On Long-Term Caregiving

The Good: the burdens our health care nonsystem places on long-term caregivers are finally being named and legitimized.

The Bad: the way this happens is by medicalization of such burdens.

The Ugly: science and biomedicine remain primary cultural legitimizing forces, which in and of itself is fine, but which often leads to scientism and medicalization.  I do not want to be misconstrued as either anti-science or anti-biomedicine; nothing could be further from the truth.  I simply think one needs to think critically about the social roles such practices fulfill. 

Both discourses are among the most powerful meaning-making practices in Western society, and that is wonderful insofar as there is great capacity for each to ease suffering.  But, like any powerful social narrative, there is danger afoot as well, and that danger increases in inverse proportion to one's hesitance to subject such practices to critical analysis.  Paul Starr's seminal work is excellent on this issue.

Recommended Reading: Carol Levine, "The Loneliness of the Long-Term Care Giver," in The Social Medicine Reader II, 2d ed., eds. Gail E. Henderson et al. (Durham, N.C.: Duke University Press, 2005): 299-306.

Comments

[Patrick S. O'Donnell]

I still remember the day I found a copy of Starr's book at one of our "used" bookstores at half price ($12.00!) a year or two after it was published (1982). Seminal, yes, and still relevant for its story of the consolidation of "professional authority" and the emergence of "corporate medicine." Next to it on my bookshelf is Charles Rosenberg's equally important volume, The Care of Strangers: The Rise of America's Hospital System (1987), another bargain find at $11.00! Basic Books indeed.

[Daniel Goldberg]

Definitely two "basic" books. The Journal of Health Politics, Policy, and Law had a theme issue on the 20th anniversary of Starr's book devoted to it. Good stuff all the way around.

[Frank]

Good points all. I was at a conference on the future of Medicaid where they talked about long-term caregivers' concerns, and how little society does to meet them. This is doubly deleterious: the caregiver may just give up, saddling MEdicaid with institutionalization responsibilities. Or the caregiver may experience ever-increasing stress, higher cortisol levels, etc.

For example, even taking care of an ailing parent who has many faculties can get to be overwhelming. Many of the caregivers wished only for a decent public transit system or subsidized cabs to get their loved one to the doctor when they couldn't. New Jersey actually does a good job trying to meet this need, as do some churches, but I shudder to think of what's happening in many places where people just can't get to the doctor.

Larger and harder issues raised by care for someone who is gradually losing mental and other faculties. The book "Ambiguous Loss" has some good studies of the grief this kind of caregiving can give rise to.

Finally, to speak a bit to the medicalization and scientism points: yes, it's odd that the only way that someone feels able to make a claim on society is to say "I'm sick myself!" That was one of the fascinating things about Moore's Sicko--when he showed the French system of helping mothers with newborns. The mothers did not have to say "I will become mentally ill if I don't have help." The society just has a sense that there is need there, and pitches in to help the person.

Of course, libertarians may argue that's because the French lack rationality:

"The Chairman of Cato's Board of Directors . . . asked why different Western countries have significantly different economic policies. 'I believe that levels of rationality vary from country to country,' Caplan replied. The French, in particular, fare poorly in this measurement."
from
http://www.prospect.org/cs/articles?article=the_myth_of_bryan_caplans_seriousness

[Daniel Goldberg]

Hey Frank,

Great comments. Really, logistics are often some of the largest barriers to care. It's partly why I think patient navigation is an extremely important paraprofessional field, particularly for long-term caregivers.

I'm shocked, shocked, I say at Cato's reaction . . .