Jon: Let’s breath in, acknowledge our emotions, and observe.
Soren: Yes, let’s do that. But what is the question you are willing to live for?
I am a medical resident working in an ICU in Boston. Most of the day, I try to embody the principles of mindfulness. I breathe deeply to myself, try to observe my emotions on a moment-by-moment basis, and cultivate compassion for my patients. I am an idealist, but the ICU is not an idealistic place. The silence of the halls, sealed windows, and soft hum of respirators at first arouse a sense of unease – then complacency. When asked why all of the windows are locked, an ICU nurse calmly responds “to keep the staff from jumping out.” She claims no one ever asks twice. At the same time, to see her dress a patient or interpret their heart monitor is to witness seasoned excellence.
There are three simultaneous narratives in the ICU: the stories we tell patients, those we tell ourselves, and those we reveal in public. I find that most of the day is spent trying to get these textured realities to converge. In the words of our attending physician, “There is a place we have to get each patient and family. It is our job to envision that place, and help them get there.” For some, this is transfer to the medical floor; for others, it is to control their pain such that they can die peacefully at home. To do this in the setting of an overly bureaucratized and interventional health care system is no small task.
Take the story of Mr. C, a 60 year-old man who came into the ICU, intubated after a heart attack in his yard. Mr. C wished to not be intubated or resuscitated, though when found outside his home in cardiac arrest, the EMT’s had no knowledge of these wishes. He spent 12 days on a ventilator, heavily sedated, and on day 13 was fortunate enough to successfully be taken off of the ventilator. As he emerged to a world he believed was 1953, we asked the family what his wishes are regarding “code status,” or whether he wanted resuscitation in the event of another heart attack.
He had undergone a kidney transplant four months ago, indicating to us that, at least recently, he had the will to live a long life. His family felt otherwise. His feeding tube was causing him distress, and his daughter forcefully told us “if he wants it out, that is his right. I will drive him home tonight to die.” After many permutations of justifying the medical benefits of the feeding tube and how this relates to his code status, we had reached an impasse. Finally, a lone soul turned to Mr. C and asked, “What do you have to live for?” He mumbled that he wanted to see his dogs at home. We told him that taking the tube out may precipitate his death, and asked if he wanted to die. He teared up, and staring down at his Johnny, said that he did not know.
The story we tell Mr. C and his family is one of uncertainty. We simply do not have the medical expertise to determine whether and how he will recover. He may need a wheelchair for the rest of his life, or may only live a few more weeks. We tell a different story in public to our colleagues: of the crazy daughter, of the waste of resources and effort to secure a precious kidney only to become DNR/DNI, and of the puzzling physiology of his brain injury. And the stories we tell to ourselves in private are exactly this – private. The modern notion of revealing one’s inner beliefs in the workplace, and how this may impact patient care are concepts that deserve more exploration. However, the disintegration of narratives speaks to an underlying tension in how medical culture approaches death.
Our healthcare system’s struggle with end-of-life care (cost, late referral to hospice services, untreated pain) stems from a culture of intervention and avoidance of death, but more profoundly, a lack of clarity about the most pressing questions affecting patients. As we medicalize death to a series of checklists about invasive measures and structure a labyrinthine system of documentation around such measures, we express a value judgment about the importance of the legal status of the patient (and our own legal liability). This value is not harmful in and of itself; but in cases like Mr. C’s, it can easily blind us to what type of life he wishes to lead. For me, the concept of mindfulness has helped me to keep an open mind to ask questions of larger concern. As for the content of such questions, I take inspiration from Kierkegaard’s commitment to self-inquiry to ask “what is the question you are willing to live for?” For Kierkegaard, to act ethically was not enacting a set of rules, principles or checklists. Rather, to engage in self-inquiry is itself ethical, even if such investigation is neither pleasant nor immediately fruitful. The strange thing is – if we take Kierkegaard’s question seriously, we may find clarity in envisioning where patients need to go, and how to get there.