It’s midnight, and I have just told a shaken family that their nonagenarian matriarch would likely pass before the sun rose. She has had a devastating brain hemorrhage and despite being on a ventilator and other medical interventions, we already see signs that it is insufficient to keep her body functioning. One of my patient’s daughters does not fully understand; her mother has been hospitalized many times before and always pulled through with the support of her doctors. What was different this time? She tearfully repeats the question, again and again. Though I do have a concrete, scientific answer for her, I wonder the same thing - what was different?
I am relatively early in my training as a neurologist, but I have often found myself asking this question when delivering end of life news to my patients’ families. I have come to believe the difference is less that the science has changed and more that we are intercepting people at a different part of their story. Often, I borrow from the metaphor of the hero’s journey or monomyth, popularized in narratology by Joseph Cambell. The model describes how many stories from around the world follow a specific pattern. The hero or heroine receives a call to adventure, traverses an abyss of challenges, grows in some way, and then returns home transformed. It is not a perfect model, and has been justifiably criticized both for its vagueness and the cherry-picked stories Campbell drew upon to develop it. Nonetheless, it has been an apt metaphor for trials that people face, both in fiction and reality. Others have written about how the monomyth describes their own journeys as patients or medical professionals, especially with regards to diagnosis and chronic pain. I find myself using it when talking about the end of life.
Many people see death as the end of the journey - a return of sorts to whatever state they believe they or others will exist in once life leaves their bodies. It therefore makes sense to see death as the enemy. No one wants to see the end of their own story, let alone that of a loved one.
That night, I asked to hear about my patient’s story. I asked not only because it mattered who she was or because hours of palliative care didactics recommended I do so. I asked because I have seen that allowing a dying person’s family to explore their journey grants a perspective that I as a stranger cannot. It allows people to see their loved ones not as victims or losers but as protagonists, taking the next step forward. For those who see death as an ending or return home, the metaphor allows them to draw the lens back and see the whole journey rather than focus on this moment. For others, it allows them to reframe the end of life as yet another challenge that their loved one would face and pass through. The cyclical nature of the monomyth brings some people comfort as well. They can redirect the energy from their battle against grief towards a celebration of an ongoing journey.
In my case, reframing allowed me to answer the question posed by my patient’s daughter. What was different this time? In this case, my patient’s hemorrhage was not another challenge to overcome before returning home. This was, in fact, the return. That was what her family believed. They believed that the patient would want a palliative extubation, and chose that option to help her on her journey. Reframing her death did not make it joyous or nullify the grief. In some ways, it only magnified it. But just as the patient was passing through the stages of her journey, so too were her family members. I wondered where and when I was arriving in their stories. Was I a helper, early in their tale? Or did I represent the abyss that they must pass through, my reflex hammer a poor facade for the scythe I secretly brought into the room?