On Enduring

Recently I was cleaning out a file draw and found an essay Arthur Kleinman published in the Annals of Internal Medicine circa 1978. Far ahead of his time, Kleinman argued traditional biomedical solutions in health care were no longer effective. The focus of modern medicine is squarely focused on disease and healing. An abnormality is identified, a treatment program created with a single goal: cure the disease or physical deficit. This approach works—but not all the time. What happens when no cure exists? In my experience one enters into a liminal state or as Victor Tuner called it “betwixst and between”. A person such as myself who is paralyzed yet healthy symbolically represents the limits of medical care. I failed to be cured. As a result, my existence is deeply unsettling in most health care settings. Deeply stigmatized I am. 

When clinicians deal with a healthy person with a disability they typically respond in two ways: some become frustrated a cure does not exist and simply state “there is nothing more I can do for you”. This is counter productive if not demeaning. I have heard these words many times. I translate this statement to mean go away. You have a spoiled identity. Some clinicians simply state “I do not treat patients with severe disabilities. You should see a specialist”. Other clinicians fall into disease management mode. The focus is not on cure but maintaining current levels of function. Disability for both clinician and his or her “patient” is bad. Very bad in fact. So bad no avenue or course of treatment is left untried. I call these people “professional patients”. Another group exists: cure junkies. These people reject disability and they are preyed upon by physicians who are ever so close to cure and dangle this carrot in front of people with a disability who fail to adapt to a bodily deficit such spinal cord injury.

As I read Kleinman’s essay I thought of my recent post in which I suggested hospice care was a valuable way to approach end of life issues. Quite a few friends contacted me who did not like my suggestion. Their serious reservations have merit. Health care disparities for people with disabilities are wide spread. Many people with a disability at the end of life are not over treated as most fear but rather  under treated. Stories abound about how clinicians negatively assess “quality of life” for a person with a disability. Many people with a disability seeking basic health care are encouraged to die. The perception is they are needlessly suffering. Thus it is not  uncommon to hear the following: “We can make you comfortable with an alternative and less aggressive treatment protocol.” The so called alternative is death. The problem as I perceive it is that clinicians have a very narrow and insular perception of disease, illness and disability. Kleinman defined disease as “abnormalities in the structure and function of body organs and systems”. Clinicians identify what is physically wrong with the body. Illness in contrast is what a patient experiences when they are sick—and all disabled people are thought to be sick in some way. Remember this was written in 1978. Illness and disability were solidly linked together. I would like to believe we as a society have evolved and developed a more nuanced understanding of disability. Sadly, this is overly optimistic. Stigma, social isolation, poverty, and unemployment remain the norm for people with a disability. 

The lasting problem with life post disability is that health care professionals routinely ignore all issues that inevitably arise outside the confines of the institution in which they work. It is as though the larger world does not exist. No support or dissent is expressed when discharge options for a person are far less than ideal if not deadly. Discharage planners are powerless and not effective. For example, what good is the advice of a clinician who tells a homeless man or woman with a badly infected foot to keep the limb elevated, take anti-biotics, and change the dressing twice a day? The clinician might as well suggest a trip to Mars. Utterly absent is any thought of what Kleinman identified as the experience of living with an illness. Kleinman’s dated language is now easily framed as disability narrative. Such narratives are regularly dismissed by health care professionals as “anecdotal”. This drive me crazy. The memoirs produced by people with a disability are diverse and of the highest quality. Few if any are widely read among health care professionals. The result is ignorance of disability abounds. Much is known about diverse physical deficits but much negativity is associated with atypical bodies and people with a disability. Worse, disability is always perceived to be “bad”, an unfortunate departure from the norm. Well, when compared to typical bodies a person such as myself will fail the comparison test every single time. Lost is the knowledge gained from being atypical. We people with a disability often go through the medical mill. We learn much through our too often painful experiences. That is physical pain and the pain caused by bigotry and ignorance. 

Let me return to Kleinman. In Lancet he recently wrote an essay “How We Endure”.

Poverty, joblessness, migration, and other social realities of our era, along with the experience of major natural disasters, nonetheless revivify for many the importance of striving to endure. For professionals who complain of burn-out and for family caregivers who exhaust their own inner resources, for those involved in humanitarian assistance, and for many other people faced with unrelenting hardship, and physical and emotional burdens, it might prove useful to reconsider the value of enduring in human experience. Instead of asking why patients, caregivers, physicians, aid workers, and other health professionals burn out, suppose we ask how they endure? And I mean by endure withstand, live through, put up with, and suffer. I do not mean the currently fashionable and superficially optimistic idea of “resilience” as denoting a return to robust health and happiness. Those who have struggled in the darkness of their own pain or loss, or that of patients and loved ones, know that these experiences, even when left behind, leave traces that may be only remembered viscerally but shape their lives beyond.

I can comfortably state that I have endured much pain and suffering in my life. I had three massive surgeries, many lesser surgeries, prolonged hospitalizations (as in months on end), I was bed bound for almost a year. While I do not recommend what I experienced, through it all I matured and became a better person. I endured as Kleinman suggested with the knowledge I was not so resilient that I would return to the norm. We need to listen to those willing and able to endure. We need to listen to parents of infants born with profound disabilities. We need to listen to those parents that take of children with profound disabilities. we need to listen to those that care for elderly parents. We need to listen to people with disabilities such as myself. We need to listen to all those that endure over the course of the life cycle.  If we do this all will benefit. But we need to listen very carefully. We need to pay close attention to the words and phrases we use: patient centered care, quality of life, end of life issues, autonomy, medical futility etc. When I hear physicians utter those words I worry. As Ben Wilfond observed a decade ago the phrases above are not accurate clinical descriptions and instead serve to convey a normative view about the quality of life of others. It enables clinicians to characterize the use of anti-biotics as “aggressive” when treating a severely disabled person or a person near the end of their life when in fact use of such antibiotics would be typical be considered routine. In short, using the terms above hides what is really being judged: the quality of life of people who are different. This is a social problem all the medication in the world cannot cure.