Two Physicians' Plan for the Possibility of Developing Dementia

I, Cari, am a palliative care physician and geriatrician. And I, Jean, am a physician too and a generation older than you, but working now in bioethics, although I don't presume to speak for ethicists—clearly not possible. We're both watching generations ahead of us, with their lives extended by the miracles of modern medicine, increasingly dying with or from dementia. So, perhaps it is no wonder that you and I are both thinking about this!

When we think of trajectories for our own lives, this is one of the scariest. I know my awareness started with seeing my mother die slowly with the progressive confusion of multi-infarct dementia. Mind you, we were lucky enough to be three siblings who had the means to visit often and to pay for a safe place for her during her five years of cognitive decline. Perhaps the saddest day was during one of those visits when I wheeled her from her room in assisted living down to the piano room to play for her, and the mother who had been my biggest musical cheerleader didn't notice the music. I lived 2000 miles away, and when she had a seizure on her last night, despite all my best plans for a peaceful end, the frightened young night nurse called 911.

Cari: Your story is painful and, as we know, unfortunately common. In fact, I anticipate dementia will likely be a feature of my final phase of life considering my personal habits and family history. The trajectory you describe troubles me because in addition to being a statistical setup for dementia, unlike your mother, I'm unlikely to have caregivers willing and able to step in for an extended period of time. Data from the National Study of Caregiving ¹ indicate that among older adults who have caregiving assistance in the community, the vast majority rely on family, most often a spouse, unpaid caregiver, daughter, or daughter-in-law. ² Statistically, I will likely live longer than my spouse, we have no children, and I'm the youngest (and only female) child in my family. This does not create a natural pool of caregivers to help guide care in the event that I need the kind of help your mother needed.

Jean: So, you really do need a plan and a way to guide your loved ones! But do you think you can try to head this off and stay in control?

Cari: I certainly do! I have a very specific plan for dementia and what prompted its development was a community viewing of a Frontline documentary featuring Atul Gawande's book Being Mortal. ³ In the film, there was a phase when each of those interviewed knew time was short and they tried to find closure and comfort within the unique circumstances of their cancer illnesses. I was struck by the time for planning that they were afforded because of the nature of their diagnoses. But what about all of those with dementia? In dementia, rather than reckoning with too little time, there is often too much time. I thought about my own advance care plan, which was geared toward that typical cancer trajectory. What would I do if I instead had too much time in a state that was unacceptable? Could I find a way to limit that time?

Jean: We all love that narrative in which a person gets to make choices and exercise control as he or she is dying. I think dementia is so frightening because we can't participate—often for years. We have to anticipate, and sometimes even that doesn't work. In Oregon, recently, a nursing home overrode the prior wishes of a woman with dementia (and of her husband) by refusing to stop offering her food since her mouth opened when they brought a forkful near. ⁴ Such cases remind us that this is a very disputed area. Was her eating voluntary? Was it a reflex? Do our priorities change when we develop dementia? Can we be happy in that constricted mental state, and should we presume to say now what we would want then?

Certainly, many of us adapt over time, change priorities, and find joy in things that might have felt insufficient 20 years earlier. There is also a robust debate in ethical circles about whether our basic character changes in dementia so that what gives us joy then may not be the same as what we want when we are cognitively intact. But do you believe your self—the essence of you—will stay consistent throughout your life?

Cari: Yes. I anticipate the values I have now and have had for all of my adult life will remain stable. I can't buy into the philosophical notion that my advance directive written before development of dementia is invalidated because a new personality develops as a result of dementia and that my future self may not have the same values as the person who wrote the original advance directive. In fact, my values are identical to those I documented 20 years ago (I recently found the advance directive I completed in college).

Jean: Identical—a pretty strong word! I can't say the same for me. Having kids, a granddaughter, a husband, and good friends, I put much less emphasis on achievement, my professional work, and excelling in academia than I did 20 years ago. I wonder what you will feel like at 70. I know that my friends and I have adapted to limitations that we didn't think we could accept 30 years ago. I don't bag the 14,000-foot mountains of Colorado any more, but it sure is lovely to walk the trails with my dog and my husband. I have more reflective time, time to teach my granddaughter how to drive (yikes!), and time to attend to my friends: meeting for lunch, listening, and bemoaning the sad state of the country—a hard topic to avoid these days. Of course, we reflect on issues just such as this.

Cari: Yes, the issue seems to come up often; perhaps it helps that I've made a habit of introducing the topic to friends. Interestingly, virtually all of them have also thought about ways to avoid an unwanted protracted life with dementia, but every plan has serious flaws. Their motivation generally follows the death of a loved one after a long debilitating illness associated with dementia. These loved ones have had no opportunity to be self-directive, in contrast to all of the individuals in the Frontline documentary. One friend has a date in mind. He plans to spend the year prior making amends, saying goodbyes, and then end his life. His plan, however, is unlikely to be successful: he intends to take sleeping pills, which, at the dose he described, would probably result in a very nice nap, but not death. Another friend estimates that she weighs about as much as a large dog and she would present to her veterinarian in a St. Bernard costume to be put down. After witnessing her mother endure a prolonged period of illness and memory impairment, she questions why we are so much more humane to animals than to humans who are suffering?

Jean: I love the diversity and playfulness of proposals in your circle, and I agree with you that there are flaws in these various strategies. Even those of us in medicine don't have good solutions. We are still struggling with what to do if and when we enter what Katy Butler calls the gray zone—that limbo between life and death in which we can no longer interact with our loved ones, and may not even be aware or able to do the simple tasks needed to keep ourselves alive. ⁵ As pediatric oncologist and ethicist Dr. Ray Barfield says, medicine at the end too often focuses on life as matter in motion, a biology-based notion of what life is. ⁶

I have struggled too. My mother, with progressive dementia, got a urinary tract infection. Although I had decisional authority, I needed to consult my two brothers. They couldn't imagine NOT treating, even though they knew her dementia was progressing and she was suffering. Since all the women in our lives had had urine infections that were easily treated, they wanted her to get antibiotics. A few weeks after we treated her, one of them called me and said, “I think I get it now. Next time perhaps we shouldn't treat, but just make her comfortable.” We don't understand that these are choices—ones that have different weights in differing circumstances!

Cari: In my clinical practice, we created the Most Important Bucket Tool to stimulate conversation with patients and families. It helps as we think about what to do with the finite time, energy, and resources available each day as illness progresses. We help identify what matters and how to pour more into the Most Important bucket and identify what is not important and how to pour less into the Least Important bucket. This exercise helps clarify values in a concrete way.

Jean: Thinking about values is critically important especially as serious illness progresses. But a warning! Many of us adapt in ways we might not predict from our perspective today, so if you did this today, Most Important may change. That's one of the problems with written advance care planning forms—we are bad at predicting what we will want in the circumstances we find ourselves in near the end.

Cari: I understand, but my bigger worry is that if I start slipping and wait too long, I risk not having decisional capacity and my plan to avoid hospitalizations, resuscitation, and antibiotics in the event of advanced dementia is in jeopardy from overeager physicians and wavering surrogates.

Jean: Even specific orders to avoid the interventions you describe (Physician Orders for Life-Sustaining Treatment—POLST forms) ⁷ can stress decision makers. But for me and many of our friends and colleagues, I think a bigger problem is the lack of ability for our families or providers to assist our dying. In the United States, I cannot actively end my life if I have dementia, even if those around me know that I would not want to live this way. This is true even though laws authorizing medical aid in dying (MAID) have been passed in several states, including ours.

Cari: Yes, many of the friends I spoke with were falsely reassured that administering a lethal dose of medication would be an option. They were not aware that these laws uniformly require intact cognition and life expectancy of six months or less to qualify—which precludes applicability in dementia. In some countries such as the Netherlands, physicians may prescribe and administer life-ending medication if patients make a voluntary and well-considered request for assisted death in the future as specified in an advance euthanasia directive. In this country, intact cognition is required, both when requesting and self-administering meds.

Jean: Given that we can't be assisted in dying, how is your specific plan going to play out practically?

Cari: Friends, family members, and colleagues are on high alert to notify me when I demonstrate signs of memory loss beyond that of normal aging. The moment I'm made aware of such concern, I will obtain formal neuropsychiatric testing. I will be sure that my medical durable power of attorney (MDPOA) is clear on her role. I'll complete my state's POLST form with her and my provider, and I will film a video declaration that demonstrates my wishes for no hospitalizations, antibiotics, or resuscitation and that indicates a trigger for activation of my refusal of medications that may extend my life. Research suggests that the video will help my medical decision makers push against a medical establishment that may want to do more than I would want. ⁸ I may still be quite physically well when my decisional abilities wane. This means that it may make my MDPOA uncomfortable when I say that I would not want antibiotics or hospitalizations only if I would have unbearable suffering without these treatments. Thus, it will be very important for me to involve my MDPOA in all of these steps, which will include rich conversations about my care preferences.

Jean: Early cognitive decline is such a gray area. I like your “Now” plans (Table 1), and mine are quite similar, and converting your wishes into a POLST order form is an appropriate step when you and others see you slipping. This may help relieve some of the stress for those who will be making medical decisions for you at the point when you can't. So, it is legal for you or your MDPOA to refuse interventions or to not start them—even if they might be life-extending. But you've got another trick up your sleeve?

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Table 1.

Plan Organized by Stage

Timing	Cari's plan	Jean's plan
Now	1. Complete an advance directive (give to family/friends for storage in multiple easily accessed locations) a. Name MDPOA (spouse first and a dear friend who is a physician as alternate) b. Describe what matters most to me	1. Assign an MDPOA and backups. a. Outline my wishes and values b. Share wishes and values not only with my MDPOAs but also others who will need to support both them and me
At the first sign of memory loss	1. Film a video to verbally declare my values 2. Complete a POLST form and be sure MDPOA is on board 3. Use formal testing to detect and monitor dementia 4. Identify a caregiver with hospice experience 5. Antibiotics and hospitalizations ONLY for unbearable suffering	1. Let my loved ones know that my values are clear, but that there are too many variables to be able to dictate my ending. Recognize the task of making decisions as difficult, so I will respect their choices—although they need to be within my framework. 2. Complete an advance directive for dementia. 7 Be sure that my loved ones understand that life without being able to laugh, experience joy, or interact with those I love is not a life to me.
Unable to live independently because of cognitive deficits or requiring more than two hours of daily assistance with care due to cognitive deficits.	1. Stop taking my life-prolonging medications and any interventions for acute illnesses 2. Document physical function, weight, and symptoms to justify hospice eligibility 3. Keep an emergency medication kit at home 4. Enroll in a hospice when life expectancy is less than six months	1. Be clear that keeping me comfortable and avoiding hospitalizations and treatments that only cause discomfort or extend biological life are priorities to be used to measure any interventions proposed by the health care profession. 2. Fill out a POLST form clarifying no resuscitation and treatments based on comfort only.

MDPOA, medical durable power of attorney; POLST, Physician Orders for Life-Sustaining Treatment.

Cari: Yes. I understand that people with dementia can have a good quality of life for years after diagnosis, and I saw my grandmother dancing to her big band tunes for a decade after she moved into a dementia care facility; but I have thought a great deal about what matters to me and I have identified a trigger that will indicate to me that the balance has tipped to a state I wish to avoid based on my clinical experience. Of course, I could not expect caregivers to execute a plan to help me actively end my life given that it's illegal. However, I have a relatively unique situation that allows me to passively compress my time with dementia. I do not have a thyroid gland and it turns out that thyroid could at some point serve as a life-prolonging medication. I've defined my threshold for stopping this medication as the point when I cannot live independently or require more than two hours a day of assistance due to cognitive deficits. This will be the sign that my executive function has declined to a point that I can no longer tolerate. At this point, my MDPOA is to stop my thyroid medication.

Over the course of months, this lack of thyroid hormone will result in my death. It's impossible to know how I will fare during this process. I likely won't feel well as my body slows down—but my MDPOA and I have the right to refuse life-prolonging medications, and I will have an emergency kit of medications available to my caregiver in the event distressing symptoms arise. In addition, I will have identified a caregiver with hospice experience (when I'm initially diagnosed) who understands my values and will be guided by my MDPOA, video declaration, and written documents. The caregiver will importantly document my medical status repeatedly such that when a case can be made that my death can be expected within six months, I can be enrolled in a hospice.

So, taken together, Table 1 shows the plan organized by stage.

Jean: Your plan is complex and specific to you, but it has certainly provoked my planning! You can see what I did to map my strategies at similar stages, but I have a couple of important pushbacks: 1.

Your desire to be in control—very common in our current society—is incredibly strong. I'm not as sure as you are that I know what I will want near the end, and I'm willing to be with the mystery of how I will die.

2.

I want to trust my community of loved ones and empower them to care for me, thereby thinking about their own end and their choices. In fact, as a teacher, I want them to learn from my dying about how they want to approach their own dying and future policy. The next generation will need to grapple with these issues even more. My own plan remains simpler, but more vague, and a bit riskier from your perspective.

Cari: I love that you're embracing the mystery and desire to educate others. My fear of burdening others is powerful and drives much of this complex plan. When I mentioned to friends that I was developing a plan, theirs were much less complex—but more likely to fail. Our system is designed to leave most people ill-equipped for a fate they may wish to avoid. What I do know is that in the course of preparing my plan, I have sparked conversations, dispelled myths about MAID, and provoked friends to refine their plans—for better or worse.

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FIG. 1.

Fill Your Bucket Tool used to facilitate discussions about what matters most and what matters least in cases of serious illness.

Jean: In the end, it seems that our plans are really not that far apart! I think I trust more in others, and for you, control is more important. We are both very sensitive to the way things can go awry in the health care system. Perhaps I have more hope that the pendulum is swinging back toward more conversation about when and how to deploy our technology near the end of life, and I feel I want to stay humble about the mystery near the end of life. The bottom line is that we've both thought a lot about this as we've seen the good, the bad, and the ugly of how deaths have played out during our careers. This dying business is complicated and we only have so much control, but I think we both agree that when it's all said and done, we want our values honored, even if we can't express them in the moment, and to avoid placing undue burdens on those we love.

Cari: Agreed. This conversation also reminds me of why I enjoy practicing in the field of palliative care—focusing on the finiteness of our lives sharpens the focus on what matters now. With that, we leave you with these words from Mary Oliver…

Tell me, what is it you plan to do with your one wild and precious life?

Mary Oliver