Bioethics for Breakfast: Health Reform Unmentionables: Long-Term Care

Bioethics for Breakfast Seminars in Medicine, Law and Society

Anne Montgomery and Sarah Slocum, co-directors of Altarum’s Program to Improve Eldercare, presented at the December 10 Bioethics for Breakfast session, offering perspectives and insight on the topic “Health Reform Unmentionables: Long-Term Care.”

While past Bioethics for Breakfast events were held in person, this year’s series is taking place virtually. The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

A lot of attention has been given recently to the social, political, ethical, and economic challenges associated with long-term care. Nursing homes and long-term care facilities have suffered during the COVID-19 pandemic, but at the same time, the pandemic has given these issues more public visibility. There are several large questions to consider: What are the major challenges facing long-term care today? How should long-term care be financed? What would motivate individuals to purchase long-term care insurance? What are the consequences for Medicaid if we see increased reliance on Medicaid for long-term care funding (keeping in mind continued growth of the elderly population and dementing illness)? What policy options are available for addressing all these challenges? Should those policy options be left to the states? What, if any, is the role of the federal government?

Discussing financing, proposals, and reforms related to long-term care insurance in the U.S., Sarah Slocum reminded attendees of our present-day circumstances by giving a brief overview of Medicare and Medicaid, beginning in the 1965 when they were passed at the federal level. The original design did not include long-term care. By the 1980s, the version of Medicaid could bankrupt entire families if one member of a married couple needed to enter a nursing home. In the 1990s, spousal impoverishment provisions were enacted to protect the assets of individuals. Many states began regulating long-term care insurance, however, policies remained very expensive and were very hard to market. For those who did choose to purchase long term care insurance, their premiums increased as they got older. Bringing us to the present, Slocum discussed Michigan reforms that began to be planned in 2017. One option that the Michigan legislature will have to consider is a 0.5-1% payroll tax contribution for all individuals to fund a long-term care program. Slocum shared the example of a new program in the state of Washington, noting that watching how well the program does could help inform decisions made in Michigan and other states.

Anne Montgomery then offered insight into policy considerations at the federal level, based on her work in Washington, D.C. The cost of long-term care insurance remains a challenge to many people. Additionally, one in five middle-income seniors will become impoverished, typically turning to Medicaid to cover their long-term care costs. More than half of Americans who enter old age today will have a long-term care need for constant attendance, something that is very costly. Montgomery shared the possibility of federal social insurance, though that possibility depends on how legislation is drafted and considered by Congress. Discussing Medigap, Montgomery suggested adding long-term care services and supports to the existing coverage. Montgomery also brought forth the need for a bigger and better trained long-term care workforce, and the need for other infrastructure and home and community-based service improvements. Montgomery then shared predictions on what the Biden administration may be looking to do beginning in 2021, touching on the Affordable Care Act and the Center for Medicare and Medicaid Innovation. Finally, Montgomery discussed the need for culture change and quality improvement within nursing homes, such as moving to a person-centered model.

The discussion portion of the session included questions about how hospice and palliative care interface with long-term care insurance, how family caregivers could be compensated under a new model, and the overall appetite of the American public for the changes discussed by Slocum and Montgomery.

Related Resources

About the Speakers

Anne Montgomery
Anne Montgomery is Co-Director at Altarum’s Program to Improve Eldercare, where she oversees a portfolio of quality improvement and research projects focused on older adults and long-term services and supports. Montgomery has more than two decades of policy experience working on Medicare, Medicaid and related programs. Montgomery served as a Senior Advisor for the U.S. Senate Special Committee on Aging, where she developed policy included in the Affordable Care Act, including policy to upgrade quality in the nursing home sector; expand options for states offering home and community-based services; improve direct care worker training; and improve state Medicaid assessment processes. Montgomery also worked for the House Ways & Means Committee, the Government Accountability Office and the Alliance for Health Policy in Washington, D.C., and was awarded the Atlantic Fellowship in Public Policy to conduct comparative analysis of family caregiver policy in the U.S. and the UK. Montgomery received an MS in Journalism from Columbia University.

Sarah Slocum
Sarah Slocum joined the Altarum Program to Improve Elder Care in the fall of 2016. As Co-Director of Altarum’s Program to Improve Eldercare, Ms. Slocum strives to improve the quality of life and care for frail elders living with disability. Just prior, she served 13 years as Michigan’s State Long Term Care Ombudsman, leading advocacy for Michigan citizens living in long term care facilities. She has led policy change efforts in the state Medicaid program, long term care regulations, the Certificate of Need program, and with the Michigan legislature. Ms. Slocum has testified on nursing home quality before the U.S. Senate Special Committee on Aging. She has worked for over three decades in aging and long term care advocacy at the state and national levels. Ms. Slocum received an MA in Bioethics from the Michigan State University College of Human Medicine.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.

Listen: Why I Left the U.S. for My Surgical Procedure

No Easy Answers in Bioethics logoNo Easy Answers in Bioethics Episode 21

What would you do if you needed surgery, but seeking care would mean $25,000 or more in medical debt? Would you consider traveling to another country to receive the same surgery at a fraction of that cost? Would you put off seeking care entirely, until it became an emergency situation?

These questions related to access to care, health insurance, and medical tourism are explored in this episode, which features Center for Ethics and Humanities in the Life Sciences faculty members Len Fleck and Larissa Fluegel. Dr. Fluegel, a clinician born and raised in the Dominican Republic, shares her personal experience of needing gallbladder surgery, and the reasons why she traveled from Michigan to the Dominican Republic to receive that surgery. It may not be surprising that the main reason was cost. Discussing the healthcare systems in both countries, Drs. Fleck and Fluegel explore the challenges that under- and uninsured individuals in the U.S. face when seeking care.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.

About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Leonard Fleck, PhD

Dr. Stanley Goldfarb is the former Associate Dean of Curriculum at the University of Pennsylvania Perelman School of Medicine. In a recent Wall Street Journal opinion piece, “Take Two Aspirin and Call Me by My Pronouns,” he complained that curricula in medical schools “are increasingly focused on social justice rather than treating illness.” He goes on to say, “A new wave of educational specialists is increasingly influencing medical education. They emphasize ‘social justice’ that is related to health care only tangentially.” Really? Only tangentially?

Readers will recall Dr. Mona Hanna-Attisha, a pediatrician in Flint, Michigan. She had discovered elevated lead levels in many of her pediatric patients. She could have “stayed in her lane,” provided chelation therapy, hoped for the best, and gone home for dinner. If this is what we would have taught her during her medical education, we would have been complicit in suborning a major injustice.

Dr. Hanna-Attisha did the necessary background research, discovered that public officials had switched the source of Flint’s drinking water to save money, which, in turn, resulted in lead being leached into the drinking water. She brought her case to the media and vigorously advocated (successfully) for correcting this health hazard. She did this for the sake of the children in Flint, many not yet born. This was not tangential to her role as a physician; this was integral and essential. This was a matter of social justice. This was part of her medical education in the College of Human Medicine.

Image description: Dr. Mona Hanna-Attisha is seated at a table smiling. Image source: University of Michigan School for Environment and Sustainability/Flickr

The practice of medicine today is suffused with social justice challenges. As we explain to our first-year medical students, the clinic is not an island of “pure caring,” isolated from the injustices that are pervasive in our health care system and governing policies. Those injustices frequently seep into clinical practice through the hands of physicians who, no doubt, see themselves as just and caring practitioners. This may sound like hyperbole, but I ask you to consider the evidence.

For the past forty years the dominant demand in health policy has been for health care cost containment. I will remind the reader that last year in the United States we spent $3.65 trillion on health care, roughly 18% of our GDP, compared to 11% of GDP in most European nations. If we ask who is responsible for spending more than 70% of those dollars, the short answer is that physicians in the clinic are the responsible agents. Physicians decide whether a patient needs surgery, which drugs to prescribe, what diagnostic tests are necessary, how much home care is needed, and so on. Consequently, if a focal point is needed for controlling health care costs, it will be physicians.

Note that cost control can be a matter of justice or injustice. In either case, physicians will have to be mindful of the justice-relevant consequences of their diagnostic or therapeutic choices. In the 1990s a number of managed care plans used “at risk” reimbursement to elicit more cost-conscious physician clinical behavior. In some cases, as much as 30% of a physician’s income could be “at risk” if they ordered too many tests. They could also earn 30% bonuses if they were especially stingy in their use of tests. Patients knew nothing of these arrangements. Income risks and opportunities such as those could readily shape physician behavior in ways that were less than just. Whether physician judgment in these circumstances would be corrupted would depend upon whether in their medical education they had had the opportunity to reflect upon such future challenges (as opposed to thoughtlessly accepting such practices as “this is the way medicine is practiced today.”)

Putting physician income at risk to control costs related to patient care is crude and obvious. More problematic are the subtle and invisible ways in which physicians control costs justly or unjustly. For example, a patient demands an MRI to rule out brain cancer when a physician is medically certain these are tension headaches. But the physician authorizes the MRI because “insurance will pay.”

If thousands of physicians are indifferent to authorizing such unnecessary care, then the costs of health insurance to employers increase. For employers at the economic margins, that cost increase may mean dropping health insurance as a benefit, thereby adding those employees to the ranks of the uninsured. From the perspective of any individual physician, this is a very remote, invisible consequence of their decisions that creates an injustice. Medical students need to know this to practice medicine justly.

Other employers will change insurance coverage to reduce their costs. They will require their employees to accept insurance with $5000 front-end deductibles. Financially less well-off workers will deny themselves that unnecessary MRI (no injustice there), but they will also deny themselves medically necessary diagnostic procedures (sometimes with deadly consequences) by not even walking into a physician’s office. Why, physicians might ask, should they as physicians be responsible for those bad decisions by patients; there was nothing to diagnose in the examining room. But maybe there was something to diagnose in society? This is sounding a bit more like the situation in Flint. Non-physicians made cost control decisions but counted on physicians to see such decisions as “merely tangential” to the practice of medicine, nothing that should concern them.

Precision medicine has generated more than 90 FDA approved genetically-targeted cancer drugs with annual costs of more than $100,000. These drugs are used with patients with metastatic disease. The vast majority of these patients will gain no more than extra months of life from these drugs, not extra years (though clever media campaigns create a very different impression). For most workers, their health plan will require a 20-30% co-pay for these drugs, which is unaffordable for most workers. Financially well-off managers and executives will be able to afford those co-pays, which means that workers who could not afford the co-pays will have contributed through their premiums to subsidizing that other 70-80% for the well-off. Is that fair? Is that just?

Should physicians caring for these patients silently acquiesce to these insurance arrangements as “too tangential” to medical practice, too far removed from the clinic? Should we, as teachers of future physicians, also silently acquiesce so that more curricular time can be allocated to understanding the mechanisms of action of the next 90 FDA approved targeted cancer therapies? WWHAD: What Would Dr. Hanna-Attisha Do?

Leonard Fleck photoLeonard 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.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 24, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Fleck: Medicare For All: This Is Going to HurtGreed Is God: The Divine Right to Avaricious Drug PricingGene Editing: God’s Will or God’s Won’t

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Medicare For All: This Is Going to Hurt

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

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.

Individual holding Medicare For All sign
An individual is photographed holding a sign up above their head that reads “Love it! Improve it! Medicare For All!” Image source: Glyn Lowe PhotoWorks/Flickr Creative Commons

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.

Fleck smallLeonard 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.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 7, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Fall 2018 publications from Center faculty

Continue reading below for a list of recent journal articles from Center faculty, including online first publications. MSU Library or other institutional access may be required to view these articles.

Recently assigned an issue

Stahl D. Patient reflections on the disenchantment of techno-medicine. Theoretical Medicine and Bioethics. December 2018;39(6):499-513. Available online November 1, 2018. View full text via Springer Link.

Cabrera LY, Bittlinger M, Lou H, Müller S, Illes J. Reader comments to media reports on psychiatric neurosurgery: past history casts shadows on the future. Acta Neurochirurgica. December 2018;160(12):2501-2507. Available online October 24, 2018. View full text via Springer Link.

Fleck LM. Healthcare Priority-Setting: Chat-Ting Is Not Enough; Comment on “Swiss-CHAT: Citizens Discuss Priorities for Swiss Health Insurance Coverage”. International Journal of Health Policy and Management. October 2018;7(10):961-963. Available online July 28, 2018. View full text via IJHPM.

Zhuang J, Bresnahan M, Zhu Y, Yan X, Bogdan-Lovis E, Goldbort J, Haider S. The impact of coworker support and stigma on breastfeeding after returning to work. Journal of Applied Communication Research. 2018;46(4):491-508. Available online July 19, 2018. View full text via Taylor & Francis Online.

Online first

Cabrera LY, Brandt M, McKenzie R, Bluhm R. Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments. AJOB Empirical Bioethics. Available online November 6, 2018. View full text via Taylor & Francis Online.

Bluhm R, Cabrera LY. It’s Not Just Counting that Counts: a Reply to Gilbert, Viaña, and Ineichen. Neuroethics. Available online October 27, 2018. View full text via Springer Link.

De Vries RG, Ryan KA, Gordon L, Krenz CD, Tomlinson T, Jewell S, Kim SYH. Biobanks and the Moral Concerns of Donors: A Democratic Deliberation. Qualitative Health Research. Available online August 10, 2018. View full text via SAGE Journals.

Cabrera LY, Goudreau J, Sidiropoulos C. Critical appraisal of the recent US FDA approval for earlier DBS intervention. Neurology. 2018. Available online June 13, 2018. View full text via Neurology.

Zhuang J, Bresnahan MJ, Yan X, Zhu Y, Goldbort J, Bogdan-Lovis E. Keep Doing the Good Work: Impact of Coworker and Community Support on Continuation of Breastfeeding. Health Communication. Available online May 17, 2018. View full text via Taylor & Francis Online.

Web of Interests Surrounding Medicines Makes Patient Access Increasingly Difficult

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Jennifer Carter-Johnson, PhD, JD

A recent New York Times article described the problems that patients are having gaining access to a new class of cholesterol reducers, called PCSK9 inhibitors. This difficulty extends not just to the uninsured but also to patients with insurance. The drug costs are exorbitant, listing as more than $14,000 per year for a drug that may need to be taken indefinitely. Insurance companies are balking at paying so much for the new drug when cheaper cholesterol reducers are available. Patients for whom the old cholesterol reducers do not work are forced to jump through many time-consuming hoops – mountains of paperwork, proof that other drugs have failed, and appeals after initial denials of coverage – before drug coverage approval for the PCSK9 inhibitors.

It is easy to blame the drug companies in this situation. Why must they charge so much?!?! This question has become more common considering recent news stories about drug company price increases designed only to increase profits. But high drug costs are only one obstacle for patients to access drugs. Insurance coverage dictates cost of drugs to patients from nominal co-pays to out-of-pocket self-funding. Attempts to address one issue without addressing the entire web of interests is doomed to failure.

Image description: A close-up photograph of a spider web that is covered in water droplets. The web takes up the entire frame and is in focus, the background is blurred and includes green and purple tones. Image source: nils.rohwer/Flickr Creative Commons

Drug Companies and Federal Regulations

Drugs cost money and time to develop and produce. All drugs must undergo scrutiny from the U.S. Food and Drug Administration, where drug developers must prove both the safety and efficacy of the potential drug before it is sold. The process takes on average 12 years between lead compound identification and final approval, and often costs close to a billion dollars absent streamlined approval processes for certain rare diseases. The billion-dollar cost estimate includes the cost of research for the failure of the many compounds that enter clinical trials but are deemed either unsafe or ineffective for the disease to be treated.

Thus, drug companies charge prices to recoup this huge research investment. Prices also pay for manufacturing and advertising as well as profit margins of close to 20% to fuel further investment. While there are mechanisms in place to incentivize generic drug manufacturers to enter the market and decrease prices through competition, branded drug companies have strategies to delay generic entry that have come under recent legal scrutiny.

Private Insurance and Federal/State Medical Programs

While drug costs are high due to the myriad factors described briefly above, patients are often insulated from some of those costs by insurance companies that cover the cost of drugs. Insurance comes in a variety of forms. Private insurance may be procured on the open market or through employer coverage. In the latter, the employer may cover some or all the costs of the insurance. Senior citizens rely on the Federally-sponsored Medicare program for medical coverage, though private supplements insurance policies are also the norm. Those too young for Medicare and too poor for private insurance (with or without an employer subsidy) are forced to rely on state Medicaid programs.

Unfortunately, not every insurance plan covers every drug. Insurance companies produce a formulary of covered drugs for each plan. The insurance plan negotiates a price, often significantly cheaper than the drug’s list price, that it will pay the drug manufacturer. More expensive drugs may require insurance pre-approval and multiple rounds of paperwork from the prescribing doctor.

Insurance companies have an incentive to reduce the usage of expensive drug alternatives. For private insurance companies, that incentive is profit. In fact, for-profit insurance companies know how to play this game quite well; many have profits in excess of 6 billion dollars. Medicaid and Medicare programs have limited budgets for all medical costs including drugs. While increased Medicaid funding for states offered through the Affordable Care Act was effective in decreasing uninsured rates, government funding is always in flux due to political pressures.

Doctors and Pharmacists

Doctors have great discretion in prescribing drugs. While doctors hold their patients’ health as the highest goal, knowledge of insurance (or its lack) may influence the doctor’s choice of drugs. Denial of a drug may well mean many, many more forms for a doctor who wants to make sure her patient has the best, most expensive drug. Doctors who do this for multiple patients could soon find themselves spending as much time on drug paperwork as medical care. Many doctors have taken to giving samples of drugs – left by drug companies as part of their advertising budgets – to patients who cannot afford the drug but need it.

Pharmacists exist at the epicenter of the patient’s dilemma. Patients often find out that insurance is not covering the drug when the pharmacist explains the situation. More troubling is the fact that drug prices are sometimes cheaper for a patient without insurance. For instance, a patient may have a twenty-dollar co-pay, but the drug may only cost ten dollars. For years, pharmacists have been subject to “gag clauses” in contracts between pharmacies and pharmacy benefit managers that prevent them from disclosing to the patient the cheaper alternative. Recent legislation signed this month has banned this practice.


Caught in this web of diverse and conflicting interests are the very people for whom drugs are created and vetted and prescribed – patients. Drug manufacturers must be able to recoup costs, but if no one can afford the drug how will they make sales? Additionally, drug pricing is a convoluted process that varies between insurance policies, pharmacies, and branded or generic formulations. Insurance coverage is often dictated by employer, age, or resources. Lack of coverage for a specific drug might mean the patient is faced with choosing a different drug or a different job. But asking about insurance formularies during a job interview would be quite difficult even if switching jobs in the midst of a medical crisis were possible. On the other hand, determining drug needs in advance is almost impossible. Finding a doctor with the time to work with a patient on an involved approval process is becoming more difficult given the increasing shortage of doctors in the United States.

Sitting in the center of this web of interests, patients have the most to gain and the most to lose from any overhaul of our drug system. It is impossible to fix all the problems by focusing only on the problems in one area. Unfortunately, patients are also a very small voice in the web that includes pharmaceutical companies, insurance companies, and medical professionals.

Jennifer Carter-Johnson photo

Jennifer Carter-Johnson, PhD, JD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar and the Washington State Bar. She is registered to practice before the U.S. Patent and Trademark Office.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 1, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Carter-Johnson: Humanity in the Age of Genetic ModificationDefining The Spectrum of “Normal”: What is a Disease?Dawn of False Hope: Spread of “Right To Try” Laws across the U.S.Designing Children: Patents and the Market are not Sufficient Regulation

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No More Death Panels; Politically-Assisted Suicide Instead

This post is a part of our Bioethics in the News seriesBioethics-in-the-News-logo

By Leonard Fleck, PhD

Republicans have not coalesced around any comprehensive proposal to replace the Affordable Care Act (though one is now on the table and intensely disputed). This has been named the American Health Care Act. At this writing (March 10) two congressional committees have approved a bill endorsed by Paul Ryan. It is expected to go to the full House this week where it will likely receive a much rockier reception from a number of very conservative Republicans who have derided the bill as “Obamacare Lite.”

For purposes of this commentary I will put aside internal Republican bickering. My goal is to call attention to the most serious ethical deficiencies in the bill as it stands now. I confess that Obamacare Lite does not sound too ethically problematic. Many Democrats would support some reform of the Affordable Care Act. A more accurate moniker (in my judgment) would be “Obamacare Stingy.” That comes closer to capturing the serious injustices inherent in the American Health Care Act (AHCA).

Anyone familiar with my published work knows I am a strong advocate for the view that health care costs need to be constrained, and this needs to be done justly and for the sake of justice in the overall allocation of health care resources. Further, I have argued that those who are medically least well off and capable of significant benefit from access to effective costly health care services have strong just claims to have those needs met. But this is precisely what the AHCA does not do.

Instead, the AHCA eliminates two taxes that Obamacare imposed on the wealthy to pay for the subsidies needed by the poorer uninsured to gain access to insurance. To be precise, the top 1% of income earners in the U.S. (those who earn more than $774,000 in a year) would receive a tax cut of $33,000 while the top 0.1% of earners would get a tax cut of $197,000. In order to reduce the burden on the federal treasury the new subsidies under the AHCA would be given as tax credits and reduced significantly from those provided under Obamacare.* Further, the tax credits would be age-related, not income-related. A 25-year-old would get a tax credit of $2,000 while a 60-year-old would get a tax credit of $4,000. If that 60-year-old earned less than $20,000 under Obamacare, he would have received $9,900 in subsidies for health insurance. The average 60-year-old will have 3.5 times more health care expenses than the 25-year-old. Under the AHCA insurance companies could charge the 60-year-old five times what they charged the 25-year-old, unlike Obamacare which limited that difference to a factor of three. The cost of insurance for that 60-year-old (the silver plan) would be about $18,000 under the AHCA, which would be essentially unaffordable. Instead of the notorious Alaskan “bridge to nowhere,” we would have “subsidies to nowhere.” This is where the most objectionable ethics issues lie: the creation of massive pseudo benefits that provide political cover for members of Congress but no health care coverage for patients with substantial health needs.

Image description: a woman with white hair wearing a red shirt is displaying a sign that reads, “health care for profit is sick!” Image source: Sage Ross/Flickr Creative Commons

We must also mention that Medicaid funding would be reduced to the states, apparently through a per capita funding mechanism. Over a period of years, the share of Medicaid funding from the federal government would be reduced and the financial responsibility for “adjusting” would be left to state legislatures. The same might be true for high-risk pools for the uninsurable. Again, individuals faced with reduced subsidies would be forced to “freely choose” health plans with very high deductibles, high co-pays, and restricted benefits. This is “fig leaf” insurance, sufficient for political modesty, but insufficient for even modest health care coverage.

The common denominator among these items is reduced federal spending and the shifting of responsibility for making painful cost control (rationing) decisions to states, hospitals, physicians, and individuals. Congress thereby spares itself a Palinesque death panel fulmination. The reason this works is that there are numerous mechanisms for doing rationing invisibly, the most common of which is rationing by ability to pay.** The target for these efforts will be primarily those who are medically and financially among the least well off (not to mention politically powerless), such as our marginally employed 60-year-old above.

If individuals “freely choose” to not purchase health insurance (because it is unaffordable), or “freely deny themselves” needed care (because of high deductibles or co-payments), then responsibility for any bad outcomes (premature death) is widely dispersed among “irresponsible” individuals and effectively rendered invisible to prying media eyes. This is the logic embedded in Representative Jason Chaffetz’s (R-Utah) comment that people should “invest in their own health care instead of getting that new iPhone.” One individual responded that their $117,000 broken ankle was worth 234 iPhones.

A 2012 Families USA study concluded that 26,100 individuals between the ages of 25 and 64 died prematurely in 2010 as a consequence of being uninsured. Of course, the death certificates themselves would not have listed “lack of insurance” as the cause of death. These individuals would have died of their (untreated or undertreated) cancer or heart disease or diabetes, all natural causes, certainly unfortunate, but nothing that would capture any media headlines. These are patients who would have “refused” their life-prolonging $100,000 targeted cancer therapies or their $250,000 left ventricular assist device for their late-stage heart failure. That is what makes these outcomes politically invisible. Patients, apologists for invisible rationing will argue, made the choice to refuse these $100,000 cancer drugs “freely,” which is “better” (for whom?) than mandating and subsidizing their purchase of health insurance. Consequently, Congress and the President are shielded from charges of heartless rationing by a thick political “veil of (willful) ignorance.”

The ethical reality, however, is that this is politically-assisted suicide. If federal funding to the 31 states that have expanded Medicaid to 138% of the poverty level is reduced, and if state legislatures in those states are unwilling to raise taxes to support that former expanded funding, and if taxpayers fail to rise up in revolt and demand higher taxes for compassionate reasons, and if rural hospitals are forced to close because of the size of their uninsured patient base, and if anonymous patients die for lack of timely care and ability to pay, then who should be responsible for “assisting” those deaths?

Judge Neil Gorsuch has made it clear that he is profoundly ethically and legally opposed to physician-assisted suicide. He should be questioned closely at his hearing whether he is equally opposed to the politically-assisted suicides now in the process of being legalized by Republican legislation aimed at replacing the Affordable Care Act. Or will he plead that it is unreasonable to demand that he see what is in reality “invisible”?

Finally, President Trump has committed himself to supporting “universal access” to health insurance. In his tweets he should make clear that such access would be restricted to paytients, who alone seem to have the requisite visibility.

* Lest any of us who are securely in the middle class feel ethically superior to the rich beneficiaries of this tax giveaway, we should be reminded that we were the beneficiaries of $270 billion in tax subsidies in 2016, which reflects the value of the taxes we did not pay on our own health insurance provided by our employers.

** Invisible rationing is intrinsically unjust. The most central element of our understanding of just policies and practices is that they are public, visible, transparent, and available for criticism, most especially by those most directly affected. John Rawls, the philosopher, emphasizes this point in his book, A Theory of Justice. I have argued at length for that same point in the health care context in my book, Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press, 2009), chapter 3.

leonard fleck photoLeonard Fleck, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences in the College of Human Medicine and the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, March 28, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Leonard Fleck: Using a medical ethicscope

Leonard FleckRead Dr. Fleck’s recent Faculty Voice feature in MSU Today: “Leonard Fleck: Using a medical ethicscope.” Dr. Fleck discusses the importance of educating students about health care policy, and uses an example of a woman in Texas who could not afford a medical procedure that could have prevented her death. Dr. Fleck’s story elicited a strong response from MSU Today Editor Lisa Mulcrone. Read her response, “Out of nowhere.”

Should Women Pay More for Health Insurance?

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Leonard M. Fleck, Ph.D.

In a recent commentary in Time (Aug. 23, 2013), Hadley Heath argued that women ought to pay more for their health insurance than men. Fairness, she contended, required this. She was criticizing the requirement of the Patient Protection and Affordable Care Act [PPACA] that prohibited unequal insurance premiums for men and women. There seemed to be two primary reasons for her view: (1) Women live longer than men; (2) Women consume more health care than men. I will start by accepting both these statements as factually true. But I find deeply problematic the normative claim that women are not paying their fair share of health care costs.

Behind Ms. Heath’s normative conclusion is a premise for which she offers no argument. If I buy a more luxurious car, a larger home, or finer wines, then I ought to pay more for these goods than individuals who are content with a used Chevy, a 1000 square foot ranch home and Boone’s Farm. If I consume more health care because I have colorectal cancer and late-stage heart failure, then I ought to pay more for my health care than someone with a broken arm from falling off their polo horse. That is, needed health care should be thought of as just another consumer good, not as anything morally special. If someone wishes to use more health care, then they ought to pay more for that health care.

The wording in that last sentence ought to get our attention. Who is it who “wishes” to use more health care for their cancer and heart disease? Do I wish to use more health care in the way that I wish to have a second piece of turtle cheesecake? The very asking of the question makes manifest its absurdity. I need health care for my cancer or heart disease unless I am willing to accept a premature and painful death. This is what motivates us to think of needed and effective health care as being morally special instead of as just another consumer good to be distributed in accord with desire and ability to pay.

There is another unstated principle in Ms. Heath’s essay that is even more morally troubling than my first point. It is that those who use more health care, or are likely to use more health care, ought to pay more for that health care (or be denied it.) At any point in time the vast majority of women in our society are in excellent health, so it seems there is something silly about this whole debate. However, a large fraction of the uninsured and uninsurable in our society have that status because they have (or are likely to have) very costly health problems which insurers will not cover or for which insurers will charge unaffordable premiums. This is not a silly or trivial problem. At the moral core of the PPACA is the rejection of the idea that individuals with greater health needs must pay for their health care in proportion to need. That is the principal Ms. Heath is really attacking. Women are being used by her as a Trojan horse for attacking the moral fortress of the PPACA.

Finally there is the issue that women live longer than men on average. Again, the principle seems to be that if one lives longer, then it is assumed (maybe falsely) that one will use more health care during those extra elderly years. If that is the principle, however, then there is no good reason why women alone should bear those extra insurance costs. Rather, all persons who can be reliably predicted to achieve greater than average life expectancies ought to be saddled with extra insurance costs. This is hardly the sort of message we would want to give to citizens whom we are encouraging to make healthy lifetime choices for a longer life. The predictable outcome of such a message would be that economical men would rationally choose to spend yet more time watching sports on TV and guzzling beer while gulping down burgers and brats. Does that yield the logical conclusion that women should be charged more for health insurance?


Leonard FleckLeonard M. Fleck, Ph.D., is a Professor in the Center for Ethics and Humanities in the Life Sciences at Michigan State University and the author of Just Caring: Health Care Rationing and Democratic Deliberation.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Friday, October 11, 2013. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.

Price Transparency

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Michael R.Wassenaar, Ph.D.

Price transparency in healthcare is getting a lot of attention at the moment. In February 2013, Time magazine published a lengthy article titled, “Bitter Pill: Why Medical Bills Are Killing Us,” (Brill 2013) detailing the extraordinary prices charged to a group of seven patients and the apparent illogic and inconsistency behind their bills. How can a hospital get away with charging $77 for a box of sterile gauze pads? How is it possible that a three-hour workup for chest pain (that turned out to be heartburn) can result in a $21,000 bill?

Soon after, and partly in response to media coverage of “Bitter Pill,” Health and Human Services Secretary Kathleen Sebelius released a data file containing the chargemaster, or “sticker prices” for the 100 most common inpatient diagnostic related groups (DRGs) for every hospital across the country. The Center for Medicare & Medicaid Services data revealed wide price disparities for the same procedure, even among hospitals within the same geographic area. One of many examples that surfaced as reporters began combing the data included one hospital in Miami that charged $127,000 to implant a permanent pacemaker, while another charged $66,000. The disparity itself is remarkable, but especially given that the two hospitals are literally across the street from each other! (Kliff & Keating 2013; Young et al. 2013).

By most accounts, the increased attention to price transparency is a positive step. Certain patients will benefit directly from access to price information. For patients contemplating an elective surgical procedure, for example, reliable price and quality information allows them to comparison shop between providers and choose the one that represents a superior value. The savings can be substantial. In a recent study, Rosenthal and colleagues (2013) contacted 122 hospitals nationwide and, pretending to speak on behalf of a 62-year-old grandmother, sought to obtain the total cost for a hip replacement. Although not all hospitals provided prices, among those that did, the price varied between $11,100 and $125,798. Admittedly, fewer patients will be required to pay full price for procedures as the Affordable Care Act rolls out and the number of uninsured (or “self pay”) patients declines. But insured patients with high deductibles or co-payments could also realize savings.

While certainly beneficial for some individuals, the driving force behind price transparency is the idea that enabling patients to act as consumers—making price-conscious health care decisions—will create market pressures and drive down the costs of health care for everyone. The notion of health care as a genuine marketplace is relatively untested, since price transparency has not existed up to this point. But there are anecdotal stories of success. For instance, the New York Times recently profiled a surgery center in Oklahoma City that posts all-inclusive pricing information on its website, allowing patients to know beforehand what they’d be charged and to shop around. The clinic’s co-founder reports having an effect on geographically distant patients, who are using his prices to leverage better deals in their own local markets (Rosenberg 2013). If the experiment works, the cumulative benefit of price-conscious consumer behavior could be considerable. A white paper by Truven Health Analytics (2012) estimates that if the 108 million patients currently under 65 with employer-sponsored insurance paid the median price on 300 common “shoppable” procedures, it would save the healthcare system $36 billion.

Price transparency seems like a “win-win,” but a few qualifications are in order. First, price information needs to be accompanied by other important data, like quality, safety, and patient satisfaction scores. Price transparency on its own simply creates a race to the bottom. Not knowing what is otherwise equal or unequal, patients will tend simply to choose the lowest price, instead of making a multifactorial, value-based decision (Ginsburg 2007). Second, price-conscious behavior has limits, since not all procedures lend themselves to comparison shopping. A hip replacement is different than an appendectomy or open heart surgery, which, because of urgency or complexity, make comparison shopping impractical.

Somewhat more problematic is the prospect that price transparency might lead some patients to make bad health decisions, in an effort to be frugal. A study by the Rand Corporation (2011) of high-deductible health plans showed that those patients do spend less on health care, but also avoid preventive care. However, this isn’t as much a problem with price transparency in and of itself, as it is with the idea that patients must have “skin in the game,” i.e., face the prospect of losing money, in order to motivate price-conscious behavior. This is the logic behind higher deductibles and co-insurance: if patients need to pay a portion of their medical bills themselves, it will motivate them to make more price-conscious decisions. Yet that decision might also include forgoing treatment that a patient perceives to be less valuable, such as preventive care, follow-up care, or chronic disease management. While understandable, this sort of price-conscious behavior isn’t fully rational and may end up losing the health care system money in the end.

Most problematic is the fact that price transparency, when coupled with consumer cost-sharing, shifts the burdens of cost control (for everyone) to those who are afflicted by illness and unable to afford a better insurance plan. In other words, it provides a benefit to the many by imposing a burden on the few. With an estimated 60% of personal bankruptcies in the US related to catastrophic medical bills, is that really the best, and fairest, way to bring down the cost of health care?

Assuming the goal is to motivate price-conscious behavior, why not reward patients for making value-based decisions, rather than penalize them (or, more precisely, give patients an opportunity to lessen their penalty)? Under the cost-sharing approach, price transparency gives a patient, e.g., with an 80/20 co-insurance policy, an opportunity to pay less out-of-pocket by choosing a lower cost provider. But the patient must still pay for needed medical treatment, which imposes a financial burden on the patient and creates counter-incentives that may lead to treatment avoidance. Under a reward, or benefit-sharing approach, price transparency gives patients an opportunity to gain from choosing the lower-cost/higher value provider identified by their insurance company. For instance, they might receive a $50 gift card or accumulate “points” that can be reimbursed for gifts or put toward a reduction in one’s premiums. This tactic is fully compatible with patients paying nothing for their individual medical treatments. It would motivate cost-conscious behavior and create market pressure, without imposing additional burdens on the sick.

What are your thoughts?


Wassenar-photoMichael R.Wassenaar, Ph.D., is a Clinical Ethicist, and an associate in the Center for Ethics and Humanities in the Life Sciences at Michigan State University. He serves as a Clinical Instructor for the MSU College of Human Medicine in Grand Rapids.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Friday, September 13, 2013. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.