Do the Right ThingRae Allain, MD Sep 6, 2022
The 1989 film, directed by Spike Lee, is enjoying a comeback this summer due to its relevance to today’s Black Lives Matter movement and a resurgence of violent, racially motivated attacks. I was reminded of the film by a flyer posted in my hometown theater announcing it would be featured as part of a community forum on diversity. “Wow!” I thought. But exactly what does it mean—“Do the Right Thing?”
In my professional world, “Do the Right Thing” means advocating for my patient, even when that is more laborious, time-consuming, frustrating, and emotionally toiling. Recently, in my role as an ICU doctor, I assumed care for an 88-year-old woman with pneumonia. Di, short for Diana, was a nursing home resident for more than 10 years, suffering from advanced dementia, schizophrenia, obesity, and a multitude of related medical problems. Staff at her facility were her only companions as they bathed her, turned her in bed, administered her medications, and fed her through her PEG tube. Any daily enjoyment for Di came from the staff reading to her from her Bible ever since diabetes had left her blind. Lately, though, she didn’t interact at all, barely speaking single words. When Di aspirated and developed pneumonia, she came to my hospital where the Emergency Department physician checked her code status and immediately intubated her.
Here she now lay, a plastic tube in her windpipe, connected to a ventilator, unmoving, and not improving after more than two weeks of intensive care. “We’re planning a trach at the end of this week,” the nurse practitioner in the ICU reported. I looked at the elderly woman lying before me, horrified, and turned to my team. Was I missing something? Inflicting a tracheostomy on this woman? For what purpose? It was clear to me that she was dying—didn’t others appreciate this, too? “I know,” the NP said, “none of us feel good about this, but we can’t reach the health care proxy, we can’t get her off the vent, and her paperwork from the nursing home says she’s a full code, so the hospital lawyers say we have to do everything.”
Over the next four days, I valiantly attempted to find Roseline, Di’s niece and health care proxy. I scoured the paperwork for missed telephone numbers, contacted the nursing home administration, and “Googled” Roseline’s name for clues about her whereabouts. I called the two phone numbers listed in her paperwork twice per day and left voicemail messages urging her to call back. As the close of the workweek drew near and we headed into a holiday weekend with still no communication from Roselie, I heard from the hospital’s attorney that the hospital would be pursuing legal guardianship for Di, a process that can take as long as three months. I pictured her with a tracheostomy, still connected to a ventilator, while the guardianship process plodded through the courts.
On Saturday, with an unexpectedly quiet ICU, I dialed Roselie’s number yet again, expecting the now familiar voicemail message. The phone rang twice before, much to my surprise, she answered! I explained that Di was in the hospital, critically ill, receiving life support. Did she know? No, she stated, she had never been contacted by the nursing home. As the conversation continued, however, she contradicted herself repeatedly, telling me that her husband had been to visit Di in the hospital several times that week. She asked for my name and I waited for her to obtain pen and paper so that she could write it down. A few minutes later she again asked me my name followed by the same question several minutes later. I reminded her that she had written it down and had her read it back to me, realizing that Di likely wasn’t the only case of dementia in the family. Roselie explained that she had high blood pressure which prevented her from visiting Di, but that her husband, Jean Claude, would be home soon and could call me back. I hung up, praying that Jean Claude would get the message.
He did call me back and we arranged to meet the next day. Jean Claude and his son Louis arrived promptly on Sunday morning. They confirmed that Roselie had dementia and was increasingly forgetful. They hadn’t seen Di in several years. At the last visit, Di told them not to come back. I heard about Di’s life, immigrating from Haiti, working in a variety of jobs, and raising Roselie, her sister’s child, as her own. She had never married, had no other family, and, with her “strong personality,” had alienated most of her friends. Jean Claude and Louis weren’t aware that Di had been diagnosed with dementia. I explained that she had very advanced dementia, hadn’t been speaking for months, and that now with pneumonia, she was on life support. I shared with him that the medical team advised removing Di’s breathing tube and letting her die peacefully. He agreed that this was what Roselie would want if she could understand Di’s situation. I explained the care that Di would receive and then Jean Claude and Louis visited Di for the last time.
After we extubated Di, I sent a message to the hospital lawyer, notifying him that Di’s health care proxy lacked capacity due to dementia, but that Roselie’s husband and son had visited and agreed with the recommendation to remove life support. Neither Jean Claude’s nor Louis’ name appeared anywhere on Di’s advance directive documents. I recognized the legal quagmire in which this potentially placed me. But following the legally sanctioned path would no doubt result in a tracheostomy for Di, abhorrent as that was. Sometimes, as caregivers we must take a risk to Do the Right Thing.