I just finished Being Mortal by Atul Gawande. It was a tough read. I had to set it aside several times. But I’m on board with Dr. Gawande’s premise: the miracles of modern medicine have made it possible to extend life, ironically often sacrificing quality for quantity.
The first time my husband and I were faced with this incongruity was in 1984, when his mother, age 71, fell into a coma after what had been described as fairly simple surgery to repair a heart valve. We sat in the hospital ICU waiting room with his father for five interminable days watching in helpless despair as her condition deteriorated daily. The doctors proposed further procedures to lengthen her life. It was only after the ICU nurse told us that her brain had become basically nonfunctional because of constant seizures that we had to face the option of “pulling the plug.” She had left no advanced directive or DNR, so the decision was agonizing, awash with tears of guilt.
Twenty years later I was faced with that identical heartbreaking decision when I got a call from my stepmother that my father’s clothes had caught fire and he had been badly burned. I wasn’t prepared for what I would see when he came back to the ICU burn unit from surgery. The first thought I had was that he would never survive these third degree burns that covered at least a third of his body. He was deeply drugged and intubated and not responding to our words at all. It was déjà vu – like my mother in law, he had left no DNR. The doctors were pessimistic. Even if he “recovered” he would have months of horribly painful rehabilitation, and he would never live the life he had loved…being outdoors, playing with his dogs, just being active. He endured two skin graft procedures and lingered for three weeks in ICU, sustained by artificial means, until my stepmother and I finally decided to let go. I vividly remember on that day specifically telling the doctor as I burst into tears, “I feel like I’m killing him.” Looking back though, I think I would have felt more guilty if I had insisted on interminable measures that were obviously totally futile.
In February,2008, my adored mother began a journey entirely different from those taken by the others when she was diagnosed with small cell sarcoma, lung cancer, caused by decades of smoking. My research on the internet indicated she’d never survive the chemo her oncologist recommended, and at best, it wouldn’t extend her life much. I didn’t tell her…the internet isn’t always right. She embarked on the chemo with a positive attitude and hope, but after a couple of treatments, each increasingly more agonizing, the ER doctor brought up the possibility of palliative care in hospice, and she chose it unequivocally. In the following months, her siblings and cousins came to visit, she saw her loved ones almost daily, she ate and enjoyed delicious foods and celebrated Mother’s Day and her birthday, and despite her weakening condition, lived at home in comfort and enveloped in love. When our tears occasionally escaped in her presence, she reassured us that she did not regret her decision, and she died without pain in May.
In his book, Dr. Gawande recalls an elderly terminal patient faced with a life- prolonging surgery that could possibly lead to significant diminished capacity. Beforehand, his daughter wisely asked him how much of that diminished capacity he could live with. He replied that as long as he could eat chocolate ice cream and watch football, he’d be fine, but if he couldn’t, he wouldn’t want any further procedures. (He went on to live for quite a while, still able to eat ice cream and watch football.)
At age 70, I am finally realizing that I AM mortal, and I have already started thinking about how to make absolutely clear in writing to my family and doctors just how much diminished capacity and suffering I could accept. They might have to make the painful decision to let me go someday, because I won’t have the ability to do it. If I can’t write or at least communicate, if I can no longer remember those I love, or if I am in so much interminable pain I can think of nothing else, I don’t want to be here anymore. Don’t prod me, poke me, and open me up to extend a life that has already ended. I love life, but there are worse things than death.
My grandpa Tingley, after my grandma died, was a shell of a man. He descended into incapacity and constant fear that because of his “sins” he couldn’t join her in Heaven. He chose to stop eating. When offered the doctor’s option of a feeding tube, his children instead respected his wishes and allowed him to go on his own terms. That couldn’t have been easy. I hope my children are so courageous and loving.