Q: Many of us have been touched by the publication of your sensitive but serious criticism of your wife’s care once her ultimately lethal peritoneal cancer had spread. How do you propose that oncologists, patients and their families should best practice “shared decision making”?
A: Sad but true, most cancer patients today unknowingly enter highly conflicted treatment environments where, as a practical matter, the ideal of shared decision making may run counter to the provider organization’s interests. Cancer care is such lucrative business that more than one in four health systems is now building a cancer center. Physicians or the health systems they work for typically profit from the drugs they prescribe, which often lack evidence of efficacy. These vectors often result in care decisions that accrue more to the health system’s than the patient’s benefit.
Patients should assume that their physicians have their best interests at heart but, in complicated, unfamiliar territory, insist on asking hard questions. Doctors are increasingly aware that their role includes making patients aware of their options, but they, like all of us, may also have inherent biases that manifest in what treatments they urge for their patients.
Physicians can be optimistic about outcomes and patients may be unreasonably hopeful, so an honest evidence-based assessment of current realities is critical. What benefits will the treatment realistically buy the patient and how much of an ordeal will it induce? What are the odds of success and what, exactly, is the definition of success in each case? The goal is to arrive at care decisions based not just on abstract notions of what works better, but on results that will be meaningful to the patient’s and family’s lives.
Treatments that buy a few extra days or months may not be worth it if adverse effects make that additional life miserable. And palliative care data over the past few years has shown that stopping after failed 1st or 2nd line chemotherapy often lengthens life by 2-3 months and improves quality of life over conventional therapy.
It would be particularly useful to know whether the vast majority of cancer patients who have gone through aggressive therapy and are about to die believe in hindsight that it was worth it. That voice of experience would be critical new information for patients, and validate or counter many physicians’ arguments that they prescribe all-but-hopeless treatments because many patients demand any chance. Of course, studies are less fundable when they aspire to less treatment and are not in the care community’s financial interests.
In Being Mortal, Atul Gawande MD’s profound and wonderful book, he presents 5 questions for patients at the end of life, developed by Susan Block, a palliative care physician at the Dana Farber Cancer Institute in Boston.
- What is your understanding of where you are and of your illness?
- What are your fears about what is to come?
- What are your goals as time runs out?
- What tradeoffs are you willing to make?
- What would a good day look like?
The beauty of these questions is their deep humanity. They clarify the patients’ understanding, worries and priorities for the patient and family, and help clinicians know what matters most to them. My wife Elaine referred to them as “perfect questions.”
In British Medical Journal, Richard Lehman MD sums up the shared decision making problem this way. “We urgently need every paper about a new oncology drug trial to incorporate a comparative infographic, compiled by an independent author from the individual patient data. This could probably be done for the same cost as a single course of the treatment.”