On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.
David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones. As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity. Suddenly those decisions became radically more real.
For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.
We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”
Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.
Doctors are trained to view death as the enemy and to battle on until the end. At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”
Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.
He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.
David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.
Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”
At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.
What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”
Complete Article HERE!