In our new series, we highlight the staff and faculty members behind the compelling work at Ariadne Labs.
Born and raised in Stillwater, Oklahoma, Erik Fromme received his MD at the University of Oklahoma and initially thought he would practice primary care in a rural setting. Then he and his wife moved to Baltimore for a medical education fellowship at Johns Hopkins University and he found himself immersed in palliative care issues.
Along the way, he was referred to a patient named “Lee.” When they met, Lee had had cancer for five years and had nearly 20 surgeries and multiple radiation courses. She was desperate to talk to her doctors about what she wanted out of whatever time she had. She did not want another hospital stay, for example. After she and Fromme spoke, she never spent another night in the hospital, although she continued to have treatments for the next three years. “I had the honor of visiting Lee on the last day of her life,” says Fromme, now the director of the Serious Illness Care Program at Ariadne Labs. The program was created by a team of palliative care experts to facilitate meaningful discussions between seriously ill patients and their clinicians. “I told her what a powerful experience it was to talk to someone who wasn’t afraid of dying. She looked at me and laughed and said, ‘Oh, Dr. Fromme, I’m still afraid of dying – I’m just not afraid to talk about it.’”
Lee helped teach Fromme that patients and doctors, with proper guidance, can have meaningful conversations about serious illness. This is the core of the Serious Illness Conversation Guide, which offers clinicians language to ask seriously ill patients about their goals, values, and wishes. “My greatest frustration is watching people suffer needlessly because nobody has taken the time to understand them or to help them understand what is going on,” says Fromme.
In between his Ariadne duties, Fromme continues to hold clinics two days a week at the Dana Farber Cancer Institute in Boston. We caught up with him for a quick interview.
Why is the Serious Illness Conversation Guide needed?
We’re supposed to ask people routinely when they’re hospitalized about CPR preferences. That is the only institutionalized way that we have of asking about patient preferences for end-of-life care. You’re either full code or Do Not Resuscitate (DNR) or you’re something complicated in between. And that’s a terrible question for a lot of different reasons. It’s one of the hardest questions a clinician has to ask a patient: “Is this something that you want or don’t want?” The patient assumes that if they’re being asked by the doctor if they want this or not, that it must be something beneficial. But, in fact, we’re required to ask people even when we think it’s a really bad idea. So a lot of patients just say, “I want everything,” or “I don’t want anything.” That’s converted into a checkbox. And then something happens, and medical staff will look at that checkbox and they’ll say, “Oh, they’ve checked off DNR, so don’t work on them.” They interpret “DNR” as “do not treat.” Or they interpret full code as do everything. Both are pretty far from the truth because what you really want to know is why they answered the question the way they answered it.
Communication about what matters most to the patient is the most important tool we have. The guide helps health professionals have better conversations with relatively little additional training.
Why do clinicians avoid these kinds of conversations?
They think, “Oh, those conversations are so hard. They take a long time. I don’t have time to do that.” That’s their experience and often they have been kind of traumatized by it. But that’s because they are likely remembering previous conversations that didn’t happen until the patient was dying. If they wait until then, they have a lot of ground to cover and it is a lot harder.
The guide should be used close to the time of a serious illness diagnosis, but is there a point when it’s too late to use it?
No. It’s just the number of options gets fewer and fewer. We can still ask the families of people in the intensive care unit — who might be hours to days from death, whether we continue to treat them — “So what are their goals? What are they hoping for?” The reality is their options are going to be very limited. If you start the conversation much earlier, there are a lot more options and potential to shape the patient’s care around what’s most important to them. The first question on the guide is so important to have early after a diagnosis: “I would like to talk to you about this. Is that okay?” Even if someone says, “Oh, no, I’d rather not talk about that,” actually, that’s a conversation right there and maybe the next time they are asked, their answer will be different.
How young is too young to have a serious illness conversation? Can you use it with young patients?
That’s a great question. Some of our colleagues at Boston Children’s Hospital are doing a project where they’re adapting the guide for adolescents. It’s a much more complex conversation because you are asking questions of the child and of their parents simultaneously. So it ends up being a big conversation.
The guide was originally developed for and directed at hospitals and health care systems and clinicians. However, can the public play a role in encouraging doctors to have these kinds of conversations?
Definitely. Our guide was designed to teach clinicians how to have a conversation, but the questions are so sensible that it doesn’t require a clinician to administer them. We just received a grant from the Cambia Health Foundation to design a version for patients and their families. I really believe that our greatest potential for impact will be getting the guide into the hands of patients and family members. The great thing about these questions is that health professionals can’t answer them – only patients and those who know them and care about them can. They talk, and we listen.
Read the findings from a recent study on Ariadne’s Serious Illness Care Program and its positive impacts on initiating more, better, and earlier conversations between clinicians and patients with serious illness.
—Interview conducted by Ariadne Labs Staff Writer Stephanie Schorow.