Editor’s note: The opinions expressed by the author do not necessarily reflect the opinions of the AAMC or its members.
A few months ago, I cared for Lily*, a pediatric intensive care unit (PICU) patient who had already spent several years in the hospital at a time when she should have been playing with dolls and building sand castles. Born prematurely with a heart defect, Lily still suffered from severe heart and lung disease at age 3. She had undergone multiple surgeries, and she often required heavy sedation to stay stable.
Lily’s parents took turns sitting in her room here at Children’s Hospital of Philadelphia (CHOP) while the other one tended to their older children at home. They showed us artwork that the siblings made for their little sister and shared videos from happier moments.
Though survival was a long shot, Lily had started showing signs of improvement. We’d been able to let her start waking up a little, and she had even squeezed her mother’s finger. It was a small victory, but one that sparked some hope for both her family and the medical team.
Yet the toll that long-term illness had taken on Lily’s body made her vulnerable, and when her kidneys started to fail, we knew it was too much. The day finally came when her parents agreed to remove life support. Staff members laid Lily in her parents’ arms so they could hold her during her final moments on earth.
Such experiences can deeply affect health care providers. The day after her death, there was a palpable sadness among our staff whenever we walked by the room that had been Lily's for so long.
Unfortunately, patient deaths are not uncommon in hospitals across the United States. For example, 10% to 29% of adult ICU patients die, as do up to 6% of pediatric ICU patients. Furthermore, a 2019 review of 12 studies found that providers commonly experienced moderate and sometimes long-term grief after patients’ deaths.
Providers need the opportunity to acknowledge these losses. It’s not realistic — or humane — to expect them to simply pick up and move on to treat the next patient, and then the one after that. Hospitals must do more to help their providers process the sometimes powerful feelings that arise.
Left unexamined, loss-related emotions can leave physicians vulnerable to burnout, disengagement, and poor clinical decision-making. It also can undermine the ability to compassionately support patients who are facing imminent death or the loss of a loved one.
Providers need the opportunity to acknowledge [patient] losses. It’s not realistic — or humane — to expect them to simply pick up and move on to treat the next patient, and then the one after that.
Of course, every provider’s emotional response to a loss will be unique, and sadness may be mixed with many other feelings. A new doctor might experience painful doubts about their clinical choices, for example. An experienced nurse may worry that he let himself get too close to the family. Even a provider with years of experience may wonder if colleagues are judging how he cared for the patient.
But no matter the reaction, it is likely that other providers will be able to relate in some way. Knowing that others have felt similarly at some point in their career can help avoid adding a sense of isolation to already difficult emotions.
That’s why after patient deaths at CHOP, we create opportunities for care teams to share their experiences with each other in a safe and supportive environment.
I find one approach particularly compelling. In effect, we continue to “round” one final morning, just like we would on other ICU patients. At the beginning of morning rounds, before going to see patients, the relevant providers meet to talk about the child who died.
An experienced provider facilitates the session, and an attending may share some clinical insights about their medical decisions. But we also spend time remembering the patient with stories from their lives, and we work to acknowledge and normalize the many different emotions team members might be feeling.
Often occurring several times a month, each debrief offers new chances to grow as individuals and as a team.
In one recent meaningful exchange, a team member expressed his frustration at the use of end-of-life interventions that he believed were likely useless. His sharing allowed another member to reframe the measures more positively, as having been in alignment with the goals of both the patient and family. Sometimes, we learn that a trainee has never before lost a patient, which helps seasoned providers recall and resonate with that experience. And once, the team discovered that a trainee was so overwhelmed by a sudden loss that they suggested she go home to recuperate.
Of course, no one step can meet all needs after a death, so we have added other processes as well.
For example, because some providers may not be working the day after a patient's death, our nursing leaders have also started virtual debriefings. In addition, they email all relevant pediatric ICU staff to notify them of a death so as to avoid someone arriving at work suddenly discovering that a patient has passed away. Patients’ families sometimes deeply appreciate knowing that staff have been notified of the death. I still remember being moved when, on the day of his son’s passing, a father looked at me tearfully and asked, “How are all the nurses going to hear — by an email?” At this time of his own terrible loss, he wanted to spare them that distress. (And, yes, an email, thoughtfully worded, was the most effective option.)
Other hospitals have taken similar steps after patient deaths. For example, my ICU colleagues at the Hospital of the University of Pennsylvania in Philadelphia conduct longer monthly Grief Rounds to talk about patients who died over those weeks and to share suggestions for coping with loss. Other hospitals have initiated a very brief ritual pause right after a patient’s death. This sometimes is just one minute of silence to show respect for the patient and to allow providers to briefly honor the challenge — and privilege — of being present for these life transitions.
Personally, I find that acknowledging my grief when a patient dies helps keep me centered in the midst of caring for my patients, every one of whom is likely experiencing some of the worst days of their lives.
Providers often deeply appreciate such post-loss efforts. One adult ICU colleague recently told me that the Grief Rounds helped her conclude that she wanted to pursue a career in palliative care. In a study of ICU sacred pauses, 79% of participants said the ritual bolstered both a sense of closure and team connection, and 82% said it made them feel valued for their efforts.
Personally, I find that acknowledging my grief when a patient dies helps keep me centered in the midst of caring for my patients, every one of whom is likely experiencing some of the worst days of their lives. If I were forced to move on again and again without processing my emotions, I fear the chronic accumulation would become toxic.
The day Lily died, the team was busy and pulled in all different directions. Some were talking with her family while others were completing the necessary paperwork. As often happens, we didn’t have time to regroup and reconnect at any length.
But the next morning, we started our day by talking about Lily and her parents. One team member described how the music therapist had played the child’s favorite song as the family held her. Another shared how hard it had been to hope that Lily might have begun recuperating only to have those hopes dashed. Someone else reported that her parents felt at peace and deeply grateful for all the care we had provided to their daughter. And then, after a deep breath, we stepped out to care for the next child who needed us, the new patient who was now in the room we had thought of as Lily’s.
*Patient’s name and personal details have been altered to preserve privacy.
