DMCAs?
All too often, we inappropriately rely on our psychiatry colleagues to perform capacity assessments on our patients.⁴ All physicians are capable of performing capacity assessments; therefore, rarely should a psychiatry consult be required except in circumstances of underlying psychiatric disease.⁸

When did the concept of decision-making capacity emerge, and what were its legal and historical origins?
The idea of informed consent for procedures emerged just over a century ago (1914 in Schloendorff vs. Society of New York Hospital).^7,18 The plaintiff, Mary Schloendorff, lost the case she brought against the hospital where she had endured physical damages, including the loss of an arm and fingers due to gangrene related to a brachial embolism. She attributed these damages to a surgery — removal of a pelvic tumor — for which she had not consented; she believed she was having an "ether exam" and claimed to have said she did not want surgery.⁷

The reasons she lost the case had almost nothing to do with the concept of informed consent and instead relied on the physician-hospital relationship. Physicians were deemed to be independent contractors, making the hospital “immune from any damages as a result of the alleged negligence or potential battery of the physicians, surgeons, and other hospital personnel.”⁷

Within the opinion of the court, written by Justice Benjamin Cardozo, we find the beginning of a legal basis for informed consent: “Every human being of adult years and sound mind has the right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent, commits an assault, for which he is liable in damages … except in cases of emergency where the patient is unconscious and where it is necessary to operate before consent can be obtained.”⁷

Evolving from the idea of informed consent, decision-making capacity has been developed as a concept with legal origins that were first broadly shared by Dr. Paul Appelbaum, which listed the legally relevant criteria including both the patient’s tasks and questions to guide the physician's assessment approach.¹

Capacity is not the same as competency.
Capacity is a clinical evaluation performed by all clinicians (not just psychiatrists). Competence is a court determination made by a judge.⁸ These words are not interchangeable, although up until about 2010, they were used interchangeably in the literature; even the influential article by Dr. Appelbaum is titled Assessment of Patients’ Competence to Consent to Treatment.¹ The two words represent different concepts, and the difference is important. Some patients who are legally incompetent may still have capacity to make a particular health care decision.⁸ Usually, an ethics consult is warranted in these circumstances.^8-9

When should I perform a DMCA on my patient?
Usually, the assessment is implicit, and we assume capacity in our patients "in the absence of a reason to question a patient's decision-making."¹ Common triggers for a DMCA include:¹⁷

• Refusal of care
• Emotional outbursts
• Seemingly irrational decisions
• Intoxication
• Delirium
• Dementia
• Psychosis

This means that any against medical advice (AMA) discharge warrants a good-faith effort to perform a DMCA using the above criteria.

DMCAs should be decision-specific and dynamic.
Capacity for decision-making is both dynamic and relevant to individual choices and does not constitute a static ability for all decision-making.^8,12 Capacity assessments should be performed in the context of an actual decision (or related set of decisions) being made. Health care decision-making capacity is inherently context-specific.^1,12 A patient’s capacity to decline acetaminophen, which requires limited medical understanding and has fewer risks, may be different from their capacity to decline an abdominal aortic aneurysm repair, which requires more complex medical understanding and has serious risks. This reflects the effort, in all capacity assessments, to preserve autonomy and uphold beneficence. A term for this concept is the sliding scale principle of capacity,¹⁷ which means the stringency of criteria for capacity should vary with seriousness of disease and urgency for treatment.¹ This concept has been controversial but has been endorsed by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Behavioral Research and “reflects how courts actually deal with these cases.”¹

What does a DMCA entail?
The 4 abilities model of capacity introduced by Appelbaum borrows the criteria from legal origins and includes:^8-10,17

1. Understanding
2. Appreciation
3. Reasoning
4. Ability to communicate a choice

• UNDERSTANDING: Does this patient understand the relevant medical information being discussed, including the risks and benefits of refusing/accepting the recommended option? Use an interpreter. Use visual aids when helpful. Make sure hearing aids are present if needed. Avoid jargon. Adjust language to be appropriate to a person’s age and degree of education.
  • A good test of this is: Can the patient summarize in their own words what has been discussed?

• APPRECIATION: Does this patient appreciate how the choice might affect them personally? This is one of the more difficult abilities to assess because it requires genuine attempts at understanding where your patient is coming from.
  • A good test of this is: Can the patient appreciate how this choice will affect them personally? ¹⁷ Does the patient have a history of choices that align with their stated goals and values? If so, does this choice make sense in that patient's historical decision-making?

• REASONING: Is there any evidence of a reasoning process behind the patient’s decision?  This is also one of the more difficult abilities to assess. Can logical weighing of risks and benefits be demonstrated?
  • Acknowledge that irrational decisions aren't necessarily unreasonable in the context of an individual’s life and personal values/goals, but often in complex cases, a psychiatrist and/or ethicist can be helpful.

• COMMUNICATION: Is the patient able to communicate a choice? Ensure that the patient has been set up for success here by maximizing their potential in choosing the time and context to perform the assessment.
  • Is their decision vacillating or remaining reasonably consistent over time?

What tools are available to help with DMCAs?
Tools that have been validated to help in these DMCAs include the open-access, Canadian-developed Aid to Capacity Evaluation (ACE),^11,12 which prompts the clinician to ask particular questions and attempts a scoring system to help clinicians objectively assess their patients. This tool can be found by simply typing "ACE" into your web browser search bar. Another tool is the MacArthur Competence Assessment Tool,¹³ which is not free and requires training to use. This tool has become the gold standard for capacity assessments and is useful in particularly complex cases.¹²

What about confounders like intoxication, psychiatric illness, delirium, and dementia?
The sliding scale principle applies in these scenarios as well. The degree of intoxication and seriousness of the condition both influence the determination of capacity here.¹⁷ Refusing repair of superficial laceration is different from refusing evaluation for a head bleed if the patient incurred significant trauma in a high-mechanism MVC.¹⁷ It is also feasible that a patient with delirium can have capacity for a certain decision if, during lucid periods, they consistently demonstrate the 4 components previously mentioned. Similarly, patients with underlying psychiatric illness can retain decision-making capacity for certain decisions at different time points within the fluctuations of their disease.⁸ For the above scenarios, poor insight, as assessed by the "appreciation" component of the DMCA, is often the strongest predictor of a potential lack of capacity.¹⁷

What about surrogate decision-makers? 
When someone is determined to not have capacity for a certain decision (or set of decisions), we look to someone else to decide on their behalf. Predetermined health care proxies are the best-case scenario here.¹⁷ Importantly, patients can be deemed to have incapacity for a medical decision but still may be able to tell us whom they want as their health care proxy if they are able to provide a reasoning process and communicate a choice.¹⁵

Our Duty to Communicate
We are often biased by our personal feelings for a patient when it comes to how much time and effort we put into communicating with them, and more often than not, when a patient refuses care, the problem is not a failure of the patient's capacity, but of our capacity for communicating and connecting with them.

"We are obligated to do our best (without coercion) to help patients overcome their reluctance to accept care that is in their best interest. Only by talking to them, to find out what their concerns are and to respond to these concerns, can we do this. Even with patients who lack capacity and will not be allowed to refuse care, such communication is important because it may help us devise a plan with which the patient will cooperate, such cooperation being ethically and technically preferable to struggling with a combative patient."¹⁶

When we determine a patient to lack capacity, our responsibility to protect them from harms related to restraint must become a priority, and our EDs should have a systematic approach to the safe restraint of patients.¹⁴

Our responsibility to attempt therapeutic relationships and try to understand where our patients are coming from is not "window dressing." Capacity assessments often, but not always, appear at moments of disconnection with patients and caregivers. If in these moments, the reflexive question, often in defense of the patient’s well-being, for most of us is, "Does this patient have capacity for making this decision right now?", then we are at least on the right track.

Further Reading

• Ganzini L, Volicer L, Nelson WA, Fox E, Derse AR. Ten myths about decision-making. J Am Med Dir Assoc. 2004;5:263-267.
• Blank A. Respecting the autonomy of irrational patients. Arch Intern Med. 2005;165(5):590.
• Marco CA, Brenner JM, Kraus CK, McGrath NA, Derse AR, ACEP Ethics Committee. Refusal of emergency medical treatment: Case studies and ethical foundations. Ann Emerg Med. 2017;70(5):696-703.
• Libby C, Wojahn A, Nicolini JR, Gillette G. Competency and capacity. StatPearls. 2022.
• Palmer BW, Harmell AL. Assessment of health care decision-making capacity. Arch Clin Neuropsychol. 2016;31(6):530-540.

References 

1. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357:1834-1840.
2. Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-427.
3. Charles L, Bremault-Phillips S, Pike A, et al. Decision-making capacity assessment education. J Am Geriatr Soc. 2021;69(4):E9-E12.
4. Chaffkin J, Wasser T. The impact of teaching internal medicine residents about decision-making capacity. Acad Psychiatry. 2020;44(3):340-343.
5. Frank A. Evaluating decision-making capacity: An introductory curriculum for medical students and residents. MedEdPORTAL. 2015;11:10060.
6. Marco CA, Derse AR, Kaczander K. Emergency medicine specialty reports: Informed consent for emergency procedures. Relias Media. June 26, 2005.
7. Chervenak FA, McCullough LB, Chervenak J. Perils of miscommunication: The beginnings of informed consent. J Ultrasound Obstet Gynecol. 2016;10(2):125-130.
8. Konerman-Sease J. Demystifying Decision-Making Capacity [part of a professional development series called: “Unpacking Bedside Bioethics.”] University of Minnesota Center for Bioethics. May 2022.
9. Berghmans RLP, Widdershoven GAM. Ethical perspective on decision-making capacity and consent for treatment and research. Medicine and Law. 2003;22(3):391-400.
10. Karel MJ, Gurrera RJ, Hicken B, Moye J. Reasoning in the capacity to make medical decisions: The consideration of values. J Clin Ethics. 2010;21(1):58-71.
11. Etchells E. Aid to Capacity Evaluation. Accessed via Canadian Medical Protective Association.
12. Etchells E, Sharpe G, Elliott C, Singer PA. Bioethics for clinicians: 3. Capacity. CMAJ. 1996;155(6):657-661.
13. Grisso T, Appelbaum PS, Hill-Fotouhi C. The MacCAT-T: A clinical tool to assess patients’ capacities to make treatment decisions. Psychiatr Serv. 1997;48(11):1415-1419.
14. Thomas J, Moore G. Medical-legal issues in the agitated patient: Cases and caveats. West J Emerg Med. 2013;14(5):559-565.
15. Schweikart SJ. Who makes decisions for incapacitated patients who have no surrogate or advance directive? AMA J Ethics. 2019;21(7):E587-E593.
16. Simon JR. Refusal of care: The physician-patient relationship and decision-making capacity. Ann Emerg Med. 2007;50(4):456-461.
17. Edwards FJ. The capacity conundrum in emergency medicine. Relias Media. Sept. 1, 2019.
18. Derse, A. The Physician-Patient Relationship. N Engl J Med. 2022; 387:669-672.