Should Mom stop driving?
I have tried, repeatedly, to get my mother to stop driving. She just celebrated her 88th birthday. Every time I raise this issue, she emphatically insists that she is not giving up driving. I reason that the cost of taxis would easily be less than what she spends on gas, car maintenance, and insurance. She tells me that she absolutely needs the car in case there is an emergency and ____ (fill in the child or grandchild) is stranded (something that happened once roughly 15 years ago).
This parent-driving-problem is not mine alone. For a long time, I would discuss parent-driving with my friend Greg Karczmar. Greg’s father, who is also my friend, Alex Karczmar, was born in 1915. He is proud of the fact that he is part of the Exceptional Cognitive Aging study at Northwestern University under the direction of Marek-Marsel Mesulam. Greg and his wife pushed Alex to stop driving for years. Then last year, after turning 98, Alex decided to give up his car. I called him up last week and asked him why then? He told me that he caved to the pressure of not only his son and daughter-in-law but also his spry wife and good friend Ingeborg. The chorus got too loud and he caved in. I still don’t know what changed between 97 and 98. Alex did say that his friend Ingeborg had said that reflexes slow with age. Then after reminding me that he is an exceptional ager, Alex told me he doubted his reflexes had slowed.
I present this dilemma because I have been thinking about the capacity for decision-making since attending a talk entitled “From Status to Capacity: Autonomy on Endless Trial” by Dr Jason Karlawish, Professor of Medicine, Medical Ethics and Health Policy at the University of Pennsylvania. Dr Karlawish spoke in the Neuroethics seminar series at the MacLean Center here at the University of Chicago. He frames decision-making capacity as requiring four component abilities:
- Expressing a choice
Since we are in an election year and since Dr Karlawish used this example in his talk, I will expand on these component abilities by consider making a decision on voting. We need to understand the mechanics of voting (who is eligible, registration, where and when to vote), appreciate the potential impact of the voting (health care, social security funding, approach to terrorism), reason through how different voting choices will affect the various issues at hand (Candidate One is likely to increase the eligibility age for social security whereas Candidate Two is likely to raise federal income tax), and finally, make a choice about who to vote for.
Dr Kanwisher and his colleagues asked questions of patients with Alzheimer’s disease in order to assess their capacity to vote. As background, it should be understood that, since 2001, voting competence in the U.S. is codified as the Doe voting capacity standard that states that “persons are considered incompetent to vote only if they ‘lack the capacity to understand the nature and effect of voting such that they cannot make an individual choice.’” Accordingly, Dr Kanwisher conducted a study in which:
“an interviewer inquires about the person’s understanding of the nature of voting and then asks a question to assess understanding of the effect of voting. Next the interviewer reads aloud a description of two candidates for governor, gives this written description to the person, and then asks the person to choose one of the candidates. [These questions assess Doe voting capacity.]
[Then questions are asked] to assess the abilities to reason about the electoral choice by comparing the candidates and identifying the ways in which choosing one over the other could affect the subject’s own life. Subjects are queried about their appreciation of the significance of voting by being asked to explain why they would or would not want to vote in the next election for governor of their state.”
The results showed that:
- Patients with very mild dementia (15%) were competent to vote.
- Most patients with mild dementia (24%) were competent to vote.
- Patients with severe dementia (27%) were not competent to vote.
- Patients with moderate dementia (33%) were highly variable in their capacity to vote, ranging from scores that equaled those of very mild to severe AD patients
In another study, Dr Karlawish and colleagues compared the capacity of cognitively impaired patients and cognitively intact care-givers to make a decision. The patients were individuals who had problems with one or more of the following:
- taking medications
Both patients and care-givers were asked to make a choice about whether the patient should take a drug that could slow down memory loss. They were then asked a series of questions to probe their understanding, appreciation, and ability to reason through the choice.
In contrast to the care-givers who performed at peak levels, patients had trouble with understanding (62% performed less well than the worst performance of a care-giver), appreciation (85%), and reasoning (85%). Yet the patients had no trouble expressing a choice!! Only one of the 39 patients could not do so. What these data suggest is, in the words of the authors, “Capacity based solely on the ability to express a choice … would be the simplest approach but also the most misleading.”
The finding that expressing a choice is preserved even when the requisite ingredients for making that choice are compromised, resonates with my experience. I once was in a position to make a medical decision for an individual with mild to moderate cognitive decline. The question was whether to put in a pacemaker. I was against the operation but when we asked this individual, they vehemently expressed the desire for the operation. I remember being surprised at the individual’s vehemence and viewed this vehemence as the end of the story. A vehement expression of preference seemed to me at the time to be all there is to it. Now I see that that may not be the case. Expressing a choice is a preserved ability even when the precursors to the choice are not there. In other words, confidently expressed choices are not necessarily choices that reflect the decision maker’s personality, temperament, experiences and preferences. Or at least the choices do not reflect the decision maker’s historic personality, temperament, experiences and preferences as they existed before any cognitive impairment.
In the end, I regretted that pacemaker. The life of someone that I loved was indeed prolonged. However, a good chunk of my friend’s last years were filled with paranoia, sun-downing and confusion; all hallmarks of cognitive decline. Katy Butler writes movingly of her regrets over her father’s pacemaker, implanted in order to allow a hernia to be surgically treated. Some years later, when Ms Butler’s mother faced the prospect of staving off death by having open heart surgery, she chose not to. She died the morning after her second heart attack, “lucid to her end.”
The decision to start kidney dialysis is another choice that many face. Kidney dialysis will extend life expectancy. It will also alter one’s life. As Paula Span writes, in the New York Times:
“In a Canadian survey, 61 percent of patients said they regretted starting dialysis, a decision they attributed to physicians’ and families’ wishes more than their own. In an Australian study, 105 patients approaching end-stage kidney disease said they would willingly forgo seven months of life expectancy to reduce their number of dialysis visits. They would swap 15 months for greater freedom to travel.”
I have been teaching a short online course on Neuroethics that parallels the MacLean Center seminar series. From the students comments and from our class Google Hangout, my thinking on capacity has evolved in the following ways:
- Capacity is not static. It differs across domains – I am really good at deciding what to cook but terrible at choosing the quickest line at a grocery store. And capacity changes all the time, being better in some circumstances and worse in others. Being either euphoric or depressed may adversely alter one’s decision-making capacity. In a stunning example of how seemingly unrelated factors can influence decision-making, Danziger et al 2011 reported that glucose levels impact judges’ parole decisions. The judges were more likely to grant parole in cases that they heard first thing in the morning, after a morning snack, or after lunch. In other words, glucose levels are part of the judges’ decision-making, even if they don’t know it. The scary part is that glucose levels and who-knows-what-else probably influence each of us all the time as we blithely go along thinking that we are making our decisions for X, Y, or Z reason.
- Many of our decisions are neither rational nor reasoned. We often make decisions based on our gut (what Kahneman would call System 1). It is patently obvious that our choices do not always make sense, do not always serve us well, and often can lead to great harm, even to predictable harm. In recognition of the irrationality of many of our decisions, one student wondered whether capacity should be granted to those that “meet some sort of “human” standard — a flawed rationality that is common to our wiring?”
- Most people, myself included, do not possess capacity all of the time. Who gets to say when it is appropriate to test a person for capacity?
- Is it possible to judge capacity without paternalism? As another student wrote, “How do we avoid inserting our own biases? If someone is capable of making decisions, but we think they are bad decisions, then what’s to stop us from saying, ‘Well, you just aren’t capable of making good decisions.'”
I can understand the utility of the decision-making capacity framework within the context of consent for medical care. However, I fear that this framework is both impossible and inappropriate outside of an acute medical setting and an un-biased expert capable of judging capacity. Going back to my friend with the pacemaker, I have to say that vehemence counts for a lot. I can’t imagine opposing her clearly expressed desire. And as far as my mom’s driving, I lose and she wins. She gets to drive because it is her decision. Of course, that does not stop me from repeatedly urging her to stop.