Patient Trust—Keeping It in the Family

My father was diagnosed with an early-stage cutaneous melanoma 2 years ago. A small malignant freckle on his right pinna was resected without incident, and he was cancer free. When it returned at the same site 6 months later, we were all surprised. He underwent a partial ear resection and neck dissection with no tumor identified in the specimen. Our prayers had been answered.

He came from Florida on vacation to visit me in Virginia during my first months of radiation oncology residency. While preparing dinner the first night, he asked me about a new “freckle” behind his ear. I examined the purple, 1-cm, subcutaneous nodule carefully, and my heart sank. I could not help but be honest with him; it was the only thing that I knew to do. “Dad, it looks like the melanoma is back.”

I have chosen to pursue a career in medicine for this very reason: to walk with patients through these difficult and critical moments in their lives. I just never imagined walking my family through those moments as well. Moreover, I had barely any knowledge on the topic. I had 3 months of oncology training under my belt, and my family looked to me as the expert.

My father’s mortality flashed before my eyes. “What do we do next?” my mother asked. This was unlike any discussion that I have had with a patient. I was likely to ruin the vacation for everyone if I carried on with the conversation. Moreover, my mind flashed to the worst: who knew how many more vacations with me he would have left?

Over the next few weeks, I read everything that I could find on recurrent melanoma. Was this another local recurrence? A satellite lesion? Early dermal lymphatic spread? What is the difference? No study that I found was specific enough to my father’s situation for me to feel confident in any recommendation. I recognized that for patients with recurrent melanoma, my dad was probably in the best prognostic group: all of his scans were clear. What next?

He again went for resection to negative (but close) margins, and thankfully the surgeon did not have to remove the entire ear. But should he have? Where is the evidence? A close margin did not sit well with me, but my father did not seem to mind. “The surgeon says that he got it all. Good thing too—I was worried that it was too close to my skull for them to get around it.” I did not want to discourage him, but I knew that there would be more to come.

As the question of adjuvant therapy arose—immunotherapy, chemotherapy, radiotherapy, and combinations—a single thought dominated my mind: what therapies would benefit my father? To be clear, I had no interest in probabilities or costs of treatment. I did not care what happened to 14 of 45 patients in a series of patients treated 10 years ago. I wanted to know what was going to happen to 1 patient in the next 10 years. The answer, of course, could not be found on PubMed, and no clinician could provide it. I needed help, and we met with his physicians to discuss options.

Fagerlin et al¹ enumerate the 10 steps to better risk communication in describing the risks of proposed therapy. Probably the most thought-provoking recommendation was number 9: consider that less information may be more effective. How can a provider say more and speak less? It struck me that this was exactly what I was looking for from my father’s physician: an unspoken trust.

I had wanted someone to provide my dad with the information that I could not: an honest and clear prediction. I did not want to know what a physician would do if he were in my father’s position: he was not in my father’s position. I did not want him to choose on behalf of my father either. How could any physician know what my father would want? Although the physicians caring for my father were indeed excellent, we could not trust them: we had just met them. I wanted an old friend to say “There are several treatment options, and there is no guideline or randomized trial to provide us the best treatment for you. Extrapolating from existing evidence, I think that treatment X makes sense for you. Let’s talk about what to expect.”

How a physician presents a recommendation is fraught with bias, and a clinician’s affect can have a dramatic impact on the perception of therapeutic risk.² Physician biases (purposeful or not) change how recommendations are received by patients. It is easy to hide behind the guise of informed consent, as if the patient really made the choice for treatment all on his own. This is usually not the case. Extrapolating existing data and presenting a recommendation to a particular patient is inherently fraught with paternalism; we should acknowledge and accept this power of persuasion.

My father received adjuvant radiotherapy and currently has no evidence of disease and no adverse effects 1 year out. Like most fathers (I imagine, since he is my 1 and only), he calls me periodically to discuss college football or politics. He lets me know that his most recent scans came back normal or that his dermatologist gave him a clean bill of health. Each time, I breathe a sigh of relief. “That’s great news, let’s keep it up.”

In the end, what I discovered through my father’s experience is that trust is necessary in the patient-physician relationship, and if the trust is deep enough, it is also sufficient. When giving medical advice to family members, we need to recognize that this trust is established and our recommendations carry heavy weight. When we meet new patients, we need to recognize that this level of trust is lacking and first work to establish it. A fair question is, given current work-hour restrictions, rotating clinical responsibilities, and other external forces limiting the patient-physician relationship, how can a relationship of this depth be fostered? I am still learning how to answer this difficult question, as I imagine most physicians are.

Medicine is becoming a field governed by the standard of care and guidelines, but standards and guidelines will never allow us to perfectly predict the outcome of an individual patient. The role of a physician in medicine is no longer as a gatekeeper of therapy: “giving” treatment to some and “refusing” it to others, with patients trusting every word that we say. Rather, a physician is now a gatekeeper of knowledge: a fortune teller with prescriptions as tarot cards and a stethoscope as a crystal ball, with patients looking for the wizard behind the curtain. When discussing treatment options with patients, we need to recognize trust as a necessary component and evaluate its extent early in the discussion of treatment options. Patients want us to be honest and clear. Certainly my family would want that if I treated them.

Corresponding Author: Daniel M. Trifiletti, MD, Department of Radiation Oncology, University of Virginia School of Medicine, 1240 Lee St, Box 800383, Charlottesville, VA 22908 (dt3uf@virginia.edu).

Published Online: April 9, 2015. doi:10.1001/jamaoncol.2015.0370.

Conflict of Interest Disclosures: None reported.

Additional Contributions: I thank Richard Trifiletti, PhD, for assistance in the preparation of this article.