Both of my elderly parents (z”l) passed away this year. They lived long and productive lives into their 90s. My mother, a teacher and librarian, died in May 2018 from staphylococcal septicemia with multiple cerebral emboli from an occult infection. My father, an influential environmental attorney, died in October 2018 from underlying heart and pulmonary problems, exacerbated by an incarcerated hernia and ileus. He also died from a broken heart after 69 years of marriage.
Their primary care and hospital-based physicians were unable to make definitive diagnoses in a timely manner to guide treatment. My living in another state and being unable to be actively involved in the day-to-day clinical decision making relating to their care (other than via phone and email contact with several of their physicians) was a source of frustration and guilt. I also knew, however, that given my parents’ advanced ages and significant comorbidities, it was uncertain whether any therapeutic interventions would ultimately have made any real difference in the outcomes.
The experience of their deaths raised a host of difficult questions for me both personally and professionally: (1) How should I deal with my parents’ deaths while supporting the rest of my family? (2) How should I deal with physician colleagues who missed making diagnoses, prescribed inappropriate treatment, and didn’t communicate with us after my parents’ deaths? (3) What should I be teaching myself and other learners about these subjects as a family medicine educator?
With regard to the first question, the sudden death of my father who was still actively working as an attorney created a profound sense of loss and shock. My family and I were still grieving the death of our mother, so this opened up yet another significant emotional wound. Sometimes people turn to faith and religion for support. Although raised in the Jewish tradition, our family was not very religiously observant. Nevertheless, we felt it important to tap into the rich and supportive body of Jewish religious rituals relating to the care of the deceased, funeral and burial practices, and other mourning customs.1 We found comfort and meaning and honored both of our parents by having a private graveside burial with a rabbi, reciting kaddish prayers, sitting shiva, and receiving love and care from family and friends during the first weeks following their deaths.
It was even tougher to deal with the second question relating to my feelings about medical colleagues who provided suboptimal care to my parents. I have always found the BATHE technique2 we teach about in family medicine to be very helpful, and have previously described the use of the AUTO-BATHE as a self-reflective tool for “taking one’s own pulse.”3 What happened? How do I feel about the situation? What troubles me the most? How can I handle things? What empathy can I offer to myself? I was certainly upset and angry with the physicians and hospital, but was not interested in pursuing any legal actions. I also felt, however, that I couldn’t remain silent about the quality of medical care and communication provided.
Several weeks after my father’s death, I decided to send a letter to one of my parents’ physicians who had made a number of home visits. The sharing of my professional concerns about the inadequate care provided also served as a type of personal catharsis for me. I was particularly troubled by the physician’s failure to be diligent in following up on a regular basis, consistently respond to emails and phone calls, come to the home in a timely manner when assistance was requested, examine them in a careful and thorough manner, order the necessary diagnostic tests, and provide the appropriate treatment. I was also concerned that the physician never bothered to find out about my father’s (and previously my mother’s) health status after being admitted to the hospital on different occasions. Did the physician even know that my father had passed away, as there was no further follow up or contact with us?
I ended the letter by saying:
My hope going forward is that you will take away some important lessons from this, change your style of practice, and improve the quality of your clinical care and communication with all patients and their families in the future. Please don’t run away from caring for dying patients and their families.
Unfortunately, I have not yet received any response from the physician to my letter. I remain troubled about the reasons for this continuing silence.
With regard to the third question about the adequacy of our teaching about death, dying, and bereavement, the answer is probably no. While our medical school and residency training programs are increasingly addressing issues relating to end-of-life care for patients, less is taught about how to communicate effectively with families after the death of a loved one. I’ve spoken with several faculty colleagues who shared similar stories of frustration with the quality of medical care and communication received relating to family members who had passed away. Further, how well have I supported my faculty colleagues and others who are dealing with their own grief when patients or loved ones die? I certainly wonder whether my parents’ deaths may have also affected the physicians involved in their care. We are all wounded healers, and further dialogue can sometimes help in the ongoing grieving process, as well as in bringing some measure of acceptance and closure.
After doing some research, I now have a better understanding of the reasons why physicians deal or don’t deal with grief, interpersonal and cultural barriers to grieving, and the impact on clinician well-being and patient care.4 I also learned about compassionate communication strategies that can help grieving families (eg, a phone call, a condolence or sympathy card, a visit to pay respects, an offer to refer for bereavement counseling or support services)5 that we also would have greatly appreciated receiving. I hope to be able to incorporate this important content into the classes I teach.
I am mindful of the theologian Paul Tillich’s famous quote, “The fatal pedagogical error is to throw answers like stones at the heads of those who have not yet asked the questions.” I also suspect that the not-so-hidden curriculum will continue to make addressing these difficult topics in medical education a challenge.
My family and I are still sad and grieving. The mourning will take time. It has been a difficult year with multiple losses, but also one in which I remain grateful and will continue to try and find meaning, purpose, and blessings in each and every day.
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