Decision capacity focuses on an individual’s ability to make decisions for themselves. Determining an individual’s capacity is based on criteria of understanding, appreciation, reasoning, and expression of choice. The Oxford Journals Archives of Clinical Neuropsychology provides the following perspective, “The key point is that healthcare decision-making capacity is an inherently context-specific construct referring to the individual's capacity to make a choice about the specific decision at hand…Thus, assessment of consent capacity is ideally conducted within the context of the actual decision the individual is being asked to make.”
Patients with an impaired capacity may mean a proxy decision maker needs to be introduced; another individual who considers a patient's best interests with privacy and security considerations. All of these factors are factors to consider when accessing capacity and understanding the larger context of data privacy and informed consent.
What is capacity?
Capacity in healthcare refers to a patient’s ability to make informed decisions about their medical care, balancing autonomy with safety. Unlike legal competence (a court-determined status), clinical capacity is a medical judgment assessed by healthcare providers for each specific decision. For example, a patient with mild dementia might retain the capacity to consent to routine bloodwork but lack it for complex surgical decisions.
According to Dr. T.M Pope from the Mitchell Hamline School of Law, “Clinical incapacity to make health care decisions is the medical judgment of a qualified doctor or other health care professional who determines a person is unable to do the following: Understand his or her medical condition or the significant benefits and harms of the proposed treatment and its alternatives; Make or communicate appropriate medical decisions. Like legal capacity, clinical capacity is specific to a particular health care decision and is limited to that decision.”
The four-component model operationalizes capacity:
- Understanding: Grasping the nature of their condition and treatment options.
- Appreciation: Recognizing how choices affect their life.
- Reasoning: Evaluating benefits/risks logically.
- Expression: Communicating preferences.
Capacity assessments address medical factors (e.g., delirium, medication effects), functional abilities (cognitive deficits), and environmental influences (stress, isolation). Clinicians use structured tools like the Aid to Capacity Evaluation (ACE) to systematically evaluate these elements.
Capacity is decision-specific and context-dependent, meaning patients may retain it for low-risk choices (e.g., pain management) but lack it for high-stakes decisions (e.g., clinical trials). It prevents overreach while protecting vulnerable populations. Without capacity assessments, providers risk violating autonomy by overriding valid preferences or exposing patients to harm by honoring uninformed choices.
ACE evaluation of the capacity elements
The ACE is a structured clinical tool designed to systematically assess a patient’s decision-making capacity in healthcare settings. It uses open-ended questions and scenario-specific prompts to assess two dimensions of capacity:
- Understanding: Can the patient grasp their medical condition, proposed treatments, alternatives, risks, and benefits? For example, a clinician might ask, “Why are you in the hospital?” or “What problem is bothering you most?” to gauge comprehension.
- Appreciation: Does the patient recognize how their decision applies to their circumstances? For instance, a diabetic patient refusing amputation might be asked to explain how their choice affects their mobility or survival.
Clinicians must first address communication barriers (e.g., hearing loss, language differences) and disclose all treatment-related information a “reasonable person” would need. The process is iterative: if a patient initially fails to appreciate the consequences, the clinician re-explains the information and reassesses.
Why it matters
According to the AMA Journal of Ethics' opinions on patient's decision-making capacity, “Generally, patients are free to exercise their autonomy in making decisions about their health care. However, patients can only do so if they are given information about and understand the risks and benefits of a specific treatment and can apply this information to their health.”
Healthcare ethics prioritize patient autonomy, but this principle hinges on capacity. Without the ability to understand treatment options, appreciate their consequences, reason through alternatives, and express choices, consent becomes invalid. For example, a patient with untreated delirium agreeing to chemotherapy without grasping survival rates or side effects cannot make an informed decision, rendering their consent ethically and legally questionable. Capacity assessments prevent paternalistic overrides of valid preferences while protecting vulnerable individuals from exploitation or self-harm.
The legislative reality of capacity and data privacy in healthcare
Federal legislation like the Patients Self Determination Act requires hospitals to inform patients about advance directives that designate surrogates for future capacity. There is room in the Act for deferment to states in certain cases.
Data privacy protections are generally fragmented. HIPAA governs health data sharing but does not address capacity directly; patients with capacity can authorize disclosures, while surrogates inherit this authority if incapacity is confirmed. State variability further complicates data access for surrogates, creating inconsistencies in multi-state care. In emergencies, most states rely on the doctrine of implied consent (assuming a reasonable person would consent to life-saving treatment).
The role of communication in data capacity
Capacity assessments depend on a patient’s ability to understand treatment options, appreciate their consequences, reason through alternatives, and communicate preferences. Patients with limited health literacy (LHL) or cognitive impairments may struggle to process complex medical jargon, leading to misunderstandings that undermine capacity. Effective communication helps tailor information to the patient’s needs, such as using plain language, visual aids, or interpreters to clarify risks/benefits.
Diverse communication forms, email, in-person discussions, text messaging, and calls, improve decision-making capacity by addressing individual preferences, access barriers, and cognitive limitations. In-person communication allows HCPs to gauge nonverbal cues (e.g., confusion, distress) and adjust explanations dynamically. HIPAA compliant email or HIPAA compliant text messaging provides patients with time to review information at their own pace.
Calls allow for clarification of questions, while visual aids (e.g., diagrams, and videos) simplify complex concepts like treatment outcomes. By combining these methods, HCPs can accommodate diverse learning styles like using audio recordings for patients with hearing loss or translated materials for non-English speakers. The approach aligns with shared decision-making (SDM) principles. A PLoS One study states, “LHL could lead to adverse health outcomes, LHL patients spend more time in hospital and have lower adherence to medication and treatment. It also complicates communication which reduces the possibility for SDM. Patients with LHL participate less in SDM with their HCPs compared to health literate patients.”
FAQs
How often should capacity be reassessed?
Capacity is time-specific and may fluctuate. Clinicians must reassess capacity if the patient’s condition changes or if decisions are delayed.
What happens if a patient lacks capacity?
If a patient lacks capacity, decisions are made by a substitute decision-maker (e.g., spouse, adult child) who must act in the patient’s best interests or follow advance directives (e.g., living wills).
Can patients regain capacity?
Yes. Patients may regain capacity if underlying causes (e.g., delirium, medication effects) are resolved. Clinicians must document regained capacity to restore autonomy.
What is the role of advance directives in capacity?
Advance directives (e.g., living wills) outline a patient’s preferences for future care if they lose capacity. Clinicians must honor these unless they conflict with the patient’s current well-being.
How should clinicians document capacity assessments?
Capacity determinations must be documented clearly in the patient’s chart, including:
- Reasons for the assessment (e.g., refusal of life-saving treatment).
- Steps taken to address barriers (e.g., interpreters, simplified explanations).
- Patient responses to questions about understanding, appreciation, and reasoning.
Kirsten Peremore
