The Hippocratic Math: Bioethics, Choice, and the Bottom Line

How does American society address the vulnerability of the body? We rarely stop to think about how quickly a disease or accident can derail even the best of lives. For the hundreds of millions of people who live on a few dollars a day, medical care is rare and haphazard. The US has gradually put in place a vast infrastructure of law and institutions designed to provide its citizens with quality, affordable, and accessible care. The proper limits of such care are hard to discern. Gregg Bloche’s book The Hippocratic Myth gives some excellent examples to reflect upon as the Affordable Care Act slowly begins to influence the health care delivery system.

Not many policymakers or scholars can write with the authority of Gregg Bloche. Bloche is not only a law professor, but also a physician, who knows his way around a hospital. Throughout The Hippocratic Myth, Bloche cements his authority in the mind of the reader by relating stories of his experience as a clinician. In each of these stories, his humane and insightful approach as psychiatrist shines through. I do not say this to imply that block uses his book to brag about his own abilities. Rather, these fluently written passages strike one as the work of one of those rare practitioners who manages to care deeply about the patient at hand while simultaneously contextualizing the encounter in a larger framework. Thus The Hippocratic Myth should take its place among other well-received books by physicians with a sense of the big picture (including Atul Gawande’s Checklist and Better and Jerome Groopman’s How Doctors Think.)

In The Hippocratic Myth, Bloche leverages this authority to advocate for a more cost sensitive health care system where individuals frankly acknowledge that they should expect trade-offs between cost and access to certain forms of care. My concern in this review is that Bloche the caring and expert physician would have a tough time in a health care world too deeply influenced by Bloche the cost-conscious author. To be sure, Bloche consciously shies away from proposing particular limits to care, and sets forth a surprisingly wide array of topics his work will not cover:

What does it take to make a health plans cost-benefit balancing principles so vivid and clear to consumers when they sign up that we can say they have consciously chosen to abide by them? Should the health plans be required by law to adopt a single, shared way of declaring their trade-off policies— say, maximum dollar amount per expected life year that they’ll spend on tests and treatments? How about a checklist of representative services, ranging from urgent care services to screening tests, that are or aren’t covered? And how much choice between health plans (and trade-off rules) is enough to make for a decent menu of options? Finally, what should be done about disparities in wealth? is there a decent minimum of buying power (and public subsidies) below which real choice between trade-off rules isn’t possible? these are matters of policy and politics, beyond my scope in this book. But they’ll need to become the focus of public attention, leading to agreements, if we are to enlist the nation’s support for limit setting by health plans and their doctors. (107)

Nevertheless, it is clear throughout the book that Bloche is deeply concerned about cutting costs. The question is whether we can, in good conscience, rally behind his crusade for cuts based on individual choices without coalescing beforehand on the types of specific mechanisms or redistributive measures that would cushion the blow of a transition to more restrictions on care in America’s comparatively market oriented healthcare system.

Mrs. Pearson’s Dialysis Appointments

Dialysis is a thorny issue in American health care. The US guarantees payment for dialysis care for anyone with kidney failure. Robin Fields at ProPublica has exposed massive failings in our system: “the United States continues to have one of the industrialized world’s highest mortality rates for dialysis care,” even though the “two corporate chains that dominate the dialysis-care system are consistently profitable, together making about $2 billion in operating profits a year.” Fields notes that, “if our system performed as well as Italy’s, or France’s, or Japan’s, thousands fewer patients would die each year.” Thus dialysis has become for many a case study in both the pathologies of a profit driven health care system and the willful weakness of a national government that guarantees payment for care, but fails to ensure that it is high quality or up to international standards.

Few people realize how tiring and stressful life can be for those subject to dialysis sessions. In an excellent article on racial disparities in kidney transplants, Vanessa Grubbs discusses the travails of one dialysis patient she is close to:

The weekends were hardest for Robert. Without functioning kidneys, he struggled with limiting his liquid intake in the face of constant thirst. The stretch from late Friday morning to Monday morning, his longest time between [dialysis] sessions, was the worst. Without fail, Monday mornings I would wake to the sounds of Robert vomiting, even though he shut the bathroom door, ran the exhaust fan, and turned on the shower to drown out his retching as he prepared to leave for dialysis. His body was ridding itself of the excess fluid the only way it could.

In Bloche’s book, we get another intimate look at dialysis, through the eyes of a Mrs. Pearson (a pseudonym), who has been undergoing the treatment for several years. Narrative matters in bioethics and health policy, and Bloche is a master at evoking critical details in Pearson’s story. Described as a “trim African-American woman in her late 50s,” Pearson decided at one point to discontinue dialysis. Her doctor called Bloche, a psychiatrist, to interview Pearson to assure that she was competent to make a decision that would result in her death within a few weeks. Bloche conducts a routine mental status exam, and quickly determines that Pearson is fully mentally competent to discontinue treatment. She states that she simply cannot continue to be jabbed with thick needles, often leading to painful wounds, to endure hours of blood filtration day after day. She is neither agitated nor depressed, but rather appears to be quietly resigned to the fatal consequences of giving up on the treatment. As Bloche observes,

From an ethical point of view, my duty was clear. If Mrs. Pearson grasped the stakes, and was alert and oriented, she had a right to refuse treatment. She passed these tests easily. The dialysis would have to stop. It was my job to write the note saying so. Without a competent patient’s informed consent, no test or treatment is ethical – at least none more intrusive than a needlestick or Tylenol at bedtime.

Bloche then adds the requisite note to Pearson’s file. But he has lingering doubts about her decision, articulating his unease in a question—was her response to her predicament “too rational?” This question reminded me of literature on the pathologization of shyness—do we need an emotional performance nowadays to have evidence of a sound mind? But Bloche is the psychiatrist, not me, and it’s a good thing he was in charge of this situation: his hunch panned out. In a follow-up interview, Bloche finds that a scheduling decision by the hospital sparked Pearson’s desire to quit dialysis.

She had been going during the day; they wanted her to come at night. Pearson felt powerless and angry. To Bloche, the decision to discontinue dialysis was the only way in which she could register a protest against authorities who were distant and arbitrary. Behind the scenes, Bloche arranges to keep the daytime scheduling, despite the extra costs it may incur.

Archimedean Points for Health Care Debates: Cost-Containment or Equity?

Here Bloche puts into action a conviction he had raised earlier in the book. It’s worth quoting the context in full, to give a sense of the minefield of advocacy contemporary health policy encompasses.

That distrust, and the trials and humiliations that many experience when making their way through our health system, depresses the level and quality of the care that African-Americans receive. . . . [But] it’s been urged that African-Americans and others who don’t seek the best, life-prolonging care for themselves and their loved ones act irresponsibly and have themselves to blame. . . . Clark Havighurst, a retired law professor at Duke who was once Ronald Reagan’s health policy advisor, complained to me that [those who complain about health disparities] missed the real unfairness: blacks who prefer less care pay the same insurance premiums as whites and thus subsidize whites’ higher use of health services. The remedy, he told me, is cheaper health plans for those who want less care.

Whether clinical judgment should corporate these purported African-American “preferences” for less care or aspire toward therapeutic equity is a political question. It’s my belief that we owe black Americans— and members of other disadvantaged groups— an effort to address the fear and distrust that have led so many to miss out on life extending care and clinical relationships. (92-93)

Bloche is right to state that, given the endless series of studies documenting health disparities, the US as a society owes underprivileged minorities special efforts to provide care.

But Bloche chooses a strange locution for this call to justice. Whereas he has apodeictic certainty that health care costs must come down, he treats his commitment to equality as merely one “political” view. I believe that precisely the opposite is the case: we can engage in endless political arguments about the overall level of health care spending, but these debates must be grounded in a social commitment to a certain baseline of care for all. Nevertheless, I greatly appreciate the careful and sensitive attention that Bloche gives these topics.

Dialysis and the Problem of Unintended Consequences

A recent New York Times article by Gina Kolata highlighted the debate surrounding dialysis as an end-of-life treatment.  In reading the article and surfing the internet for counter-arguments, I found two points of interest.

Background

According to the Medicare ESRD Network Organizations Manual, Section 299I of the Social Security Amendments of 1972, Pub. Law 92-603, which “created the National End Stage Renal Disease (ESRD) Program … [and] extended Medicare coverage to individuals with ESRD who require either dialysis or transplantation to maintain life.”  In addition, depending on your perspective, Sec. 299I requires/limits the entitlements for/to individuals under the age of 65 who have insurance coverage (remember this age and insurance coverage part — it will be important later in the discussion).

By the time the legislation was adopted in 1972, only 10,000 individuals were being dialyzed in the country and only 20,000 to 25,000 were considered candidates for the procedure.  Section 299I was estimated to cost $250 million over the first four years.  Now, according to the N.Y. Times, about 400,000 people will undergo dialysis at an estimated cost of $40 billion to $50 billion in this year alone.

Has the entitlement had the unintended consequence of benefiting those over 65?

Kolata argues that this law was intended “to keep young and middle-aged people alive and productive” and has had the unintended consequence of financing dialysis treatment for (primarily elderly) individuals who are too sick to benefit from the treatment.  She explains:

When Congress established the entitlement to pay for kidney patients in October 1972… [Congress expected] that most of those patients would be healthy — except for their failed kidneys — and under age 54.

Now… More than a third of the patients are 65 or older, and they account for about 42 percent of the costs. People over 75 make up the fastest-growing group of dialysis patients. And most elderly dialysis patients have other serious diseases like diabetes, heart failure, stroke and even advanced dementia. One-third of them have four or more chronic conditions.

Others, however, would argue that Sec. 299I has not benefited the elderly because they were already entitled to Medicare coverage prior to its enactment.  In the “Dialysis from the sharp end of the needle” blog, Bill Peckham writes in response to Kolata’s argument:

No no no. Dialyzors who are “old and have other medical problems” have access to Medicare due to age or disability, “patients who take advantage of the law” are few: only about 25,000 people [out of about 417,000] have access to Medicare as a consequence of Section 299I of the Social Security Amendments of 1972.

Well…  According to Kaiser, the source of Peckham’s figures, only 5.8% of Medicare enrollees with ESRD directly benefit from Section 299I.  But what about indirect benefits? A comprehensive history of Section 299I can be found in Origins of the Medicare Kidney Disease Entitlement: The Social Security Amendments of 1972, a chapter in Biomedical Politics.  Richard A. Rettig writes:

It was presumed that the benefit existed for the elderly, however, because a Medicare benefit could not be established for those under 65 and not be available for the elderly. In fact, very few elderly persons were being dialized at the time and none were receiving transplants.  Although the Bureau of Health Insurance had answered several inquiries in the previous year, the nature and extent of coverage for the elderly had not been clarified.

The entitlement for those under the age of 65 extends from the third month after “a course of renal dialysis is initiated” until a year after the person has a renal transplant or ends the course of dialysis.  This section could have been read to provide an entitlement to dialysis and renal transplant solely to those under the age of 65, or it could be interpreted to create a near universal entitlement to such treatments.

It seems that President Nixon’s administration read Section 299I according the latter interpretation, because in his statement on the Signing of the Social Security Amendment of 1972 Nixon said, “it extends Medicare coverage for kidney transplants and renal dialysis.”

Aggressive Treatment and End of Life Care

“Clearly, when the program was initiated in the 1970s, the hope and expectation was that this program would return otherwise healthy people back into society so they could work and be productive,” said Dr. Manjula Kurella Tamura, a kidney specialist at Stanford. But, she added, “dialysis at the end of life is a different sort of treatment.”

A second important aspect of the article is its focus on end-of-life care.  Even Peckham concedes that, “caring for the elderly is expensive and aggressive treatment may not always be in the interest of the ill. That is a serious discussion our electorate should have but has not been able to have.”

The article highlights new clinical practice guidelines produced by the Renal Physicians Association designed to promote, through shared decision-making and informed consent, “medical management without dialysis.”  Particularly concerning is that the provision of dialysis gives patients false hope of survival.  According to the NY Times:

Recent studies have found that dialysis does not prolong life for many elderly people with other serious chronic illnesses. One study found that the procedure’s main effect is to increase the chances that such patients will die in the hospital rather than at home.

Yet, a 78-year-old woman is quoted as saying, “I go to dialysis because I want to live.  I want dialysis.”  Although he doctors explained that dialysis would not necessarily prolong her life, she chose aggressive treatment because, “Some life is better than no life.”  This anecdotal story raises a HUGE informed consent problem because it appears that the patient may not have understood the risks and benefits of undergoing dialysis.

Key to the decision to forego, commence, or withdraw dialysis is a properly informed consent. The above guidelines state that certain patients, including those age 75 years and older, those with high comorbidity scores, those with marked functional impairment, or those with severe chronic malnutrition, “should be informed that dialysis may not confer a survival advantage or improve functional status over medical management without dialysis and that dialysis entails significant burdens that may detract from their quality of life.”

***

The ESRD program has provided life-saving dialysis to many people.  However, as with many other tests and treatments performed in the last year of life, it is important to ensure that patients (or their legal decision-makers) are properly informed about the risks and benefits of all options, including palliative care, at the end of life.

Donate a Kidney and Get Out of Jail

I can’t read another paean to Mississippi Gov. Haley Barbour for granting a release from imprisonment to Gladys Scott on condition that she “donate” a kidney to her sister.

The Scott sisters were sentenced to life 16 years ago for an armed robbery that yielded them $11. The women will be eligible for parole in 2014.

Civil rights advocates have sought the two women’s release for some years, arguing that their sentences were excessive.

Barbour’s decision has been hailed by the NAACP President and CEO as “a shining example of the way a governor should use the power of clemency.” A primary reason cited by Barbour for his decision is that sister Jamie’s dialysis is costing the state a lot of money. According to Gladys Scott’s attorney, the idea that she donate a kidney to her sister was her own, which is why he included it in the petition for release.

While available reports do not provide sufficient facts for robust legal-moral analysis, this story raises issues that should give us pause.

First and foremost, I am concerned on Gladys Scott’s behalf that a kidney donation is in neither her short- or long-term best interests - I can only wonder whether her own health makes her an ideal donor after serving a 16-year prison sentence.

We don’t know what led to Jamie’s end-stage renal disease, but it is crucial that Gladys know what her own risk for the disease is before she gives up a healthy kidney. Will her physicians feel comfortable recommending against the surgery if her long-term prognosis is poor - would such a decision result in the revocation of the prison release, or is the release contingent upon a medical “OK” for the procedure?

Compromise

To what extent will the transplant physicians be required to compromise their own ethical duties to the health of these women to accommodate their desire for freedom?

Hopefully, Barbour’s release decision depends upon Gladys’ willingness to be considered as an organ donor, as opposed to her having to actually go through with it.

While I believe it possible that Gladys wishes to donate her kidney to save her sister’s life, the conditions under which she has made this decision are hardly ideal to voluntariness, which our law normally dictates is a necessary condition precedent to organ donation.

These women have been incarcerated their entire adult lives, and have likely made very few decisions on their own behalf, much less life-and-death ones.

Other doubts haunt this scenario. If indeed the Scott sisters merited a suspension of their sentences because they are excessive, then the governor should have made his decision for that reason, thereby enabling the women to resolve how to proceed in addressing Jamie’s kidney failure in the context of their private lives, without state compulsion and outside the glare of the media.

I hope they have significant and stable support upon their release - in addition to undergoing a significant medical procedure, they may not be well-prepared for successful reentry even in the best of circumstances.

Barbour cites the opportunity to save the state health costs by releasing the sisters to pursue the transplant. If the transplant is both a cost-effective and humane alternative to dialysis (which I believe it is) why wasn’t it allowed during the sisters’ incarceration?

While the state may be expecting to save money for the sisters’ health care, it is presumably Medicare that will be covering the cost of the transplant and the extremely expensive post-surgical anti-rejection drugs that Jamie will require (although Jamie’s eligibility for Medicare will likely be fraught with hurdles).

Thus, a large part of the state’s motivation here seems to be the chance to shift Scott from the state’s Medicaid roll to the federal government’s Medicare program.

A fragmented system

While this might work out in the end for the Scott sisters, it represents yet another perversity of our fragmented health care system.

The Scott sisters must be wonderfully excited about their imminent release, and the possibility of saving Jamie’s life, and I am pleased for them.

I am less excited, however, about Barbour’s decision becoming a precedent for other governors.

This article originally appeared in The Record, New Jersey’s most awarded newspaper.

Health Care Reform & Undocumented Aliens

Hemodialysis Machine, New. Photo by Patrick Ganz

Several commentators have already observed the absence of any discussion of undocumented aliens in the discussion about health care reform.  And yet, the issue is huge, particularly for those ten or so states in which these individuals disproportionately live and work.  The June 2009 issue of American Journal of Kidney Disease includes an article on a survey of nephrologists^[1] who report an increasing number of undocumented aliens with End Stage Renal Disease (ESRD).  Unsurprisingly, access to care for these individuals is inadequate and shrinking, with about one third of physicians reporting undocumented patients to be wholly reliant on emergency dialysis, which carries with it higher cost and morbidity; 67%, however, reported availability of long-term dialysis care.

A significant minority of physicians reported advising their undocumented patients to move to another state or country to access care, even though accessing appropriate renal care is difficult due to scarcity in Mexico, the native country of the majority of undocumented aliens in the United States.^[2] On the other hand, undocumented aliens present much younger (40’s) with ESRD, which causes many nephrologists to argue that provision of kidney transplants would be a much less costly care approach, long-term.  Federal law prohibits use of Medicaid funds for transplants for this population.^[3]

Many hospitals find themselves “stuck” with chronically ill patients who no longer require acute care, but require discharge to nursing homes or rehabilitation facilities because their debilitation is so severe.  These include victims of car accidents and crimes, for example.  These patients originally appear in hospital emergency rooms in acute distress, thereby requiring the hospital to treat and stabilize pursuant to their EMTALA obligations.  Medicaid has in the past made some monies available to reimburse hospitals for this episode of care (although it was never enough, according to the hospitals, and while the most recent authorization law expired in 2008, funds remained for distribution into 2009).  Further, hospitals are required by Medicare Conditions of Participation to prepare and implement an appropriate discharge plan.  This becomes impossible to accomplish if there is no hope of reimbursement for the subsequent care facility.

Assuming there are Medicaid monies to be had for the emergency care of this population, courts have been split over the question of whether the Medicaid emergency services coverage provision covers the long-term and chronic aftermath of an acute situation.  Specifically, the question is whether the reimbursement is limited to the treatment required to stabilize the patient with leukemia, ESRD, or brain injury, or whether it extends to the post-stabilization care required to prevent a future emergency condition.   Greenery Rehabilitation Group v. New York City Human Resources Administration, 150 F.3d 226 (1998), concluded that if the patients’ post-emergency injuries were properly classified as chronic rather than acute, they do not qualify for Medicaid coverage.  Scottsdale Healthcare Inc., v. Arizona Health Care Cost Containment Syst. Admin., 75 P.3d 91 (D.C. Ariz. 2003), rejected the Second Circuit’s focus on stabilization as too narrow, holding instead that the “focus must be on whether the patient’s current medical condition–whether it is the initial injury that led to admission, a condition directly resulting from that injury, or a wholly separate condition–is a non-chronic condition presently manifesting itself by acute symptoms of sufficient severity that the absence of immediate medical treatment could result” in an emergency condition. Id. at 98.  The issue has also been taken up in the last few years by the Connecticut and North Carolina Supreme Courts, in which both plaintiffs’ received emergency room diagnoses of leukemia and sought coverage of their subsequent chemotherapy treatments — these Courts also split on the issue.

These cases are merely a snapshot of a much larger issue.  A health care reform bill that doesn’t address the health care of both legal and illegal aliens will be inadequate, and adversely and disproportionately affect the several states where large numbers of immigrants live, work, and school their children.  The solution must address access to primary and emergency care as well as treatment for chronic conditions.  Those states whose workers compensation systems are inadequate in their coverage of immigrants disabled in the course of their employment might also ameliorate the crisis presented by this population by reform in this area as well.

[2] Id. at 947.

[3] CMS Uniform Policy Manual § 3000.01