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.”
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.
What a gift this blog is tonight. Communication is vital however the goals of treatment are often not explained or understood. Dr. Bernie Segal stated that “all hope is important, that includes hope for a good end.” Thank you for this timely message.
Thank you, Celia, for these wise words. You’ve been an advocate for these important conversations for a very long time. So appreciate you and Bernie’s fine work over the years and for chiming in now as awareness grows.
Powerful stuff, and to define the nature of hope — what is hope? The unrealistic expectation for an unattainable cure? The desire to make it to the next milestone, whatever that may be, birthday, birth of a grandchild, next beautiful day? To complete some task before one’s time runs out? To live with one’s loved ones as well as one can with whatever time one has left. We can spend our time living from one doctors appointment to the next, hoping that the next one will bring us closer to that unattainable state of “cure”. Or we can hope that we will be given the time to see the people we love best to tell them one more time how we love the. And what is the roles of the caregiver in this equation? Can the caregiver support the patient in his/her decision to follow the course of greatest peace? The caregiver must support the patient in the course of hope, and help to maintain calmness in that person’s life. Help to guard from drama that can surround a persons end of life.
I was very moved by your response, Consie. “Following the course of greatest peace” is an important and attainable goal.
I wonder what the difference is between hoping/wishing and “wanting to have happen”… I would prefer a doctor to ask me very concretely about what I would want to have happen in my time frame, rather than the more ephemeral hoping and wishing.
This subject is one that I’m all too familiar with and one that I think about when remembering the difficult four years of my husband’s illness. The trouble for my family was that in spite of the gloomy prognosis and the honesty with which we, and the docs, spoke with him, his will to live and his belief that he would be that one in a million, led the parade. How do you deny treatment, however difficult, to someone who is determined to live? We huddled so many times, with and without him, and it was only after two and a half years, when every treatment option was exhausted, that he said, “I guess I’ll have to use my strong mind and body to stay alive, without the help of medicine or family.” They told us he had a few months, at most, based on the size of the tumor. He was with Hospice for 18 months.
I will say that selfishly, having done it all his way, gave me greater freedom when it was all over. By that I mean that I had zero guilt that perhaps we might have missed a treatment option, traditional or non traditional. I was able to start the next chapter of my life more easily than many others who have experienced profound loss. I had dealt with so much of my grief during the long years of his illness.
Beautifully said; thank you.
Thank you all for these poignant and enlightened responses. The idea of setting goals with one another and with doctors , is invaluable. Goals that define small steps and define expectations are so important for ourselves, the caregivers ,as well as the loved ones we accompany. Goals get the conversation going and provide relief amidst all the unknowns of illness. My husband (died in 2013) and I thank you. I plan to pass these thoughts on to two of John’s oncologists.
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Thank you Celia for being the compassionate pioneer that you are. Hopeful Truth inspires peace.
I truly hope everyone reading this blog will watch the Frontline episode referred to here. Despite it’s very difficult subject matter, I was compelled to finish watching through to the end despite my own serious illness & all too fresh memories of Dana-Farber & BWH that are featured in this video. I can think of no stronger example of how much EVERY physician & patient can get the message that the Speak Sooner project is putting forth.
This is one of the most important issues we as individuals will ever face.
For this organization & the Bandmans, I am very thankful.
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