September 11, 2017 is the sixteenth year since the 9/11 attacks on the United States, a collective time of grief and loss for individuals, families, communities, and the nation.
At the time, we were medical students, learning how to be with patients and families during difficult times, and also in awe of the courage the first responders and families displayed in the face of such horrific tragedy. We remember thinking this could be us—as victims or as responders.
Artists, writers, physicians and other professions have grappled with grief and loss over the course of time. Dylan Thomas describes the emotions of death in his poem "And Death Shall Have No Dominion." Chicago artist Sally Ko represents healing from wounds in her paintings as she "takes circumstances, reconstructs them, and transforms them into a coherent beautiful work."
Pediatrician and ethicist John Lantos in his book Do We Still Need Doctors? describes the permanence of what doctors do. In particular, he asks "whether, like William Carlos Williams, we nurture the capacity to respond to ‘the haunted news’ we get from “some obscure patient’s eyes.” No matter how good our science gets or how our health system is organized, someone will always have to do that."
As a pediatric cardiologist and developmental pediatrician, we may encounter expectant parents learning that their baby has a heart condition or that their two-year-old son has autism. Each parent has their own hopes, dreams and expectations for what their child will become and what they can do together as a family.
In both these circumstances, parents are experiencing a loss of how they expected their children to be. And, physicians have the privilege and responsibility of bearing witness to this process. Over time, physicians learn to compartmentalize events so they can take care of their patients and be ready to move on to the next immediate issue that needs to be addressed. Otherwise, they could not function in their daily roles.
In addition, patients, families and physicians bring their own previous experiences with grief and loss to their interactions. These prior episodes and possible traumas shape how they experience and process their current issues. Different families need different approaches, and sometimes, physicians may misinterpret and not use the right words. This can be interpreted by families and patients as unfeeling or insensitive.
In these circumstances, physicians also grieve when they wish they could have done better or more for patients and families, and there is not always a place to properly process or place their feelings.
When patients and families are facing serious illness personally or with loved ones, physicians may need to be the vessel to carry their pain as they process and try to find hope and meaning in their loss. These feelings can manifest in different aspects of loss directed towards physicians, including anger, denial and frustration. This is an unacknowledged responsibility of physicians, but it is real and necessary to eventually participate in the healing process for patients and families.
Contrary to the image of physicians presented in Samuel Shem’s cult classic and satirical novel The House of God, physicians are not all-knowing, infallible, unbreakable beings. They are human and feel the grief of the possibility that they did not do enough. This feeling never goes away, but physicians learn to push it aside or are able to find productive ways to deal with this emotion.
But this has consequences. Physicians’ own personal grief for the families they see can be cumulative and lead to significant negative impact on personal and professional life and physician burnout. It is imperative for health care professionals to make time to address these challenges. Physicians give this advice to their patients and families, and they must also do this for themselves.
Lucy Kalanithi, an internist and the wife of a neurosurgeon diagnosed with cancer at 36, describes the following in her TED Talk that has been viewed more than one million times:
"Engaging in the full range of experience—living and dying, love and loss—is what we get to do," Kalanithi says. "Being human doesn't happen despite suffering—it happens within it."
To be sure, these conversations with families and patients need to be difficult. Otherwise, physicians and other health care professionals who encounter these challenging circumstances would be distancing themselves too much and getting away from the feelings and perspective they need to do their work well.
Part of doing this work well involves learning about one’s own emotions. Physician and author Rachel Remen developed a course for medical students, "The Healer’s Art," which guides them through the experience of grief and loss and later on into awe and wonder. Medical students (and instructors) are guided through a transformative experience that carries them through these emotions, learning that we cannot have one without the other.
Just as physicians learn about the latest medical advancements as part of continuing medical education, they need time and space for self-care and to develop realistic plans they can implement. Models for seminars that address stress, apathy and burnout and explore self-care of health professionals are starting to become available.
Physicians require sustenance to maintain a "capacity to respond." Training allows physicians and first responders to do their work, but they are also human, and need to deal with the emotional aftermath of that work. The crux and the art of practicing medicine lies in how physicians are present with their patients through their own loss and grief, so they may redefine their lives with meaning and with hope.