Teaching Death Disclosure, differently

By Michael Gisondi (@MikeGisondi)

Many physicians derive professional satisfaction from their relationships with families that evolve over many years… with births, illnesses, milestones, and deaths along the way. Such lengthy relationships weren’t that important to me when choosing my field, emergency medicine. Still, I’m rewarded by deeply meaningful experiences with my patients, akin to the longitudinal patient relationships developed by primary care physicians… just brief. Brief, yet as intense, important, momentous, emotional, and fulfilling.

For me, the profoundness of the patient-physician relationship can develop in an instant, especially during difficult conversations – and most notably in a death disclosure.

Teaching Death Disclosure

Death disclosures are especially poignant physician tasks. If done correctly, we provide solemn and comforting death narratives to survivors, ones that families will recount repeatedly at the patient’s wake, their funeral, the graveyard, and the aftermath. “Was there suffering? Was there pain? Was every heroic measure attempted?” I have cared for my lost patients by also caring for their families, countless times over the last 20 years, in the quiet but quaking minutes of our brief relationships. I don’t think the survivors remember me later on, and that’s not important. The narrative I give them is what I want them to take away, not who I am or what I looked like or the manner in which I may have grieved with them.

As Angelou said, ‘people will never forget how you made them feel.’ They also won’t forget the critical details of the death narrative; “the doctor said she didn’t feel pain.” I think there is no other gift – if you’ll allow me to call it so – for a deceased patient and their family that is more valuable than a graceful death narrative. I’m a medical educator, and over the years I’ve leaned into death disclosure as one of the most important skills I teach. Beyond the bedside, I’ve taught this skill to trainees in simulation centers, in classrooms, at professional society meetings, and over beers. I’ve used tools such as role plays, videos, standardized patients, interviews, observations, and interprofessional team trainings. I teach others to have these difficult conversations with the dignity and gravity and peace that the task deserves.

Undoubtedly, teaching death disclosure has become a defense mechanism for me, as I often analytically dissect the steps of the interaction much like teaching a bedside procedure; it’s intellectualization in its clearest form. But my methodical approach has been a useful defense, one that has kept me together when I leave the surviving family and then must cheerfully see the patient with an ankle sprain in the next room. I need to turn it on and turn it off in those difficult times, and I’ve become pretty good at it. That’s a much tougher skill to teach trainees, if compartmentalizing emotions can be, or should be, taught. It’s a pathologic navigation of my clinical duties demanded by necessity and practicality. When a police officer deploys their gun, they are often taken off duty and counseled and immediately replaced by an on-call colleague who can bring their full selves to the job. Not us. No one comes in to work for the physician who lost a patient and disclosed their death. We just see the ankle sprain and move on.

A Different Death Disclosure

My skills failed me many years ago after I led the difficult resuscitation of a child who died. The surgeon who I worked with on the case seemed busy and I told her that I would be happy to inform the parents alone. I’ve done relatively few pediatric death disclosures in my career, but I still felt prepared, as I’m the guy who teaches other physicians how to do it. It’s never easy but I’ve always stayed whole and moved on.

But this death disclosure wasn’t the same as the many others I’ve attended to. The father wailed, differently than the others had. He beat his fist into his leg and that of his wife. She crumbled to the floor and grabbed his legs. Their heads shook incessantly, and they screamed so loudly. I waited, as I do, for the initial message to sink in before speaking again. Minutes lapsed. Five minutes. Fifteen minutes. The screams didn’t relent. The grasping of one another, trying to hold on to something, as if for the comfort of something stable and present, didn’t stop and didn’t work. They couldn’t hold on, each slipping from one another’s grip as they sobbed. And the screams. There was no good death narrative given that day, no goodness in the intensity of my brief relationship with them. They couldn’t hear me. At some point I found a moment to walk out, mostly for me.

I left with tears in my eyes but not yet lost. That happened moments later, when I was expected to lead the team debrief that follows every resuscitation in our emergency department. The physician leads, systems issues are identified and corrected, and the staff learns to improve together. Important, impactful, sterile, and tidy. But that day the pressure of leading the debrief, a simple enough task, was too much. I couldn’t be the leader and I couldn’t immediately relive the details of the case. I went to the ambulance bay, to the place I’ve cried before, and parroted the parents’ grief. I sobbed intermittently and privately throughout most of the remainder of my shift. I had to excuse myself from the team several times and tears fell as I completed my charts. Bloodshot eyes greeted the ankle sprains and there was no cheer.

I went home and nothing changed. I imagined what it must be like in the parents’ new reality, and I imagined it too well. Other faculty colleagues called my home to check in, after hearing what happened to me, not the patient. For some, I couldn’t speak at all. To intellectualize once more, I had an acute stress reaction, I knew I was having it, I couldn’t control it, and I was in uncharted territory. I actually considered whether it was an acute grief reaction, despite not losing anyone myself, because something in me felt lost that day, I felt destroyed. I sit here writing this piece as another coping mechanism, I know that, still with a few tears in my eyes. That day will never leave me, no matter how much I write about it or how much I tell a therapist about it. It was not the same as the other death disclosures, not the same as the other families who have sobbed and mourned and broke, not the same as the other touching patient-physician relationships in dark places. Not the same as the death disclosures I have done since. It wasn’t the same.

Teaching Death Disclosure, differently

There are lessons I learned from that experience, many years into my practice. I now teach my trainees to check-in with themselves after performing a death disclosure, something that seems so obvious yet had been absent from my previous instruction. I spend more time talking about the impact on the physician now, how to derive fulfillment from the somber, and how to seek help if you don’t. Hobgood et al. created a useful pneumonic for performing a death disclosure, GRIEV_ING, that I think needs another letter at the end, S for self-compassion. (Box 1.) Most of the time my trainees will be able to calmly see the ankle sprain in the next exam room without pause, but if they can’t, they should have self-compassion as they call in a colleague to replace them on shift. Similarly, they should seek out their colleagues after resuscitations to confirm they are ok. Most of the time they will continue to be the leader on shift, the north star for the team who witnessed tragedy together. But if they can’t lead at that moment, they can’t lead. Ambulance bays are welcome places of solitude.

I think about those parents often. What of our patient-physician bond? There probably wasn’t one, they likely don’t remember me, and frankly that doesn’t matter. But I remember them.

About the Author: Michael A. Gisondi, MD is an emergency physician, medical educator, and education researcher who lives in Palo Alto, California. Michael currently holds a position as Associate Professor and Vice Chair of Education in the Department of Emergency Medicine at Stanford University. Twitter: @MikeGisondi

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