As the busy days of a long, gray winter drag on and an early season of Lent has begun, this column flows from reflections on life, death, and the promise of a new season of spring and green trees, hopefully coming soon – no matter what that groundhog saw.
Clinical ethics consultation often involves end of life (EOL) care. When I recall patients from my career, many memories are of patients who died. I trained with an intensivist who said he felt he was under less stress than the general pediatricians. While his patients were sicker, if one of his patients died, it was not unexpected. The presumption was that in the ICU everything possible had been done. General pediatricians rarely have a patient who dies. When they do, everyone, including the pediatrician, will ponder over whether something might have been caught earlier or something could have been done differently. But the most difficult problems in pediatric EOL care involve deciding when to stop aggressive care and let nature take its course.
I think the natural tendency for scholars is to approach difficult decisions by seeking more information. The delusion (which scholars can usually elucidate in great postmodern detail as long as it doesn’t apply to our own behavior) is that extensive information and deep reflection will lead to the best, most accurate, immutable, and nonambivalent declaration of goals, desires, values, and intents. To even make this delusion plausible, a sci-fi writer had to create a nonhuman species of Vulcans. But medical ethicists routinely apply this paradigm to existentially frightening EOL matters in a medical world full of prognostic uncertainty. Ethicists have recommended that this method of decision making be adopted by a population with low health literacy and a predilection to using Tinder.
For the internists, EOL care is mostly about specifying which modalities to use and which to limit. Over time, it became evident that a single check box, labeled Do Not Resuscitate yes/no, was insufficient to capture patient preferences. I recall once seeing a draft document with 49 boxes. It was clearly unwieldy. Most states that have adopted a POLST (Physician Orders for Life-Sustaining Treatment) paradigm have settled for forms with five to seven options. I think that if it were possible to capture advance directives better than that, eharmony.com, with its plethora of questions, would have already created an app for it. In adult medicine, we always can lament that the conversation about EOL care was too brief, but in my experience raising expectations of a more comprehensive discussion usually lowers the likelihood of people ever undertaking even an abbreviated conversation. In ethics, if you raise the bar high enough, people seem to walk under it.
Pediatrics at the EOL tends to focus discussion more on the goals of care, the likely outcomes, and the quality of life. These perspectives are then sometimes mapped, with poor reliability, onto the POLST paradigm designed for adults. Parents are usually at the bedside often enough to recognize their child’s suffering during aggressive care. Surrogate decision makers for adult EOL care occasionally lack that insight.
While advance directive documents are helpful, I don’t think there is a substitute for a physician motivated by empathy and a caring, involved surrogate decision maker at bedside. Providing information is not the key focus. The process should emphasize building trusting relationships, clear understanding, and reasonable expectations. I am reminded in those situations of an ancient quote : Medical care is “to cure sometimes, to relieve often, and to comfort always.”
Dr. Powell is a pediatric hospitalist and clinical ethics consultant living in St. Louis. Dr. Powell said he had no relevant financial disclosures or conflicts of interest. E-mail him at pdnews@frontlinemedcom.com.
