Advance care planning for dementia: a case study–Part 2

In part one of my response to Rebecca Dresser’s paper concerning advance care planning for dementia patients, I used my father’s experience with dementia (he had Alzheimer’s for fifteen years) as a case study, to explain why I would not want to live into the advanced stages of dementia.  Without question, during the early to middle stages of dementia, there is some mental capacity, enough perhaps to enjoy living.  I have written about my father’s sense of humor in those early days, which lasted about two-thirds of the way through the disease.  

The Alzheimer’s Association describes stages of the disease, which were substantially accurate for my father, as well as for others I have known:

In the early stage of Alzheimer’s, a person may function independently. He or she may still drive, work and be part of social activities. Despite this, the person may feel as if he or she is having memory lapses, such as forgetting familiar words or the location of everyday objects.

Friends, family or others close to the individual begin to notice difficulties. During a detailed medical interview, doctors may be able to detect problems in memory or concentration. Common difficulties include:

•  Problems coming up with the right word or name

•  Trouble remembering names when introduced to new people

•  Challenges performing tasks in social or work settings.

•  Forgetting material that one has just read

•  Losing or misplacing a valuable object

•  Increasing trouble with planning or organizing

. . . During the moderate stage of Alzheimer’s, individuals may have greater difficulty performing tasks such as paying bills, but they may still remember significant details about their life. . . .

At this point, symptoms will be noticeable to others and may include:

•  Forgetfulness of events or about one’s own personal history

•  Feeling moody or withdrawn, especially in socially or mentally challenging situations

•  Being unable to recall their own address or telephone number or the high school or college from which they graduated

•  Confusion about where they are or what day it is

•  The need for help choosing proper clothing for the season or the occasion

•  Trouble controlling bladder and bowels in some individuals

•  Changes in sleep patterns, such as sleeping during the day and becoming restless at night

•  An increased risk of wandering and becoming lost

•  Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, significant personality changes may take place and individuals need extensive help with daily activities.

At this stage, individuals may:

•  Need round-the-clock assistance with daily activities and personal care

•  Lose awareness of recent experiences as well as of their surroundings

•  Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow

•  Have increasing difficulty communicating

•  Become vulnerable to infections, especially pneumonia

Knowing these descriptions of what to expect were I to have Alzheimer’s, and having observed the course of irreversible dementia over several years in my father and others, I consider myself adequately informed about the condition, something that Dresser claims is not true for most people who wish to cut their lives short in the face of dementia, but she provides no data to support her assertion.

To address Dresser’s contentions, some other basics about dementia should be considered.  There are at least four kinds of dementia, other than Alzheimer’s, and each has a different cause; but all forms of dementia result from dysfunction in the cerebral cortex, that part of the brain that performs a key role in memory, attention, perception, cognition, awareness, thought, language, and consciousness.

All forms of irreversible dementia have in common that they result in a nonreversible decline in mental functioning, usually with progressive memory loss, personality changes, and/or impaired reasoning that significantly interferes with daily life.  While the causes may be different, the practical outcome for each form of irreversible dementia is similar–eventually, dementia impairs the ability to carry out everyday activities such as driving, household chores, and personal care such as bathing, dressing, toileting, walking, preparing food, often eating, and even sitting, in some cases.

Dresser assumes that one’s “well-being” and “quality of life” are often misjudged by “even well-informed people” who are contemplating dementia in their future.  She relies on psychological research that suggests that people are not very good at predicting how they will feel in the future (“affective forecasting”).  This research assumes that what is important is what makes us happy.  But happiness and how I might otherwise feel is not what drives my decision-making.  In all likelihood, I would be a happy, completely demented person if I were given nothing but Texas barbeque and sausage to eat, along with vast quantities of banana nut ice cream.  Nevertheless, predicting our emotions in the future is not the main issue or most important in considering our future advance care planning.

Retired Harvard law professor emeritus Norman Cantor has his own reasons for not wanting to live all the way through dementia.  He first observes that “the central function of an advance directive” is to empower “a competent person to shape the medical fate of their future demented persona according to personal values and visions of intolerable indignity.”  He sums up his reasons for not wanting to live all the way through dementia:

This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction.  For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate.  In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.

For me, enjoying my life and wanting to continue living means that I have cognitive capacity sufficient to read political, legal, historical, and philosophical materials (along with the occasional novel) and think, talk, and write about them.  It means that I can have fulfilling relationships with my family and friends.  If I can’t do those things, I don’t want to continue to live.  Unlike other kinds of disabilities, to which I have adjusted reasonably well, dementia would inevitably rob me of abilities that make my life worth living.

Dresser writes in another article that one branch of psychology–positive psychology–suggests that there are five components of happiness: pleasure, engagement (with some sort of challenging task), relationships, meaning, and accomplishment.  It appears to me that only the pleasure category, to a limited extent, would seem to contribute to Dresser’s view of happiness for a person who is in the final stage of dementia.

Dresser makes one other assertion that I believe is entirely incorrect and for which she offers no evidence in support, namely, that demented persons “can still value and appreciate the lives that they are leading.”  The very nature of the last stage of Alzheimer’s and most other dementias suggests that the cognitive ability necessary for appreciation of one’s circumstances has disappeared.  We lose self-reflection, at least to the extent exhibited by most people who are not affected by dementia, though we may respond in a limited way to familiar music or smells.  See The Neuropsychology of Attention, Second Edition (2014), by Richard A. Cohen.

Finally, Dresser asserts that honoring advance directives that call for being allowed to die, whether by foregoing medical treatment or stopping eating and drinking, conflicts “with generally accepted views of our obligations to vulnerable people.”  Dresser believes “our moral and legal duties to safeguard the interests of people living with disabilities, support setting limits on the power of advance directives to control the care dementia patients receive” and should override their advance directives.  

In making these assertions, Dresser ignores the very purpose of such directives, which is to allow all competent persons to decide about their medical care at the end of life and appoint a surrogate to assure that such directives are followed if they no longer possess decision-making capacity.  Dresser asserts that the beliefs and values she sees as predominant in our society should have greater weight than our own decisions about our lives.

By the late 1980s, most states had adopted advance directive laws that recognized the right to direct one’s medical care and treatment.  This position was solidified by the 1990 Cruzan decision, in which the Supreme Court concluded that “[t]he principle that a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment may be inferred from our prior decisions.”  This right extends to incompetent persons if their wishes can be reasonably ascertained under appropriate state standards, such as by clear and convincing evidence, for example.  A written directive should provide that evidence.

The refusal of unwanted treatment happens regularly with competent cancer patients who refuse treatment.  Likewise, we can refuse treatment for treatable conditions such as pneumonia, and we can refuse to be maintained on “life support.”  As Cantor has observed, moral claims such as those raised by Dresser “are both unconvincing and counter to the prevailing legal frameworks.”  In addition, failing to follow the explicit medical instructions in a person’s advance directive may be tortious conduct with legal remedies, and would be, in my opinion, immoral.

Professor Dresser is simply wrong when she suggests that our constitutional right to execute advance directives and have them followed, even if it will result in our death, should be over-ridden by third parties.  The autonomy to decide the course of our life and death is our decision.  It should not be that of any other person or group.