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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Wednesday, July 5, 2017

Personalized Medicine: Our Future or Big Data Voodoo?

Kumar Ethirajan, MD
NOTE: Kumar Ethirajan, MD, an oncologist specializing in cancer genetics in the Kansas City area since 1993 and member of the Center for Practical Bioethics’ board of directors, will present this topic as part of the Center’s BIOETHICS MATTERS lecture series on Wednesday, July 19, 7:00 pm, at the Kansas City Public Library Plaza Branch, 4801 Main Street, Kansas City, MO. Bring your perspectives, questions and personal stories. Admission is free. All are welcome. 

Personalized medicine has the potential to revolutionize medicine. Actually, that’s not true. Personalized medicine IS REVOLUTIONIZING medicine. 

Personalized medicine IS our future! Yet, based on a 2013 survey by GfK, a global consumer research firm, just 27% of people have heard of the term personalized medicine and, of those, only 4% understand what the term means.

You may have heard personalized medicine referred to as genomic medicine, precision medicine or individualized medicine. Whatever you call it, it’s medicine that uses information about your genes to prevent, diagnose and treat disease. In cancer, it’s about using information about a tumor to discover certain biomarkers or genes and, hopefully, having a drug to treat it. So far, researchers have discovered more than 1800 disease genes, created more than 2,000 genetic tests for human conditions, and have 350 drugs currently in clinical trials.

So, this is great, right? Yes. But consider that some 30% of the world’s stored data is generated by the healthcare industry – and that a single patient on average generates 80 megabytes per year! With healthcare data exploding like this, shouldn’t we be thinking about the questions it raises? For example:
Who owns your genetic information and who should have access to it? Does the abnormal biomarker discovered by a testing company data belong to you or the entity that discovered it? 
Is your information secure? Can it be used against you? Is de-personalization the answer? Is one layer of de-personalization sufficient?
And what if you have your genome sequenced and it reveals some abnormality related to a currently incurable or even untreatable disease? Do you want to know?

Perhaps the first step in benefiting from this revolution is to educate ourselves. Good ethics and good medicine start with good facts. Learn more about what personalized medicine is. What’s the promise? What’s the hype? 

A good place to begin is this article in Genome Magazine. A good opportunity to learn more is at a program presented by Kumar Ethirajan, MD, a member of the Center for Practical Bioethics’ board of directors, on July 19, 7:00-8:30 pm at the Kansas City Public Library Plaza Branch. Admission is free. Reservations requested.

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