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A Piece of My Mind
April 23/30, 2019

The Right to Grieve

Author Affiliations
  • 1Division of Stroke and Neurocritical Care, Department of Neurology, Northwestern University, Chicago, Illinois
JAMA. 2019;321(16):1569-1570. doi:10.1001/jama.2019.4265

“Should I go to the funeral?” I asked my sister, a neonatologist. She was frequently invited to the funeral of the babies she had taken care of. I also felt a twinge of shame, recalling an insensitive comment that I made years ago over the death of her patient. I had said, “Maybe the baby is better off now,” in a failed attempt to comfort her, in my mind emphasizing the medical and neurological complications the baby would have faced, projecting in the way I think about patients after severe brain injury. Didn’t she know what she was getting herself into? As I was asking for her advice, I could not help but ask myself, “Didn’t I know what I was getting myself into?”

She said calmly, “I cannot speak for you, but I try my best to attend the funerals that I am invited to. I have learned that I have better closure after I bawl my eyes out with the family. I have been surprised that families appreciated my presence. Maybe it shows that I did care and that I still care, which I do for a long time after the funeral.”

Death is part of life, and for many physicians, it becomes a routine element of the job. As a neurointensivist, providing support to family members of patients with severe brain injury as they choose death over prolongation of severe disability is one of the most gratifying elements of the job. However, frequent encounters of death and end-of-life decisions do not render immunity against emotional responses.

I experienced the tragic death of a young pregnant woman during the first week following my maternity leave. When I was invited to the funeral, I felt conflicted. While I was grateful for the invitation from the family to whom I felt deeply connected over the patient’s complicated course, I was afraid that my presence at the funeral would remind the family of my professional failure to save her. The patient’s unusual presentation, complex clinical course, and eventual death had triggered exhaustive formal and informal analyses of each management step with the family, colleagues, and hospital risk management, independent of the constant replay in my head wondering if there was anything I should have done differently. When the analyses concluded that no one was at fault, I still could not shake off the feeling that I was somehow responsible for her death.

I knew from the beginning that death was a possible outcome of the large brain bleed she presented with, yet I had been encouraged by the clinical trajectory and had become cautiously optimistic. Her acute deterioration and eventual progression to brain death left me feeling helpless and empty. I was sad and angry. I felt guilty while holding my healthy infant son who had both parents, unlike her prematurely born children. I searched the literature, unsuccessfully trying to answer impossible questions and fought tears from flowing unless I was alone. I feared appearing weak, emotional, or “hormonal.” I wanted to attend the funeral. But did I have the right to grieve her death, especially with the family whose sorrow I might be partially responsible for?

At work, her loss was palpable. The nurses, chaplain, social worker, advanced practice clinicians, and many physicians from different specialties involved in the care of my patient and her children were mourning. A neurology resident who had initially seen the patient in the obstetrics triage was having difficulties processing the family’s questions about his management decisions. Even though he and I both knew that he had made the right decisions and that an alternative management plan would not have changed the outcome, he felt that he was to blame. Soon I learned that many more residents were affected by the patient’s death, for which a group meeting with the residency program leadership was later held. Although I felt the responsibility to provide emotional support for the residents, I didn’t know how. I was worried that a bag of my unprocessed emotions would burst open if I opened my mouth. All I could manage to say was, “We all did absolutely everything we could have done,” knowing how hollow it sounded. It was the perception of personal and professional failure that was emotionally haunting. A resident apologetically said that she was deeply saddened even though she was only briefly involved in the care of the patient. Who has the right to feel sad, anyway?

Disenfranchised grief, a term describing grief that is not openly acknowledged, publicly mourned, or socially supported,1 is widespread across many fields of medicine. While the close family circle is accorded the right to grieve by society, the nature of the patient-physician relationship is not acknowledged to the same extent. Death of a patient can induce shame, self-doubt, and fear of lawsuit or judgment from peers to be inadequate, which can further isolate the physician and may increase the risk of unresolved emotions and maladaptive coping.

While physicians in all stages of medical training and practice report strong emotional responses to patient death, especially to sudden or unexpected death, different barriers to adequate coping may exist.2 In general, medical students and residents perceive patient deaths as more disturbing and unexpected than do attending physicians, yet they worry about crying and often address their emotions in isolation.3

Despite an increasing emphasis on empathic care of the dying as a core competency to master during training,4 very little formal training is offered in coping skills for the emotions that arise from the care of a dying patient. Residents may develop symptoms of posttraumatic stress disorder after patient death, with an increasing frequency as the level of training increases.5 While attending physicians are expected to provide support for physician trainees through the experience of a patient death, they may not always be able to do so because they are sometimes in need of support themselves. Even palliative care specialists who are considered “experts in death” may suffer silently, unable to reach out for support. Some physicians think about quitting clinical medicine after an emotional death of a patient, and maladaptive coping, such as avoidance of emotion and substance abuse, exists through all stages of medical training and practice.6 This may be perpetuated and exacerbated by the culture of medicine where physicians who cry risk being considered unprofessional, weak, or emotionally unstable.

However, negative attitudes toward expressing emotion following patient death have been associated with increased physician burnout.7 Despite an increasing attention to destructive effects of physician burnout, there is still no systemized way to support a grieving physician.

I did attend the funeral. I said goodbye to my patient who appeared beautiful and peaceful in her casket, replacing my last memory of her from the brain death examination. I saw a glimpse of her prior to the illness—full of life and love—through her photos and recollections from friends and relatives. I was one of many, many lives that she had touched. I cried with the family who comforted me, to my embarrassment. I saw the tears of her obstetrician. I wondered about the depth of his grief. And that of my neurosurgeon colleague. One thing was clear: All of us will carry her memory for the rest of our careers.

Nearly a year after the loss of my patient, I still think about her and her family. And I think about her triplets every time I walk across the bridge to the children’s hospital, the same bridge that they were transported over from the neonatal intensive care unit to say goodbye to their mother. I had visited her children and family a few times during their stay in the neonatal intensive care unit, but far less than the number of times I thought about doing so.

The memory of her seems as fresh in others as it is in me. During a recent journal club while discussing a new surgical technique to treat brain hemorrhage, her case came up as a potential example that we may treat better in the future. Our nurses are participating in an upcoming fundraising walk in honor of the patient, together with her family. I occasionally run into the hospital chaplain and social worker who share the family’s recent whereabouts. While I am hesitant to talk about the patient first, I am grateful that others do, perhaps because I need an external validation that it is okay to still be grieving.

When we strive to make a difference in the lives of our patients, our patients also touch our lives. Making sense of death involves the creation of an internal narrative, which requires adequate time and guidance to heal from guilt, sadness, isolation, and conflict. I hope that we can lift barriers that deny physicians the right to process our loss.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Minjee Kim, MD, 625 N Michigan Ave, Ste 1150, Chicago, IL 60611 (minjee.kim@northwestern.edu).

Conflict of Interest Disclosures: None reported.

Additional Contributions: I thank the patient’s husband and sister and the neurology resident for granting permission to publish this essay.

Doka  KJ.  Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington, MA: Lexington Books; 1989.
Redinbaugh  EM, Sullivan  AM, Block  SD,  et al.  Doctors’ emotional reactions to recent death of a patient: cross sectional study of hospital doctors.  BMJ. 2003;327(7408):185. doi:10.1136/bmj.327.7408.185PubMedGoogle ScholarCrossref
Rhodes-Kropf  J, Carmody  SS, Seltzer  D,  et al.  “This is just too awful; I just can’t believe I experienced that...”: medical students’ reactions to their “most memorable” patient death.  Acad Med. 2005;80(7):634-640. doi:10.1097/00001888-200507000-00005PubMedGoogle ScholarCrossref
Holloway  RG, Arnold  RM, Creutzfeldt  CJ,  et al; American Heart Association Stroke Council, Council on Cardiovascular and Stroke Nursing, and Council on Clinical Cardiology.  Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association.  Stroke. 2014;45(6):1887-1916. doi:10.1161/STR.0000000000000015PubMedGoogle ScholarCrossref
Mills  LD, Mills  TJ.  Symptoms of post-traumatic stress disorder among emergency medicine residents.  J Emerg Med. 2005;28(1):1-4. doi:10.1016/j.jemermed.2004.05.009PubMedGoogle ScholarCrossref
Baldwin  PJ, Dodd  M, Wrate  RM.  Young doctors’ health, II: health and health behaviour.  Soc Sci Med. 1997;45(1):41-44. doi:10.1016/S0277-9536(96)00307-3PubMedGoogle ScholarCrossref
Granek  L, Ben-David  M, Nakash  O,  et al.  Oncologists’ negative attitudes towards expressing emotion over patient death and burnout.  Support Care Cancer. 2017;25(5):1607-1614. doi:10.1007/s00520-016-3562-yPubMedGoogle ScholarCrossref
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