Two years ago, I posted a blog, Inviting Doctors to Tell Difficult Truths about this very subject after I had found myself reminding a doctor “You took an oath to do no harm-not to cure cancer.” Judging from current editorials and published articles, it remains a timely and important conversation.
The other night I watched Frontline’s program, Being Mortal, which follows the renowned New Yorker writer and Boston surgeon Atul Gawande who explores the relationships doctors have with patients whose illness they know can’t be cured. In conjunction with his new book, Being Mortal, Dr. Gawande’s film shares the challenges doctors face in caring for the dying—how doctors–himself included–are often “untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.”
http://www.pbs.org/wgbh/pages/frontline/being-mortal/
In the very first interview with Rich, the late Sarah ‘s Monpoli’s husband, Dr. Gawande admits he was “unequipped” for the these difficult conversations. In retrospect, Rich shares the burden, “We wanted to be part of the 15% who survive and you joined us in our sunny disposition. What did that cost us? What did we miss out on by consistently pursuing treatment after treatment which made her sicker?”
Knowing what he knows now—Gawande knows –he wants to do better and he is. “How,” he asks, “can the medical profession better help patients navigate the final chapters of their lives with confidence, direction and purpose? Hope is not a plan. How do we define hope?” We hear his—a doctor’s plea– for help. As a patient you may have to give your doctor permission to tell you the hard truths.
Dr. Gawande’s questions call to mind one of countless conversations I’ve had with Dr. Lidia Schapira, Massachusetts General Hospital/Harvard Medical School, about the challenges doctors face. “How do you,” I asked, “define hope?”
“For me, hope is an emotional vital sign. I can’t do my work as a doctor without knowing my patient’s temperature, blood pressure and pulse rate. If I am to do my job well, it is just as important for me to take a ‘reading’ of their level of hopefulness or hopelessness.”
Dr. Schapira recognizes, “There is so much we can do as medical professionals to help our patients when our treatments fail to cure their disease. We can help them cope and to fulfill some realizable goals. But to do so requires knowledge of what people hope for. Goal setting allows doctor and patient to align their expectations and focus on small steps they can take jointly and experience small ‘triumphs.’ It’s as simple as asking, “Tell me what you hope for?”
In the end, Rich wished they started sooner toward having quality of time together in the final months. “Not being able to hold her baby was not where they wanted to be,” he says with regret.
Hope and reality can be experienced at the same time, especially if frank and timely conversations about risks and benefits of treatment options and quality of life issues begin sooner rather than later. That’s the goal we have set with our Speak Sooner initiative – getting patients, families and doctors on the same page.