Wednesday, May 28, 2014


     A recent NYT column by Perri Klass speaks posthumously about her aging mother, managing to avoid  knee-jerk, pithy conclusions. A semester has flown by since I wrote here last, a blur too-filled by seven graduate classes, in the seemingly farcical pursuit of  a distant, perhaps mythic, psychiatric nurse practitioner license. My most memorable clinical rotation took me into the homes, more aptly termed  the 'rooms',  and often simply the bedrooms of older adults, meeting them solo, as a nurse experiencing the provider role for the first time.

     The semester prior, I'd lost an argument that has since haunted me. One of my professors, a therapist by training, had skirmished with me over whether people suffering from a terminal painful disease have a right to call it quits. This spring's clinical brought the discussion into sharper focus, as most of the older adults I evaluated (and I use that term loosely, as I often groped blindly about) were suffering from some combination of illness, dementia, and 'depression'. During that argument, I'd taken the seemingly callous position of advocating for those who simply want to put an end to their litany of misery and loss. I'd argued that it was a rational choice, because we, the younger, the healthy, unassailed by death and infirmity, have simply no idea how much these people have borne, or will have to bear, and that in such a context, suicide is a rational, if not a kind, choice.

    My posited stance was heresy, a tough sell to an audience of psych-nurse-practitioner wanna-bees, ready to pounce on any opportunity to write scripts for anti-depressants, never mind the portentous professor. Splutteringly: did  I fail to understand my ethical obligations, my duty as a provider? How could I be so irresponsible, when these people were obviously suffering from profound depression! Not for me to know what was in their hearts and minds, simply my duty to rescue.... Setting aside the pretense of righteous indignation, my argument was reduced to bearing witness: the reality that many of these folks were living what had to be anyone's worst nightmare, squared.

     Death of a spouse, any remaining friends, loss of adult children, blindness, Parkinsons, dementia and Alzheimers, loss of mobility, incontinence. The continual degrading of any sense of dignity as increasingly more banal tasks, such as showering or taking a pill, become offloaded to a rotating cast of backstage minions. The 'ethical obligation' to effectively compel anyone to endure such a life would seem to convert my healer role to something akin to an overseer.

      I'm a big-picture person; a scant five years ago when I completed nursing school, the curriculum still required a course in Nursing Theory, a class that many protested and derided. Wherever they happened to complete that course, it's obvious that the utility of it has been lost on most nurses, as it is often mistakenly cited to me as the first example of why nurses don't need a bachelor's degree to enter the profession. I was fortunate enough to encounter a Nursing Theory professor who asked us to consider what we believed the task of nursing consists of, what is nursing about, what makes it different from the role of a physician, for example? From  there, we were asked to take our beliefs and find the closest nursing theorist who matched them; I chose Sociologist Anselm Strauss' theory of the Trajectory of an Illness. Briefly: just as our lives have an arc, so do death and illness; as caregivers, we must consider the biography of our patients, their life experience, in crafting a plan of care with them. Or, as one of my feminist classmates better schooled me, 'nothing about me without me'   as a manifesto in providing care. It's an honor and a privilege to nurse people in their most vulnerable time of life, never more so than when facing terminal illness, the ebbing of all one's sensory faculties, and the crushing loss of companionship of anyone we ever held dear.

     That day in class, I failed to persuade my therapist professor (or my classmates)  that buoyed as we are by denial, good health, and relative youth, we simply cannot conceive the perspective of the aging, debilitated older adult. But we can feel it; when we enter their homes, their little rooms in frighteningly expensive oh so carefully crafted assisted living spaces, where the sum total of a life has been reduced to a few framed photographs, an afghan-wrapped single bed, and an armchair, all in view of the kitchen sink, the microwave, and the water closet. I was working in what was considered one of the best facilities in the state, where such fine accoutrements and recreational facilities came at a frightening price. As one resident in her nineties confided to me quite simply: 'I had no idea I'd live this long. I don't know if the money will hold out.' Compared to the ravages of assisted living on one's income, a nursing home doesn't look like such a bad end, after all. The choice: gamble on spending just a few final years in somewhat illusory cushioned comfort, with a modicum of privacy; or  suck it up and deal with a roommate in a nursing home, leaving one's heirs a decent nest egg. Cartoonist Roz Chast boldly gave voice to such thoughts in her recent graphic novel, Can't We Talk About Something More Pleasant?  as interviewed by Terry Gross on NPR's Fresh Air.

     Is it ugly or merely realistic to talk about the economic calculations of care? Trained as a clinical nurse leader, one who quantifies the dimensions of the micro-system, I can't help but contemplate this, along with the knowledge  that very few in our society are privileged enough to even begin to make such choices.