Envisioning a Better Future for Caregivers

Arthur Kleinman understands families like mine.  I know he does, because he wrote this:
The chronically ill
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 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)
Luckily, Kleinman has offered some thoughts on restructuring
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 be first the execution of 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
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 may be helpful, but it is my personal opinion that a
better solution for professionals caring for people with disabilities or those
who are infirm due to their age would be an imperative 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. 
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 ongoing care and treatment
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?  I think it is and
Arthur Kleinman has given us a very good place to start.