CGPR: What are the cardinal ethical principles in medicine?

Dr. Appelbaum: Medical ethics commonly center on four primary principles: 1) beneficence, which highlights the obligation that a physician or caregiver must do good for the person in their care; 2) nonmaleficence, which underscores the responsibility to prevent harm to the people we serve; 3) respect for persons, eg, respecting each person’s autonomy by providing necessary information for informed consent; and 4) justice, which ensures that medical benefits are distributed fairly among the population.

CGPR: Do additional ethical principles apply when working with older adults with neurocognitive disorders?

Dr. Appelbaum: While no new principles emerge, certain ethical principles become much more salient in this context. Respect for persons takes center stage, as cognitive decline challenges decisional autonomy. Older populations face unique struggles in this regard compared to younger individuals.

CGPR: What are the components of the standard approach for evaluating decision-making capacity?

Dr. Appelbaum: Determining capacity is decision-specific. A person may have capacity to make a simple medical decision but may not have capacity to consent to a high-risk treatment. The standard approach to assessing decision-making capacity is based on four components. The first is the ability to understand the relevant information for the decision, whether buying a car or undergoing surgery. The second involves the ability to appreciate the implications of that information for a patient’s own situation. For example, an individual with dementia or a psychotic disorder may comprehend the information at a fundamental level but struggle to connect it to their own situation, denying the need for treatment despite understanding the facts presented. The third is reasoning through options and the relevant considerations—for example, choosing one of three potential treatments through a more or less rational weighing of their risks and benefits. The fourth is evidencing a choice, which in many respects seems self-evident. Patients can’t make a decision if they’re comatose. It becomes more complicated when working with patients with psychotic disorders where there may be psychotic ambivalence that fluctuates. (Editor’s note: For more, see “Navigating Ethical Challenges in Geriatric Psychiatry.”)

CGPR: Yes, assessing capacity in older adults with psychosis is particularly challenging. Can you share a case that shaped your practice?

Dr. Appelbaum: I once assessed the capacity of a woman in her 70s hospitalized with breast cancer. She had a visibly neglected ulcerating lesion and adamantly denied her diagnosis. She held a delusional belief that her surgeon and nephew were conspiring to kill her during surgery and take her money. Her situation reached an impasse, with the surgical team considering sending her home without treatment due to her refusal. However, a breakthrough occurred when we discovered her strong rapport with a nurse she trusted. The nurse’s encouragement eventually led the patient to consent to surgery. From this experience, I learned that capacity assessments extend beyond determining capacity. They involve helping people navigate anxieties in medical decision making, often by involving trusted figures, whether clergy members, social workers, or in this case, a nurse.

CGPR: Do you adapt your assessment for patients with dementia?

Dr. Appelbaum: There are nuances to the evaluation of patients with dementia, but the overarching framework is the same. What tends to be different is where you look for impairments to occur. In people with neurocognitive disorders, be sensitive to their ability to understand and retain the relevant information, even over short periods of time. People with advanced dementia may not be able to access the information that they understood five minutes earlier. Listen for the extent to which they’re able to appreciate that their condition needs to be treated. Pay particular attention to their ability to reason independently, as opposed to making impulsive decisions, choosing an option simply because it was the first one presented. This can happen when a person wishes to avoid the anxiety associated with contemplating available options.

CGPR: How do you modify your questions when working with patients with dementia?

Dr. Appelbaum: Adapting to patients with dementia involves breaking down consent-related information into pieces: the nature of their condition, the nature and purpose of the treatment, and the benefits, risks, and alternatives. After each piece, I ask patients to repeat back what they understood in their own words. For assessing appreciation, I explore their beliefs, asking how they perceive their condition and their acceptance of the treatment’s potential risks and benefits. For instance, I might say “You told me your doctor said that you have pneumonia and require IV antibiotics. What do you think is happening in your lungs?” I then gauge their acceptance of the typical risks and benefits associated with the treatment, recognizing that individuals in the early stages of neurocognitive disorders may overemphasize risks. With reasoning, I encourage patients to think aloud about their treatment choice, asking them why certain factors are important and how they weigh options. I maintain an informal, common-language approach.

CGPR: Patients with executive dysfunction may perform well on memory tasks but have poor judgment. How do you gauge their capacity?

Dr. Appelbaum: In such cases, the focus of the evaluation should be on their reasoning ability. Ask them to describe their thought process, explain how they weighed various factors, and think aloud. People with executive dysfunction may struggle to respond reasonably, but you are looking for them to produce minimally adequate reasoning to justify their choice.

CGPR: Do you use supplementary screeners like the Montreal Cognitive Assessment (MoCA) to help assess capacity?

Dr. Appelbaum: Standardized instruments like the Mini-Mental State Examination (MMSE) or the MoCA have limited utility in these circumstances. High scores typically indicate sufficient capacity, while low scores indicate significant impairment—both of which will usually be evident clinically. The middle range (eg, 18–25 on the MMSE) correlates with challenging cases, and screeners don’t provide much additional information (Gregory R et al, Age Ageing 2007;36(5):527–531).

CGPR: Navigating decisional capacity on a sliding scale, which varies with the seriousness of medical procedures, can be complex. Could you provide insights into your strategy for managing this variability?

Dr. Appelbaum: The sliding scale approach, while widely accepted, can raise ethical concerns when different thresholds are applied based on the patient’s choice. For instance, refusing life-saving treatment may require a higher threshold of capacity than accepting the same treatment. Courts often manage cases this way, seeking more certainty for specific situations and allowing more leeway for others, aligning with practical considerations.

CGPR: When dealing with lower-risk procedures and using a lower threshold for capacity, how do you approach ­documentation?

Dr. Appelbaum: Documentation of the assessment of decisional capacity doesn’t have to be extensive. A few sentences suffice: “I met with Mr. Smith this morning. We discussed the proposed treatments, their risks and benefits, and his alternatives. He displayed a good understanding of the treatment, appreciated its necessity, and made an informed choice based on reasonable concerns.” This documentation remains consistent whether dealing with a risky or less risky choice. What’s required for adequate decisional capacity may slide up and down a scale, but if the patient hits the point they must hit, they have adequate decisional capacity.

CGPR: Could you share your insights regarding capacity to consent to electroconvulsive therapy (ECT), a treatment often met with capacity-related challenges for older adults?

Dr. Appelbaum: ECT poses unique challenges due to varying legal requirements across jurisdictions. While patients with decision-making capacity have the right to consent to or refuse ECT, determining who can consent on behalf of patients lacking capacity or exhibiting significant impairment is less straightforward. In nonpsychiatric settings, family medical decision-making laws in most states establish a hierarchy of decision makers based on their relationship with the patient. In psychiatry, however, the situation is more complex and jurisdiction dependent. In many cases, ECT has been singled out as an “extraordinary treatment,” a term occasionally used in legal contexts, and it has to be dealt with differently. Certain states mandate judicial approval for ECT in cases involving patients who lack decision-making capacity, even if the patient consents to treatment. Guardians are required in other states, but their consent often requires judicial authorization. These nuances can unsettle ECT units, especially when jurisdictional stances are unclear. Discussions with the medical team administering ECT can clarify the patient’s capacity, and if necessary, you can perform a bedside capacity evaluation as a group.

CGPR: Another treatment that often leads to conflict is the use of antipsychotics for agitation in people with dementia, given the black box warning. Which ethical principles are in conflict here?

Dr. Appelbaum: The ethical dilemma at the heart of this issue is starkly between the principles of beneficence and nonmaleficence. The black box warning highlights substantial evidence suggesting that, as a group, older adults with dementia given antipsychotic medications are more likely to experience bad outcomes, including death (Mok PLH et al, BMJ 2024;385:e076268). However, the complexity arises when considering individual cases. In some instances, older adults with severe agitation unresponsive to other interventions may benefit from antipsychotics, potentially preventing life-threatening situations and ensuring safety for themselves and others. The challenge is finding the right balance between these ethical principles. Additionally, many facilities that care for older people with dementia may lack the resources and trained staff to explore nonmedication interventions effectively. Consequently, antipsychotic prescriptions are sometimes used as a first-line option when they should be reserved as a last resort.

CGPR: How can clinicians facilitate dialogue when two family members are in conflict about a patient’s treatment?

Dr. Appelbaum: Don’t underestimate the value of bringing conflicted family members together for a conversation. I liken this approach to couples therapy, especially when dealing with siblings who hold differing views on important decisions, such as when it’s time to make difficult choices regarding a parent’s care. First acknowledge the validity of each perspective. The person doing this mediation needs to be perceived as a neutral party, guiding the conversation toward addressing underlying emotions and issues. Encourage the open expression of feelings, including grief, anger, and jealousy, when dealing with complex family situations.

CGPR: When should clinicians consider an ethics consult?

Dr. Appelbaum: Calling for an ethics consult is advisable at the first signs of tension between the clinical team and decision makers, as early intervention can prevent physician entrenchment and legal disputes. It is especially useful with complex ethical dilemmas, such as end-of-life decisions in jurisdictions permitting medical aid in dying, where an ethics consult can help navigate these sensitive matters and reach a consensus. Ethics consultants play an interesting variety of roles. They can assist in addressing ethical dilemmas, but often their value lies in their role as impartial mediators. They can facilitate discussions between clinical teams and patients’ families, offering fresh perspectives and highlighting unconsidered aspects. By framing issues as ethical challenges rather than conflicts of right and wrong, they can defuse tension and foster understanding. This can help settle what feels like a personal assault on the clinician when the family says, for example, “Don’t touch our grandmother.” Consultants can also keep family members from feeling as though they’re being dismissed by the clinical team because their very strong views are discounted.

CGPR: Are there resources for clinicians looking to enhance their understanding of ethical principles and the care of older adults?

Dr. Appelbaum: Certainly. Several years ago, my colleague Tom Grisso and I co-authored a book on this topic that I’m happy to recommend. Titled Assessing Competence to Consent to Treatment, the book delves into both the substantive and the procedural aspects of evaluating decisional capacity. It emphasizes that the assessment process goes beyond a binary determination of competence, providing insights into how clinicians can assist patients in navigating challenging situations.

CGPR: Thank you for your time, Dr. Appelbaum.