The doctor-patient relationship is often considered a critical element in the healing process for patients with serious health conditions. But how does this bond change when it’s decided recovery is not an option? And how can doctors, patients, and their families best make decisions at the end of life?
Dr. Atual Gawande examines these very questions in his book Being Mortal: Medicine and What Matters in the End—the focus of a PBS FRONTLINE program earlier this month. Hospice professionals nationwide found the FRONTLINE program to be a powerful exploration into the difficult world of caring for patients at the end of life.
Healthcare Providers & End-of-Life Decisions
Gawande’s book, Being Mortal, is an exploration of the complex issues that doctors, patients and hospice professionals face when having end-of-life discussions. Dr. Gawande, a surgeon at Brigham and Women’s Hospital and Harvard professor, discusses the importance of talking to patients early about end-of-life planning so physicians, patients, and their families can focus on the quality of their life, not the quantity, before succumbing to terminal illness.
In the PBS FRONTLINE story, doctors treating terminal patients acknowledged the difficulty of having end-of-life discussions with their patients. Dr. Gawande discovered that caregivers “need to tune treatment to the patient’s priorities and those aren’t always just living longer.”
Dr. Kathy Selvaggi, Director of the Inpatient Palliative Care Unit at the Dana-Farber Cancer Institute, described the challenge to a physician’s mindset when dealing with end-of-life scenarios.“We’re all sort of taught that in order to make a difference in our patients lives, we have to be doing something,” Selvaggi explains. “We have to be operating, we have to be giving them a medication, we have to be radiating, we have to be giving them chemotherapy. In some ways, I think the medicine is the easy part. It’s all this other stuff that’s much harder to deal with.”
Consider What Treatment May Mean
Dr. Gawande asks physicians to consider what continuous treatment may mean to a patient’s quality of life at the end. He spoke with the husband of his patient, a young woman who was diagnosed with lung cancer late in her pregnancy. Dr. Gawande confided that he knew the experimental therapy he recommended wouldn’t work and worried that by doing so, he negatively affected her ability to have a better quality of life with her husband and baby before dying.
“It’s easy for all of us–patients and doctors–to fall back on looking for what more we can do regardless of what we might be sacrificing along the way, and that is especially the case with younger patients,” Gawande says.
It is this questions on “what is sacrificed along the way” led Dr. Gawande to encourage physicians and patients to talk early and often about end-of-life care.
Being a Person, Not a Patient
Several patients facing terminal diagnoses were interviewed for the FRONTLINE story. Their stories centered on the importance of “being a person, not a patient at the end.”
One patient expressed frustration with the mental roller coaster he faced everyday, constantly wondering—Should I fight? Should I give up? Am I dying? Will I get better?—he said, was the hardest thing to deal with.
Mr. Monopoli, whose 34-year-old wife was diagnosed with stage 4 lung cancer 39 weeks into her pregnancy, wondered if the relentless pursuit of a life-saving therapy kept him from having quality time with his wife at the end. “I’ve thought often about (pursuing experimental therapy). “What did that cost us? What did we miss out on? What did we forego by consistently pursuing treatment after treatment, which made her sicker and sicker and sicker.”
Dr. Gawande encourages patients to talk about worse-case and best-case scenarios. It is important to talk about where the patient might like to be when facing the end—whether that is hospice, home, or at a facility.
Being Mortal provides valuable information for patients, physicians, and their families who are facing life-threatening illness. Talking together, asking questions, and creating an end-of-life “game plan” can help ease the uncertainty and ensure that patients live the last moments of their lives as people—loved and valued—deserving of a high quality of life even when facing the end of life.
Recommendations on End-of-Life Discussions
As hospice professionals, we know that discussing a patient’s wishes will allow us to best form a plan that preserves quality of life for as long as possible. We can use the insights Gawande found in his discussions with patients, caregivers and healthcare providers to create an experience in tune with a patient’s goals.
A few recommended questions to ask:
- What are your fears?
- What are your goals?
- Do you want to die at home?
- What don’t you want
If you missed the Being Mortal on FRONTLINE, you can view the full program here.
We’d love to hear your thoughts on the FRONTLINE program Being Mortal. How can this PBS feature help cultivate meaningful dialogue between hospice professionals, hospice patient and caregivers? What other programs or books do you recommend?