Editor's note: This popular story from the Daily Briefing's archives was republished on Jan. 13, 2020.
Writing in the Washington Post, Jeremy Topin, a critical care physician, reflects on his decision to provide life-saving treatment for a family member against the patient's previously expressed wishes, saying the experience highlighted how "binary" treatment options "can get messy" in real-life situations.
Download URMC's end-of-life conversation prompts
While working as a "young internist," Topin found himself in a position where he was asked to make treatment decisions about his wife's "healthy, independent," 87-year-old grandfather, Herb Lee, who was diagnosed with severe pneumonia that resulted in severe septic shock and kidney failure at the ED where Topin worked.
According to Topin, at the time, Lee "was unable to process" his symptoms—labored breathing, low oxygen levels, and fast and weak pulse—and "the only thing he wanted" was pain medicine. Topin added that Lee had previously "been clear" that "if he ended up in a hospital," he did not want life support or breathing assistance. But doctors in the ED wanted to treat Lee's pneumonia and sepsis, Topin recalls—and that treatment would require that Lee postpone pain medication and be intubated.
Topin writes, "What do you do when you disagree medically with a patient on matters of life and death? When there is no ability to have a thoughtful, patient, nuanced conversation over life support?" Topin questions whether Lee's previously expressed wishes meant "a 'hard no' to any intubation?" He adds, "What if the patient's decision for no intervention leads to a potentially premature or unnecessary death from a treatable illness?"
A medical 'win,' but not in the patient's eye
Ultimately, Topin chose "to treat, not to limit," opting for "paternalism over autonomy." Clinicians inserted a breathing tube into Lee, which was removed after about three days. Lee spent a week in the hospital, then went to a nursing facility. He was home within six weeks, Topin notes.
"In my world of critical care, this is a win," Topin writes. "It does not get much better than halting the progress of a life-threatening illness, supporting the body while it heals and nursing the patient through a hospitalization to an ultimate return home."
But Topin's grandfather-in-law saw things differently. Topin recalls the time when he asked his grandfather-in-law whether he had made the right call in providing treatment: Lee told him, "'I wouldn't want to go through that again,'" recalling sleepless nights, being "scared, confused," and "not knowing when light would finally come to end his darkness," Topin writes. According to Topin, the experience "was hell" for Lee, who said that "'if he could do it over again, ... it would be no.'"
The experience left Topin "shaken." He asks, "What does it mean when an unequivocal win in my world is not a win in the eyes of the person for whom it matters most?"
Have the tough conversations
According to Topin, "the intersection of critical illness, advance directives and end-of-life decisions is an uncomfortable place." Nonetheless, he urges people to "run toward ... the discomfort" and "to our family and friends and share what it is that makes life worth living—and when it's not." He adds that by "explor[ing] what 'quality of life' means for each of us ... we inject some much-needed light into the darkness and the fog, and help bring clarity when it's needed most."
Topin took Lee's perspective to heart, and when Lee later developed another serious illness, there was no confusion: The family "focused on Herb's comfort." Lee "died a few days later in the hospital, with the palliative assistance of hospice," Topin writes—an experience that Topin says continues to "help shed light when it's needed most and to help determine what a 'win' means for each of us" (Topin, Washington Post, 7/29).
Next, get URMC's end-of-life conversation prompts
When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.
Download URMC's conversation prompts to start improving end-of-life care for patients.