So far in my life, I’ve been at the deathbed of four elder loved ones and have been privileged to witness the moment of each person’s last breath. In only one of these four cases was the deceased able to die under optimal circumstances of his/her own choosing.
At the time of all four deaths, I was living in North Carolina and considering moving elsewhere. In 2012, I relocated to Oregon; one of the main factors influencing my decision was the state’s Death with Dignity Act, enacted 15 years earlier. I am by choice both single and childless, and having personally experienced the painful consequences wrought by a broken health-care system, I wanted to live in a place where, if at all possible, I alone could call the shots on when and how to end my life when faced with an unsolvable, unmanageable, and intolerable medical crisis.
I’ve always believed I had a handle on my own end-of-life planning, that is, until I read Finish Strong: Putting Your Priorities First at Life’s End by clinician, policymaker, and advocate Barbara Coombs Lee, president of the nonprofit Compassion & Choices. By her own account and as someone directly responsible for helping to draft and pass that vital piece of Oregon legislation, she has “made a lifetime study of how Americans die. And the truth is that dying in America is a terrible mess.” I couldn’t agree more. Making my way through this extremely informative book showed me just how much I had to learn about the important issues involved in ensuring humane and compassionate end-of-life care for myself and others.
For one thing, Coombs Lee makes the compelling case that “patient-centered care” –– in which health-care providers’ protocols are determined by and tailored to the individual patient’s history, preferences, needs, and concerns –– is necessary but not sufficient to guarantee a person’s meaningful and satisfactory final days. That goal requires “patient-driven care,” which places the patient “in charge of the doctor-patient relationship” and in control of ultimate decision-making, including the rejection of medical interventions that would needlessly prolong suffering. She explains the benefits of “slow medicine,” which takes advantage of the body’s natural ability to repair itself if left more to its own devices, and she highlights the importance of palliative medicine in managing all stages of chronic illness and not just at the end of life.
“[A]ll of us,” Coombs Lee writes, “have the right to control the pace and intensity of our own medical treatment; all of us are entitled to make decisions about our own health care as illness advances and we become frailer and weaker. It is within our power to make an honest assessment of our own life force, our own viriditas, and to determine what nourishes and sustains it as well as what diminishes and drains it.”
These are powerful words, and Coombs Lee knows what she’s talking about. Her experiences as a trauma nurse, physician assistant, and attorney allow her to back up her points with vivid personal accounts of how people of all ages, including children, experience an immensely dysfunctional health-care system that considers death as a failure; often operates in a ruthless, for-profit environment; fears malpractice suits; and tends to over-treat using futile, high-tech measures. Lee counterbalances these stories with inspiring ones about other patients who successfully cope with their own impending deaths by making life-affirming choices to heal and thrive, rather than make futile attempts to recover from and cure their conditions.
According to Coombs Lee, choosing to heal and thrive, even as we are living our last days, is a heroic act, involving “the conscious recognition that a life has been completed and the time has come to die.” She convincingly argues for removing the social stigma of cowardice in the decision to let go and explains the vital importance of communicating such a decision clearly and often to one’s health-care providers and loved ones.
This alternative approach reflects the book’s central theme: the need to see the quality of life as inseparable from the quality of death. Coombs Lee encourages readers to embrace this view by interspersing within the chapters extremely useful checklists for such tasks as choosing a “partner doctor,” deciding on whether or not to undergo a test or treatment, understanding the benefits and limitations of an Advanced Directive, and choosing a hospice program.
But she doesn’t stop there. “We deserve a home stretch that’s in keeping with the lives we’ve led,” Coombs Lee asserts. “We can ensure that the final phase of our lives reflects and upholds the values we cherish and the beliefs we hold.” She further invites readers “to join the movement for autonomy over how we live as we age,” encouraging them to advocate for ethical end-of-life care and to become involved with organizations such as Compassion & Choices.
Reading Finish Strong made me wish that I had access to it years ago as I cared for my loved ones in their final days. The good news is that I’ve learned a great deal from it now and can apply that knowledge going forward.
I highly recommend reading this book so that you can, too.