Demystifying Medicine One Month at a Time

Tag: coercion

Horseshoes & Hand Grenades

Well, it was close.

I was fortunate to be selected as a finalist in a national essay contest about the frequently-outrageous-and-almost-never-transparent costs of obtaining medical care.

But I didn’t win any of the big prizes. Out of eight finalists, I got an honorable mention.

It’s not the destination…it’s the journey.

And being selected in the first wave still feels good–like someone out there is listening.

I wrote about this issue previously (complete with embedded video!). The scientific paper that discusses the research we did has been accepted for publication and will be out very soon (look for an update on this blog and a tweet or two).

Here, then, is the narrative version of what inspired the work and how we did it:

[All names and identifying features of characters in this story have been changed.]

Nora, a third year medical student, came to me in moral distress.

Ms. DiFazio, one of the hospitalized patients on her Internal Medicine rotation, was frightened to undergo an invasive (and expensive) medical procedure: cardiac catheterization.

The first year doctor [‘intern’] with whom Nora was paired, Dr. White, vented to her:

“These patients come to us seeking our help and then refuse what we have to offer them,” Dr. White steamed.

At the bedside, the intern demanded to know why Ms. DiFazio refused the procedure. When no reason beyond “I don’t want to” was offered, Dr. White told Ms. DiFazio that there was no longer cause for her to stay in the hospital.

By declining the procedure, Dr. White informed Ms. DiFazio that she would have to sign out ‘against medical advice’ (AMA). To signify this she would have to acknowledge that leaving AMA could result in serious harm or death. In addition, Ms. DiFazio would bear responsibility for any and all hospital charges incurred and not reimbursed by her insurance due to such a decision.

“The threat of a huge hospital bill got Ms. DiFazio to stay and take the test,” Nora related.  “It just seems so wrong to bludgeon a patient this way. Can it possibly be true?”

I’d been out of medical school myself for eight years at that point; until then I’d never heard that patients who sign out against medical advice risk bearing the costs of their hospitalization. What about a patient’s freedom of choice, or as we like to call it in medicine, their autonomy?

I told Nora I didn’t know, but was determined to find out. Ethically, the notion that patients in the hospital must do our bidding or pay the price seemed dubious. Yet in a world of co-pays, deductibles, and ‘preexisting conditions,’ a mere grain of plausibility made this idea seem vaguely credible.

I asked around. To my surprise, many fellow attending physicians told me they had been taught the very same thing. My colleagues had trained at teaching institutions around the country, so I began to see this as a pervasive and widely-held belief.

I straw polled some of our residents, and like Dr. White, found that they almost unanimously believed that AMA discharges incurred financial penalties. Where did they learn this?

From their attendings.

From the nurses.

From the AMA form itself, with language stating that the patient, by signing, acknowledges financial risk.

We needed to find the truth.

Colleagues helped us sift through nearly ten years of AMA discharges from our teaching hospital. And though the results are in press at a medical journal, I can say that out of hundreds of cases of AMA discharges over a decade, in only a handful was the bill was not paid—and that was invariably due to ‘administrative issues,’ not because of the AMA discharge.

I also thought it important to go to the source: I called the insurance companies themselves. I talked with VPs and media relations people from several of the nation’s largest private insurance carriers.

Each of them told me that the idea of a patient leaving AMA and having to foot their bill is bunk: nothing more than a medical urban legend.

They were glad to tell me so, as this was a rare occasion of insurance companies looking magnanimous. One director went so far as to poll his company’s own medical directors—a half dozen of them–and found that several of them had been taught and believed the canard about AMA discharge and financial responsibility. He was happy to set the record straight.

So patients and doctors beware: The next time you or your loved one has decided that it’s time to leave the hospital, don’t let us doctors coerce you into staying by threatening you with the bill.

It simply isn’t true that leaving against medical advice makes it fall entirely upon your pocketbook.

Future Noras should feel empowered to set the record straight with their interns and residents. Most of all, the Ms. DiFazios of the world won’t have to submit to procedures that they don’t wish to undergo.

You can read a press account about the contest winners here. And if you have a story about the costs of care that you’d like to share, I’d love to hear about it.

Mississippi Learning

Governor Haley Barbour of Mississippi recently suspended the life sentences of sisters Gladys and Jamie Scott on the condition that Gladys donate a kidney to her older sister Jamie, who has end-stage kidney failure and is dependent on dialysis treatment three times per week.

Gladys (36) and Jamie (38) Scott (photo: Guardian, UK)

The sisters served sixteen years of their life sentences, and had become a cause celebre in social justice circles (both the NAACP and the ACLU were involved in their petitions to overturn the sentences) for the harshness of their punishments. Their crime?

In 1994 they were convicted of being accomplices to an armed robbery that netted the main bandits $11 in cash, according to press reports.

Barbour is on record stating that he no longer felt the sisters were a danger to society. That and Jamie’s dialysis is costing the state prison system on the order of $200k per year.

In her petition for pardon, younger sister Gladys came up with the idea to donate one of her kidneys to her big sister. She was quoted as saying that she made the decision herself and would go through with it, pardon or no pardon. [The sisters were pointedly not pardoned; they merely had their sentences suspended. Their petition to seek pardons continues, with or without a transplant.]

The conditional release set off a furor in parts of the medical community, particularly the transplant and medical ethics sectors. The President of the American Society of Transplantation wrote a letter to Governor Barbour “respectfully requesting” him to de-link the kidney donation from the suspension of their sentences. The linkage gives the impression of a quid-pro-quo: “You donate your kidney, we’ll let you out of jail.” Such coercive tactics are not morally, ethically, or legally permitted in the United States, where the law of the land (NOTA, 1984) forbids commerce (or even ‘objects of value’) in exchange for organs.

I’ve thought about this story a lot; I concluded it would be fun and interesting to break down the plot and its meanings from all of the players’ perspectives:

Jamie Scott: I’m sick: Sick of being in jail for a pretty small crime, and sick from kidney disease. Did I mention sick of dialysis treatments? Verdict: Win-win: out of jail, and possibly a kidney which will be better treatment.

Gladys Scott: I’m happy to help my sister, jail or no jail. Governor wants me to donate as a condition of getting out, then so be it. I’d do it anyway. Verdict: win-win, doing a mitzvah, getting out of jail. Potential cost: donor surgery. Also, potential for re-incarceration if she doesn’t wind up donating, though pundits think that’s unlikely.

Governor Barbour: I’m letting these sisters out, which seems like the right thing. But I’m extracting the promise that one sister will donate to the other. This pleases my conservative constituencies. Verdict: win-win, he gets to placate both sides by his actions, and look fiscally prudent as well (the state will save the estimated $200k per year). The sisters promptly moved to Florida after their release, which will invoke federal and Florida money for their future health care needs.

Other patients awaiting kidney transplants: There’s hope that one day our country will increase the likelihood of someone donating to me by offering incentives to do so. Verdict: hung jury.

Other potential kidney donors: This lady got something in return for her kidney (her freedom). What will I get other than gratitude? Surely my kidney must have some market value? Maybe at least if I go through with this I could get my health care for life paid for? Verdict: double jeopardy.

The hospital where the proposed transplant may happen in the future: We’ll benefit from the media attention; we must be careful not to look like we condone the Governor’s quid-pro-quo appearing deal, and say the ‘right’ things. Verdict: win, with some downside potential.

Medical ethicists: This trade defies our current norms; there is a lot of debate in our community about compensating donors; most stakeholders remain resolutely opposed to compensating donors, though there seems to be a rising chorus of critics interested in changing these norms. Verdict: lose-lose, looking like sticks in the mud (implying that for principle Gladys should stay in jail), and having our values trampled by political (and medical/economic) opportunism.

What are your opinions on this story?

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