MEDICAL BANKRUPTCY, PERSONAL LUCK AND A NATIONAL SIN

By Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics
Professor of Pastoral Theology—Ethics & Ministry Praxis, Central Baptist Theological Seminary
Clinical Professor, School of Medicine, University of Kansas Medical Center
Director, Hospital Ethics Consultation Service, The University of Kansas Health System

I was raised on a farm up in Minnesota by Fundamentalist Depression-era parents. Among the many rules taught by words and deeds was that you don’t buy what you can’t afford. And never accrue debt. Save enough to buy a car when it’s needed, and then only buy the car that costs the amount you have saved.

That policy worked well for my nuclear family because of white privilege and a whole lot of luck. Others in our family had not always been so lucky, however. My grandparents, on both sides, had bad luck during the 1930s. They had accrued debt that they couldn’t pay when times got hard. Family farms were lost. Everything gone to debt collectors, some of whom were luckier neighbors. So “Never buy what you can’t afford” became our mantra. Not cars or even farms. Never acrrue debt. 

What works for some and in regard to cars or farms doesn’t work as well when what one cannot afford is healthcare. I can live with a cheap set of wheels, or maybe none at all. But my Depression-era father could not live without expensive cancer and cardiology care when he needed it. And there were no cheaper options. In healthcare emergencies, there is no Ford instead of a Lexus. It’s all Lexus. Or Lamborghini. Thank God my Dad had Medicare. Thank God I have employer provided insurance. 

But not everyone is so lucky. That is the truth we all know and of which we’re reminded by a recent (September 1, 2020) West Health and Gallup report on bankruptcy due to medical costs. What researchers learned is summarized in the title: “50% in U.S. Fear Bankruptcy Due to Major Heath Event.” https://news.gallup.com/poll/317948/fear-bankruptcy-due-major-health-event.aspx  

While half of all adults reported that they are either “concerned” or “extremely concerned” that medical bills will bankrupt them, 64% of non-white adults are in that category, an increase from 52% reported in 2019.

 

There are no real surprises here. Why wouldn’t at least half of U.S. adults be concerned or extremely concerned about the specter of financial disaster if they get sick? On an inventory list of healthcare products and procedures for sale, there is virtually nothing the average person could afford to buy out of pocket. Yet when healthcare is really needed, we either buy or die. Or perhaps we don’t die but suffer instead, including the financial stress of accrued debt. For lack of good alternatives, many have bought what they couldn’t afford.

Of what am I reminded when reading this Gallup report? That Depression-era wisdom applicable to car-buying doesn’t work when it comes to healthcare—or only if one is very lucky. Surely in this nation we can and should depend on something other than luck. Shouldn’t we?

Actually, my people never used the word “luck”. We talked in terms of being “blessed”. We were blessed even if others were not when medical and then financial disasters struck. 

Really? I have come through my own faith journey to see things differently. Being blessed or not implies the intervention of a higher being, the actions of God. While remaining devout in my faith tradition, what I no longer believe is that God is the agent of inequity. When it comes to healthcare disparities and consequent financial disasters, I have stopped blaming God, even by implication. This mess is our fault. As a people, we have failed each other. It is a failing that many who believe as I do recognize as sin, both personally and socially. And individuals like my father and I who have thus far escaped the consequences of our national sin are indeed lucky while others are not. 

But even for those most fortunate and privileged, luck has a way of running out. If only as a matter of self-interest when it comes to healthcare costs, or possibly out of compassion as well, we all ought to be “concerned” or “extremely concerned.” Shouldn’t we?

[Portions of this essay were previously published Sept 14, 2020 in an article at GoodFaithMedia.org by Zach Dawes. https://goodfaithmedia.org/reaction-and-response-medical-bankruptcy-concerns-half-of-us/.]

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.


The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:


1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.


That is the crux of the protest. People with disabilities and older adults do not want to return to the days of being sent to nursing homes as the only way to receive long-term care. The right to live in the community is worth a fight, and even arrest. Under federal law, when a person needs long-term care paid for by Medicaid, federal law guarantees access to a nursing home. Both the House and Senate ACA repeal legislation would reform Medicaid by converting it to a block grant program. States would ultimately manage the entire cost of Medicaid and would come under increasing financial pressure to eliminate optional services. Community services are optional. As are some of the categories of people who receive Medicaid for nursing home care. The end-result of eliminating services and/or categories of people would drastically reshape provision of long-term care.

Voluntary Program Not Viable

We need a public debate about long-term care reform. The ACA was many things but long-term care reform is not among them. Not really. Not as the law has been implemented. This I know. I was squarely in the middle of the sole provision of the ACA that addressed long-term care. That part of the law – Title VIII known as the Community Living Assistance Services and Supports Act (CLASS) – didn’t work. It wasn’t implemented and was eventually repealed.


CLASS created a limited-benefit long-term care insurance program. Advocates for older adults and people with disabilities fought very hard to have CLASS included in the ACA. They had a large and active coalition comprised of individuals and organizations. The principle that unified the spectrum of aging and disability advocates was the goal of providing long-term care in community.


The program, as designed, would have allowed individuals to purchase modest long-term care insurance coverage, administered by the federal government. The benefits would not have been sufficient to cover all long-term care costs, but it would have provided modest financial assistance to help people remain in community as they age and/or live with disability. As designed, it had an insurance benefit equivalent to about one-third of private long-term care insurance.


It didn’t work because it was voluntary. The people for whom the program was designed would have been interested in enrolling. People who currently need long-term care or think they will need it are more likely to purchase limited-benefit coverage. Even with the five-year waiting period required by law, the program would have suffered severe adverse selection. Actuarially the program was not viable.

Worst Day of My Career

Part of the controversy of the ACA is the matter of mandating participation. Only if everyone participates will the risk be spread sufficiently to support affordable premiums. For the private market the ACA mandated enrollment. For CLASS it was voluntary. In this fundamental way, the federal law took opposite approaches to health insurance coverage and long-term care coverage. Because the CLASS program could not be solvent, the Obama administration notified Congress it would not implement that portion of the ACA. In response, the House Energy & Commerce Committee held a public hearing. A federal official had to appear before the committee to explain why the program wouldn’t work and why the administration was not moving forward. That official was me. I spent 18 months serving as the administrator of the CLASS program.


The most difficult thing I have had to do in my career is recommend we not implement the long-term care program that would have helped tens of thousands of people who need long-term assistance and support. My anguish in breaking this news to the stakeholders paled in comparison to their dashed hopes of federal support for this much-needed and hard-fought program. In the wake of our decision to halt implementation, Congress repealed the law.

Time to Start Over

It is time to start over. For stakeholders who focus on long-term care, myself included, the ACA was insufficient. It did not tackle the thorny issues that underlie how we pay for and deliver support to people who need assistance with basic functions such as eating, bathing, dressing, toileting, transferring and maintaining continence. The so-called activities of daily living. These are the elements of long-term care. Most of us will face one or more of these challenges in the future. When we need that type of help, each of us will face the cost. This type of assistance is not covered by Medicare. This type of assistance can be provided either at home or in a congregate setting. This type of assistance is exorbitant. For these multiple reasons, Medicaid is the single largest payer for long-term care. And Medicaid block grants are a threat.


The entitlement programs in this country are a tremendous drain on federal and state budgets. Financial and political pressures will continue to thrust us into the maelstrom of reform. As we tackle changes in the Medicaid program, it is essential we begin by looking at the people it serves. The highest costs in the program are in long-term care. The people driving those costs are older people and people with disabilities. The very people being arrested this past month. I know firsthand these vocal advocates welcome the opportunity to talk about reform. But the conversation they seek is not primarily about Medicaid expansion. They are demanding we confront long-term care.

Necessary Decoupling

They are right. In the national campaign to either repair or replace the ACA, it is fundamentally unfair to make sweeping changes to Medicaid long-term care policy without public debate. Let’s give long-term care the forum it deserves. Changing long-term care financing will require laser-like focus on that topic alone. It cannot be adequately reformed by polarized politics reaching for other parts of the law. Long-term care reform is needed. By itself. Alone. Stripped of the distraction of the rest of the law.


Until we decouple long-term care financing from ACA reform we will be under constant threat. Not from the activists willing to lay their bodies on the line. But from the threat of losing the program we may need as our bodies themselves fail. The people who understand this most are those people – my friends – in wheelchairs you are watching on the news.



Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016.

Secretary Kathleen Sebelius Presents Big Ideas in End-of-Life Care

By Kathy Greenlee, JD

What are the “big ideas” in end of life care? The Aspen Institute Health Strategy Group (AHSG) is helping to answer this question.

In 2016, AHSG selected end-of-life care as the subject of their year-long research. The effort was co-chaired by former Health and Human Services Secretaries Kathleen Sebelius and Tommy G. Thompson. Aspen worked with leaders in the field, sought public input and documented their findings in a recently released report titled, “Improving Care at the End of Life.” The Center for Practical Bioethics offered ideas as part of the public input process, a fact noted in the Preface to the report.

We are excited that former Secretary Sebelius will provide a keynote address at our Annual Dinner, April 5, where she will discuss these ideas and her role as co-chair of the project. Additional information about the Annual Dinner can be found on our website.

Practitioners will be encouraged to see the scope and depth of the AHSG five recommendation. They are:

• Build the development and updating of an advance care plan into the fabric of life.

• Redefine Medicare coverage in a way that meets the complex needs of people with serious illnesses.

• Develop a set of quality metrics related to end-of-life care that can be used for accountability, transparency, improvements and payment.

• Increase the number and types of health professionals who can meet the growing needs of an aging population.

• Support model communities embracing fundamental change in the design and delivery of care for people with advanced illness.

Four background papers are included as the second part of the report:

• Overview of the End-of-Life Experience in the United States, by Laura C. Hanson, M.D., M.P.H.

• Care at the End of Life, by Diane E. Meier, M.D.

• Financing Care at the End of Life: Ensuring Access and Quality in an Era of Value-Based Reforms, by Haiden Huskamp, Ph.D. and David Stevenson, Ph.D.

• Doing Right by the Seriously Ill: Ethical Norms for Care Near the End of Life, by Mildred Z. Solomon, Ed.D.

You can find this report online at https://assets.aspeninstitute.org/content/uploads/2017/02/AHSG-Report-Improving-Care-at-the-End-of-Life.pdf


Kathy Greenlee joined the Center’s staff as Vice President for Health Policy and Aging in November 2016 after serving the past seven years as Assistant Secretary for Aging in the U.S. Department of Health and Human Services.