Advance care planning for dementia: a case study–Part 1

Harvard Law’s Petrie-Flom Center publishes a blog – Bill of Health – which generously has allowed cross-posting with this blog.  A recent article at Bill of Health by Rebecca Dresser, “Dementia, Disability, and Advance Medical Directives,” argues that we should not allow our competent selves to decide in advance that we do not want to live if we become demented.  Her arguments deserve a critical look.

Rebecca Dresser is a recognized expert in biomedical ethics. She has taught law and medical students about legal and ethical issues in end-of-life care, biomedical research, and related topics. She has written extensively in her field and is the co-author of a casebook on bioethics and law and a book on the ethical treatment of animals. She is the sole author of Silent Partners: Human Subjects and Research Ethics. She is on the faculty at Washington University School of Law in St. Louis.

Dresser’s analysis begins by stating that advance care planning for dementia can be more complex and difficult than is acknowledged by most advance directives advocates.  She argues that “people usually live for many years after a dementia diagnosis, years in which meaningful and satisfying life can continue. People can’t be sure how they will fare as dementia patients . . .”  She suggests that because dementia patients can adapt to their new circumstances, they must, therefore, be allowed to accept this new life.

What this argument ignores is that such patients have little choice about adapting if they live with dementia.  They have only two other choices: to choose their type of living environment, or to die.  Once a person has advanced beyond mild dementia, generally, they are not considered competent to make such decisions.  If they have done advance care planning without instructions for a hastened death, they might have provided living environment options for their demented selves, which are limited to full-time home care, if they can afford it, or various alternative living arrangements, from group homes (which vary in size) to special sections of nursing homes or assisted living facilities that are called by various names, such as Alzheimer’s units or “memory care” units.  

Of course, advance care planning can go only so far.  We cannot account for all that might happen in the future.  This is why it is necessary to appoint, in advance, someone who can make decisions for us, guided by broadly, to narrowly, stated wishes and the good judgment of our agent.

I will use my late father as a case study.  Both he and my mother had completed advance directives in the mid-1990s that provided for no extraordinary medical treatments other than comfort care in the event of terminal or irreversible illness and named me as their health care agent or surrogate if they became unable to make health care decisions for themselves. 

Dad had Alzheimer’s, the most common type of dementia, for 15 years before his death.  For the first ten years, my mother was able to manage his progressive dementia.  When she reached the limits of her ability, they lived with my spouse and me and received support from both of us while enjoying the frequent presence of their 3-year-old great granddaughter.  By the time Mother died, Dad was unable to remember that she was dead.  I learned quickly that when he asked where she was, it was better to divert his attention to another subject or otherwise deflect the question.  Telling him that mother was dead each time he asked about her would only make him grieve again and would be cruel.

When Mother developed serious heart problems at age 87, we needed to have help because we were both still working full-time, though eventually I was able to cut back my law practice to provide more time to look after them.  Fortunately, part of my parents’ advance care planning was using their retirement benefits to pay for needed help.  After mother’s heart problems, we contracted for live-in caregivers and hospice services.  When Mother died at age 88, we ceased using the live-in caregivers and began adjusting to caring only for my dad.  That lasted only ten days.  Dad fell in his bedroom and broke a hip.  After surgery to repair the hip, and a stint in rehab, we again contracted for live-in help.

This arrangement worked reasonably well until two months later, when Dad fell and broke his other hip during a few-second lapse when the hired caregiver left him at the breakfast table and he got up from his chair to go to the refrigerator, forgetting that he could not walk unassisted.

More care planning ensued, during which time I explored every kind of alarm system that was available.  I eventually attached a seat belt alarm to his wheel chair and another alarm to his pajama top and his pillow (or to his shirt collar and the chair he sat in) so that if he started to get up on his own, the alarm would be activated and give someone about ten seconds to respond to keep him from further injuring himself.  He qualified for hospice care, which meant a certified caregiver bathed him three times a week and he had occasional visits by other hospice staff.

After Dad’s first hip surgery, he required a permanent Foley catheter and urine collection bag, which was attached to his lower leg.  About a year later, we noticed that the catheter tubing had starting splitting the end of his penis, necessitating surgically implanting a suprapubic catheter, which went through his skin in the pubic area and into his bladder.

Eventually, Dad’s financial resources began getting low, to a point that we had to consider less expensive options.  After looking at more than a half-dozen facilities, a group home for Alzheimer’s patients opened near us.  Before Dad’s first broken hip, when Mother was still alive, he and I had visited one of their facilities in a nearby community, so I was familiar with their operation.  The facility had 16 beds, a nurse, a social worker, and assorted other caregivers.  The cost was about two-thirds of what hiring outside help had been, so it saved Dad money and was less than ten minutes from our home.  I was able to visit almost every day, sometimes accompanied by his great granddaughter, who enjoyed drawing pictures for him and other residents.

This situation lasted for about 16 months, until Dad’s death at age 94 from complications of Alzheimer’s.  During this period, he was admitted to a hospital twice for urinary tract infections.  During the first hospitalization, I learned about the availability of Posey bed enclosures, a nylon netting system stretched over a frame surrounding the bed, with numerous zippers that allow access to patients when access is needed, but prevent them from getting out of bed unassisted.  

The only other option for people like my dad is round-the-clock sitters, something that we arranged when he was at rehabilitation facilities after his two hip surgeries and during an earlier hospitalization.  I learned that some hospitals and the rehab facilities available to us, almost all of which are housed in nursing homes in our part of the country, often rely on less-than-successful methods to prevent dementia patients from further harming themselves.  When staffing is limited, which seemed always to be the case, dementia patients are at the mercy of these facilities.

Advance care planning is useful for stating one’s wishes in broad terms, but the variable details cannot be anticipated with complete accuracy.  My experience with my father and the experience of many others with dementia I have known have led me to conclude that I don’t want to adjust to dementia so that I might live the “meaningful and satisfying life” that Dresser prescribes for all dementia patients.  

I gladly cared for both my mother and father during their declining years.  This was a tradition of sorts in my family, something I experienced from the earliest days I can remember, but it is not what I choose for myself because for me that existence would not be meaningful, though it is possible that I could be satisfied, mainly because I would not have the mental capacity to contemplate satisfaction or non-satisfaction.  Without sufficient mental capacity, I would not be able to even contemplate what it means to live or die.  I would be reduced to the most elemental biological urges that require no thought.  Dresser’s words do not convince me that living through dementia is what I want for myself.

In the next part of this response to Dresser’s ideas, I’ll discuss some of her other assertions.