Listen to ASCO's JCO Oncology Practice Art of Oncology article, "No Versus Know: Patient Empowerment Through Shared Decision Making" by Dr. Beatrice Preti, who is an Assistant Professor at Emory University. The article is followed by an interview with Preti and host Dr. Mikkael Sekeres. Dr Preti explores the challenges which may prevent oncologists from fully engaging with patients during shared decision making.

TRANSCRIPT

Narrator: No Versus Know: Patient Empowerment Through Shared Decision Making, by Beatrice T.B. Preti, MD, MMed, FRCPC 

During a recent clinic, I saw three patients back-to-back, all from minority backgrounds, all referred for second opinions, all referenced in the notes for being different forms of difficult. Refused chemo, refused hospice, read one note. Refused surgery and chemo, read another, unsure about radiation.

Yet, despite the documented refusals (I prefer the term, decline), they had come to my clinic for a reason. They were still seeking something.

As an oncologist trained in a program with a strong emphasis on shared decision making between physician and patient, I approach such situations with curiosity. I consider optimal shared decision making a balance between the extremes of (1) providing a patient complete choice from a menu of treatment options, without physician input, and (2) indicating to a patient the best course of treatment, in the eyes of the physician.¹ This is a balance between beneficence (which can often turn paternalistic) and patient autonomy and requires a carefully crafted art. Many of my consults start with an open question (Tell me about yourself…?), and we will examine goals, wishes, and values before ever touching on treatment options. This allows me to take the knowledge I have, and fit it within the scaffold of the patient in front of me. A patient emphasizing quantity of life at all costs and a patient emphasizing weekly fishing trips in their boat will receive the same treatment option lists, but with different emphases and discussions around each.

Yet, many physicians find themselves tending toward paternalistic beneficence—logical, if we consider physicians to be compassionate individuals who want the best for their patients. All three patients I saw had been offered options that were medically appropriate, but declined them as they felt the options were not right for them. And all three patients I saw ended up selecting a presented option during our time together—not an option that would be considered the best or standard of care, or the most aggressive treatment, but an option that aligned most with their own goals, wishes, and values. This is of particular importance when caring for patients who harbor different cultural or religious views from our own; western medicine adopts many of its ideas and professional norms from certain mindsets and cultures which may not be the lenses through which our patients see the world. Even when a patient shares our personal cultural or religious background, they may still choose a path which differs from what we or our family might choose. It is vital to incorporate reflexivity in our practice, to be mindful of our own blinders, and to be open to different ways of seeing, thinking, and deciding.

I will admit that, like many, I do struggle at times when a patient does not select the medically best treatment for themselves. But why? Do we fear legal repercussions or complaints down the road from not giving a patient the standard of care (often the strongest treatment available)? Do we struggle with moral distress when a patient makes a choice that we disagree with, based on values that we ourselves do not hold? Do we lack time in clinics to walk patients through different options, picking the method of counseling that allows the most efficiency in packed clinical systems? Is it too painful a reminder of our mortality to consider that, especially in the setting of terminally ill patients, aiming for anything other than a shot at the longest length of life might be a patient's preference?

Or are we so burnt out from working in systems that deny us sufficient choice and autonomy (with regards to our own work, our own morals, and our own lives) that, under such repeated traumas, we lose touch with the idea of even having a choice?

I have a number of patients in my clinic who transferred care after feeling caught between one (aggressive) treatment option and best supportive care alone. They come looking for options—an oral agent that allows them to travel, a targeted therapy that avoids immunosuppression, or a treatment that will be safe around dogs and small children. They are looking for someone to listen, to hold their hand, to fill in the gaps, as was told to me recently, and not skirt around the difficult conversations that both of us wish we did not have to have. Granted, some of the conversations are challenging—requests for ivermectin prescriptions, for example, or full resuscitation efforts patients with no foreseeable chance of recovery (from a medical standpoint) to allow for a possible divine miracle. However, in these cases, there are still goals, wishes and values—although ones that are not aligned with evidence-based medical practice that can be explored, even if they are challenging to navigate.

As my clinic day went on, I spoke with my patients and their loved ones. One asked the difference between hospice and a funeral home, which explained their reluctance to pursue the former. Another asked for clarification of how one treatment can treat cancer in two different sites. And yet still another absorbed the information they requested and asked to come back another day to speak some more.

All questions I have heard before and will continue to hear again. And again.

There is no cure for many of the patients who enter my GI medical oncology clinic. But for fear, for confusion, perhaps there is. Cancer wreaks havoc on human lives. Plans go awry, dreams are shattered, and hopes are crushed. But we can afford some control—we can empower our patients back—by giving them choices. Sometimes, that choice is pitiful. Sometimes, it is an explanation why the most aggressive treatment option cannot be prescribed in good faith (performance status, bloodwork parametres), but it is a choice between a gentle treatment and no treatments. Sometimes it is a choice between home hospice and a hospice facility.

I teach many of the learners who come through my clinic about the physician's toolbox, and the importance of cultivating the tools of one's specific specialty and area of work. For some (like surgeons), the tools are more tangible—physical skills, or even specific tools, like a particular scalpel or retractor. For others, like radiologists, it might be an ability—to recognize patterns, for example, or detect changes over time.

For those of us in medical oncology, our toolbox can feel limiting at times. Although we have a handful of treatments tied to a specific disease site and histology, these often fall short of what we wish we could offer, especially when studies cite average survivals in months over years. But one of our most valuable tools—more valuable, I would argue, than any drug—is the communication we have with our patients, the way we can let them know that someone is there for them, that someone is here to listen, and that someone cares. Furthermore, the information we share—and the way we share it—has the potential