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.

Just Caring: Health Reform, Cost Control, and the Fate of Children with Life-Altering Illnesses

Leonard Fleck photoCenter 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?

Trump’s Attempt to Reignite the Coal Industry Is Another Health Policy Blunder

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

By Sean A. Valles, PhD

The recently abandoned effort to pass the American Health Care Act (AHCA) was a massive blunder for the Trump administration, failing in its effort to “repeal and replace” Obama’s signature Affordable Care Act, despite Republican control over the House, Senate, and the White House. Less attention has been given to the Trump administration’s second major health policy reform. On March 28, Trump signed an executive order initiating a reversal of Obama-era clean energy plans and seeking “an end to the war on coal.” It was presented as an economic policy reform and an energy policy reform, but it is also a health policy reform since it will have drastic effects on U.S. health.

A short blog entry does not allow me to do justice to the incredible range of ways that coal power plants harm our health. For those interested, Epstein et al. (2011) survey the issue: Coal is one of the leading sources of mercury emissions in the U.S., with horrific effects such as neurological damage in developing fetuses. Meanwhile, much like breathing cigarette smoke, the mix of particles emitted from coal power plants causes increased rates of heart disease, asthma, bronchitis and a host of other diseases.

Image description: a photo of the Detroit Edison Monroe Power Plant. Image source: Wikipedia

Obama’s Clean Power Plan, already delayed by legal challenges, was designed to hasten the process of replacing U.S. coal power with other energy sources (natural gas, wind, etc.). That replacement process had already been underway because of old-fashioned capitalist market forces. Natural gas recently surpassed coal in U.S. power plants because natural gas is getting cheaper, and renewable sources like wind power are also cutting into the coal market. Meanwhile, manual laborers across the country are finding themselves displaced by new technologies, so even a stable coal industry would offer a diminishing number of coal mining jobs.

The Clean Power Plan was projected, by 2030, to save 1,500-3,600 people from dying prematurely, prevent “90,000 asthma attacks in children,” and prevent “300,000 missed school and work days” (among other benefits). Coal is already struggling to economically compete with other fuel sources, but is even more expensive than it looks if one factors in the harmful side effects it brings into our world: “Accounting for the damages conservatively doubles to triples the price of electricity from coal per [kilowatt hour] generated.”

It is telling that the economists who have defended Trump’s executive order avoid addressing the health data above. Stephen Moore and Nicolas Loris both insist that coal power has gotten much cleaner. Neither of them acknowledges how much harm coal still does, nor how much death and illness the Clean Power Plan would have averted. Loris tries to change the subject, claiming that the Clean Power Plan was really about carbon emissions and climate change, not “pollutants known to harm human health and the environment”. But, climate change causes health harms too, such as the (worsening) heat waves that aggravate cardiovascular and respiratory diseases (see my previous post for Bioethics in the News).

We do not need to choose between caring about health vs. caring about coal industry employees whose jobs are at risk; we should do both. The U.S. safety net leaves much to be desired, but it at least offers: job retraining programs, coordinated by the Department of Labor; access to temporary housing for those who lose their homes, coordinated by the Department of Housing and Urban Development; food assistance for the families that will go hungry, provided by the Department of Agriculture. But… Trump plans to drastically cut the budgets of all of those agencies. And, as if to remove all doubt that his declarations of concern for coal workers are hollow, he specifically wants to eliminate the two federal agencies tasked with improving the economy in struggling coal-producing regions: the Appalachian Regional Commission and the U.S. Economic Development Administration.

We are at a tipping point in U.S. health. The most recent CDC data show that our national life expectancy is actually decreasing, while other countries’ expectancies are rising. Meanwhile, new data on the strengths and limitations of healthcare in the U.S. show us that the benefits of health insurance coverage are ethically essential, but frustratingly limited in their power. Insurance coverage protects people from getting unfairly trapped in medical debt after an unexpected illness, but just having access to doctors and medicines doesn’t automatically make people healthier.

Our health is the cumulative effect of our everyday lives: the food we eat, the air we breathe and so on. It is unethically deceptive and cruel for the Trump administration to advertise dubious economic benefits of reviving the coal industry while there is an abundance of evidence that doing so will cause unethical harms to the millions who will be increasingly left to breathe more soot and eat more mercury. As many of my neighbors in the Great Lakes region already know, mercury deposits from coal have left many of our local fish too contaminated to eat more than occasionally. Adding insult to injury, Trump wants to eliminate the Great Lakes Restoration Initiative that is now working to decontaminate the lakes (a rare program with bipartisan political support at the local and national levels).

Trump earned plenty of criticism for bungling his first major legislative effort, the AHCA healthcare reform bill. The bill infamously tried to slash Medicaid spending by $839 billion over the next decade, the safety net program which—among many other benefits—“covers the costs of nearly half of all births in the United States.” (Note: some rumors are true; yes, the U.S. infant mortality rate is more than double the rate in Sweden and, yes, Cuba is also beating us by a healthy margin). Even his own party refused to rally behind the bill. Trump’s second health policy is his effort to reignite the coal industry with an executive order. But, the U.S. remains a representative democracy and your local legislators have the power to step in and, well, legislate. By all means, tell them what you think of Trump’s second health reform policy.

Sean Valles photoSean A. Valles, PhD, is an Associate Professor in the Lyman Briggs College and Department of Philosophy at Michigan State University. He is a philosopher specializing in ethical and evidentiary issues in contemporary population health sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 11, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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More from Dr. Valles: Climate Change and Medical RiskPolitics and the Other Lead Poisoning: The Public Health Ethics of Gun Violence

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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.

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

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Two Brownbags in November: learn about UK health policy, decision-making in pediatric oncology

bbag-icon-decNHS reforms: What is the Reality of Clinician-Led Purchasing of Health Services?

Event Flyer

In 1948 the National Health Service was established as a tax funded health service available to all, free at the point of access regardless of the ability to pay. The reality in the second decade of the 21st century is that with the ageing population and the concomitant increasing burden of disease and social care needs, together with the development of advanced technological treatment modalities, the cost burden is increasing rapidly. In 2012 the UK government introduced reforms which were based on the premise that family physicians, because they were closer to their patient, would know what their patient health care needs were and would therefore be able to commission health care more efficiently. This would all take place within an economic environment where downward pressure on costs was the norm. Dr. Meakin will describe the reforms and examine the reality of these reforms from the perspective of a practicing family physician in the UK.

nov-4-bbagJoin us for Richard Meakin’s lecture on Tuesday, November 4, 2014 from noon till 1 pm in person or online.

Richard Meakin, MD, is Clinical Senior Lecturer in the Department of Primary Care & Population Health at University College London (UCL). He is also a partner in a rural family practice north of London. After graduating from St. Mary’s Hospital Medical School, University of London he went on to train as a Family Physician. He gained a MSc in Family Medicine and a Doctorate. He has a long-standing interest in Medical Humanities and Bioethics and served as founding President of the UK Association for Medical Humanities (2002-2005) and was a member of council until 2012. He is a fellow of the Higher Education Academy and won the Cancer Research Campaign Medical Education Prize in 1998. Currently, when not seeing patients, he is predominantly involved in undergraduate and postgraduate education in family medicine at UCL.

bbag-icon-decDecision-making in Pediatric Oncology: Who Really Decides?

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Edit 10/30/2014: This lecture has been canceled.

Informed consent is a pillar of patient autonomy in medicine. In the pediatric world, the informed consent process often involves not only parental consent for treatment but a minor’s assent as well. However, a true informed consent process allows a family or patient to refuse a proposed course of treatment—but is this really true in pediatrics? Is a family allowed to forgo a potentially lifesaving therapy for their child if the chance of survival with the treatment is excellent? Should the prognosis matter? Should the age of the child matter? This talk will discuss challenges of decision making in children with cancer including a discussion on the ability of a family or minor to refuse potentially life-saving treatments.


Join us for Bradd Hemker’s lecture on Wednesday, November 12, 2014 from noon till 1 pm in person or online.

Bradd Hemker, MD, is an assistant professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University. He practices Pediatric Hematology/Oncology with a special interest in Palliative Medicine and Bioethics.

In person: These lectures will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? View these webinars and others as archived recordings.

Teach-In for Health Care Reform

Judy Andre, Ann Mongoven and Leonard Fleck, along with representatives from government, private industry and insurance made up a panel to discuss Health Care Reform for students and other MSU community members on September 9, 2009 in Bessey Hall on MSU’s East Lansing campus.