Imagine you’ve just been given the news of a life-limiting illness. The treatment will make you very ill—worse than you feel now—and offers a 16% chance of survival past your 6 week lifespan prognosis. What will you do? What facts do you need? Who do you want to aid your decision? What do you want the end of your life to look like? Beyond these questions, you are facing your mortality—a difficult pill to swallow. Participants in the A Life Well Lived, Even Facing Death Community Conversation wrestled with these questions. They discussed our cultural preferences for end of life care; social concerns; why the cost of end of life care in America outpaces other industrialized countries, and what it says about our culture; economic considerations; and things we can all do now to prepare ourselves for the end of life. Guests engaged in conversations in small groups, over a glass of wine or espresso, and listened to one another’s stories of grief and frustration. The Conversation encouraged us all to have courageous conversations about end of life with friends and family members, to consider the macroeconomic picture, and inspired us to live our lives to the fullest now so that, when the end is near, we can be at peace.
How, then, do we bring up this conversation with our friends and family? Experts suggested initiating this conversation when mortality is in the mind of your family—when a media story breaks or when a friend has a serious illness. Starters can include “When Grandma died, what was that like for you?” or “How would you complete this sentence: ‘What matters to me at the end of my life is….’” People also shared resources like Aging with Dignity and the Washington State Hospice and Palliative Care Organization.
Attendees identified barriers to talking about death including cultural beliefs, lack of appointment time with care providers, family and friends’ reluctance to squelch hope for a cure, patients’ reluctance to ‘give up,’ and the desire of care providers to succeed—that is to find a cure. When we came together as a large group of 45, it became apparent that two specific issues complicate The Conversation: the art of projecting patient prognoses—that is, how do you know when a treatment won’t help length or quality of life?, and the difficulty of recommending hospice care rather than aggressive medical treatments because ‘saying no feels like pinching out the wick of hope.’
We touched on finding the balance between the ethical principles of patient autonomy and social justice. In the United States especially, we want to give patients every opportunity to try any and all medical treatments, even if the treatments do not extend length or quality of life. This value is in tension with the social justice of managing public costs and scarce resources for medical care. One participant observed, “because we have an informed, invested public, the patient can find someone to treat them if they have enough resources and money.” Resolution of this quandary included more research and advocacy for treatments and approaches that support quality of life, such as palliative and hospice care, and tailored training for providers.
There is often no correct answer to the questions we have posed. However, at NWABR Community Conversations, we engage the public and professionals in these difficult, yet informing, discussions. Let’s consider Morrie Schwartz’s reflection on his journey with ALS. He has much to teach us about creating a meaningful death-and life-, insofar as we have control over it: “Everyone knows they’re going to die, but nobody believes it. If we did we would do things differently….We’d be prepared for it at any time. That’s better. That way you can actually be more involved in your life while you’re living (tuesdays with Morrie by Mitch Albom).” Take from this Conversation what you can, but we know that a life well lived is up to us every second, every minute, of everyday. Talk with your loved ones, speak with your doctors, and live your life to the fullest.
The NWABR Community Conversation series is sponsored in part by Institute of Translational Health Sciences and explores topics in biomedical science and its role in society, connecting people to the biomedical research community. Add your voice to an engaging and intimate discussion with other curious and open-minded individuals. Learning from each other, our goal is to advance more responsive and thoughtful biomedical research. Everyone is welcome.