Wednesday, October 31, 2018

Justice O'Connor and our Future Selves

by Michael C. Dorf

In my latest Verdict column, I note that with Justice O'Connor's announcement last week that she is withdrawing from public life, we have reached another milestone in the passing of the Reagan Court. The announcement underscores what we already knew last summer when Justice Kennedy announced his retirement. After nearly three decades in which Reagan's appointees--O'Connor, Kennedy, and Scalia--dominated the Court, a new era has begun. I argue in the column that, ironically, the real Reagan Court has now finally been born.

Here I want to focus on a very different sort of issue raised by Justice O'Connor's announcement. As readers may recall, Justice O'Connor announced retirement (pending confirmation of a successor) in 2005, at a time when she could have served longer. She did so in order to be able to care for her husband, who was then himself suffering from dementia. Unfortunately, John O'Connor's condition quickly worsened to the point that he needed 'round-the-clock care in an institutional setting. With his memory compromised, he developed a relationship with another resident of the facility. Justice O'Connor, in a display of incredible grace and generosity, supported him in that relationship, even as he lost his memory of her. (The parallel with the film Away From Her was widely remarked upon a decade ago.)

Having lost a dear friend to early-onset Alzheimer's and having seen the impact of dementia on others, Justice O'Connor's situation leads me to wonder about a set of questions that have legal, moral, and ultimately pragmatic dimensions: To what extent, if any, should fully competent adults be able to limit the freedom of their future selves should they succumb to dementia?

Suppose that Jill and Jim have been happily married for many years. Jill worries based on her family history that she may eventually develop dementia. She expressly instructs the doctors, nurses, and staff at the facility where she would be housed in the event that dementia develops to prevent her from forming a romantic relationship with any of the other residents, at least while Jim remains alive. She makes this commitment out of love for Jim but also out of what she perceives as a moral obligation of fidelity to her wedding vows.

Now imagine that the sad day arrives. Jim remains mentally and physically fit, but Jill needs institutional care for dementia. In this state, Jill forgets Jim and her wedding vows. She meets another resident, Dave, at the facility. She flirts with him and is about to start a relationship. How should the staff respond?

Let us assume that the facility does not have a general policy forbidding residents from forming and acting upon consensual romantic relationships. Let us also assume that while Jill has substantial memory loss, she has the capacity to consent or not consent to the relationship and any associated activity. Put differently, even in her current state, if Jim were not alive or if Jill had not made the prior commitment, there would be no question that she would be permitted to form and act on the romantic relationship. And let us also assume that the relationship is, in a hedonic sense, in Jill's interest. She will be happier in the relationship than if it is denied to her.

I presented the foregoing example to various of my colleagues, who directed me to a vast literature in the philosophy of personal identity and related matters. One such colleague asked me why the question isn't simply whether Jill is now competent to consent to the new relationship. After all, we allow people to change their minds about all sorts of profound commitments. If she's competent, why hold Jill hostage to her former self?

My tentative answer to that question is that while Jill is competent to consent to the relationship and the associated activity, she is not competent to make a choice to reject the person she has been for most of her life. Competence is not an all-or-nothing one-size-fits-all proposition. There are, I think, degrees of competence and competence for various purposes. That judgment might bear on the issue presented in the currently pending SCOTUS case of Madison v. Alabama, where it is argued that the petitioner's inability to remember his crime renders him incompetent to be executed, even if he is not necessarily incompetent in all ways.

But I don't want to confuse the issue too much by treating it as a legal question. I don't even necessarily want to treat it as a moral question. Perhaps it would be morally permissible for Jill's current caregivers to choose either path--allowing Jill the pleasure and comfort she would gain from the relationship with Dave or honoring the wishes of the person she used to be by restricting her. Even if either course would be morally permissible, however, Jill's caregivers still must choose one or the other. I'm not necessarily asking which choice is right and which wrong in a moral sense. I'm asking which choice they should make. That strikes me as a genuinely hard question.

Allowing pre-dementia Jill to restrict the freedom of future-Jill with dementia may seem continuous with other sorts of ways in which we allow present selves to make choices that limit the freedom of future selves. If Bob chooses to smoke cigarettes when in his 20s, Bob in his 50s may pay the price through poor health and/or a premature death. If Sally in her 20s, 30s, 40s, and 50s squanders her income on expensive vacations and luxury goods rather than saving a substantial portion of her earnings for retirement, Sally in her 70s and 80s will lead a less comfortable life than she otherwise would have. Given that we allow people to make these sorts of choices to harm their future selves for transient pleasures, is it really so difficult to imagine constraining Jill's freedom to honor a noble commitment?

Here's another case. Suppose that at some point in his 40s Morris becomes an observant Jew. In his 80s, anticipating the potential onset of dementia, he attempts to find a facility that will care for him that only serves Kosher food. Unfortunately, he cannot find one that meets his other requirements (such as proximity to his adult children). Morris makes arrangements to be cared for at a facility that can provide him with Kosher meals but that also provides residents with non-Kosher meals. He specifies in advance that he should only be served Kosher meals. Dementia overtakes Morris, and he moves into the facility. One day at lunch he notices that other people are being served pork chops. He asks the waiter to bring him one. The waiter tells Morris he gets the Kosher meal. Morris, in his dementia, does not recall having become observant and demands a pork chop. He becomes agitated. It is clear that he will enjoy the pork chop, but giving it to him will dishonor the express wishes of the person he was. (It would also contribute to demand for the suffering and slaughter of pigs, which concerns me as a vegan, but I put that issue aside, partly because I am assuming that the Kosher meal also is animal-derived.)  How should the directors of the facility respond?

If we think that pre-dementia Morris should have had the freedom to send his future self to a facility that only served Kosher food, then why should the fact that he couldn't find such a facility affect our judgment now? Drawing that comparison, we might say that the facility should honor the earlier-expressed wish for Kosher food: the cognizable harm in my hypothetical is not depriving Morris of the pork chop (which he also would have been deprived of in the all-Kosher facility) but allowing him to see that other residents were eating pork chops. However, there may be no way to avoid that harm without creating other, possibly worse, harms. Communal dining combats feelings of isolation. To spare Morris the sight of other residents eating pork chops, the facility might have to have him dine alone, which would be equally or more upsetting as permitting him to see and covet the non-Kosher food of other residents.

Does it matter that in both Jill's case and Morris's case, the wishes originally expressed are ones that society generally deems honorable -- respectively, marital fidelity and religious observance? Suppose that instead of Morris becoming religiously observant in his 40s, we are faced with Dolph, who became a Klan member in his 50s. Dolph is now horrified by interracial relationships, even though (or perhaps partly because) he was in one when he was a younger man. Pre-demential Dolph wishes to provide the facility where he will eventually be cared for with instructions to prevent him from forming a romantic relationship with anyone who is not white. Dolph with or without dementia has the freedom to form romantic relationships based on the race of his prospective partner. If we think that pre-dementia Jill is entitled to restrict the freedom of Jill with dementia to form romantic relationships entirely, why shouldn't pre-dementia Dolph be entitled to restrict the freedom of Dolph with dementia on grounds that would be permissible, albeit odious, in other circumstances?

The answer, I think, is that in all of these cases, others become complicit in the enforcement of the wishes of the earlier person against her or his respective future self. I'm not sure what the right answer is in the case of Jill or Morris, but I am somewhat more sure that Dolph should not be able to enlist his caregivers in his racist project. So the substantive aims of the pre-dementia individual do seem to matter.

And yet that troubles me, because there are likely many circumstances in which the pre-dementia individual has what I would regard as noble or at least innocuous aims that might be regarded by later caregivers as odious or at best silly. If it were to come to it, I surely wouldn't want my caregivers to make a judgment that veganism is a silly commitment and thus to serve non-vegan food to my future demented self, even if that future self would subjectively experience pleasure from it.

Accordingly, I am left with what I regard as a genuine dilemma, a clash between two sets of values -- or perhaps a clash of two implementations of the value of autonomy, one that respects the ability of a person to plan her or his life over time and one that respects the ability of a person to abandon a plan at any given time. I've found the philosophical literature I've looked at (including work by Michael Bratman, Robert Nozick, Derek Parfit, and others) very informative but insufficient to resolve the dilemma in a satisfactory manner. Perhaps the answer is out there in something I haven't read, or perhaps the dilemma is unresolvable.

In any event, I would be very grateful for comments, especially those that draw on related professional or personal experiences.

13 comments:

Joe said...

I can understand the arguments for both sides but the stress that could occur to the person suffering dementia here gives me pause. Like pain given a non-human animal, sometimes that can be justified when inflicted on those who cannot understand.

I'm unsure some general principle of pre-dementia consent and concern for future events justifies that. We have living wills and such but usually that applies to those unconscious or so forth. And, it's an immediate thing. Refuse treatment, you will die soon. Here, we can be talking years of pain and suffering.

Michael C. Dorf said...

Joe, thanks for the comment. I agree that years of pain and suffering would count heavily against imposing the will of the pre-demented person. I want to limit my consideration to cases of either mild discomfort or forgone happiness.

David Ricardo said...

Given the absolute horror of dementia that all of us have witnessed in people we love and care about, it would seem that any action they wish to take once they are consumed with the disease that makes their lives more pleasant, comfortable and fulfilling and does not present injury to them should be allowed regardless of their previous wishes.

Denying any of these sufferers a measure of happiness would appear to be extreme cruelty. Their pre-dementia life is no longer relevant, it no longer exists, and once it is removed from memory it is as though it never existed. A compassionate society would allow themn what happiness they can have knowing that happiness will only partially offset their affliction.

Joe said...

Given the state of life here, I wonder how "mild" the discomfort in the hypos.

Michael C. Dorf said...

I appreciate and am sympathetic to DR's position, but I also feel the tug of the contrary view, for reasons I'll elaborate in a follow-up at the end of next week.

t jones said...

None of the hypotheticals you posit seem particularly legally compelling. The Jill/O'Connor situation is (unfortunately) about protecting the feelings of another. This has emotional appeal to those of us imagining ourselves in a similar situation, but is not a sufficient reason to deprive an adult of their freedom to choose with whom to socialize. Dementia is real, terrible and frightening. However, it does not automatically deprive adults of particular rights - e.g., voting.

The Klan hypo suffers similarly, though it's the feelings of racists which we would be "protecting," which appears intended to make it an "easier" question. The smoking, etc., situations involve personal choices which have downstream consequences (e.g., poor health). But are not analogous to the others, since they cannot really be reversed later, only regretted.

A possibly harder question would be if someone had, pre-dementia, set aside enough money to support him/her-self, but after reaching a stage of dementia where we can reasonably question their competency (assumed in you hypos) they decide they want to spend it all on lottery tickets or lots of ice cream. Absent a conservatorship, does someone else have the right to interfere with that decision?

Rick said...

Not every human decision raises “a genuinely hard question” in a legal or moral sense. Justice O'Connor's decision is a personal one, motivated by a simple and yet deeply compassionate desire to see her husband happy, even though that happiness came at the cost of him losing his memory of her and took the form of a romantic relationship with someone new at his care facility. Justice O'Connor showed us love is unconditional and selfless. This simple message of love, however, is seemingly lost in a raft of robotic legal hypotheticals and highly formalistic analysis of human emotions.

Jason Ottomano said...

This post brings to mind my grandmother, who suffered from dementia and passed away recently. She was lucky enough to always remember certain things, such as the identities of her family members, but most other details of her daily life succumbed to the disease.

My grandma did not leave instructions for her future self. I merely offer two examples of how our family sought to balance (a) what we knew to be her pre-onset personality with (b) her post-onset happiness.

(1) My grandma's house has been in our family for generations and she mentioned throughout the years that she never wanted to leave it. I don't consider this to be an instruction of the type you discuss but, nevertheless, we knew how she felt on the subject and her desire to remain in her house only intensified post-onset. We knew that on the one hand, we could hire a live-in caregiver and thereby honor her wishes. On the other hand, an assisted-living facility might provide certain other benefits, such as emergency response, that a live-in caregiver could not.

We elected to hire a live-in caregiver. We were comfortable that grandma would get the care she needed, and we knew from broaching the subject of moving that she would be nothing short of devastated if forced to leave her home.

(2) Grandma had never been a drinker, but after dementia set in she began to regularly "raid the liquor cabinet" that my grandpa had kept when he was alive. Her consumption grew to an unhealthy level (this was before we hired the live-in caregiver) so my dad, who stopped by her house at least once a day, removed the remaining alcohol from the house. Grandma scolded him for taking it, but as I mentioned she remembered us all, and she ultimately knew that her son loved her and was acting in her best interest.

Number (1) is a case where grandma's pre-onset and post-onset desire didn't change, so it does not get at the dilemma of a contradictory future self. Nevertheless, it may inform how we should consider a dementia patient's foregone happiness when making decisions about their care. Assuming, for the sake of argument, that an assisted-living facility would have provided a higher level of comprehensive care than a live-in caregiver, grandma's desire conflicted with what would have been best for her health. Although, from personally speaking to her, I am confident that she would have been extremely unhappy and depressed if she had been forced to leave her house.

Number (2) perhaps aligns with Morris, in that grandma had a desire for alcohol in a way that she did not have pre-onset. A preference, or lack thereof, for alcohol is by no means the same thing as a religious dietary restriction, but my point is that her post-onset self was different from her pre-onset self. I don't think number (2) was particularly difficult to resolve in that my dad simply reigned grandma in from a dangerous level of drinking. But it caused her some level of foregone happiness in not being able to drink freely.

I think, then, that the amount of foregone happiness must, together with the nature of the pre-onset instruction, drive the analysis. In the case of Jill, the foregone happiness could be high, but the pre-onset instruction is well-intentioned and thus should also be given great weight. I would not prevent Jill from having the relationship, though I think this is the toughest subset of cases. For Morris, the foregone happiness is (arguably) low and the pre-onset instruction is well-intentioned, so I think this is an easier case of adhering to the pre-onset instruction. For Dolph, as with Jill, the forgone happiness could be high, and the pre-onset instruction is not well-intentioned (to put it mildly), so I think this is an easier case of allowing the patient to violate the pre-onset instruction. I grant that this proposed scheme requires some sort of valuation of the instruction, normative or otherwise, and I further grant that this may prove to be problematic.

Laura said...

I speak from personal experience. I am my mother's guardian. My mother has had early onset dementia for 12 years. I had to become guardian (and was approved by a court) because her statutory durable power of attorney was her husband, who developed dementia himself, after caring for my mother for years. There was no alternate named. Hence, the guardianship. (BTW, my mom and step dad were successful attys, and I am an atty.)

My first thought after reading this post was that there will usually be someone "in charge" over a person who has become incompetent due to dementia. Depending on the law, the person in charge, such as a guardian, will have statutory duties, even a POA has certain express duties, via the instrument, as well as statutory duties under state law. Anyhoo, what happens then is that the person "in charge" may not, and usually, doesn't have to follow express instructions for the incompetent dementia sufferer.

Also, going on the hypo of whether something is morelly emotionally appealing versus "meh," I look at a hypo thinking of my mother. Say she told everyone never to spend more than 1500.00 a month for elder care, regardless of the circumstances. That would be ridiculous because she fortunately has the means to afford quality institutional care, no family member can care for her at one of our homes, and institutional care costs way more than that (and she doesn't qualify for medicaid). As a guardian, that's a no-brainer, and there is no practical way to abide by that one wish. She has to be an Institutional setting, and her care costs more than $1,500 a month. I'm allowed to do that as her guardian, even if she wanted no more than $1,500 a month spent on her Elder Care. Morally, no one's going to balk at that because like Mr. Dorf said, it's kind of a neutral issue.

Another hypothetical would be the ones suggested in the post, such as pre-dementia parents saying don't let me get involved with someone else if I get dementia or I only want kosher food if I develop dementia. Well, in real life, patients with dementia have a lot of behavioral problems. It's very unfortunate but the reality is that certain patients get evicted all the time from institutional settings because of their behavioral difficulties. At the end of the day, they run out of options in their community. Having witnessed that with other people that live with my mom at her assisted living facility, if prohibiting my mom from dating someone else or eating non-kosher food led to behavioral problems, it would be within my right to override her wishes, as guardian. Plus, you have to factor in the Practical consequences. If abiding by pre dementia wishes leads to lower quality of care or behavioral issues that result in the patient getting evicted constantly, then you're just left with doing what's best to keep the patient happy NOW in the best setting possible.

I guess what I'm saying, in summary, is that I believe only a few people would make those kind of pre dementia decisions or demands. And as a practical matter, providing for someone with dementia and ensuring that they get the best quality Care is ruled by Common Sense, at each moment of time. And I would help that no one would regret that they cannot make the impossible happen---meaning, if it's not possible to honor certain wishes and there's no requirement under a law to do so. In other words, I like the academic exploration of these issues, but I just don't think they're likely to come up or that they're impossible to resolve. Given the likelihood that the incompetent dementia patient is going to be guided by a statutory durable power of attorney or Guardian or spouse, they shouldn't feel, as a policy matter, obliged to make the impossible happen, if it's not feasible.

Laura said...

Sorry for the poor writing, typos, and inexplicable capitalization. I'm on my phone and was in a hurry to get my thoughts out, after a long day!

Laura said...

Last comment. About the evictions and behavioral issues with dementia. What u a meant to say is that I've seen a significant number if patients evicted from where my mom lives due to behavioral problems. It's usually not their first eviction. Where they are in in the dementia stage determines their options. If they cannot make in an upscale assisted memory care unit and keep getting evicted, they end up with no options but the provider of last result, which usually isn't the best place. BUT, as they deteriorate, circumstances change in their favor, for example, if they become non-ambulatory. That is, the person declines to the point where physical limitations offset the behavioral issues due only to physical limitations. Then, they might be ready for upscale assisted memory care. My point, taking into consideration my previous post, common sense rules the day, if you want to provide the best environment for your loved one and these moral/ethical issues do become somewhat irrelevant to day to day provisions of care.

Laura said...

I don't think you can do that if you know how the disease process works.

Laura said...

There are over 50 types of dementia. No one is the same. You can't look at these issues from some dreamy sense of how the disease process works. Sorry :)