Wednesday, September 6, 2017

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

Christopher, who credits her success to early believers and supporters, will be honored along with Steven Miles, MD, who is recognized for his contribution to bioethics scholarship and devotion to the alleviation of suffering.

In announcing the award, ASBH stated: “Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.”

In response to the ASBH announcements, congratulations from national and local leaders in healthcare have poured in, as exemplified below:

Myra Christopher has long been a hero of mine. Her values and unwavering commitment to service represent a personal True North.

Ira Byock, MD, Founder & Chief Medical Officer
Providence Institute for Human Caring, Torrance, CA

Myra Christopher is part of a group of pioneering women – in which I include Dame Cicely Saunders, Florence Wald and Elisabeth Kubler-Ross – each of whom stood up, powerfully and strategically, on behalf of people who are suffering. Because of Myra, the beginnings of a transformation towards person-centered care has begun.

Diane Meier, MD, FACP, Director of the Center to Advance Palliative Care
Mount Sinai Health System, New York, NY

Myra Christopher’s contributions to improving care for patients at the end of life are emblematic of some of the best features of bioethics. Rather than simply engaging in research (which she also does), she has shown how commitment and intelligent action can lead to changes in policy and practice that actually improve the lives of patients.

David Magnus, PhD, Director of the Stanford Center for Biomedical Ethics
Stanford University, Palo Alto, CA

As we continue to wrestle with ongoing issues in bioethics (end-of-life care, protection of human subjects, pain management, etc.), as well as enter into new challenges in bioethics (new technologies, genomics, healthcare financing, etc.), we will all benefit from the legacy of your work and be better prepared to bring bioethics down to that “practical” level that you have so successfully advocated.

Betty Drees, MD, FACP, FACE, Professor of Medicine and Dean Emerita
University of Missouri-Kansas City School of Medicine, Kansas City, MO

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Friday, August 4, 2017

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.

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Wednesday, July 26, 2017

The Americans with Disabilities Act: Before and After the Fall

For the past many years, I have publicly and privately acknowledged the July 26th anniversary of the Americans with Disabilities Act. Public recognition of the anniversary was an important part of my role as the Administrator of the Administration for Community Living (ACL), the federal agency that funds a variety of important programs that support people with disabilities and their families. Two years ago, at the 25th anniversary, I attended community and campus events in Lawrence and highlighted the anniversary in Washington, D.C. 

One of my favorite aspects of this annual recognition is the company I keep. Many of the individuals who fought at the local, state and federal level for the civil rights of people with disabilities still walk and roll among us. Over the course of my seven years in Washington and during my time in Kansas state government, I have had the pleasure of meeting and collaborating with some of the strongest advocates for people with disabilities in this country. To know the people who created and fought for the ADA is nothing less than an honor. Many of the leaders in this movement are now my friends.

Blame the Mouse

Beginning in August 2016, the benefits of the Americans with Disabilities Act were made real for me. On August 2nd of last year, I fell from a ladder (blame the dead mouse in my attic) and sustained a serious injury to my right leg. I shattered the top of my tibia and fractured my ankle. I was in the acute care hospital for six days and inpatient rehab for 12. From August to the end of October, I was totally non-weight bearing on my right leg. In November and December, I regained my ability to bear weight and walk. In January, I progressed to a cane and was released to drive a car. I still use my cane for longer distances and uneven surfaces.

I have been living as a person with a disability for the past year. It has been difficult, enlightening, and both encouraging and discouraging. I have new insight and appreciation for orthopedic rehabilitation. I knew it would be hard. The difficulty of rehab is obvious to even casual observers. I didn’t realize it was so scary. I will never, ever, underestimate the difficulty of a transfer for the rest of my life. When I was in the hospital, I characterized a transfer as the intersection of a task and a prayer. It is. Every. Single. Time. It’s just damn scary to swing a broken leg off a bed, stand at walker on one leg, pivot to a wheelchair, or hop to the bathroom. It’s hard to get in and out of a car with an unbendable leg. To board plane I had to hop with a walker, my trusted gait belt strapped around me. 

What’s the Big Deal?

Accessible bathrooms are a big deal. I was released to fly home to Kansas in early September. As my partner and I waited at the gate, I made mental bathroom calculations. I knew it would be extremely difficult for me to use the restroom on the airplane. I avoided drinking anything a few hours before my flight. I positioned myself in the boarding area with one eye on the boarding door and the other on the accessible family restroom across the hall. Then I aimed for the window of time when boarding could commence, my gate attendant would arrive and my final mad dash – roll – to the restroom. Just before that important moment arrived, an airport worker from one of the restaurants sauntered alone into the family restroom. And stayed. As we moved into position at the bathroom door I became increasingly angry. That was not his restroom, it was mine. That space is sacred – to the degree a bathroom can be – because it is reserved for people for whom air travel is very hard. Families, people with attendants, people with disabilities, like me. 

Accessible hotel rooms are farcical. As my healing progressed, I became better at transferring to a comfortable chair. But, once I’m in the chair, I need to be able to get out. We saw numerous hotel rooms and temporary housing that had modern squishy armless furniture in the living area. An armless living room chair in an accessible room is an oxymoron. Or, just moronic. Take your pick. My favorite non-accessible accessible room was one with plenty of floor space for my wheelchair, but a doorway between the living and bedroom area too narrow to roll through. Fortunately, I needed and often found grab bars near the toilet, a roll under sink, and a shower with grab bars and a shower seat. These items should become more standard. And we should stop selling and installing short toilets. 

Who’s Disabled?

I am amazed by how many people are injured, temporarily disabled or permanently disabled. It is humbling to hang out at rehab, whether inpatient or outpatient. People get hurt badly. Lots of them. Lots of us. And while my experience with physical therapy is overwhelmingly positive, even they don’t have a power door on the bathroom. 

People who have been hurt don’t wear nametags but they do open doors. Dozens and dozens of times someone has held a door for me and said, “I’ll help. I’ve been there.” People have stopped to help my partner assemble or disassemble my wheelchair. So many strangers have been observant and courteous. And I often wonder how they perceive me. What is the personal and perceived trajectory from injury to temporary to permanent disability? I think it looks like I’ve been injured. Would people react differently if I was obviously disabled? I have come to realize that what people see and what I perceive about myself are complex topics. Not all injuries or disabilities are visible. 

I was both safe and fearless in my wheelchair. I appreciate it for the liberating device it is, not the confining device able-bodied people perceive it to be. I know so many people who use wheelchairs for mobility. Each of them are teachers to me. As I rolled around rehab, I knew I had role models all around me. Many of my friends and former colleagues use various types of wheelchairs and scooters for assistance. I feel more wheelchair conversant; more like I have enough knowledge to have a capable conversation. During a recent trip to Hawaii, I met with several stakeholders from the disability community and talked with a lunch companion about the progression from a manual to power-assist chair as her MS worsens. I don’t still use a wheelchair but I own one. Moving through that experience was humbling and powerful all at once.

Happy Anniversary

Before the next ADA anniversary comes around, I have more physical and mental work to do. I graduated physical therapy with the understanding they had taken me as far as they could. I now work with a personal trainer to improve the strength of my leg and flexibility of my foot. I hope to continue to improve. But, will I? I hope so. I hope to walk unaided for a distance of several miles. I hope to be strong enough to walk a 5K next Mother’s Day. Can I? How permanent is this injury? It’s severe. It’s lifelong. I will likely need knee replacement in the future. 

Am I a person with a disability? Or am I injured? The bones have healed and I don’t know the answers yet to these questions. I do know the longer I work on issues that impact the lives of people with disabilities, the more I become part of the community. Regardless of the outcome of my inward reflection, I welcome being part of this civil rights movement. The one that works so hard to improve the lives of all people every day. 

On July 26th, we should all own and celebrate the Americans with Disabilities Act. For my part this year, I also want to say thank you. Thank you to the leaders who fought for the rights of people with disabilities in this country. You opened doors for me decades before I needed your help.

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Monday, July 24, 2017

Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome

The family of Charlie Gard

The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care.

The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week.

Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek not in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment?
These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these.

What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing Healthcare Treatment Decision Making for Minors, including infants, that is now more than two decades old.

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“Don’t forget about children” was Bill Bartholome’s response when I asked, shortly before his death in 1999, how we could honor him. Bill was a pediatrician, bioethicist, member of the Center for Practical Bioethics’ charter board (then known as the Midwest Bioethics Center), and a nationally known advocate for children with disabilities. I think of Bill often, and after nearly two decades still wish that we could have a glass of wine and argue (which we did with great delight) about interesting cases.
Written by Myra Christopher
A Turning Point in Rights of Children with Disabilities
In light of Charlie Gard and similar recent cases, I have wondered if Bill’s strong opinions, shaped when he was a pediatric resident at Johns Hopkins in 1971, would have changed in recent years. As a pediatrician in training, Bill was named attending for a newborn with Downs Syndrome whose stomach was not connected to his bowel. A simple surgical procedure was all it would take for the child, who came to be known as “Baby Doe” (now “Baby Doe One” or “Baby Doe Hopkins”), to grow and thrive. The problem was that Baby Doe’s parents (a nurse and a businessman) did not want a child with disabilities or a “mongoloid” as such children were often referred to then. With physicians on staff, they decided together that the baby would not be fed, allowing him to die. Baby Doe was placed in the back of the nursery and died 17 days later. 
Bill and Norm Fost, a nationally known pediatrician/bioethicist now at the University of Wisconsin (then chief resident under whom Bill served), thought the decision was inherently wrong. After going through all the “appropriate” channels to express their concerns, the two of them became whistle-blowers. In the midst of their efforts to save him, Baby Doe died. Bill persisted, however, and ultimately convinced Walter Cronkite, CBS Evening News Anchor, to do an exposé about the case during primetime television. It was a turning point in the rights of children with disabilities. Children were no longer seen as property. Rather, parents were considered custodians or stewards, and the role of society was also acknowledged.
Dying or Sick?
Disenchanted by what had happened, Bill left medicine and went to Harvard where he earned a Masters in Theological Studies and became a nationally recognized advocate for children with disabilities and a pioneer in bioethics. Ultimately, he made his way home to Kansas City where he chaired the Department of the History and Philosophy of Medicine at the University of Kansas Medical School and served on the Center’s charter board.
Under his leadership in 1995, the Center, as noted above, published a guideline for Healthcare Treatment Decision Making for Minors, which includes a section on children without capacity, i.e.,” infants, very young children and minors with cognitive impairment.” Ethics committee chairs, children’s advocates, bioethicists and pediatric healthcare professionals all joined in the work to establish the guidelines. As we were working on the document late one night, Bill said to me, “The problem here is that some children come unto us dying; others are just sick as sh.., and we can’t tell one from the other, so, we end up doing terrible things to innocent dying kids.”
As I consider the complexity of the Charlie Gard case, I wonder where Bill would place this baby’s “best interest.” What might be his guidance now?  
No Bad Guys
In reviewing the guidance document today, I am struck by how timely it remains. In particular, I am taken with this statement:
If providers believe that parental refusal of permission for a specific treatment (or non-treatment) will result in predictable harm to the health or well-being of the child, they are obligated to participate in conflict resolution procedures. If the disagreement cannot be resolved, the healthcare providers have a duty to seek permission for treatment (or withdrawal of treatment) as provided by the law. 
There are no bad guys in the Charlie Gard case. Tragically, there are only people who will carry the burden of their involvement in whatever decision is made all the days of their life. It is my hope that, when all is said and done, each one can say, “I did what I thought was best for Charlie” – no matter what is ultimately decided.  

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