When Long-Term Caregivers Tell Their Stories, Outcomes Improve

Arthur Kleinman understands families like mine.  I know he does, because he wrote this:

The chronically ill (and their caregivers) often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land.  Chronicity for many is the dangerous crossing of the borders, the interminable waiting to exit and reenter normal everyday life, the perpetual uncertainty of whether one can return at all.  To pass through this world of limbo is to move through a “nervous” system, a realm of menacing uncertainty.  

For some the passage is not so difficult; for others it becomes routine like so much else in life; yet for others it involves despair at being stuck in a place one has come to hate and fear.  This image should also alert us to the social nature of chronicity: the entrance and exit formalities, the visas, the different languages and etiquettes, the guards and functionaries and hucksters at the border crossing points, and especially the relatives and friends who press their faces against windows to wave a sad goodbye, who carry sometimes the heaviest baggage, who sit in the same waiting rooms, and who even travel through the same land of limbo, experiencing similar worry, hurt, uncertainty and loss.  Social movement for the chronically ill is back and forth through rituals of separation, transition and reincorporation, as exacerbation leads to remission and then circles back to worsening and so on.  (The Illness Narratives, 1988)

The loneliness that Kleinman describes comes from the feeling that everyone else is living a different, 'healthy' life. And no one has stopped to truly understand the experience of longterm illness and caregiving.  Luckily, Kleinman has offered some thoughts on re-imagining the way in which professionals care for the vulnerable and their families.  He begins by suggesting a major transformation of training for health professionals and proposes a new methodology that is rooted in ‘empathetic listening, translation and interpretation’.  The practical steps in building this new professional training would begin with recording a ‘mini-ethnography’ or life history of the patient and his or her family.  The neurologist treating my son’s first seizure would have discovered in my life history that I had been traumatized as a teenager by witnessing my father having a post- stroke seizure while the two of us were alone at home.  I was almost immobilized by fear when I realized years later that Nicholas might have epilepsy. 

Next, Kleinman proposes ‘the explanatory model followed by negotiation’.  Once a professional understands the lived experience of a person requiring care, he or she can converse with the patient and family to compare understandings of the illness, the treatment options and how to agree on a course of action.  Everyone in the room might answer questions such as “What do you think is wrong?  What caused it?  What do you want me to do?  What do you think will happen if you have this or that treatment?”  Of course, no one is going to take time to build consensus in this manner if there is an emergency situation, but in chronic care, consensus is critical to minimizing regret, frustration or anger over the long term.

Finally, Kleinman proposes a process of ‘remoralization or a process of medical psychotherapy’ for doctors seeking to be truly helpful to their patients with chronic illness.  He describes a series of appointments wherein patients can discuss their sense of loss; a talking therapy moving the patient from grief to restitution. This process, as Kleinman describes it, isn't about talking therapy instead of practical healing. Not at all. It's about doctor and patient/family coming to a place of shared understanding so that informed decisions for healing can take place.

If I could, I would make it mandatory for all student doctors to complete a rotation in community medicine.  For all doctors to have the experience of visiting homes and observing the real lives of patients living with chronic care conditions would go a long way to achieving Kleinman’s ideal of empathetic listening and understanding the life histories of patients and families. 

Arthur Kleinman wrote “The Illness Narratives” in 1988.  There has been a lot of water under the bridge since then – that was the same year that my son Nicholas was born with severe disabilities.  Since 1988, much has stayed the same and much has changed, some for the good.  Consider this pearl of Kleinman’s wisdom:

The study of illness meanings is not only about one particular individual’s experience; it is also very much about social networks, social situations, and different forms of social reality.  Illness meanings are shared and negotiated.  They are an integral dimension of lives lived together.  Had we examined work settings, schools or other of the major institutions of society, we would have arrived at the same point.  Illness is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world.  For the practitioner, as for the anthropologist, an enquiry into the meanings of illness is a journey into relationships.

I knew these ideas to be true long before I ever heard about Kleinman and his work.  I allied myself with the work of the PLAN Institute and with the innovative social network coordination tool, Tyze.  These entities were created in order to create social support networks around vulnerable individuals, but also to allow professionals, patients and their families to share information, listen empathetically and to negotiate treatment plans by engaging in one, ongoing ‘real life’ conversation about care and treatment choices.

Can it ever be possible to have a de-medicalized model of social, community and family based medicine for long-term care patients including the elderly and their families?  I think it is and Arthur Kleinman has given us a very good place to start.