Bill Newman: Difficult vital decisions at life’s end



Last modified: Tuesday, August 11, 2015

NORTHAMPTON — My mother was seated comfortably in a favorite chair by her bedroom window that overlooked the snow-dusted fields and stands of evergreens behind the Lathrop Community in Easthampton. The gentle late afternoon light of that warm-for-winter day filled the room. Her oncologist was seated on the hassock beside her — a woman doctor who was accomplished, kind, direct, experienced and pretty — my mother liked all that.

I was listening intently. Their conversation sounded calm, logical and intensely human. At the same time, to me it felt surreal.

My mom was suffering from multiple myeloma. She had been receiving chemotherapy for a couple years. Did she want to continue treatment that was having less effect — that was the question.

The choices seemed stark. If she didn’t continue, she would die relatively soon. Although for a few weeks she’d likely feel better physically than she had in a long time — thanks to the cessation of the chemo — after that, the cancer would take over. If she did continue, she would spend three or four days each week in bed, feeling exhausted, becoming increasingly weaker while she recovered from the chemical infusion, but she would most likely live a little longer.

My mother told the doctor she didn’t want to be bed-bound or unable to participate in life. She asked whether the doctor could guarantee — could promise — that she would not suffer if she stopped treatment. She did not want to be in pain. The doctor made that promise. Near the end of the conversation my mother told the doctor that she really did not want to live a life that for her was not worth living.

The doctor held her hand. I held her hand.

There was another problem. Although my mom could be totally present and lucid in the moment, as she was during that conversation, her short-term memory had short-circuited. Ten minutes after that conversation, she would not remember it.

She understood that her memory had deserted her. “I remember the important things,” she would insist from time to time, and some she did. But in some ways the dementia was even crueler than the cancer.

As I walked the doctor to the door, I focused on time — something that throughout our lives we spend and save with abandon until something huge — like impending death — shakes us upside down, tumbles our world view and forces us to appreciate its short and finite nature.

My mother wanted to live to see her first granddaughter, my elder daughter, marry the next fall. What are the odds of that? I wanted to know. In truth, I already knew the answer. I was searching for a reprieve.

My wife, our daughters and I were with my mom when she passed less than two months later.

That was three and a half years ago. I still think about her and my dad, who died six years earlier, almost every day.

Recently reading Dr. Atul Gawande’s book “Being Mortal: Medicine and What Matters in the End” has vividly conjured that memory of sitting with my mom and the doctor. Gawande quotes Philip Roth, who in his novel “Everyman” says, “Old age is not a battle. It’s a massacre.” Gawande debunks our “prevailing fantasy .... that we can be ageless” and castigates the myopia induced by “veneration of the independent self” that prevents many of us from facing or planning for “the decline we will unavoidably face.”

Dr. Gawande believes that medicine often fails people in the waning days of life by prescribing treatments “that addle our brains and sap our bodies for a sliver’s chance of benefit.” He acknowledges that decisions about end-of-life treatment put in sharp relief the tension between “prolonging suffering” and “the mistake of shortening valued life.”

But most of the mental agony — and physical, too — he says, can be avoided if the patient has had honest — and, yes, difficult — conversations with her doctor and her loved ones about what drugs and interventions she wants – or doesn’t.

Too late we had that conversation with my mom, but at least we had it.

And I am grateful we did, for that conversation showed me that my mom, compromised as she was, appreciated what it means to be mortal.

She accepted that life is finite and though I know the thought of death made her sad, to be able — to the extent possible — to face it with equanimity, on her own terms and in her own time — she saw that as a blessing.

Though not traditionally religious, she had a spiritual side and believed that after her death in some way she would again see her father, who died when she was a little over 3 years old. Maybe that belief helped ease her passing.

My mother was a dancer. She studied with Martha Graham at Bennington College, performed her senior thesis at the 92nd Street Y, choreographed for the Westchester Dance Players and later was trained and worked as a dance therapist. She loved dance.

The death notice in the paper in late March 2012 read, “Paul Taylor and the Paul Taylor Dance Company mourn the loss of Carole K. Newman. Supporter and friend to all in the Taylor organization, Carole’s love of the dancers and dances was second to none. We dance this week in celebration of her life.”

Bill Newman is a Northampton lawyer, host of a WHMP weekday program and author of “When the War Came Home.” His column appears the first Saturday of the month. He can be reached at opinion@gazettenet.com.


 


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