From Nightmares to Comfort Zones: Shifting Provider Thinking Around End-of-Life Care

Throughout his storied career, only one thing ever drove cardiothoracic surgeon Toby Cosgrove, MD, to hole up in bed and pull the covers over his head: A particularly impossible case where his team’s extraordinary efforts came up short and the patient was lost. “My wife saw me with the covers over my head and asked, ‘Is it as bad as that?’ And I said, ‘Yeah, it is.’”

That’s a revelation from a candid 2016 conversation that Dr. Cosgrove (at left in photo above), now Cleveland Clinic CEO and President, had with two Cleveland Clinic experts in end-of-life care in relation to the formation of Cleveland Clinic’s new Center for End of Life Care.

The first half of that conversation was captured in an earlier Consult QD post exploring how Dr. Cosgrove’s thinking on end-of-life care has evolved over the years. The second half — touching on provider resilience, ways to improve end-of-life care delivery and more — is presented in edited form below. The physicians interviewing Dr. Cosgrove were palliative medicine specialist Krista Dobbie, MD, and heart failure cardiologist Eiran Gorodeski, MD, MPH, who also serves as director of Cleveland Clinic’s Center for Connected Care.

Dr. Dobbie: We all recognize that end-of-life decisions can be overwhelming to patients and families, as we’ve discussed. But your comments, Dr. Cosgrove, about being haunted by decisions demanded by your toughest end-of-life cases underscore the toll that these cases take on providers as well. I, too, suffer nightmares from my work in palliative medicine, but I’ve been reluctant to share that because we’re all trained to be tough. But I suspect most providers cope with similar struggles. It reminds me of an excellent article in JAMA by Dr. Marjorie Podraza Stiegler pointing out how the pilot who heroically landed that airplane on the Hudson River needed to take six months off from flying planes afterward. Dr. Stiegler contrasts this with the reality that physicians are generally expected to continue caring for patients as little as an hour after a harrowing loss of a patient, without time to process what happened. This seems like a recipe for burnout or worse.

Dr. Cosgrove: You know, when I was a medical student in cardiac surgery at a children’s hospital, you could lose five kids in one day. There’s traditionally been no adequate training for dealing with something like that.

Dr. Gorodeski: Can we get to the point where you, as CEO of Cleveland Clinic, can tell our doctors, “Sometimes patients will come here and die; it’s okay for you guys to talk to patients and their families about this.”?

Dr. Cosgrove: I see no reason why we shouldn’t be able to do that. I think we need to frame it in terms of death being a natural act, just as being born is a natural act. I think the focus should be on allowing people to die with dignity when other options acceptable to the patient and family run out.

Dr. Gorodeski: I know that promoting death with dignity has been one of the reasons behind Cleveland Clinic’s push over the past few years for more programming around end-of-life and palliative care for doctors and nurses. What else is driving this?

Dr. Cosgrove: There are two factors. First is the humanitarian aspect you cited: People ought to be able to die with dignity. Second is a bigger societal issue: The U.S. healthcare system burns up an awful lot of resources on end-of-life interventions. If some of those interventions aren’t necessarily even desired but happen because there’s not enough discussion between providers and families about what’s really wanted, that amounts to depriving resources to somebody else, because healthcare resources are limited and those limitations will only increase. So taking a 92-year-old to the ICU, putting in a balloon pump, and putting them on a respirator may not be the best thing for either the patient or society overall.

Dr. Dobbie: I work with dying patients every day, and I don’t think we’re always letting them die comfortably or with dignity. Sometimes current care systems may actually be adding more suffering. Our bodies are incredible: They’ve been programmed to shut down in a way that can be a very peaceful, painless process. When we intervene as doctors, we risk messing up that process with ventilators and tubes or by letting people develop decubiti from lying in bed so long.

Dr. Gorodeski: I hear you. I saw a patient on rounds this morning who’s intubated and trached and on the dialysis machine and on pressors. It seemed like the doctors taking care of him won’t stop. I wrote in my note, “I think he’s dying.” Sometimes it seems our physician culture can’t recognize a reality like that even when it’s right in our face. How can that be?

Dr. Cosgrove: We are doers. We see our job as trying to preserve life at all costs. But sometimes it’s at a cost to the patient, not just to society. But it’s hard because we now have so many tools — ventilators, dialysis, you name it — and no one wants a patient to die on their watch. That’s why you need to set the stage to be able to ultimately go to the patient’s family and say, “It’s come to the point where I don’t think any more activity is going to benefit your loved one.”

Dr. Dobbie: If you had a magic wand, how would you change end-of-life care at Cleveland Clinic?

Dr. Cosgrove: I’d like to see providers become more comfortable with setting the stage for those kinds of discussions with patients and their families, as we discussed earlier. We also need to better recognize that death doesn’t always have to happen in the ICU, which is where it increasingly seems to happen. It can happen at home, in hospice, in palliative care or on the ward. Part of allowing people to die with dignity lies in not reducing them to feel that they’re consuming everybody’s emotions and resources.

These are still hard, hard decisions. We’re just very uncomfortable with death — all of us. I don’t know how you get people comfortable with it, but what I’m trying to do is start the conversation.