Alzheimer's Disease affects three to four million Americans in their later years. It is estimated that 25% of people over 85 are suffering from Alzheimer's or other dementia.
If you are stricken with this disease, does your family know how you would wish to be cared for? The following article was written by Dr. Sterling Edwards, based on his personal experience with the disease within his own family.
Final Decisions
By Dr. Sterling Edwards
Dr. Sterling Edwards is a professor and chairman
emeritus of the Department of Surgery at the University of New
Mexico School of Medicine. In addition to his contributions to cardiology and surgery, he
is the author of numerous medical books and articles, including "Making the Patient
Your Partner," co-authored with Thomas G. Gorden. The book is designed to help
improve health professionals' communication with their patients.
WHEN MY MIND IS FAILING, LET MY BODY GO....
Some years ago I visited my parents, who lived in another town. Dad was then in his
mid-80s and had become progressively more forgetful. He'd gotten lost when he took a
walk near home, and he was no longer allowed to drive his car. As I walked into my
parents' apartment Dad looked at me and asked, "Who are you?"
Suddenly I found tears rolling down my face, and I realized later he died for me at
that moment.
Actually he lived on for several more years, the last four or five in a nursing home,
quite combative, requiring sedation. He was incontinent and had to be kept in
diapers. His care required all kinds of indignities I felt he would have hated. Once
or twice he developed pneumonia and was treated with antibiotics. I asked Mother if
she thought Dad would want to be kept alive like that, and she said she didn't know but
felt she could not make a decision to let him die.
A few years after Dad died at age 89, Mother also developed Alzheimer's disease, and
reached the stage where she couldn't care for herself. My sisters, who lived in the same
city, decided to care for Mother in her apartment with round-the-clock baby sitters.
Mother also became incontinent and could not speak or recognize anyone. She could
walk around her apartment and sit in front of a television set, which she did not watch.
When meals were offered her, she usually made no effort to eat and the aides spoon
fed her. She finally died several years ago at the age of 96 after 4 or 5 years of
home care. My two sisters did a wonderful job of supervising her care and keeping
her comfortable.
Planning Ahead
With such a family history, I find I'm much more afraid of dementia from Alzheimer's
disease or a stroke than I am of cancer or heart disease.
I occasionally visit friends in nursing homes, and seeing people dozing in wheelchairs or
being fed by nurses saddens me as well as creates anxiety. Now in my 75th year, my
memory for names and for recent events is not as good as it used to be. I open the
refrigerator door and can't remember for a moment what I was after.
In preparing my living will and a document giving a member of my family the durable power
of attorney for health-care decision, I've had to think about my own wishes, should I lose
cognitive functions as my parents did. The major decision I've made is that I don't
want to be kept alive when I have no mind to recognize or relate to others.
I do want pain relief or comfort care. But the main thing I don't want is the
little, non heroic measures that prolonged the mindless existence of my parents.
I don't want to be tube-fed if I can't eat or spoon-fed if I choose not to eat.
If I develop dementia, followed by cancer or heart disease or any other
life-threatening illness, I want no treatment at all except pain control.
I recently talked with many friends in their 60s and 70s and found that very few had
thought much at all about their wishes if they should reach an advanced stage of dementia
or have a stroke that leaves them unable to function as a rational being. By not
considering this possibility, we are unconsciously deciding we want our lives extended as
long as possible, regardless of our mental capacity, since we leave no advance directive
to guide physicians and other care givers.
A Poll of 142 Healthy Seniors
To study the problem further, I decided to take a poll of healthy senior citizens and a
few younger individuals to determine their thoughts and feelings about how they would want
to be treated should they develop severe dementia from Alzheimer's disease, stroke, or
head trauma.
One hundred and twenty-one individuals were willing to fill out the questionnaire after
aerobic classes at three different senior centers in Albuquerque. A little to my
surprise, they attacked the questionnaire vigorously, and many wrote lengthy comment at
the end. An additional 21 individuals, friends and acquaintances of mine, completed
the questionnaire without discussing it first. Many different careers were
represented among the respondents, and the average age was 67.
From my survey, I was surprised at the high percentage of individuals who wished to be
allowed to die of natural causes if dementia became severe. I had guessed the strong
will to live and the fear of death would have predominated in spite of crippling dementia.
If these wishes are common to a majority of the population, it becomes even more urgent
that every person prepare advance directives expressing their wishes while they are still
mentally competent.
Click to
view the results of the Opinion Poll
What happens when your body is healthy, but you no
longer recognize your family?
Most people have focused on whether or not to have heroic
measures such as CPR or artificial ventilation if their condition is irreversible.
We have failed for the most part to decide what we want in the situation of
irreversible loss of brain function. The one area where a health-care proxy may meet
resistance from professional care givers is the area of artificial hydration or nutrition
if it cannot be demonstrated that you have specific wishes. To ensure decisions can
continue to be made and carried out in this area, a specific statement should be included
so feeding tubes and intravenous fluids can be either refused or withdrawn if that if what
the patient would have wanted
Having seen how my parents were kept alive for several uncomfortable years by
spoon-feeding, I have added the following request: If I suffer severe loss of brain
function from Alzheimer's or stroke or any other cause, I want no artificial tube-feeding
or intravenous fluids. Each day I want food placed in front of me, but if I do not or
cannot feed myself, I wish not to be spoon-fed by someone else, nor helped to drink
liquids. I leave it up to my health-care proxy when this should start, but at least
no later than the time when I no longer know their name and a good internist and
neurologist have indicated they believe my condition is irreversible.
Quite frankly, I think I would consider suicide if I had the brain power left to carry it
out. But by the time I am ready to terminate my life, I won't know how to do it. I am
reluctant to ask one of my physicians to assist me in suicide as that would place a
stressful burden on him or her and would currently be asking them to break the law.
I don't mind asking that supplying nutrition and hydration by tube-feeding or
spoon-feeding be withheld, since this would allow death to occur by natural causes.
Contrary to most of our beliefs, death from hunger is not painful or even very
uncomfortable.
Physicians who are not directed otherwise will be likely to treat each patient vigorously,
trying to keep that individual alive as long as possible. I saw this happen with my
own two parents. This is the cause of my concern.
I have a Living Will. Why do I need anything more?
Many states will not accept living wills for dementia from stroke, head injury, chronic
vegetative state or Alzheimer's disease because they are not terminal illnesses.
Patients usually do not die of dementia but of some more destructive process such as
cancer or heart disease. Also, pain is usually not a symptom of dementia unless there is
another illness causing the pain.
The last consideration, but one that can be sticky, is the problem of relatives anxious
for the early inheritance of the patient's estate. Picking a trustworthy and loving health
proxy will usually prevent this from occurring. Since I wish for my life to end by natural
causes if I develop severe dementia, I think it is wise for me to have both a written
living will to document my desire not to be fed by tube, vein, or spoon feeding and a
health proxy to make other decisions, such as when to begin the processes stated in the
living will.
A Peaceful End
Alzheimer's disease usually comes on slowly, and care givers often can cope with these
early symptoms, but they will want to know the patient's wishes when the difficulties
become more severe. When I can no longer remember where I am, or the names of my
family members or friends, I wish these procedures to be started. My family, in an
open discussion with me, helped me write my living will and pick the family member to be
my proxy. I feel more relaxed and at peace having made my wishes known.