Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although she was inconsistently oriented to self, time, and place, she reiterated the same decision across multiple discussions: She did not want the PEG tube. Her replies to what would happen if she didn’t have the procedure and continued not to eat were consistent, too: “I’ll wither away.”
Ms. F. had impaired cognition. Do these impairments mean her clinicians should over-rule her choice? What evidence indicates whether she lacks decision-making capacity? This case of a patient refusing a potentially life-saving procedure amplifies the importance of asking these questions and integrating capacity assessments into clinical care. In this article, we will describe what capacity is, when and how to assess it, and the alternatives when a patient does not have capacity.
The ethical background
Before starting a medical treatment or procedure, a physician must obtain the patient’s informed consent. This is a core ethic of medicine. Informed consent describes the voluntary decision made by a competent patient following the disclosure of necessary information. Informed consent is key to achieving a balance between promoting patient self-determination and protecting vulnerable patients from harm. In most clinical encounters, informed consent unfolds effortlessly. However, in the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic can be challenging.
It is important to have skills to recognize and address these challenges. One of the most common challenges to practicing the ethic of informed consent is the impact of illness on a person’s decision-making capacity. A patient who retains capacity ought to make his or her decisions and does not need someone else (a friend or a family member) to help with the decision.
Incapacity is unfortunately common among the acutely ill medical inpatient population, which typically skews older with more comorbidities.1 Impairments frequently are overlooked for a variety of reasons,2-6 including that many hospitalized patients do not challenge their doctors’ decisions. Doctors may be reluctant to assess capacity because the assessment may medically, legally, or ethically complicate the patient’s care.
Two common terms describe the outcome of an assessment of a patient’s decision-making abilities: competency and capacity. Competency describes a legal principle. It is granted or withdrawn by judicial review. The consequences of a judge rescinding competency are severe: A patient would need a guardian to make choices on his or her behalf.
Capacity, on the other hand, is a clinical concept. A physician assesses whether the patient can make a specific decision in a specific context. The difference between the two terms – competency and capacity – delineates what are the consequences of the assessment and which authority, a judge or a physician, has the right to withdraw a person’s decision-making authority.
The judge offers a global assessment that can lead to a guardianship. The physician’s decision is temporal and situational. Patients can lack capacity when they are ill and recover it when they are healed. Capacity is specific to each medical decision that the patient makes and so a person can lack capacity to make some decisions but not others.