Guest post by Muriel R. Gillick
When physician-law-professor, Jay Katz, published The Silent World of Doctor and Patient in 1984, shortly after I completed my medical residency, I felt he was speaking directly to me. He was telling me what kind of physician to be – not the old-school, paternalistic physician who told patients what treatment was best, but rather a physician who participated in shared decision-making. For the next few decades, I aspired to cultivate patient autonomy by engaging my patients in deciding, with my input, how to approach their medical care.
There were substantial obstacles. There were cognitive barriers to shared decision-making, as Twerksy and Kahneman brilliantly revealed: whether you spoke of a 60% success rate or a 40% failure rate seemed to matter, even though they were mathematically equivalent, as did the patient or doctor’s most recent experiences. Then there was the problem of innumeracy, of patients lacking the tools needed to understand probabilities. There was the challenge of limited health literacy, or inadequate knowledge of the vocabulary and concepts of health and disease. And there were cultural biases, because patients of various ethnic backgrounds had a world view radically different from the physician’s biomedical model. But each of those barriers could be surmounted with careful choice of words, better graphs, or cultural sensitivity. I continued to strive to be a physician who practiced shared decision-making.
But more and more often, I found that patients wanted me to make a treatment recommendation. It wasn’t that they didn’t want to be involved in the decision-making, or that they couldn’t understand medical jargon, or that they didn’t know what odds ratios were – although sometimes those were issues. The main issue was that the purpose of the prevailing model of shared decision-making was to figure out, when multiple treatment options existed, which one to choose. It seemed to me that this focus on what was essentially a technical outcome was misplaced.
What if, instead, the objective of the dialogue between physician and patient was to ascertain the patient’s goals of care? Goals, after all, are the values-based part of decision-making; they are what is unique to a given patient. But much of the decision-making literature has assumed that patients know their goals, and that goals follow directly and inevitably from one’s culture or religious beliefs. In fact, people’s goals change depending on their position in the life cycle and on their overall health as well as on their background and personal philosophy. Patients are often unclear on their goals and benefit from a conversation with their physician to elucidate their beliefs. But once patients have articulated and prioritised their goals of care, it is a technical matter for the physician to figure out how to translate those goals into practice.
“Re-Engineering Shared Decision-Making” makes the case for this perspective. I argue that the conceptual foundation of shared decision-making is strong, but implementation is problematic. If after thirty years of tweaking, we haven’t figured out how to go about the process in a way that the vast majority of patients and physicians find acceptable, then maybe it’s time to re-examine the approach. Instead of adding more fixes – better language, better framing, better graphics – we should focus on goals of care instead of treatment options. Fundamentally, this shifts the process from one that addresses physician’s needs (to know what to do) to one that addresses patient’s needs (to know how to achieve their interests).
Instead of dwelling on whether a patient wants to be intubated for respiratory failure, or to undergo dialysis for kidney failure, patients should lay out their goals: do they want to live longer, no matter what the consequences to their ability to function or their ability to interact with others? Or is what they prize most their independence, their ability to talk and walk and think and listen, or whatever it is that gives them a sense of meaning and satisfaction in their lives? Or is comfort what is most important to them, even if maximising comfort entails forgoing potentially life-prolonging but assuredly painful procedures? Depending on the answer, the physician tells the patient what treatment makes most sense.
Surely only the most extreme libertarians would argue that promoting patient self-determination requires that patients decide for themselves which antibiotic should be used to treat their pneumonia or which anti-hypertensive they should take for their high blood pressure. So why are we so intent on asking patients to choose between medical and surgical management of coronary artery disease or between chemotherapy and radiation therapy for cancer? Truly promoting autonomy requires a physician to recommend treatment in accordance with a patient’s values and goals. My job and that of physicians everywhere who try to incorporate the principles of ethical decision-making into practice – is to suggest what treatment makes most sense for this particular patient, in light of this patient’s values and goals.
Read the full paper here.