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Author Archive: Practical Bioethics

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07/26/2017

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.

Full Article

This entry was posted in Health Care and tagged , , . Posted by Practical Bioethics. Bookmark the permalink.

07/26/2017

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.

Full Article

This entry was posted in Health Care and tagged , , . Posted by Practical Bioethics. Bookmark the permalink.

07/24/2017

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.

- - - - - - - - - - -

“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.  

Full Article

07/24/2017

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.

- - - - - - - - - - -

“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.  

Full Article

07/05/2017

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.

Full Article

This entry was posted in Health Care and tagged , , . Posted by Practical Bioethics. Bookmark the permalink.

07/05/2017

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.

Full Article

This entry was posted in Health Care and tagged , , . Posted by Practical Bioethics. Bookmark the permalink.

06/12/2017

World Elder Abuse Awareness Day (#WEADD)

Kathy Greenlee,
Vice President for Aging and Health Policy

Why I Am Tired and Inspired

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. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.

The United Nations recognizes June 15 as World Elder Abuse Awareness Day. Started in 2006 by Elizabeth Podnieks of the International Network for the Prevention of Elder Abuse, the day has become an international opportunity to highlight the global problem of the abuse of older people.

During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.

The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed. It can be perpetrated by strangers who befriend older people on the telephone or through the internet or who come through the front door. Criminals prey on the cognitive decline associated with advancing age and the presence of dementia.

Reasons to Be Tired 


I became aware of the scourge of elder abuse over 25 years ago when I worked in the Office of the Kansas Attorney General as a young lawyer. In many ways, I have grown up with this issue as a professional. Four aspects of the issue – euphemisms at best and excuses at worst -- continue to motivate and anger me.

1. I am tired of calling elder abuse “scams.” I have not set out to banish the word. But it’s simply not strong enough. These aren’t scams, they are crimes. Older people aren’t tricked, they are exploited. They aren’t stupid, they are scared. By referring to the targeting of older people as scams, we fail to warn sufficiently. We need to do a better job of telling people: When you get old, people will target you and some will try to hurt you. Be aware, be informed and be careful.

2. I am tired of ageism. One of the root causes of abuse is the societal devaluing of old people. Older adults are dismissed, talked down to, ridiculed and, most tragically, ignored. Despite the overwhelming presence of older people in society, on an individual level, older people become invisible. We stop seeing them and we lose them. And in the shadows of their isolation, criminals prey.

3. I am tired of talking about older adults when we should be working with them. I feel strongly that the greatest deficit in the field of aging is the lack of presence of older people themselves. In 1984, I was trained as a volunteer in a domestic violence program. The domestic violence movement in this country was started by formerly battered women. The same can be said about the work against sexual assault. Rape survivors lead the way by bravely speaking out. This is not the case with the work to end elder abuse. The champions in this work are people just like me, professionals who are angered to the point of action and have been for years. We need to provide support and seek opportunities for older people to address the problem of abuse directly and publicly.

4. I am tired of calling them victims, yet we must hold onto this language. It is a crime to hit, slap, rape, abandon, neglect, drug and steal from older adults. Even and especially when the perpetrator is a member of the family. We need adult protective services, law enforcement, prosecutors and judges to recognize these crimes. We need to stop dismissing these crises as family matters.

Reasons to Be Inspired


I am ready to call them survivors. The most hopeful part of the work to end elder abuse is starting to emerge. We need to understand resilience. What does it mean to survive abuse in old age? How does “trauma informed care” relate to these issues? How does a person who needs functional support continue to thrive? How do victims set their own course and live the rest of their lives as survivors?

World Elder Abuse Awareness Day is a day to reflect, focus and applaud. We need this day. We need to shout and talk and listen. We need to tell each of you in the community, “We have a serious problem.” Older people are not safe. For every year we recognize World Day, each of us has taken another lap toward our own old and older age. On this day, we join the world in the sobering acknowledgement of an international epidemic. I am inspired by this work. Inspired by older people. Inspired by survivors. Inspired by our determination to bring this epidemic out into the open and fight together for it to end.

SUGGESTED LINKS


Center for Practical Bioethics
http://www.PracticalBioethics.org
https://www.facebook.com/practicalbioethics/
https://twitter.com/PracBioethics

National Latin@ Network
https://enblog.nationallatinonetwork.org/a-message-from-the-founder-of-world-elder-abuse-awareness-day/

National Center on Elder Abuse
www.ncea.acl.gov
https://www.facebook.com/NationalCenteronElderAbuse/
https://twitter.com/NCEAatUSC

National Committee for the Prevention of Elder Abuse
http://www.preventelderabuse.org
https://www.facebook.com/NCPEA/
https://twitter.com/NCPEA

National Adult Protective Services Association
http://www.napsa-now.org
https://www.facebook.com/NAPSANow/
https://twitter.com/NAPSA_NOW

Elder Justice Coalition
http://elderjusticecoalition.com
https://www.facebook.com/elderjustice/
https://twitter.com/ElderJustice

Full Article

06/12/2017

World Elder Abuse Awareness Day (#WEADD)

Kathy Greenlee,
Vice President for Aging and Health Policy

Why I Am Tired and Inspired

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. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.

The United Nations recognizes June 15 as World Elder Abuse Awareness Day. Started in 2006 by Elizabeth Podnieks of the International Network for the Prevention of Elder Abuse, the day has become an international opportunity to highlight the global problem of the abuse of older people.

During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.

The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed. It can be perpetrated by strangers who befriend older people on the telephone or through the internet or who come through the front door. Criminals prey on the cognitive decline associated with advancing age and the presence of dementia.

Reasons to Be Tired 


I became aware of the scourge of elder abuse over 25 years ago when I worked in the Office of the Kansas Attorney General as a young lawyer. In many ways, I have grown up with this issue as a professional. Four aspects of the issue – euphemisms at best and excuses at worst -- continue to motivate and anger me.

1. I am tired of calling elder abuse “scams.” I have not set out to banish the word. But it’s simply not strong enough. These aren’t scams, they are crimes. Older people aren’t tricked, they are exploited. They aren’t stupid, they are scared. By referring to the targeting of older people as scams, we fail to warn sufficiently. We need to do a better job of telling people: When you get old, people will target you and some will try to hurt you. Be aware, be informed and be careful.

2. I am tired of ageism. One of the root causes of abuse is the societal devaluing of old people. Older adults are dismissed, talked down to, ridiculed and, most tragically, ignored. Despite the overwhelming presence of older people in society, on an individual level, older people become invisible. We stop seeing them and we lose them. And in the shadows of their isolation, criminals prey.

3. I am tired of talking about older adults when we should be working with them. I feel strongly that the greatest deficit in the field of aging is the lack of presence of older people themselves. In 1984, I was trained as a volunteer in a domestic violence program. The domestic violence movement in this country was started by formerly battered women. The same can be said about the work against sexual assault. Rape survivors lead the way by bravely speaking out. This is not the case with the work to end elder abuse. The champions in this work are people just like me, professionals who are angered to the point of action and have been for years. We need to provide support and seek opportunities for older people to address the problem of abuse directly and publicly.

4. I am tired of calling them victims, yet we must hold onto this language. It is a crime to hit, slap, rape, abandon, neglect, drug and steal from older adults. Even and especially when the perpetrator is a member of the family. We need adult protective services, law enforcement, prosecutors and judges to recognize these crimes. We need to stop dismissing these crises as family matters.

Reasons to Be Inspired


I am ready to call them survivors. The most hopeful part of the work to end elder abuse is starting to emerge. We need to understand resilience. What does it mean to survive abuse in old age? How does “trauma informed care” relate to these issues? How does a person who needs functional support continue to thrive? How do victims set their own course and live the rest of their lives as survivors?

World Elder Abuse Awareness Day is a day to reflect, focus and applaud. We need this day. We need to shout and talk and listen. We need to tell each of you in the community, “We have a serious problem.” Older people are not safe. For every year we recognize World Day, each of us has taken another lap toward our own old and older age. On this day, we join the world in the sobering acknowledgement of an international epidemic. I am inspired by this work. Inspired by older people. Inspired by survivors. Inspired by our determination to bring this epidemic out into the open and fight together for it to end.

SUGGESTED LINKS


Center for Practical Bioethics
http://www.PracticalBioethics.org
https://www.facebook.com/practicalbioethics/
https://twitter.com/PracBioethics

National Latin@ Network
https://enblog.nationallatinonetwork.org/a-message-from-the-founder-of-world-elder-abuse-awareness-day/

National Center on Elder Abuse
www.ncea.acl.gov
https://www.facebook.com/NationalCenteronElderAbuse/
https://twitter.com/NCEAatUSC

National Committee for the Prevention of Elder Abuse
http://www.preventelderabuse.org
https://www.facebook.com/NCPEA/
https://twitter.com/NCPEA

National Adult Protective Services Association
http://www.napsa-now.org
https://www.facebook.com/NAPSANow/
https://twitter.com/NAPSA_NOW

Elder Justice Coalition
http://elderjusticecoalition.com
https://www.facebook.com/elderjustice/
https://twitter.com/ElderJustice

Full Article

06/06/2017

Good Death, or Assisted Suicide?

The Case of Mr. Perry and his Pacemaker

Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics

NOTE: Dr. Rosell, a bioethics consultant and educator, will present the case of Mr. Perry for ethics discussion and likely debate on Thursday, June 22, 2017 at 7:00 PM in the artfully rebuilt Westport Presbyterian Church, 201 Westport Rd, Kansas City, MO. Bring your perspectives, arguments, and personal stories of moral medical dilemma. Admission is free. All are invited and welcome.

Mr. Perry (not his real name) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Prior to that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Tired of Fighting


Mr. Perry had a cardiac resynchronization therapy defibrillator (CRT-D) implanted a few years ago. It included an electrical pacing component for heart rhythms, on which the patient was 100% dependent. The defibrillator had shocked him, more than once, just before he came to the hospital E.R. with this request. That was the last straw for Mr. Perry. No more shocks for him. No nursing home or rehab or hospitalizations or medications. And no more mechanical pacing either. “I’m tired of fighting.”

Deactivating an internal defibrillator is one thing. The patient’s cardiologist didn’t need an ethics consultation for that decision. “If he doesn’t want to be shocked again, that’s his decision. And if it went off again after he’d requested it stopped, that could be a kind of torture,” she reasoned. Deactivation happened quickly after admission from the Emergency Department. A “Do Not Attempt Resuscitation” order was placed in the chart.

But the pacemaker, also? He wanted it stopped. Ought we do so? Would that be ethically respectful of this patient’s autonomy? Or would it be physician-technician assisted suicide?

“If we stop the pacemaker, Mr. Perry, you will die within a few minutes.”

“Yes, I know. I’m tired of fighting. Please.”

Ethics Take-Aways


There are at least three ethics “take-aways” from pondering this situation:

1) Although most clinical ethicists and cardiologists will argue that stopping Mr. Perry’s pacemaker is ethically and medically permissible, there is a significant minority opinion that it is not. Other thoughtful people will see this as troubling, too close to the gray line between suicidality and permissible refusal of life-sustaining treatment. One survey of cardiologists indicated that 77.6% (n=787) had been involved in pacemaker deactivation. Only 34.4% reported being comfortable doing so.  Anecdotally, a pacemaker manufacturer’s technician told me that neither he nor any of a dozen colleagues would agree to participate in turning off (or down to sub-therapeutic level) a pacemaker on which the patient was dependent. Two bioethicist-physicians debate the issue in a case review published as an article titled, “Is it permissible to shut off this pacemaker?”  The one dissenting from pacemaker deactivation in a case like that of Mr. Perry claims that doing so would be assisted suicide, which he claims is wrong. Would it? Is it? We do not all agree.

2) Informed consent process, both oral and written, for cardiovascular implantable electronic devices (CIEDs) ought to include discussion of deactivation and end-of-life decisions. Clinical colleagues and I published a review of consent forms and patient charts for 91 patients who had received an implantable cardioverter defibrillator (ICD). Only one of those records gave evidence of end-of-life discussion, which could involve device deactivation.  This paucity of information provided patients regarding deactivation ought to change.

3) One might reasonably ask whether Mr. Perry chose rightly. Even if we were to conclude that it was right of his cardiologist to respect her patient’s autonomous decision, is it possible that Mr. Perry himself acted wrongly? He had grandchildren, one of whom was in the room when Grandpa died. Ought he have been willing to accept lesser independence, to endure suffering awhile longer, to rethink what matters for an acceptable quality of life—if only to spend more time with his grandchildren? Were his values ordered rightly? One need not judge by simply raising the question. I am not yet a grandfather, nor do I physically or emotionally suffer very much right now, but I think that in Mr. Perry’s situation, I would hope to value and choose differently.

  1) Mueller PS, Jenkins SM, Bramstedt KA, Hayes DL. “Deactivating implanted cardiac devices in terminally ill patients: practices and attitudes,” Pacing Clin Electrophysiol 2008 May; 31(5):560-8. 
  2) Yates, FD and RD Orr, Ethics & Medicine 24, 1 (Spr 2008): www.cbhd.org .
  3) Niewald, Broxterman, Rosell and Rigler, “Documented consent process for implantable cardioverter-defibrillators and implications for end-of-life care in older adults,” Journal of Medical Ethics 2013; 39:94-97.

Letting Go


A hospital ethics consultation landed on the side of permissibility and respect for a capacitated patient’s autonomy. Subsequently, Mr. Perry had his wishes respected, and he died peacefully surrounded by family and a family friend, who read scripture and offered prayer. A priest chaplain had previously given last rites. His lady friend sat by his side, held his hand, stroked his arm and said, “We’ve had good years together, but you’ve suffered enough. I’ll let you go.” Mr. Perry’s last words were, “Thank you.”

Bioethics Case Studies

Case studies are an important tool in bioethics, especially in practical bioethics where the focus is on real issues in real life and real time. Case studies provide a roadmap for decision-making in future cases, help drive the development of new analysis and thought about complex medical and moral dilemmas, and are an effective way to bring bioethics alive for students, healthcare providers, administrators, attorneys and, even in some situations, patients and families. (Read More)


Full Article

06/06/2017

Good Death, or Assisted Suicide?

The Case of Mr. Perry and his Pacemaker

Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics

NOTE: Dr. Rosell, a bioethics consultant and educator, will present the case of Mr. Perry for ethics discussion and likely debate on Thursday, June 22, 2017 at 7:00 PM in the artfully rebuilt Westport Presbyterian Church, 201 Westport Rd, Kansas City, MO. Bring your perspectives, arguments, and personal stories of moral medical dilemma. Admission is free. All are invited and welcome.

Mr. Perry (not his real name) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Prior to that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Tired of Fighting


Mr. Perry had a cardiac resynchronization therapy defibrillator (CRT-D) implanted a few years ago. It included an electrical pacing component for heart rhythms, on which the patient was 100% dependent. The defibrillator had shocked him, more than once, just before he came to the hospital E.R. with this request. That was the last straw for Mr. Perry. No more shocks for him. No nursing home or rehab or hospitalizations or medications. And no more mechanical pacing either. “I’m tired of fighting.”

Deactivating an internal defibrillator is one thing. The patient’s cardiologist didn’t need an ethics consultation for that decision. “If he doesn’t want to be shocked again, that’s his decision. And if it went off again after he’d requested it stopped, that could be a kind of torture,” she reasoned. Deactivation happened quickly after admission from the Emergency Department. A “Do Not Attempt Resuscitation” order was placed in the chart.

But the pacemaker, also? He wanted it stopped. Ought we do so? Would that be ethically respectful of this patient’s autonomy? Or would it be physician-technician assisted suicide?

“If we stop the pacemaker, Mr. Perry, you will die within a few minutes.”

“Yes, I know. I’m tired of fighting. Please.”

Ethics Take-Aways


There are at least three ethics “take-aways” from pondering this situation:

1) Although most clinical ethicists and cardiologists will argue that stopping Mr. Perry’s pacemaker is ethically and medically permissible, there is a significant minority opinion that it is not. Other thoughtful people will see this as troubling, too close to the gray line between suicidality and permissible refusal of life-sustaining treatment. One survey of cardiologists indicated that 77.6% (n=787) had been involved in pacemaker deactivation. Only 34.4% reported being comfortable doing so.  Anecdotally, a pacemaker manufacturer’s technician told me that neither he nor any of a dozen colleagues would agree to participate in turning off (or down to sub-therapeutic level) a pacemaker on which the patient was dependent. Two bioethicist-physicians debate the issue in a case review published as an article titled, “Is it permissible to shut off this pacemaker?”  The one dissenting from pacemaker deactivation in a case like that of Mr. Perry claims that doing so would be assisted suicide, which he claims is wrong. Would it? Is it? We do not all agree.

2) Informed consent process, both oral and written, for cardiovascular implantable electronic devices (CIEDs) ought to include discussion of deactivation and end-of-life decisions. Clinical colleagues and I published a review of consent forms and patient charts for 91 patients who had received an implantable cardioverter defibrillator (ICD). Only one of those records gave evidence of end-of-life discussion, which could involve device deactivation.  This paucity of information provided patients regarding deactivation ought to change.

3) One might reasonably ask whether Mr. Perry chose rightly. Even if we were to conclude that it was right of his cardiologist to respect her patient’s autonomous decision, is it possible that Mr. Perry himself acted wrongly? He had grandchildren, one of whom was in the room when Grandpa died. Ought he have been willing to accept lesser independence, to endure suffering awhile longer, to rethink what matters for an acceptable quality of life—if only to spend more time with his grandchildren? Were his values ordered rightly? One need not judge by simply raising the question. I am not yet a grandfather, nor do I physically or emotionally suffer very much right now, but I think that in Mr. Perry’s situation, I would hope to value and choose differently.

  1) Mueller PS, Jenkins SM, Bramstedt KA, Hayes DL. “Deactivating implanted cardiac devices in terminally ill patients: practices and attitudes,” Pacing Clin Electrophysiol 2008 May; 31(5):560-8. 
  2) Yates, FD and RD Orr, Ethics & Medicine 24, 1 (Spr 2008): www.cbhd.org .
  3) Niewald, Broxterman, Rosell and Rigler, “Documented consent process for implantable cardioverter-defibrillators and implications for end-of-life care in older adults,” Journal of Medical Ethics 2013; 39:94-97.

Letting Go


A hospital ethics consultation landed on the side of permissibility and respect for a capacitated patient’s autonomy. Subsequently, Mr. Perry had his wishes respected, and he died peacefully surrounded by family and a family friend, who read scripture and offered prayer. A priest chaplain had previously given last rites. His lady friend sat by his side, held his hand, stroked his arm and said, “We’ve had good years together, but you’ve suffered enough. I’ll let you go.” Mr. Perry’s last words were, “Thank you.”

Bioethics Case Studies

Case studies are an important tool in bioethics, especially in practical bioethics where the focus is on real issues in real life and real time. Case studies provide a roadmap for decision-making in future cases, help drive the development of new analysis and thought about complex medical and moral dilemmas, and are an effective way to bring bioethics alive for students, healthcare providers, administrators, attorneys and, even in some situations, patients and families. (Read More)


Full Article