Summary
- Conversations with family members about what matters to them, in their lives and in their health care, have helped IHI’s Pierre Barker, MD to understand and act on their wishes.
I have had the privilege of being at the side of my father, my mother, and my mother-in-law during the last weeks and days of their lives. Although I am a physician, my medical training didn’t fully prepare me for these moments. The insights and skills provided to me by The Conversation Project and the Age-Friendly Health Systems movement have helped me profoundly when having important conversations about what matters to my family members ahead of and during these critical times. Here are some of the lessons I’ve learned.
Take the opportunity to have the conversation
My father died too young. In 1999, at the age of 72, he was a physician in full stride. One day while performing surgery he collapsed. Six weeks later he died.
Three months before, my father had prostate surgery. I had travelled from the US to South Africa to see him during his recovery. We spoke about many things, but despite the serious medical challenges he was facing, we never spoke about his hopes for the rest of his life, and how it might end. As much as we talked about anything and everything, I didn’t think to ask what really mattered to him and what a good ending might look like for him. I know he’d have loved to have that conversation, and it would have made a huge difference to what unfolded over the next few weeks.
Following his collapse, blood tests showed that my father was in kidney failure. He was taken by ambulance from his beloved home, admitted to hospital, and started dialysis. A long and painful search failed to uncover the cause of his decline. In his final weeks, before he slipped into a fog of confusion, he said to me, “Let me go. You can’t make me better.” It was too late to ask, “Where would you prefer to be at the end of your life?” I know for sure the answer would have been, “In my bedroom at home, looking out the window over the palm fronds in the garden with you all nearby.” Our family members were all in the room with him at the end, but he only had four hours of peace after the myriad of tubing was removed, the dialysis machine was switched off, and he received enough morphine to make him more comfortable. There were no palm fronds to see from his hospital bed.
In addition to the pain of losing my father, I regretted not giving him the ending that I’m sure he would have asked for, if I had just created that opening for him. A conversation in the calm daylight of an unpressured interaction would have let him share a set of clear wishes for us to follow.
Have conversations with the whole care team
Fast forward to 2018. My 89-year-old mother — a painter, chef, and poet — had a heart attack that left her weak and barely mobile. This time, thanks in part to resources from The Conversation Project, we’d already had the conversation. She had declared that if she was ill and I was away then she preferred being in the hospital, but if she was dying, she would want to be home with me and my siblings there.
Nine months after her heart attack, she had a urinary tract infection that did not respond to treatment. She stopped eating, and did not get out of bed again. As my siblings and I gathered to comfort and care for her, we struggled to communicate her wishes to her primary care doctor, who wanted to start her on intravenous (IV) fluids and IV antibiotics. We turned to hospice carers, experienced in accompanying people through the end of life, who helped us to give my mother the ending she’d asked for. I learned that in addition to having a conversation with me about her wishes, my mother needed to have conversations with her health care team, too.
Continue having conversations over time
Soon after, my mother-in-law, June, a retired human resources specialist who was universally loved, started slipping into heart failure. The doctors recommended a heart valve replacement using a catheter that passed from her leg to her heart (TAVR).
Mechanically, this was fairly straightforward. No surgery was required. However, I knew this would be an ordeal for this determined but frail octogenarian.
“Tell me,” I asked, “What are your dreams for the next five years? What really matters to you that you would take this risk?”
Her reply was clear: “I will do anything for another five years with my grandchildren, and I want to be able to do my daily brisk walk along the seafront.” The procedure went forward.
Technically the new valve worked perfectly, but she had a prolonged stay in the intensive care unit. Worse still, her left leg was injured during the procedure, leaving her walking painfully and with a limp. While her grandchildren flew in to see her, she never again walked along the seafront.
Five years later, more hospitalizations prompted another conversation. By this time, she had instructions posted on her front door, on the refrigerator, and on her vanity: “Do not take me to hospital under any circumstances.” She also sat down with her doctor, saying expressly, “I’ve had enough, please don’t ever put me in the hospital.” Weeks later, she had an irregular heartbeat and a likely stroke. No ambulance was called. We sat with her, as she had asked, keeping her comfortable around the clock for the last week of her life.
Follow the lead of the person you care for
For years, I’ve been in conversation with my 95-year-old aunt Maire, the last living family member of my parents’ generation. She is dodging a litany of medical events that could bring her life to a close. Her playful, often-stated wish is to live “forever.” I’ve been supporting her to use the 4Ms (What Matters, Medication, Mentation, Mobility) as a framework to make sure she gives herself the best chance to keep herself in the best shape and to be able to communicate with her doctors and carers.
Maire extracts her quality of life and meaning from her everyday interactions with her daughter, carers and visitors. She lives independently in her modest home. As a retired therapist and sometime Buddhist, what matters to her is that she and I (and her frequent visitors) have meaningful conversations about the world and life. We are discussing what her perfect ending would look like, gauging her readiness to think about what comes next, and having conversations with her doctor, too. Last week she said, “Yes, we do need to talk about the ending.”
The conversations continue.
Have your own conversations
This blog has prompted me to think about the conversations about my own wishes about the end of my life. I have documented in great detail a decision tree of medical support (and withholding of support) for almost everything I can think of, should I be incapable of making decisions. But I have yet to broach the conversation about what I truly want for that perfect ending. Perhaps it’s the one time that I should follow the adage “Physician, heal thyself”!
Pierre M. Barker, MD, MBChB, is Chief Scientific Officer at the Institute for Healthcare Improvement (IHI).
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