For more than five decades, Barbara Coombs Lee has worked in healthcare as a clinician, policymaker and advocate. Her indelible experiences as an ER and ICU nurse and physician assistant at the bedside of dying people forged a deep respect for individual values and beliefs, and eventually led her to a career in law and health policy. Barbara’s work in public policy culminated in her becoming the first leader of Compassion & Choices, the nation’s oldest and largest organization working to empower everyone to chart their end-of-life journey. Thousands of personal experiences and the teachings of scholars and thought leaders around the globe inform her perspective. She is a seasoned writer, speaker and commentator.
As someone with both an inside and outside view of the modern American medical world, Barbara’s passion for transforming the end-of-life experience — by informing and empowering patients — infuses the second edition of her book, Finish Strong: Putting Your Priorities First at Life’s End. She calls for all Americans to join a patient-driven movement to dismantle the institutional and cultural barriers to living well to the very end.
Question: How is Finish Strong different from other books that cover “aging in America”?
Barbara Coombs Lee: Finish Strong deals candidly with issues and experiences that other books covering aging avoid. It addresses fears and discusses ideas still o!en considered taboo.
Many journalists, doctors, bereaved spouses/adult children and even patients themselves, shocked or moved by their experience and newfound knowledge, are writing about America’s dysfunction in end-of-life care. Each of those books arises from its authors’ experiences. Each contributes to our national dialogue.
But up until now, no book has come with Finish Strong’s unique combination of 50+ years of firsthand experience in nursing, medicine, law, public policy and advocacy behind it to support its conclusions. This second edition of Finish Strong features valuable new material, including a new chapter called “Race and Culture Matter;” an Afterword by Kim Callinan, the President/CEO of Compassion & Choices; and a detailed index for the book. What distinguishes Finish Strong from other books is its abiding philosophy of individual autonomy and passionate conviction that individuals can be empowered to chart a course for themselves — and loved ones — that reduces suffering and reflects their personal values and beliefs.
Q: What does the title “Finish Strong” signify to you?
Barbara Coombs Lee: “Finish Strong” means we can be true to our priorities in life even as we near its end. We can stay strong, and resist a conveyor belt of futile tests and treatments that can steal precious time and diminish the quality of life.
Finishing strong will be different for different people. Upon learning they are nearing the end of life, some will examine their options carefully and decide to dedicate their final months to experimental and taxing treatment. Others may decide to spend precious energy focused on passing life lessons and values on to their heirs. But for those who choose to “finish strong,” the common thread will be a certain strength in knowing that treatment decisions were well-considered, and they honored the values and beliefs that gave meaning to the life that is ending.
Q: What led you to write this book?
Barbara Coombs Lee: Americans’ blind faith in medical authority, the common idea that doctors know best which tests and treatments we need, is about to undergo a sea change. The purpose of this book is to help people navigate and implement that change.
Though my political and legal work have differed from my clinical work in nearly every way, they resemble it in one respect: They offered intimate dialogue with people in the final stages of their lives. And so it would seem — although I never set out to do so — that I’ve made a lifetime study of how Americans die.
And the truth is that dying in America is a terrible mess. So, in essence, Finish Strong is my invitation to readers to join the movement for autonomy over how we live as we age.
Q: What touchy topics does Finish Strong address?
Barbara Coombs Lee: In addition to the question of how a person might escape advancing dementia with an intentional death (watch video answer at https://youtu.be/sM9X8udCJMo), Finish Strong discusses all available end-of-life options as a person transitions from treatments that attempt to cure, to treatments aimed at comfort and peace of mind. Experimental treatments, slow medicine, forgoing life-extending intervention, voluntarily stopping eating and drinking (VSED) and medical aid in dying are all here, and none are presented as better or worse than any other. This is an open-minded and nonjudgmental book.
It gives you the inside scoop on hospice care, advance directives, DNRs, doctor-patient relationships and what people really face at the end of life. It discusses frankly the roles of technology and religion in the context of the modern dying experience in America. And it offers alternative ways to bring sacred rituals and narratives into your last days to offer meaning and closure to you and your loved ones as you plan your life’s end.
Most importantly, this book candidly answers the questions you may have about the mysterious world of dying and anticipates questions you might not even know to ask. I have has seen it all, from many vantage points, and my goal is to share what I know with you so you are empowered to craft the end-of-life experience you want and deserve
Q: What is the one thing that you hope people take from Finish Strong?
Barbara Coombs Lee: I hope readers come away with a sense of their own authority — feeling empowered to ask questions, test assumptions and decide on a course of treatment that honors the character and meaning of their lives.