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Volume 9, Number 1, November 1997
A Case Study: Capacity and Personal Directives in Alberta
Gail Poole, L.L.B., Coordinator Ms. Smith was 72 years old when she had her first small stroke. Her recovery from that stroke was rapid, and she had minimal residual effects. Her second stroke occurred two days after her 74th birthday. This stroke caused paralysis to the right side of her body, and affected her speech dramatically. She intended to write a directive . . . Ms. Smith's niece, Grace, had lived with her aunt for many years during her adolescence, and had remained close to her aunt thereafter. Ms. Smith had no other immediate family who were living. Grace advised the attending physician that she and her aunt had talked about her aunt's future wishes following her aunt's first stroke, and that it had been her aunt's intention to write a personal directive appointing her [Grace] as the personal agent. Grace further said that she wanted to write a personal directive for her aunt now. The physician advised Grace that only the individual herself can complete a personal directive, and the individual must be competent when she writes it. Unfortunately, at this point immediately after her stroke, Ms. Smith was non-responsive. Gradual emergence from decision-making incapacity . . . Several days later, Grace and some of the hospital staff noted that Ms. Smith was now bright and alert, and she responded to them by turning her head when they entered the room and nodding when they spoke to her. Ms. Smith seemed to understand them, even though she was not speaking. Grace again approached the physician regarding her aunt's ability to understand. The physician told Grace that it would be necessary to determine whether or not her aunt had the capacity to fully understand and to indicate her wishes in order to determine if she was competent to make decisions. An assessment indicated that Ms. Smith appeared to have retained many of her social skills, and did indeed smile at visitors. She also appeared to listen to what was said to her. However, it quickly became apparent that Ms. Smith was responding to all questions which ended with an inflection in the voice of the speaker, with a nod of her head. But her responses were indiscriminate to the content of the question, and Ms. Smith frequently nodded her head to questions which should have elicited a negative response. In addition, Ms. Smith was able to follow only 2 out of 10 commands requiring physical movements of her unaffected body parts. Evidently, both Ms. Smith's comprehension and her ability to express herself had been affected by this stroke. Over the course of several weeks of healing and rehabilitation, Ms. Smith's abilities changed markedly. She began to speak in single words and short common phrases. Her yes/no responses were consistent for simple questions. She did not regain any function in her right hand; however, she started to copy letters and short common words with her left hand. But if someone spoke to Ms. Smith rapidly, or used lengthy or complex sentences, she shook her head in apparent frustration. Grace was spending a great deal of time with her aunt, as she was a high school teacher off on summer vacation. She did exercises with her aunt under the direction of the speech pathologist. Ms. Smith was now able to point with her unaffected left hand to pictures of family members who were named by Grace, and was starting to point to pictures according to short reminders that Grace gave her, e.g., "who worked for the railroad?" Grace was very encouraged by her aunt's progress. She noted that her aunt's responses were usually correct, as long as she, Grace, remembered to keep her questions short. When the nurses or other healthcare professionals asked Ms. Smith questions about her preferences on different matters, she frequently turned to Grace and grabbed her arm. Both Grace and the staff thought that Ms. Smith appeared to be requesting the involvement of Grace in decision-making on her behalf. When a resident approached Ms. Smith regarding the need for a follow-up CT scan, she said "Grace decide." During the period of her aunt's recovery, Grace read several brochures about Personal Directives. She found out that it would not be necessary for her aunt to physically write or to sign a personal directive herself, as long as the document was prepared at the direction of her aunt, it could be signed on her behalf by someone else in her presence and the presence of a witness. She also discovered that if her aunt chose again to appoint Grace as her personal agent as she had indicated before this stroke, she would not be able to witness the personal directive. Does she now have decision-making capacity? Caregivers differ on this . . . Grace again approached the physician about the possibility of having a personal directive for her aunt. She felt that her aunt was now able to understand information which was given to her in a short form, but realized that she still had difficulty understanding complex information, especially if it was presented to her in a rushed or noisy environment. The physician stated that Ms. Smith did not yet have the capacity to complete a personal directive. Grace was not willing to accept this response without a formal evaluation, and she convinced the physician to obtain a consultation from a neurologist, with a view to whether or not her aunt had capacity to complete any type of advanced directive. Ms. Smith makes her directive . . . A neurologist met Ms. Smith and asked her whether she would consent to an assessment of her capacity, or ability to understand. She consented readily. He confirmed that she had a cerebral infarct which had affected the left hemisphere of her brain, and in particular her left temporal lobe. The infarct had caused both expressive and receptive aphasia, which had reduced in severity since admission. On the day of the assessment, he found that Ms. Smith's response to simple questions and commands was now intact. However, she still experienced significant difficulty in comprehension when she was asked lengthy or complex questions. The neurologist asked Ms. Smith whether she had ever completed an advance directive or living will. She told him, "Before; Grace and I talked." He asked her who she wanted to make health decisions for her. Ms. Smith replied rapidly, "Only Grace; Grace decide." The neurologist probed further to determine whether it might be possible for Ms. Smith to indicate specific wishes for treatment in varying circumstances. This information would be necessary if she were to complete a detailed advance directive. However, the more information Ms. Smith was given, the less capable she was of understanding the content. The neurologist recommended that Ms. Smith had capacity to appoint a personal agent, but that she did not have the capacity to provide a detailed list of instructions regarding the nature of different treatments which she might or might not want. DiscussionMs. Smith is not a real individual; she was created for the purpose of this discussion paper. However, many of us have met patients similar to Ms. Smith:
Immediately following her second stroke, Ms. Smith clearly did not have capacity to make any healthcare decisions, including the capacity to complete a personal directive as she was unresponsive. Although Ms. Smith and her niece had discussed the need for a personal directive following the first stroke, her niece was unable to complete a directive on her aunt's behalf. Only the person for whom a directive is being made can direct its preparation at any specific time, and at the time of giving that direction, the individual must have capacity. How much capacity is required to write a personal directive, or to direct someone to write one on your behalf? As with the assessment of capacity for making healthcare decisions, the assessment of capacity for the completion of a personal directive is task-specific. Using the example of Ms. Smith, at the time of the assessment by the neurologist she did not have sufficient capacity to complete a detailed living will outlining specific types of treatment that she might want to consider in different scenarios of disability. However, she did have the capacity to identify one specific individual as her personal agent. This determination was aided by the knowledge that Ms. Smith had discussed the preparation of a personal directive before this stroke, and at that time had wanted her niece to be her agent. At the time of the assessment by the neurologist, the discussion of this information relied on previously learned knowledge which was then reconfirmed in the present. What is the value of a personal directive which only nominates an agent? In this instance, it could be very beneficial. If Ms. Smith developed a serious complication as a result of her condition and the medical facts and alternatives were too complex for her to understand, she would know that someone whom she trusted would be able to make the decision for her following the receipt of all the available information and options. If her condition deteriorated, and she again became unresponsive, a person of her choice would again be making decisions on her behalf. But if Ms. Smith's abilities remain the same or improve, it should be recognized that she is the appropriate decision maker for all those decisions for which she is able to understand the information relevant to the issue, if she also can foresee the reasonable consequences of the decision.
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