The COVID-19 crisis is forcing a lot of uncomfortable conversations, often ones that should have happened long ago but that we’ve put off for one reason or another. Among those is a difficult conversation you may need to have with your doctor — and soon.
The medical term is “serious illness conversation”: A patient with a chronic or life-shortening condition talks with their clinician about their understanding of their illness and prognosis as well as their hopes, fears, and values. The goal is for both parties to arrive at a shared understanding of patients’ priorities for living and how those priorities might change when they become more sick. For example, a possible outcome of the conversation in normal times might be someone with cancer clarifying that they would like to prioritize a planned family vacation rather than immediately begin a palliative treatment. Rigorous evaluation of these conversations has demonstrated that patients who have them actually feel better than those who don’t. They have less anxiety and depression.
As coronavirus cases surge across America and the potential consequences of horrific ventilator shortages loom large in our collective psyche, we doctors should be reaching out to vulnerable patients to proactively have these serious illness conversations.
How should these conversations go? Should doctors explain just how severe the acute respiratory distress syndrome caused by the coronavirus is? How far do we go in explaining the hypothetical that patients may be deprived of life-sustaining treatment even if they want it, or that they may be occupying a ventilator that could be used by a young, healthy patient?
Over the last two years, our Massachusetts General Hospital primary care health system began using an algorithm to identify our patients who would benefit from a serious illness conversation with their doctor and then engage these patients in a running dialogue about their hopes and fears as their health evolved. We didn’t see the project through quickly enough.
We had many excuses. The algorithm was far from perfect, while the topic at hand was just too morbid to tolerate imperfection. Who has time for such a sensitive conversation during a 20-minute appointment? We thought about booking dedicated clinic visits but then got paralyzed by the prospect of explaining, by phone, the purpose of these visits to patients. Then there was the electronic health record we had to use to document these conversations so that they would be standardized and readily available to any provider. The electronic tools were maddeningly clunky and required lots of extra clicks — data that we would need to input while discussing things like end-of-life directives.
We had the foresight to know that this was important. More than 150 of our primary care clinicians attended a two-and-a-half-hour mandatory training that included role-play with real actors, followed by a second one-hour coaching session through a Zoom platform. But it was not enough. Only 10 percent of our clinicians started having routine serious illness conversations with their patients.
Now COVID-19 is forcing the issue. Having this conversation during a crisis is not ideal — they are rushed and systems are overwhelmed. But clunky and rushed is better than no conversation at all.
Health systems should immediately support their providers in engaging in serious illness conversations. At our hospital, we adapted Ariadne Lab’s Creative Commons open-source serious illness conversation guide, a structured approach that offers clinicians scripts for conversations. Our adapted guide offers clinicians pandemic-specific language and anticipated patient reactions.
These conversations are nuanced and challenging to navigate — and not as simple as deciding whether or not to go on a ventilator. In fact, they often do not end with firm decisions about things like ventilation and resuscitation.
Rather, they are an opportunity to give voice to hopes such as living as long as possible, being comfortable, being independent, and being able to provide support for family. They are also an opportunity to give voice to fears about such things as living in pain and suffering, being unable to care for yourself, or being unable to manage your finances. They are about engaging patients in the gray area of trying to maximize length of life and quality of life and minimize suffering in the context of a serious illness.
When this crisis is over, we will all learn of the many missed opportunities that federal and state governments, public health officials, health systems, and industry failed to capitalize on to change the outcome. Let’s not make serious illness conversations another missed opportunity.
Dr. Daniel M. Horn is a primary care physician at Massachusetts General Hospital. Dr. Juliet Jacobsen is director of the Massachusetts General Hospital Serious Illness Care Program.