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My mother wanted a peaceful death at home. I nearly blew it for her.

19 July 2017

At my mother’s memorial service, lots of people asked to speak. While the details varied, there were important consistencies across all of the wonderful memories that were shared: her great warmth, infinite curiosity, pioneering spirit and utter inability to tell a joke.

But most of all, everyone in the standing-room-only crowd recalled my mother’s fierce independence and drive to do things “her way.” And nowhere was this drive better demonstrated than in her determination to go out on her own terms.

For this, she had needed my help, and I very nearly blew it.

When — just a few days after her 89th birthday — my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I knew to be her fervent wish: NO treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days in her New York apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple. Just days after the initial diagnosis, despite my mother’s long-standing and just-repeated wish, I found myself reluctantly taking the first step toward a life-prolonging surgery.

How had we ever come to even consider this?

The ‘limited’ option

For as long as I could remember, my mother had made it clear that she did not value longevity for longevity’s sake. Her greatest fear had always been living past the point when she felt good about being alive. “Can you believe it?” a friend or relative would sometimes exclaim in delight about a markedly diminished elderly relation. “She just celebrated her 96th birthday!” In response, my mother would shudder and reply that she hoped that she would not face a similar fate.

From the instant she learned about the mass, my mother told all the doctors who paraded by that she was really okay with the situation, as long as she could opt to do nothing about it and have a peaceful end when the time came. Though increasingly weak as her hospitalization wore on, she remained clearheaded and determined.

Nonetheless, on the fourth day in the hospital, a surgeon arrived at my mother’s bedside to discuss the risks and benefits of two surgical options for addressing the threat posed by the mass. One option was to remove the mass, while a second involved rerouting the intestine around the mass. Because the mass was growing slowly, the surgeon explained, and because there was no sign of cancer anywhere else, the mass could be left intact. In fact, the surgeon confidently pronounced my very frail mother an “excellent” candidate for this “limited’ option and predicted a “relatively insignificant recovery time with minimal pain and discomfort.”

But — oh, yes — there was one more thing worth mentioning: The “limited” option involved a colostomy. A hole would be created surgically in my mother’s belly, out of which stool would exit into a pouch. The surgeon assured us that with the new technologies and products that were available, my mother would adjust in no time. While he himself avoided the specifics, we learned this would include her having to change the bag, adjust her diet, perform the necessary skin care and live with anxieties about whether the bag would begin to smell, bulge visibly or soil her clothing.

When I asked what would happen if my mother declined surgery altogether, the surgeon provided a chilling answer. Forgoing surgery would cause her colon to rupture, resulting in sepsis, acute and possibly prolonged abdominal discomfort and eventually excruciating pain. He described in gruesome detail what would happen inside her body to cause this pain. No way would he ever let his mother suffer through that, he pronounced, horrified at the mere thought.

In the face of the surgeon’s unambiguous advice and the certainty he projected, our own certainty wavered. When the surgeon left the room, my mother began to weep silently. Her hope of a dignified death had been dashed. She was facing the possibility of choosing between excruciating pain or being one of the “lucky ones” who “get to live”— in an increasingly physically and cognitively feeble state — to 96!

For the full story visit Health Affairs.

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