It was the second week of 2015, and instead of joining my medical student peers in our first week of clinical year, I was racing north on I-95 from New York with my mom.
Her older sister was in the intensive care unit in a hospital north of Boston. By then, my aunt Daniella was the embodiment of iatrogenesis. A routine screening colonoscopy gone wrong meant a chunk of bowel accompanied the polyp they had attempted to resect.
Multiple surgeries followed, leaving her with insufficient bowel to absorb adequate nutrition. The central catheter (PICC line) in her arm was her literal lifeline. It was also a convenient superhighway for the antibiotic-resistant staph infection (methicillin-resistant staphylococcus aureus, or MRSA) that had set up shop in her bloodstream.
In preparation for my clinical year, my medical school instructors taught me about the importance of assessing the goals and wishes of patients at the end of life, particularly given the fallacy that TV medical dramas often depict, where CPR and mechanical ventilation are miracle life-extenders for all.
As we listened to the ICU team’s daily update, I naively assumed that the recommendations that followed would be well linked to my aunt’s goals. Instead, days passed, and though my aunt improved and became more herself, the medical team never asked what she would want if she got sicker. They never broached advanced care planning (ACP).
Daniella shared with my mom and me that she was tired of being so sick and tired of feeling stuck in the hospital’s revolving door. So, I asked my aunt the questions I’d just learned in class.
“What is most important to you?”
“If you were sicker and could not share your own medical wishes, what would you want us to tell your doctors about your goals?”
“Would you accept another ICU stay, CPR, a breathing tube?”
My mom and I drove home with crystal clear instructions from Daniella. If she got sicker, she wanted to die without prolonged suffering.
By July 2015, mid-way through my bowel resection-filled general surgery rotation, it seemed as if it was Groundhog Day. My mom and I sped up I-95 to the same ICU, to find my aunt in dire straits. MRSA was back in her blood, her lungs, everywhere.
She was confused, requiring multiple medications to maintain her blood pressure. But this time we knew she did not want to continue suffering. If she were awake and talking, she’d admonish us and the medical team for putting her through this.
So, we advocated for her wishes. The lines and tubes came out, the ICU was vacated, a big room with a pull-out couch became home for a 5-day vigil in our hospital-issue yellow gowns, designed to prevent MRSA spread.
Daniella’s best friend came, as did my mom’s. We played Joni Mitchell songs, looked at old photos, told stories, cried. Daniella died at 65, shortly after my grandmother reminded her, through the phone, how much she was loved and that it was OK to find peace.
Despite many doctors, hospitalizations, a years-long decline, and countless healthcare touch points, no one had asked Daniella how she was faring as her body failed.
Why did it require a medical student — me — just 4 months into training, to achieve an end of life consistent with her wishes?
One of the few facts that binds all patients is the inevitability of death. Many find it hard to get this step right. As a hospitalist, I strive to be for my patients the physician my aunt deserved. This is often an uphill battle with many barriers, even for those with the best of intentions.
While many physicians receive training for ACP in medical school, this may be their first and last exposure. Communication is a skill, just like a procedure, that requires repetitive and iterative honing.
Many doctors do not feel comfortable having these conversations after only a few hours of study. If this teaching is entirely housed in medicine clerkships, we inadvertently signal that the responsibility lies with some doctors and not others.
It is best if ACP is taught as a cycle of dialogue over time to allow for adaptive patient coping, an approach shown to be more effective than static conversations.
Other steps to ensure culture change include education in effective documentation of ACP as patient perspectives evolve; systemic efforts to ensure this documentation is accessible to all those caring for a patient; and inclusion of this skill as a necessary proficiency of a well-rounded physician, regardless of specialty.
Seeing ACP as the shared charge of a multi-disciplinary team would increase diverse clinician engagement and foster co-ownership. Ethnic, racial, and religious disparities are well-documented in ACP access. To avoid perpetuating inequities, medical school faculty and hospital administrators need to make efforts to improve these skills while taking these known disparities into account.
Medical teams have a pivotal role in end-of-life planning. My goal as a provider is to treat patients as partners in this process and to help them realize their agency. While clinicians cannot remove the pain and sadness associated with end of life, we can minimize the discomfort associated with families choosing for their loved ones.
I am lucky I knew just enough about the healthcare system to help my aunt articulate her wishes. I am grateful this meant I could unburden my mom from having to make a devastating, uninformed decision for her sister a few months later.
I was not Daniella’s doctor, I was her niece, and I carry this weight that was not mine to bear. Every patient deserves a medical team equipped to support them at the end of life. It is their right and we must oblige.
Gabrielle Kis Bromberg, MD, is an educator and academic hospitalist in Massachusetts General Hospital’s Department of Medicine in Boston. She is a Public Voices Fellow with The OpEd Project.
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