Dr Lynn Schaefer gives SR Times her expert knowledge on the topic of patients decision making capacity after stroke, what if they cannot make decisions for themselves? How do we help stroke patients to make decisions for themselves?
What kinds of cognitive deficits may result from a stroke?
In addition to physical symptoms, such as motor weakness or sensory deficits, strokes can also cause cognitive symptoms. These can be disturbing for the patient as well as the family, and can affect the ability of the individual to live independently. Cognitive symptoms may include attentional difficulties, memory problems, trouble coming up with words, language difficulties, spatial or perceptual changes, and decreased executive functioning. Executive functions refer to “higher order” capabilities such as thinking, planning, organising, initiating tasks, shifting between sets of information, reasoning, inhibiting impulsivity, judgment, and problem-solving. The type and extent of cognitive deficits one experiences following a stroke depend on the type and severity of the stroke, and the area or areas of the brain affected.
How does this affect the stroke patient’s ability to make healthcare and other decisions for themselves?
Oftentimes, hospitalised patients are asked to consent to a procedure or to assist in their discharge. The ability to make voluntary (meaning not coerced), informed consent is known as decisional capacity. Capacity is specific for different decisions, so there is the capacity to consent to medical treatment, to make welfare decisions, to make a will, etc. To make a healthcare decision or to assist in disposition decision-making, one must be able to understand the question at hand, attend to and remember the information presented, reason logically to make a decision, and communicate a decision. Clearly, deficits in attention, memory, language, or executive functioning can impair any part of this process. Capacity can be diminished temporarily, or one can be permanently incapacitated or lacking in capacity. Illnesses such as a stroke or dementia can affect one’s capacity, either temporarily or permanently. However, having cognitive impairment does not necessarily mean that one has diminished capacity. Capacity must be ascertained or assessed functionally at the time, either clinically and/or by a legal professional.
In doing so, if it is determined that an individual comprehends the decision at stake (and can explain it in their own words), appreciates the consequences of their decision, can reason rationally and logically, and can communicate their choice, then they are considered to have decision-making capacity. Autonomy and self-determination, or the right of competent adults to make their own choices and decisions, are presumed until proven otherwise. Even an “unwise” decision, or one that we would not choose in the same situation, does not by itself indicate someone is incapacitated.
What happens if a stroke patient cannot make their own decisions?
If someone lacks the capacity to make their own decisions, the healthcare system looks to see if there is someone appointed, such as a family member or friend, to make decisions on behalf of the patient. Ideally, one would have already made their decisions and wishes known while they still had capacity, and executed these in writing. An advance decision (advance directive in the U.S.), or “living will,” is a written statement of one’s wishes regarding medical treatment should they be unable to communicate these wishes themselves. In addition, they could have designated a surrogate decision-maker, called a lasting power of attorney (LPA) (or healthcare proxy in the U.S.), that would speak for them and act on their behalf should they become incapacitated. To make a decision, the person’s best interests must always be considered and the patient should be involved to the extent possible. If family members disagree or you have nobody to make decisions for you over a period of time, then the court can appoint a deputy (or guardian, in the U.S.).
How can we help stroke patients make their own decisions?
Capacity exists on a continuum and can fluctuate. Ideally, the patient’s capacity can be optimised, enhanced, or even restored for them to make their own decisions. For example, if time is not of the essence, waiting until their cognition improves (following treatment or therapies) and then reassessing their capacity may be an option. Other adaptations and accommodations include: assessing the patient at their preferred time of day when they are most alert, using amplifiers for reduced hearing or enlarged print visual aids for reduced sight, and offering different methods for communication. If the patient has difficulty understanding, education could be provided, or forms could be read aloud and interpreted. The goal is always to maximise and support the stroke patient’s abilities and capacity before taking away their autonomy.
