My father didn't want to live if he had dementia. But then he had it

Sandeep Jauhar writes, "The kind of problems my siblings and me faced will only grow as the population grows older." Photo / File

OPINION:

My siblings and I were faced with a difficult decision two years ago when my father, who was suffering from dementia, died. We had to decide whose wishes we would follow for his medical care. My father's wishes from when he was younger

He was a highly-functioning, healthy geneticist? Or the simple, weak man that my father had grown into?

A predicament led me to reconsider my view on advance directives in end-of life care.

My father's health was declining for several months. He had lost weight and his appetite was steadily declining. He also had to wear diapers because he could not always get to the toilet in time. He had suddenly stopped talking and eating over the past week.

My older brother and myself, both doctors, began to administer fluids via an IV in his home, thinking he may be dehydrated. It didn't work. It didn't help.

Then v Now

In 2004, my father wrote a letter to a brother saying that, if my mother or I were to become'very ill', we would not want to take any extraordinary measures to keep us alive. He wrote, 'We only want to live if it's a meaningful existence.' My brother, in keeping with the directive my father gave when he was "of sound mind", said that we should stop giving my father IV fluids, and let him die peacefully.

I was hesitant. In 2004, my father would have found it difficult to live in a dementia-like state. He would have been unable to survive without intellectual stimulation if he had lived in a state of dementia.

My father did not seem to be unhappy despite his weak state. Over the course his illness, my father had never expressed an honest wish to die. In 2004, what was important to my father was different than what was important to him now. He was clearly enjoying watching television, spending time in his caretaker's company, and eating ice cream.

You could have thought that these pleasures were childish, and somehow beneath my father. Wasn't the man in front of me my father as well? I wondered why not give him antibiotics and continue with the IV fluids.

In one way or another, this is a dilemma that many families face. In the hospital where I work, nearly half of the 600 ethics consultations conducted last year were based on disagreements about advance directives. Renee McLeod Sordjan, head of the bioethics department, said that it happens every day.

As the population grows older, problems like those my siblings and me faced will increase. Estimated number of Americans with Alzheimer's disease

Alzheimer's disease or other forms of dementia

In about 25 years, the number of people with advance directives is expected to double. My father is not the only older American who will have advance directives. In many cases, those directives may seem to contradict the current wishes of older Americans.

The courts have generally ruled an advance directive is more important than a will because it is an expression of a person's wishes when they are presumably independent, rational and have the time to think about what they want. Isn't this a form of bias which could lower the moral standing of a patient in the future? Even if a person's wishes are formed during a period of cognitive impairment they must still be taken into consideration. How can you, as a son withhold treatment to your father, who is demented and appears to want life?

My brother used to say that my father lived a "plus-minus" life, which meant that everything he did was basically zero. In my darkest moments I also believed it. Perhaps we suffered more from our father's illness than he did. His world was smaller, but his wants, his perspectives, and his expectations about what made a good life had also shrunk. The man, who had craved respect and recognition more than anything else, no longer seemed concerned about these fickle rewards.

My brother told me that our father is no longer who he used to be. To me, my father was still the person he used to be, but he had changed.

"Minds change and people evolve"

After much discussion, my brother and a hospice nurse made the final decision to honor my father's advanced directive. This is the goal of palliative medicine. We stopped the IV fluids but did not begin antibiotics. We found out that our father had died a few days after.

I still struggle with what caregivers in this situation should do. A family conflict such as the one we experienced could be avoided by a directive that explicitly stated the opposite wishes of the 'future-self' should not have been heeded. However, this would still not solve the ethical dilemma.

Although courts may disagree, i no longer believe advance directives should be strictly followed in all situations. These directives are usually vague and can be a poor predictor of future attitudes and feelings. I think that the desire to live in the present, even if it is in someone with dementia, should be taken very seriously. We acknowledge that people and minds change over time in all aspects of life.

Families and caregivers must consider both the past and present wishes of an incapacitated person when deciding on what's in their best interest. It is best to have a surrogate who understands the patient's needs and wishes, preferably a family member chosen in advance by the patient. Social norms should reflect this one day.

On the journey of my father's illness I learned that contentment in life is compatible with cognitive impairment -- and the right to change your mind about what care you want at the end of life.

Sandeep Jauhar, a doctor with Northwell Health and author of

My Father's brain: Living in the shadow of Alzheimer's

This article was originally published in

The New York Times

.

Written by: Sandeep Jauhar

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