In my previous blog, Dosing Hope and Reality, I responded to Dr. Gawande’s quest to help patients “navigate the final chapters of their lives…” in which he noted “hope is not a plan.”
I understood he was referring to a form—the physician’s order sheet and plan of care—filed in the patient’s medical record, which distinguishes it from a conversation.
“How do we define hope?” Gawande asked. This opens an important national dialogue and poses a fundamental question, how do patients define hope? Incurable does not mean untreatable – but it does place both doctor and patient in uncertain territory.
What comes to mind are what patients had to say about hope in the video for our Difficult Conversations Toolkit. During these interviews, I was out of sight but within earshot, taking notes. The same exact questions were asked of each patient. Noel “Fritz” Fritzinger reiterated the question – asking himself, “What do I hope for? I have a limited period of time – by definition a short period of time, before things go into a decline. I want to make those, days, weeks, months, and years as pleasurable, meaningful, and rewarding as I can. That,” he said, “is what I hope for.”
I scribbled the words “hope and reality can be experienced at the same time,” in response to what Fritz said – noting it was a goal that could be realized. Fritz lived on for several years after having said that. Think of what one can do when these difficult conversations take place sooner rather than later!
The same question, “How do we define hope?” was one that we explored – not as concept, but a reality – at our SpeakSooner community event last October, Illness Does Not Just Impact One Person: getting patients, families and doctors on the same page. After viewing the video chapter on hope, the panel, including a patient, family member, doctor, clergy, psychologist and medical humanist, explored the question among themselves and the attendees joined in the discussion.
In our Difficult Conversations Toolkit (Video & Workbook), Chapter 9 is devoted to this question, and we hear patients speak candidly about what they hope for. Chapter 9, “I Hope…”
Dr. Rachel Naomi Remen reminds us, “The most important questions don’t have easy answers. But the questions themselves have healing power when they are shared.”
We’d like to extend an invitation to you—patients and caregivers (family and friends) to take a moment and ask yourselves, what do I hope for? And, we hope you will share how you define hope. Perhaps, by identifying and communicating what matters most – you can, together with your doctor, create a plan of care around hope.
Celia Engel Bandman