Caregiving as moral experience

By Arthur Kleinman
The Lancet
Volume 380, Issue 9853, Pages 1550 - 1551
3 November 2012


Everyone who has been in love or built a family knows that there are things, essential things, that money can't buy. Patients with serious illness and their network of caregivers know this too, because those things that really matter to us are threatened and must be defended. And many clinicians, reflecting on what is at stake in health care not only for patients but for themselves, know the same thing: the market has an important role in health-care financing and health systems reform, but it should not reach into those quintessentials of caregiving that speak to what is most deeply human in medicine and in living. This is the moral limit of an economic paradigm. Or at least it should be.

But we live in a truly confused age. The market model seems to have infiltrated so thoroughly into human lives and medicine that in certain circles—policy making and analysis, hospital and clinic administration, and even clinical work—economic rationality with its imperative of containing costs and maximising efficiency has come to mute the moral, emotional, religious, and aesthetic expressions of patients and caregivers. Most take it for granted and accept its implications. Models from economic psychology, behavioural economics, and business studies, based on the narrowest calculations of what a “rational” person would choose as most cost-effective, are now routinely applied to clinical decision making and the organisation of care.

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The great failure of contemporary medicine to promote caregiving as an existential practice and moral vision that resists reduction to the market model or the clarion call of efficiency has diminished professionals, patients, and family caregivers alike. It has enabled a noisy and ubiquitous market to all but silence different motives, ideals, hopes, and behaviours that must be expressed, because they are as much who we are as economic rationality.

The entire piece is here.


doi:10.1016/S0140-6736(12)61870-4

The Trial of “Death by Medicine”

By Daniel Callahan

The Hastings Center

Originally published on 02/13/2012

On February 5, Lisa Krieger, a science and medicine writer for the Mercury News in San Jose, Ca, published a remarkably moving and insightful article about the protracted dying of her 88-year-old father. Suffering from advanced dementia he contracted septicemia, was admitted to the ICU of the Stanford Hospital, and then spent 10 days going miserably downhill. As Krieger put it, “The medical nightmare started, as they so often do, incrementally.”

While her father had made clear prior to his dementia that he wanted to die a “natural death,” what he got what he got was an unnatural “death by medicine,” as someone once put it. The total cost for the hospital stay alone was $323,000. Again and again Krieger had to make a decision about going on, as one crisis after another surfaced. With each new crisis, the doctors offered hope. There was, they said, “a decent chance we could turn it around.” They could not, and he finally died. But as the days moved along from one crisis after another, Krieger kept asking herself, Was it all worth it? “Should we have quit?” she wrote. And when?

I have come to think that the decisions about stopping life-sustaining treatments may have become harder, not easier, since the 1960s, when the reform movement was gaining momentum. Medicine has become increasingly skilled technologically in keeping the dying alive. Her father, Krieger noted, “thanks to modern medicine . . . lived decades longer than his father.” That same medicine gave him a miserable death. That is a dilemma of modern medicine we have yet to resolve.

I put some questions to Krieger, and here are her responses.

  

As you have reflected in the aftermath of your father’s death, what kind of advice might you now give to someone in a similar situation?

This is what I would have done differently: I would have asked for a road map. A plan. Even if it’s just a back-of-the-envelope flow chart. What are we doing, and why?

I would have asked earlier: “Where are we headed, with all this? What’s the view from 30,000 feet up? Let’s say he survives and makes it out these hospital doors. Then what?”

I wish someone had told me about the range of choices. Not just: “Do You Have a DNR? Treatment or not?” Rather: “We can do everything. Or we can do some things, but not others. Or we can do nothing, but keep him comfortable.” That conversation never happened.

I think it is possible to have a conversation about options in aggressive treatment and palliative careat the same time-- early on, maybe upon entering the ER, or even when there is the initial dementia diagnosis. Not when things go south in the ICU. Because then you keep waiting for the perfect time to stop. There is no perfect time.

The entire story is here.