My mother turned 85 last month. Sitting at lunch to celebrate, we had a conversation about how she wants to live this last chapter of her life, how she wants to die, and even what music she wants when people come together to say goodbye. Sound morbid? Actually, my mom called later that day to say thanks. I am grateful too. We assume that people are generally afraid to have this conversation and would like to avoid it at any price. But actually, most people have lots of thoughts and feelings on the topic and have already had the conversation – in their heads – umpteen times. And let’s be real, it’s not like talking about it aloud is giving away the plot – we already know we are all going to die.
How we want to live the last days of our lives and how we want to die is the costliest conversation – emotionally and financially – that we are not having as a nation. Fortunately, pioneering thinkers, policy makers and mental health professionals are speaking up and helping others do the same.
1. Where we die is out of whack with what we want. Seventy percent of Americans say they want to die at home, yet 70 percent of Americans are dying in hospitals and institutions. Why do people wind up in hospitals? Why is it difficult to leave the hospital once admitted? And why don’t we have sufficient support systems in place for people to stay at home during their final days? Of course, many things in life and death are out of our control, but these are important questions that we might be able to better answer and concerns we may better be able to anticipate if we engage in conversations more openly with loved ones.
2. Living wills usually don’t live up to expectations. Living wills usually don’t live up to expectations. Many people have prepared living wills, and most think that this will protect them from unwanted heroics at the end of their lives. But too frequently physicians don’t receive sufficient training to carry out living wills. And in fact, in the vast majority of cases, what patients request in their living wills ultimately is not honored – most often because by the time the living will is extracted from the home safety deposit box, medical tests and tubes are already in place.
3. POLST. While a living will is a legal document, Physician Orders for Life-Sustaining Treatment (POLST) is a doctor’s medical order. It goes in a patient’s medical record and contains the patient’s treatment preferences. Dr. Ken Brummel-Smith, Florida State University College of Medicine geriatrician and Health and Aging Policy Fellow, has been a long-time POLST champion. At its core, POLST is about having an honest, thoughtful conversation between doctor and patient. Doctors can then write standing orders that honor an individual’s wishes. Medical orders in patient charts direct care so POLST is actually much better at ensuring an individual’s wishes than living wills.
4. The Conversation Project. While legal and medical documents about end of life are important, the real catalyst for change is conversation. Aptly named, the Conversation Project provides a starter kit in 7 languages to help people initiate conversation with their loved ones about what they want their final days to be like, who they want to be near them, and what’s most important to them. They’ve even had some luck convincing TV writers to include family conversations about death in their scripts. A similar program, Death Over Dinner, invites us to gather family and friends to fill a dinner table and to cast an unflinching eye at end of life. Efforts like these take this taboo topic and create safe space for honest conversation.
5. When Breath Becomes Air. Paul Kalanithi’s New York Times bestseller was published posthumously. It is an honest, soul-searching memoir of a young neurosurgeon who went from ministering to patients to being one, overnight. Diagnosed with stage IV lung cancer at 36, he had to make life and death decisions about his own healthcare at much too young an age. His widow, Lucy, spoke at Columbia University this week to an audience that numbered many times the seats available. Interest in his and their story is a testament to our collective desire for real conversations about what makes for meaning in life and death.
So when you have had enough talk about politics for the day, maybe it’s time to begin a different conversation. It may change your life and your death.