By Shoshana Ungerleider
It was the end of a 24 hour shift in the ICU when the 85-year-old woman I had just admitted with end stage heart failure began having trouble breathing. While I knew she did not desire “aggressive measures” taken to prolong her life, I wondered what that meant in the context of this moment. Even though I was a young medical resident, I knew without swift intervention, she would not be able to survive the night. I ran into the waiting room to search for her son, her medical decision maker, but he had gone home for the night.
I returned to the bedside to see that my patient was tiring as her breathing was becoming shallow and fast. She was awake and I sat down to explain why she was feeling breathless. I explained that her condition had rapidly worsened and asked if she had ever considered a scenario where she may need a breathing tube. She had not. As her oxygen levels dropped, it quickly became clear that we had to act. What wasn’t clear to me was whether this frail woman would actually survive this hospital stay, and if she truly understood what intubation and mechanical ventilation were and whether this would cause her to suffer.
In the United States, all patients receive aggressive, invasive care by default, no matter their age or underlying medical problems, unless they’ve formally articulated an alternative or have a surrogate decision maker to advocate on their behalf. Important conversations about serious illnesses have long been difficult for people because they have traditionally been uncomfortable subjects to address. The topics have also been difficult for clinicians to talk to their patients and patients’ families about in large part because training in this kind of communication has been largely absent from medical school curriculum until recently.
The COVID-19 pandemic has underscored the lack of formal training for physicians in communications around advanced care planning and end of life wishes. According to data from the John A. Hartford Foundation that was published in JAMA in 2016, 68% of physicians reported they had not received training in how to have these conversations. According to data from The Journal of The American Geriatrics Society, 46% of physicians said they are unsure about what to say.
The pressing need for better – and earlier – conversations between doctors, patients and families about serious illness and end of life wishes has never been clearer. Prior to COVID-19, such conversations often unfolded over a longer period of time with patients suffering from chronic illness like cancer, advanced heart disease or dementia. With COVID-19, the progression of the virus often happens so fast that families have not had a chance to talk about their wishes, patients are in the hospital, isolated, alone and facing intensive treatment or even death.
As medical technology advances, there will be more and more we can do for patients — but it’s not always clear there’s more we should do. Only through earlier, deeper conversations can we ensure that what patients want is what they get. COVID-19 or not, all clinicians need to be trained in how to talk to patients and families about their goals and values and then tailor care based on those discussions. This communication needs to be encouraged by healthcare leadership and incentivized by policy to become an essential component of how we care for people.
To learn more about this topic and its policy implications, please join us for an upcoming Petrie-Flom webinar on July 8th from 12-1:15 pm EDT, Advance Care Planning in the Age of COVID: Lessons Learned and Policy Implications.
Shoshana Ungerleider, MD is an internal medicine physician, writer and founder based in San Francisco.