End-of-life medical advice: Devaluing patients in name of greater good?

Sarah Palin‘s "death panel" description polarized the nation; it was dismissed by proponents of the Patient Protection and Affordable Care Act (PPACA) as "pure demagoguery," and taken up by PPACA critics as a cudgel with which to pound "Obamacare."

I'd like to offer an intermediate perspective of sorts - one that recognizes PPACA isn't calling for death panels, but also acknowledges why that concern seems especially salient.

The idea that our healthcare system can make dying with dignity difficult has been effectively communicated - see this poignant New Yorker piece by Atul Gawande, and this recent, heartbreaking New York Magazine article by Michael Wolff. 

One take-away is that proactive discussions about end-of-life care, coupled with the ability of the health system to more effectively and more willingly implement these wishes, could be an unarguably good thing for patients and families.  Moreover, in response to the "death panel" uproar, a provision for "voluntary advanced care planning" - a discussion about end-of-life preferences - was removed as an element of the annual wellness visit for Medicare patients, even though it's hard to see - especially in the context of the Gawande and Wolff pieces - why this discussion in itself would be objectionable.

The anxiety about "death with dignity" comes when you start to layer in costs.  For instance, there's the frequently-invoked concern that a disproportionate amount of our healthcare dollar is spent on the last six months of life; many seem to believe that these dollars could be - and should be - more effectively spent.

Or, as Washington Post reader "leskruth" bluntly commented, "Americans are unwilling to die gracefully, even if it bankrupts their children's and our future."

This argument is also informed by bioethicists (mostly academic, it must be said, and mostly left-leaning), who often argue that the way our healthcare dollars are now spent is frequently market-driven and in any case fundamentally unethical; these scarce resources, they contend, should be allocated - redistributed? - in a more equitable fashion (see here for representative recent discussion). 

Rationing is already occurring, they (and others) argue; we should acknowledge it and do it in a more sensible, ethical, and deliberate fashion.  (And by the way, we're happy to organize the committees you'll need to help you do this.)

When you put these perspectives together, it sounds a lot like this: "The ethical solution to our current healthcare challenges is to try and redistribute spend from the elderly and the hopelessly sick to others who need it more, especially the underprivileged; this redistribution will require committees to make difficult decisions; bioethicists can be helpful here."

I've always felt that the defining aspect of medicine was an impassioned advocacy for the patient in your care.  This doesn't mean ordering unnecessary tests, and it should include advanced planning discussions - but it also entails a commitment not to write off a patient in the name of a greater good. 

Yes, a lot of money is spent on the last six months - but this strikes me as more a statistical feature than anything else; what would an alternative spend distribution look like? 

It's important to recognize that first, we often don't know just how near the end is, and second, even if we have a clear idea, then so what?  If someone is diagnosed with late stage pancreatic cancer or certain types of brain tumors, should we tell them that for the good of society, please don't rack up additional bills, the treatments probably won't do much good anyway? 

(To be clear: if a patient decides to forego intensive therapy, that might be an ideal personal choice for that individual patient; but the decision shouldn't result from a doctor steering a patient away from potentially useful treatments in order to preserve resources for the system.)

What worries me the most here isn't that we're going to embark on some kind of "Euthanize Gramps" program, but rather the considerably more realistic concern that we're moving towards a "slow code" view of the sick and elderly. 

In the hospital, a "slow code" refers to a situation in which a medical team goes through the motions of resuscitating a patient, but in a less-than earnest fashion - a representative scenario might be when a terminally ill patient without a "do not resuscitate" advanced directive stops breathing.  The idea is that the letter of the law is followed, but so-called "common sense" is also obeyed.  (To their credit, most bioethicists have strongly critiqued this response.)

I worry that if medicine slowly and subtly shifts to a view that an old or sick person who wants to continue to live and receive aggressive care is selfish, and "wasting" (the new buzzword - see here) resources that could more "ethically" be redistributed elsewhere, the lives of these patients will become meaningfully devalued, just like the patients who receive a slow code.  I saw something similar happen to my beloved uncle several years ago at a leading New York oncology center, as I described in this NYT op-ed, and the experience is still jarring.

How horrible it would be for elderly and the sick patients, who already have so much to worry about, to have to begin to ask about whether their doctor's advice is truly in the best interest of the patient, or reflects an effort to sacrifice the patient in the name of the greater good.  How horrible for the patients, and how destructive for medicine. 

I suspect that much of the debate stimulated by the "death panels" allegation reflect concerns that many Americans - including me - feel when we learn of do-good initiatives put together by correct-thinking academics presented as advancing the best interest of The People.  This may make perfect sense in the classroom, but in the real world, it's hard to escape the thought that these sorts of lofty efforts intended do good for People in the Future are more likely to harm the care of individual people in the present, and erode the very dignity of life that health policy at its core, should seek to defend.

 

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