Center Acting Director and Professor Dr. Leonard Fleck is the author of an article published in the April 2020 issue of the Journal of Medical Ethics. “Just caring: screening needs limits” is in response to “Arrogance of ‘but all you need is a good index finger’: A narrative ethics exploration of lack of universal funding of PSA screening in Canada” by Dr. Jeff Nisker.
Abstract: This personal narrative tugs at the heart strings. However, personal narratives are not sufficient to justify public funding for any screening policy. We have to take seriously the ‘just caring’ problem. We have only limited resources to meet virtually unlimited health care needs. No doubt, screening tests often save lives. The author wants public funding for prostate-specific antigen screening for prostate cancer. However, why only prostate cancer? Numerous cancers at various stages can be screened for. Are all of them equally deserving of public funding? What about screening for a very long list of other life-threatening medical disorders? There is nothing ethically special about cancer. Where does the money come from to pay for all these screening tests? Do we reduce expensive life-prolonging care for patients in late-stage diseases? Ultimately, a balance must be struck between saving statistical lives through screening and saving identifiable lives in the intensive care unit. Achieving a just balance requires rational democratic deliberation as justification for these choices, not personal narratives.
The full text is available online via BMJ Journals (MSU Library or other institutional access may be required to view this article).
Let me start with a clear unequivocal commitment in response to the January Washington Post editorial regarding Medicare for All. From the perspective of what a just and caring society ought to be, “Medicare for All” should be embraced, especially when compared to the costly, fragmented, unjust, inefficient health care financing system we currently have in the United States. For openers, if we abolished private health insurance, we would immediately achieve administrative savings of about $300 billion. We would have the same administrative efficiency as Canada. We would also have a more egalitarian approach for financing and accessing needed health care. What we would NOT have is effective health care cost control. Developing that ability would be ethically, politically, and economically painful.
If we literally mean Medicare for all, recall that substantial co-payments are part of Medicare, which is why a majority of Medicare recipients purchase a private supplementary plan to cover that financial risk. That necessary additive supplement represents a significant compromise of the egalitarian ideal that Medicare is supposed to represent. That represents financial and ethical pain.
The most painful parts of Medicare for All would be three things: (1) the transition itself from employer-funded health care; (2) the scope of the benefit package; and (3) effective cost control. Currently, the federal government covers about $1.5 trillion in health care costs (mostly Medicare, Medicaid and the Veterans Affairs system) out of total health spending in the U.S. in 2017 of $3.5 trillion. Virtually all of that spending would become part of the federal budget. To fund that, the federal government would have to recapture through taxes all that employers (and employees) currently contribute to the cost of their health plan. This would be neither easy nor equitable because of the huge variation from one employer to another, both in scope of coverage and allocation of costs.
Second, what should be the scope of the benefit package? Should it be whatever Medicare covers now, which is reasonably comprehensive? However, many employers offer more comprehensive benefit packages. That would mean employees had to accept a diminished benefit package. Alternatively, the federal government could upgrade Medicare to that optimal level. That would add substantially to that $3.5 trillion in current health spending, and the taxes needed to finance that upgrade. This is political and economic pain. We could permit private insurance upgrades, as in the UK, or forbid such upgrades, as in Canada. Either way, political and ethical pain is the result.
Third, the most painful problem would be controlling health care costs, as the former Princeton economist Uwe Reinhardt has noted with his notion of Great Equations, Cost Control = Income Control or Care Control. Every dollar in health care costs represents someone’s income, and that particular someone does not want to sacrifice their own income for a vague greater good, or someone else’s care. This is the problem of health care rationing.
Political conservatives have denounced health care rationing and contended that “human life is priceless,” (to the benefit of pharmaceutical companies). Liberals have argued that we should not be “throwing granny off a cliff” (when Paul Ryan pushed for privatizing Medicare). In either case, rationing is in fact pervasive in the U.S. health care system. We mostly ration by ability to pay, sometimes in the form of employer-restricted very thin health care coverage or coverage with very high deductibles. We collectively avert our eyes from this private pain.
As I have written extensively, this is essentially invisible health care rationing (Fleck, 71-99). It is widely dispersed among hundreds of thousands of employers. An employer might refuse to cover an extraordinarily expensive (but effective) life-prolonging drug for an employee who dies prematurely because of that denial. The obituary will not list rationing as the cause of death, and the Washington Post will not cover this unjust death.
If Medicare covers everyone, however, then decisions by Medicare not to fund these extraordinarily expensive targeted cancer therapies for patients with metastatic cancer become front-page headlines in the Washington Post and the lead story on Fox News. Pharmaceutical companies become the frontline troops in attacking the bureaucrats for having hearts of stone and consciences of jelly: “Human life is priceless (and pharmaceutical profits too).” In fairness, hospitals, physicians, home health agencies, long-term care facilities and so on will all resist health care cost control. They are all doing good work. Why, they will ask rhetorically, would a just and caring society seek to constrain such good work?
Healthy taxpayers want health care costs controlled; taxpayers with metastatic cancer want access to anything and everything medicine offers that might prolong their life, no matter the cost (because they paid all those taxes) (Eddy). This is irrational (but real). One refrain (seen as politically safe) is to get rid of waste and inefficiency in the health care system. Nothing obviously irrational or unethical about that, except that one person’s waste and inefficiency is another person’s life-prolonging care.
Consider this challenge as part of Medicare for All: CAR T-cell immunotherapy for several refractory leukemias has front-end costs of $475,000, plus several hundred thousand dollars more if a patient experiences a severe form of cytokine release syndrome as a side effect. Roughly, 30% of those patients will fail to survive a year. If we have biomarkers and other medical criteria that can predict with 95% confidence which patients will be in that 30%, would a future possible version of yourself in that 30% group accept a rationing protocol that would deny yourself CAR T-cell therapy because for you it was “wasteful and inefficient”? In theory, 60,000 Americans each year would be candidates for this therapy; potential savings from that protocol would be $15 billion. Alternatively, call a friend with end-stage heart disease and ask if he would be willing to give up his $500,000 artificial heart so you can get CAR T-cell therapy.
If we aspire to be a just and caring society with limited resources (money) to meet unlimited health care needs, then we must have these painful public conversations. Moreover, these conversations must be rational and respectful. Current invisible rationing practices are nothing more than opioids for our consciences.
Leonard M. Fleck, PhD, is Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences and Professor in the Department of Philosophy at Michigan State University.
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Center Professor Dr. Leonard Fleck has a new article published in the April 2018 issue of Cambridge Quarterly of Healthcare Ethics. The article, “Controlling Healthcare Costs: Just Cost Effectiveness or “Just” Cost Effectiveness?,” appears in a special section on justice, healthcare, and wellness.
Abstract: Meeting healthcare needs is a matter of social justice. Healthcare needs are virtually limitless; however, resources, such as money, for meeting those needs, are limited. How then should we (just and caring citizens and policymakers in such a society) decide which needs must be met as a matter of justice with those limited resources? One reasonable response would be that we should use cost effectiveness as our primary criterion for making those choices. This article argues instead that cost-effectiveness considerations must be constrained by considerations of healthcare justice. The goal of this article will be to provide a preliminary account of how we might distinguish just from unjust or insufficiently just applications of cost-effectiveness analysis to some healthcare rationing problems; specifically, problems related to extraordinarily expensive targeted cancer therapies. Unconstrained compassionate appeals for resources for the medically least well-off cancer patients will be neither just nor cost effective.
The full text is available online through Cambridge University Press (MSU Library or other institutional access may be required to view this article).
Center Professor Dr. Leonard Fleck recently gave a keynote address at the 2017 Pediatric Bioethics Day at Norton Children’s Hospital in Louisville, KY, held on September 20.
Titled “Just Caring: Health Reform, Cost Control, and the Fate of Children with Life-Altering Illnesses,” Dr. Fleck’s talk started out with a short string of cases related to children with life-altering illnesses. He brought up the Jimmy Kimmel case (recently born infant with hypoplastic left heart syndrome), in part because a very explicit connection was made with the House-approved repeal of the Affordable Care Act (ACA). He also brought up childhood cancer cases, some capable of being effectively addressed by contemporary medicine, others not capable of being effectively addressed but raising ethics issues related to cost/health care justice as well as unnecessary harms related to aggressive treatment.
Dr. Fleck painted a statistical picture of the very large problem of escalating health care costs in the U.S., primarily as background for better understanding the “big picture” behind the problem of health care justice. He introduced seven different conceptions of justice, which are all part of our everyday understanding of how resources ought to be distributed fairly. The basic question we are seeking to answer would be this: What are the just claims to limited health care resources for children who have a broad range of expensive health care needs, the outcomes of which might vary considerably and have significant uncertainty attached to them?
Dr. Fleck reviewed a few elements of the ACA that were directly relevant to the fate of children with life-altering illnesses. For example, what effect has Medicaid expansion had on these children in the different states? Or what effect has the pre-existing condition clause of the ACA had on children with life-altering illnesses (forbidding insurance companies from discriminating against such children, either as children or future possible adults)?
Dr. Fleck then critically examined the American Health Care Act as passed in the House, and then the Senate counterpart of that bill. He addressed what he saw as the key injustices in those bills, the biggest being that it would achieve cost control largely through practices that were forms of invisible rationing (something he has written about extensively). Likewise, Dr. Fleck assessed the implications of the contraction of Medicaid for children with life-altering illnesses. This included the corruption of protections for pre-existing conditions and the inadequacy of state-based “high risk” pools allegedly as adequate protection of the health care rights and needs of such children.
Finally, Dr. Fleck discussed precision medicine in relation to cancer in children, keeping in mind the very high cost of these targeted therapies and the limited (marginal) success that has largely been true, especially in relation to solid cancers. There has been a lot of half-truths and hyperbole in this regard. There are in fact many extremely costly drugs for children with a range of life-threatening problems: some very effective, some not. Dr. Fleck used examples such as hemophilia (especially Factor VIII resistant), Gaucher, cystic fibrosis, Pompe, Fabry, Duchenne, etc. In this connection Dr. Fleck wanted to tease out the ethical challenges: If we cannot afford or justify doing EVERYTHING medically possible for all these children, then how should priorities be justifiably set? What should be the role of rational democratic deliberation in addressing these justice-relevant issues? Is bedside rationing ever morally justifiable in these circumstances? If so, how would we distinguish just bedside rationing from unjust bedside rationing decisions?
An ethics case by Center Professor Dr. Leonard Fleck and co-author Marion Danis, MD, was published in the February 2017 issue of the AMA Journal of Ethics. Their commentary is titled “How Should Therapeutic Decisions about Expensive Drugs Be Made in Imperfect Environments?”
Clinicians must inevitably make therapeutic decisions under nonideal conditions. They practice in circumstances that involve incomplete evidence. They deliver care in health care systems that are complex and poorly coordinated. Each of the patients that they take care of is unique while research offers evidence regarding relatively homogeneous populations of patients. Under these circumstances, many parties—medical scientists, reviewing agencies, insurers, and accountable care organizations—can and should contribute to optimizing the development, approval, funding, and prescription of therapies—particularly expensive and marginally beneficial therapies. In aggregate, they should aspire to achieve a pattern of fair, cost-effective therapeutic decisions to ensure a sustainable health care system. Here we offer some suggestions regarding decisions that physicians might pursue to facilitate fair and cost-effective patient care.
An article from Center Professor Dr. Leonard Fleck was published in the July 2016 issue of Cambridge Quarterly of Healthcare Ethics, “a quarterly journal devoted to engaging a world community of bioethicists.” Dr. Fleck’s article, “Choosing Wisely: Is Parsimonious Care Just Rationing?” accesses claims related to the practices of rationing and parsimonious care.
Abstract: The American College of Physicians in its ethics manual endorsed the idea that physicians ought to improve their ability to provide care to their patients more parsimoniously. This elicited a critical backlash; critics essentially claimed that what was being endorsed was a renamed form of rationing. In a recent article, Tilburt and Cassel argued that parsimonious care and rationing are ethically distinct practices. In this essay I critically assess that claim. I argue that in practice there is considerable overlap between what they term parsimonious care and what they define as rationing. The same is true of the Choosing Wisely campaign endorsed by the American Board of Internal Medicine. In both cases, if the goal is to control healthcare costs by reducing the use of marginally beneficial care that is not cost effective, then a public conversation about the justness of specific choices is essential.
The Western Michigan University Ethics Center hosted the conference “Bioethics: Preparing for the Unknown” on March 17-18, 2016 in Kalamazoo, MI. The conference included presentations from Center faculty members Laura Cabrera, Leonard Fleck, and Devan Stahl.
Drs. Cabrera and Stahl participated in the panel “The Future of Psychiatric Deep Brain Stimulation: Dealing with the Unknown” along with WMU Assistant Professor Dr. Tyler Gibb. Dr. Cabrera states: “The use of deep brain stimulation (DBS) for psychiatric disorders raises ethical debate for a number of reasons: the same intervention can be of great benefit for some but not for others, patients are desperate to find some relieve from their disease thus they might underestimate the risks and unknowns around the intervention; and it is not clear how can we ensure that conflicts of interest do not blur the ethical judgment of clinicians involved in these procedures. Thus we must remain aware that the new frontiers of psychosurgery are not free from similar abuses as those from the past, and that there are many unknowns surrounding psychiatric DBS and its current practice.”
“The panel was well received, and we enjoyed a lively conversation about our thesis,” said Dr. Stahl. “Overall, the conference presented a variety of topics about the future of medicine and health care and the speakers presented dynamic ideas in an intimate setting.”
Dr. Fleck presented the paper “Just Caring: Parsimonious Care in Certain Uncertain Circumstances” as part of the Medical Decision Making session. Dr. Fleck discussed how uncertainty should be addressed in the economic and political context of having to do health care rationing, and in the ethical context of having to do that rationing justly. He offered several common examples, such as $100,000 precision cancer drugs, $40,000 implantable cardiac defibrillators, PCSK9s for lowering “bad” cholesterol, access to ICU beds—all of which represent uncertain benefit at very great cost. Dr. Fleck states: “Access to health care resources is about access to a limited common good. This is what makes such access a matter of justice rather than a matter of informed consent wherein a patient weighs from their point of view the risks and benefits (and related uncertainty) they are willing to trade off. Matters of justice require social decisions. Patients do not have a presumptive just claim to a $100,000 cancer drug if there is only a small chance that drug would yield an extra six months of life. What level of certainty would generate such a just claim? There is no objectively correct answer to that question. It needs to be resolved, I will argue, through a process of rational democratic deliberation, the results of which will be just and legitimate for all in the relevant clinical circumstances.”
The conference was part of the 30th anniversary of the WMU Center for the Study of Ethics in Society. Attendees and speakers included medical doctors from a variety of specialties, clinical ethics consultants, lawyers, and philosophers from Michigan and throughout the United States and other countries.
A new volume of contributions to the health care rationing debate has been published recently by Maklu Publishers:
Andre den Exter, Martin Buijsen, eds. Rationing Health Care: Hard Choices and Unavoidable Trade-offs.
Leonard Fleck, Professor in the Center for Ethics and Humanities in the Life Sciences has a chapter in the volume entitled, “Just Caring: In Defense of the Role of Democratic Deliberation in Health Care Rationing and Priority-setting.”
Description from the publisher:
One of the most controversial issues in many health care systems is health care rationing. In essence, rationing refers to the denial of – or delay in – access to scarce goods and services in health care, despite the existence of medical need. Scarcity of financial and medical resources confronts society with painful questions.
Who should decide which medicine or new treatment will be covered by social security and on which criteria such decisions must be based?
Can age, for example, be justified as a selection criterion?
Should decision-making be left to health care policymakers, hospital administrators, or rather, to treating physicians (‘bedside rationing’)?
Is there a role for individual patients?
These are difficult questions that suggest the need for transparent and democratic decision-making. In reality, however, the rationing debate occurs in a sub rosa world, based on imperfect information, distorted interpretations of effectiveness, and hidden cost concerns.