Bobby Nieland: “Life and death”

I believe that my personal discovery of the field of medical anthropology, though occurring relatively late in my time at university, has nonetheless been one of the most influential aspects of the liberal arts education that I attained at UNC. And though the readings from my med anth classes reached far and wide in content, one text in particular from a class with Professor Rivkin-Fish continues to stand out with rippling effects in my life: …And a Time to Die. How American Hospitals Shape the End of Life by Sharon Kaufman.

Kaufman’s book grapples with a topic that is by its very nature innumerable shades of grey in every respect. How do we think about death? How do we think about others’, our own, as a concept, or as an acute reality? How are specific ways of dying created and promoted in the American hospital setting? What sociocultural, political, and economic factors play into creating these paths and guiding (or forcing) people along them? How much of the decision process do you want responsibility for, or do you think you should be responsible for, in another’s death? In your own? How do you want to die? When? Where? Why do people think they can ultimately have a real choice when it comes to these questions? I hadn’t honestly thought in depth about many of these ideas before coming in contact with Kaufman’s book. My major take away from the text: death is an invaluable discussion to have with friends and family during life and any time is the right time. In respect to life and death, I personally believe that ignoring the inevitability of the later can truly detriment one’s experience of the former.

I would posit that there is an ethos of living forever that is a more fundamental yet seldom directly discussed aspect of our healthcare problems. Maybe it’s simply too complex to tackle head on in discourse. Maybe death is just too far in the future for the majority of people to see the delayed value in thinking about it now. Maybe people are too terrified by their present day encounters with death and dying. Maybe it’s all just too painful. Probably all of these and many more are true to a certain extent; however, ignoring or hiding from the subject, either consciously or unconsciously, on an individual or collective level, seems to me to be a terrible refusal of an absolutely necessary part of life: death. I think that such a refusal of dealing with or coming in contact with death is, in essence, a refusal of life.

Regardless of how accurate my above assessment may be, I can’t help but wonder what we might be collectively lacking, and if it’s necessarily specific or pronounced in our society (and/or others), that normally helps each of us to deal with our own individual mortality. Maybe thinking of it as individual mortality is part of that lacking. Recently I’ve found a lot of peace with these topic in reading about mythology and practicing meditation, but those activities aren’t for everyone, not to mention the fact that I’m blessed to have the time and resources to commit to them.

Getting back to Kaufman’s book; it has also played a continually contextualizing role with much other reading I’ve done over the past two years since graduating, most notably several books on mythology, The Origin of Species (I finally got around to actually reading it instead of just taking my biology professors’ word for it), and a recent re-reading of Guns Germs and Steel to name a select few that resonated particularly well.

Looking back over these recent years, I can say from experience that her book ended up supplying me with more conversation material and more tools for thinking about events in my own life than any other text I read in college, at least on a conscious level. The text, our med anth class discussions, and the resulting plethora of discussions outside of class in my daily life, have been central to many of my recent experiences, especially one in particular: my grandfather’s unusually long struggle with ALS and my family’s resulting awareness of the mortality, quality of life, imperatives, etc. ad mortem in all of our lives.

ALS is a disease of the nervous system, specifically concerning the innervation of muscle tissue, one of the most important functions of which is to sustain breathing. The majority of ALS patients die of suffocation or pneumonia within the first 2-4 years. My grandfather, going on 10 years, is among less than 4% of patients that make it that long. Thus, in our family’s case, we’ve had an unusually long time to think about, deal with, and make decisions concerning his health. In this respect we consider ourselves extremely lucky. The time has indeed been precious, not only since we’ve gotten so much more of it to spend with him, but also because our family hasn’t necessarily experienced the acute stress of making life determining decisions during a medical emergency or crisis where time is “of the essence.” This “decision making” under pressure is one of the main pillars of Kaufman’s book. “Deciding” to stop life support or not to do everything possible or take all precautions is, in America, viewed as choosing death, of oneself or a loved one. Is it really a choice? Can you make a rational choice in such a situation? Why does there have to be someone or something to blame? Kaufman asks why these feelings exist in our society. Where do they come from? What historical events and societal evolutions have occurred that support (as well as constrain) the dialogue we have in our country concerning death: Our particular fear of it, our particular rejection of it, and how this shapes all of our lives.

On a personal level I’ve viewed much of my family’s experience from the lens of her book and in the context of the ideas that I’ve garnered from it. Thus my med anth coursework interacted with my family life in a very profound way at a very important time in my life. It still does.

It has also greatly influenced my more recent experience working as a nursing assistant at UNC hospitals, specifically concerning my own patients’ lives, suffering, and deaths. I’ve been on the infectious disease/pulmonary unit at UNC for almost a year now and have experienced the deaths and dying of a fair share of my patients. More than a few have asked me personally for my thoughts on their conditions, choices, prognoses, life situations, etc. These range from the relatively theoretical, “What would you do?” and “What am I supposed to do?” to the highly acute: I had a patient within the past year that said to me, “I’m tired of all of this and I just want to die. Help me to die. Why are we still doing this?” From my experience, there has been almost nothing I’ve learned in school that can be used as an answer to such an honest admission and desperate request. Some of the specifics of his situation were that he had absolutely no continence and was too weak to move, let alone clean himself. Unfortunately he was also extremely ashamed of his lack of control which made the situation all the more difficult in respect to helping him retain some sense of dignity. I had to assist him almost every hour during my twelve hour shift, sometimes multiple times per hour, often enough having to change all of the bedding in the process because of the extent of his incontinence.

Thus, I asked myself many a time during my several days with him why indeed were we doing this? What was his family’s specific reasoning in sustaining this endless cycle for him? What part was I playing in this? How much control of the situation did any of us really have? I can’t say that I found any tangible answers to any of these questions, however it is one of the most striking examples of this questioning and choosing of death that I can think of from my time working as a nursing aid. I think the dynamic methodology that I’ve been exposed to through medical anthropology has allowed me to better internalize, draw connections between, and grow from such experiences.

My med anth coursework has also guided many conversations and debates with my four roommates and their many classmates who are all first year medical students. As a current student of public health, it has influenced my involvement in discourse about health care reform and health behavior. And in general, it finds its way into discussions of life and death with close friends when shooting the breeze about realities of the world as well as when thinking about my own aspirations to attend medical school, what field I want to go into, how my views on such topics would interact with future patients’, etc. I can truthfully say I’d never been remotely interested in geriatrics before reading Kaufman’s book, but as a result of that reading I’m much more open to exploring the field. I’ve also struggled in thinking about the role that the physician plays in their patients’ lives in terms of helping them make decisions, guiding them through the healthcare system, and the myriad other influences a doctor can have when it comes to pragmatically making decisions in real time situations dealing with death. Given that the physician has historically been and primarily continues to be the point person in our healthcare system, the responsibility is tremendous when it comes to avoiding harm through actions, as well as words. I think that becoming conscious of those unseen dynamics can potentially allow a much better navigation of the often shrouded world of end of life health care. Kaufman makes this very apparent in her book and I would extend her analysis by proposing that the large-scale impact on society of such an understanding could be profound in terms of easing the transition, helping to accept certain realities, assisting people in preparing for events, and dealing with the aftermath that death inevitably leaves behind. I sometimes wonder if it would be a better use of time for medical students to cut a day or two off of their other rotations (or some other curriculum shift) and spend time shadowing a chaplain. How would that kind of initiative affect our healthcare system? Our healthcare problems?

In that same vein, I’ve found that talking about death always seems to provide a quick and relatively easy way to bypass some of the more superficial barriers in everyday conversation and get to something deeper, assuming one’s audience is up to the task. It may seem obvious, but I think it’s worth pointing out that there are few topics more universal… granted many of the others are generally viewed as a bit more positive. However, I can’t help but feel as though death is pushed from the public spotlight far too quickly whenever it makes an appearance and that it would be healthy for our society as a whole if mortality occupied a more central place in public discourse. I don’t feel that I’ve personally seen death and dying discussed much, at least in the popular news media, with respect to health care reform. Oddly enough, I’ve found that the vast majority of people I broach the subject with have a lot to say, or at least very strong opinions on the matter, and many simply haven’t been provided with the tools to digest and organize their thoughts on the subject.

This is where medical anthropology has come in and become a pillar in my life. I believe that many of my above thoughts have been greatly guided by my courses with Professor Rivkin-Fish and other anthropological material I’ve come in contact with. If I could sum up my relatively brief yet insightful experience at UNC with this field of thought, I would say that it awakened an already present internal curiosity in me that needed some sort of tool set to be externally expressed. I found that many of the thoughts and questions I’d always had about the world simply needed a medium through which to be consciously asked and organized. With my first med anth class I became conscious of a shift in my active questioning of what is (and why), and to always explore when my intuition quietly whispers in the back of my mind telling me that something just doesn’t seem “right,” whatever that may mean. Thus, I’m still searching. For myself, for everyone I know, and for everyone I never will get the chance to meet. I’m part of that search. I’m taking part in the question.

Year of graduation: 2011

Profession/employment/ post-graduate study: CNA at UNC Memorial Hospital, Standardized Patient at UNC Medical School, post-bac student at UNC Gillings School of Global Public Health (take your pick!)

Most important “on the field” lesson: The ends are not the impetus for my means

Who and what inspires you: Joseph Campbell, my family, EM, GK, RW, and EP

Favorite anthropology book: …and a time to die. How American Hospitals Shape the End of Life by Sharon Kaufman

Favorite quote: “Follow your bliss”

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