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.
I have a very old brother in law in the same place.
Have you considered whether the story of the Tiger and the goat in Russia is not a fine example of animals showing a surprising degree of empathy?
When are you doing another MOOC?
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I’ve always wondered what proportion of the voting population in any democracy have complete appreciation and reasoning for the impact of their vote, and how it is even possible for anyone to achieve this. I’ve never read a complete manifesto, let alone those of all candidates. TV debates are often cited as a great leap forward in this respect, but so much of the performance is about media savvy-ness. Yet I’m perfectly capable of making a choice on election day – which I convince myself is appreciative & reasoned ‘enough’!
I wonder if there is a reflex test and driving test that could be used to give to the old folks that might convince them. I am sure they do not want to hurt anyone, but don’t want to be bullied into giving up this great symbol of autonomy.
Oddly enough, I’m working on a comic, “Judgement Call” about the decision to install my mom’s pacemaker, which we wound up doing 5 years ago. I thought it through as well as I could, and my uncle opposed it, but I couldn’t let her go, and so when she said she wanted to stay alive I had the answer I wanted. As it turns out, it’s been a great 5 years. Her dementia moved past the disturbing phase into a gentle contented Zen-like peace. And her existence keeps the family together. I regularly ask her if she’s happy and if she wants to keep living. Last night for the first time she said, “Not necessarily.”
So it’s timely and disconcerting to read this, but seeing that even judges decisions are compromised by their snack schedule, I feel OK about how it all went. Also, I wonder what percentage of voters could answer the questions more sensibility than the cognitively impaired.
We went through the driving thing. I have a comic about that too. Mom’s car was dented everywhere. She’d say dad did most of that, but he’d been dead for a couple years. My brother decided to have the body work done and it took a very very long time. Very long. After that I needed to borrow the car, for about 6 months. And so it went….
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Peggy should insist that her mother be certified as competent to drive. Her doctor can arrange for this. In the meantime Peggy should ask her mother how she would feel if she caused serious injury or death (no matter how she feels, at her age her reflexes are definitely slowed) to someone the same age as one of her grandchildren.
The elephant in the room is that if a person with cognitive decline chooses to end it all rather than live a progressive diminished and eventually meaningless life, that choice is not granted.
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Do you think that modern medicine means that we all live a bit longer than we are really fitted to do. Both my parents lived longer than their bodies could support, and would have died more peacefully a year or two earlier. As I am coming along to that same time of my life, I can only hope that fate kills me promptly. As you say, the options for deciding it is time to leave are very sparse, and one’s life tends to be in other hands at the end of life.
Maria and Michael, I do think this issue is showing some progress . I always thought it so illogical that we can end our pets suffering but are not allowed to have someone end our own. Who’s life is it anyway? My mom made it so clear that if she could not sit up and ask for food/ water and feed herself that if I kept her alive she would come back to haunt me. When she had a stroke that left her unresponsive I was actually afraid to call anyone for awhile, fearing they’d come in and insert IV’s…. This post brought back such a difficult time and I really empathize with people who are facing decisions involving aging parents. Thankfully my mom hated to drive….
This post addresses a variety of important and perplexing issues!
In my humble — deciding about voting is one thing. Deciding about driving is another. Driving offers so many opportunities to cause harm to others. Whether or not someone is allowed to drive IS in the hands of the state — you have to have a license. I believe the state needs to step up and administer a vision test and a reflexes test before issuing or renewing a driver’s license. I understand it would be costly (to licensees, in time and energy, and to the state, in $$$), but getting people off the road who should NOT be driving seems like a very good idea.
Ask me about my 96-yr-old father-in-law, who lives in an area where there are no taxis………………………………………
Reblogged this on Neuroscience Is The New Black and commented:
I am an advocate of “choice” but @neuromooc explains that “choice” and “appreciation” ain’t necessarily the same thing.
Many older people limit their driving to short trips to the store , etc. Perhaps to compensate for sensory limitations or slower reflexes, they will drive more slowly. I am okay with that; I would gladly be patient if I were behind them and allow them to continue this bit of independence.
Would i rather be on the road with with a focused elderly driver ( with slower reflexes) who is proceeding slowly but carefully, or a distracted, texting teenager who is speeding or tailgating ? (Who is considered the bigger insurance risk?) In the end I don’t think reflexes always make the difference.
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Not to be trivial Prof Mason,(or perhaps I am, if that bothers me) but if Alex Karczmar was born in 1915, he did not “turn 98 last year”!
A really interesting and thought provoking post, Peggy – one that resonated with me in multiple respects.
My (almost 89-year-old) mother gave up driving about three years ago largely because of pressure from my sister (with whom she lives). My sister’s concerns, as I understood them at the time, was that her mental abilities were no longer at a level required to deal with the pressures of modern traffic. I was less concerned, because it seemed to me that Mom was still perfectly ‘sharp’ mentally and that her journeys were very short. However, when I visited soon after the decision was made, I was surprised by the deterioration of her physical condition – she moved slowly, with the aid of a stick – and it was immediately obvious to me that whatever the state of her mental acuity might be, she no longer had the motor reflexes one would need to be a safe driver. When I pointed this out, she readily conceded that this was probably the case.
There is no doubt that the concomitant loss of autonomy associated with a decision to stop driving had a negative impact on her. She had been saying, for some years prior to the decision, that she felt that she had lived long enough, didn’t want to get ‘really old’, and was ready to die, but these sentiments now began to be expressed more frequently.
In August last year she contracted pneumonia and was admitted to hospital where she was also diagnosed with acute heart failure. When I visited her in hospital, her first comment was ‘How long must I go on like this?’. My response to her was that if she was serious about this, then she had missed a golden opportunity by seeking medical treatment. Over the next few days, although she was experiencing some minor episodes of confusion, she appeared to be mentally competent and we moved to a point where she agreed that she should stop her medication. We were engaging then in what might be accurately termed the making of the ultimate decision. On discharge she consulted an end-of-life medical practitioner who went through the list of medications she was taking (statins, anti-hypertensives, a diuretic, etc.) and took her off everything except for a diuretic and the oxygen she had been put on in hospital. She was also prescribed a morphine syrup to be taken only in case of respiratory distress. She signed an Advance Medical Directive. The EOLP told us, that in her opinion, Mom’s remaining life expectancy was probably a matter of weeks rather than months.
Back home, with full time carers, her condition appeared to be stable. I was concerned about the contradiction of continued oxygen use and persuade her to try discontinuing its use. She did this with no measurable adverse effects. Over the subsequent weeks her condition continued to improve to the point that when the EOLP did a follow-up visit she found that Mom had normal blood pressure and that there were no residual signs of heart failure. She has a ‘new lease on life’ which I believe is due to the presence of a care-giver and a dimished sense of isolation and loss of autonomy.
All this is great, but now here comes the rub – she has started to express wishes to resume the statin and anti-hypertensive medication she previously discontinued because she is afraid of having a stroke. And this now leads onto the question of competence and decision making. On the face of it, she shows no signs of confusion or remarkable cognitive impairment, and yet her expressed wishes are contrary to the recent intensively discussed decision to discontinue all non-palliative medication. So what has happened? It may simply be that with both the real and perceived improvement in the quality of her life, she has changed her mind and doesn’t want to die after all. She has also expressed the fear that after death, her ‘spirit would wander around’ and that scares her. I can’t help feeling that her reasoning is impaired at some level and that this is not then a fully competent decision. It is however not an incompetent decision that I feel I can interfere with – all I can do is to continue to point out to her what the implications of her decisions might be and then leave it to her to decide. If we were to require all decisions to be logical then there would be very few valid decisions being made.
The other thing I have noticed with Mom, in the context of competence, and which I suspect is probably not an uncommon old-age phenomenon, is the inability to assign weightings of importance, to decisions that must be made. By this, I mean that it appears as if both trivial and important decisions receive exactly the same attention from the person in question. I can’t see that this is taken into account in Dr Kanwisher’s model and might be a fruitful area for further study.
In closing, I must state that I am aware of the importance of not imposing my own views on end of life issues on my Mom’s situation. I firmly believe that everyone must make their own decisions, no matter how absurd they may seem to me. But this takes us full circle back to the question of competence in decision making. My personal views coincide largely with those expressed by Zeke Emanuel http://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/, although at 63, a ‘target’ of 75 seems a bit too old. I have already decided that were I to develop cancer, I would not undergo treatment. I continue to consult medical practitioners, not because I am afraid of death, but simply because I want to know the health status of this body and consciousness I call ‘me’.
Peggy Mason is a professor at U of Chicago – I took a brain class from her a long time ago – I get emails from her like this one –
I think anyone can subscribe to her email list – I will get you the course information later –
On Sun, Jan 17, 2016 at 11:20 PM The brain is sooooo cool! < firstname.lastname@example.org> wrote: