Lessons in the Meaning of Illness, Aging and Disability

In the days, months and years since my father’s first stroke, since the birth of my two children, since the diagnosis of our son’s disabilities and more recently, since my mother’s increasing infirmity, I have scoured books and my own memories to find meaning in my caregiving experiences.

With my Dad and with Nicholas, there was, for a time, a chorus of ‘whys’ in my head…. why them?  why us?  why me?  My Mum’s challenges are more organic, they come at the end of her long life, so I don’t rail against them in quite the same way.

Arthur Kleinman’s “The Illness Narratives: A Method for the Care of the Chronically Ill” was written in 1988, but it is still utterly relevant, especially to the range of family caregiving experiences in my life.  As I was reading, I felt that Kleinman was speaking to me.

Kleinman asserts: “We must begin with the premise that chronic disease by definition cannot be cured, that indeed the quest for cure is a dangerous myth that serves patient and practitioner poorly.  It distracts their attention from step-by-step behaviors that lessen suffering, even if they do not magically heal the disease.  Patient and practitoner both need to accept that the primary goal of treatment is the reduction of disablement in the ongoing experience of an illness.”  

And make no mistake, our society construes old age as disease – aging is no longer a natural process, it’s a chronic illness.  So, it’s not only Nicholas we’re talking about here.

When I have been most frustrated, most desperate, most misunderstood and mistrusted by the very physicians who were meant to be helping us, I believe it was because we, the family, so completely misunderstood the professionals’ ideas of intended outcomes.  The family and the treatment team were operating on different planets.

Kleinman writes, “Today there is in North America, a wholly unrealistic popular expectation that all diseases should be treatable and that no medical encounter should lead to a negative outcome.”  I am guilty.  I held that belief and when major interventions produced unintended, horrible outcomes, I was angry.   I was confused and I was still desperately hopeful that another intervention could and must be found to ‘cure’ what ailed my father, my son and my mother.

What Kleinman so gently but insistently presents is a vision of professionals working with families to collaboratively negotiate treatment based on real, shared knowledge of each other’s perceptions of the illness and effects on personal and family life.  Kleinman presents the case for an intelligent, informed acceptance of natural processes, of suffering, of trying and sometimes winning…. and sometimes losing the battle against disease.  And he’s talking about disease that has morphed into a life of illness.

Kleinman proposes an investigative process to put everyone (patient, family and professionals) on the same page.  He would ask all concerned, “What do you think is wrong?  What do you think caused it?  What do you want me to do?  What is the chief way this illness (or treatment) has affected your life?  What do you fear most about this illness or treatment?”  These are just a few of Kleinman’s excellent and probing questions.  All are designed to lay assumptions on the table and compare them – an exercise that would have saved my family enormous pain, had we known to do it.

Not all medical professionals are ready, willing or able to engage with patients and their families in this manner.  It may be considered ‘unscientific’ at the worst and ‘too time consuming’ at the least.  But Kleinman lays out (with compelling case histories) very, very good reasons why we should all try.

I haven’t finished yet thinking about this book – I know that it’s one I’ll keep coming back to.  There is so much I still need to understand in order to find the delicate balance between accepting that which I cannot change or cure, ‘fighting back’ and working together effectively with professionals for the good of the people I love.

In my next post, I’ll reflect on how Kleinman’s perspective can inform our thinking about changing systems to support families giving care.