What Matters Most to You at the End of Life?
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 before his 70th.
David had endured several years of ill health, culminating in the removal of a cancerous kidney. In June, the month prior, we learned that the cancer had metastasized to his bones. As a couple, we wanted to make sure our 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 underwent two different rounds of chemotherapy, neither of which stopped the cancer that was destroying his bones and causing unimaginable pain. Radiation effected 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, always hopeful, nonetheless, 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 one fundamental question with each other: What matters most to you at the end of life?
The Conversation Project supports people in talking about this very topic – what matters most to them when it comes to end-of-life care. It is not about advanced medical directives or ethical wills. It focuses, rather, on encouraging open and direct communication among loved ones regarding our desires for medical care, how much we want to know about our medical situation, and where and how we would like to spend our final days. This initiative is an important first step in considering what each of us might value most if we have the luxury of knowing that our time is limited. What would a good enough day to want to go on look like, and where would be the tipping point, signaling we would be ready to let go? Of course, the answers will be different for each of us, but we must have the conversation now.
Per the Institute for Healthcare Improvement, 90% of people say that talking with their loved ones about end-of-life care is important, yet only 27% have done so. As a society, we are coming to understand that individuals have many issues of concern beyond prolonging life. As the director of the Deutsch Family Shalom Center at Temple Chai in Phoenix, AZ, I have seen the emerging cultural focus on quality of life at the end of days.
Recently, we hosted more than 100 individuals who courageously undertook the first steps to have the conversation. A congregational think tank, comprised primarily of physicians and hospice staff, worked with me to develop this program and served as small-group facilitators. We held a follow-up conversation, expanding the discussion to include “How to Talk to Your Doctor” and dialogue around financial, funeral, and burial planning. As the conversation continues, we’re planning for a panel of physicians to bravely and candidly address the question, “What would you do?” and offer options for continuing care communities and engaging adult children in the conversation.
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.
What a gift we give our family and loved ones when we ensure our financial affairs are in order, our burial arrangements are understood, and we have thoughtfully articulated our unique answer to that all important question, “What matters most to me at the end of life?”
For additional perspectives on this important topic, visit Jewish Sacred Aging, a forum for the Jewish communit, featuring resources and discussions around the implications of longevity for baby boomers and their families.