A different perspective

could versus should

As part of my orientation when moving from critical care nursing to hospice work, I watched a PBS Frontline documentary entitled “Being Mortal.” Adapted from physician Atul Gawande’s bestselling book of the same name, the film explores personal stories from individuals facing terminal prognoses and Gawande’s own evolution as an advocate for self-determination at the end of life. Most importantly, Gawande asks the question, with all modern medicine can do for a person, should all those things be done?

I believe it was that very question that had led me to change track in my nursing career. In the hospital, I would sometimes care for dying patients as they lay in hospital beds, without family, connected to tubes and instruments. Those times were my first direct experiences with dying, and even as a nurse, I recognized the indelicate and impersonal backdrop, the technological sounds over the soft sounds of breathing - the unnaturalness. I was unsure how to improve upon the situations, so sometimes I would just hold their hands.

Medicine, especially in our competitive, performance-driven culture, focuses on “fixing things.” In his book, Gawande admits he was never taught how to deal with death and dying while in medical school. The emphasis was on diagnosing disease and then finding appropriate treatments and cures. Even now, many physicians shy away from the subject of death. They often don’t discuss the topic at all or leave it to someone else on the care team. And while patients themselves often tire of endless hospital trips and testing, their family members tend to grasp at any available intervention. Emotionally they are afraid of losing their loved one, but they also have been inadvertently programmed to view anything less as “giving up.”

Regardless of their feelings about it, nearly everyone acknowledges that death is an inevitable part of life. Living things, including us humans, have experienced it for millennia. Along the way, and for various reasons, we began to distance ourselves from it, learn to fear it, and even ignore and deny it. So many times during the course of my work I have heard, “I don’t know how you do this job.”

In this push to fend off death, medical advances have provided life-changing as well as life-saving interventions. But the management of the risk versus benefit scale is and should be a personal endeavor, and the balancing of it often changes as one ages. Sometimes less is more. I believe it is important to recognize that it is the patient, when facing their own mortality, who should make those decisions between could and should. My time as a hospice nurse has shown me that almost all patients attain a peace before their time, even if their loved ones do not, but also that the body knows how to handle the act of dying all on its own. Medicines can provide comfort during the process, of course, but the best offerings we can give the dying are presence and love.