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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.

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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.

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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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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.

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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

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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)


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05/15/2017

Improving End-of-Life Care for African-Americans through Advance Care Planning in Partnership with Faith Communities

Leslie McNolty
The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected -- particularly the preference to die at home in hospice care. 

We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 


Barriers and Opportunities


Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning. For example, a survey of 205 African-American patients showed that “African-Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system.” 

Fortunately, despite all of this, a seminal report funded by the California Health Care Foundation in 2007 found that, although minority communities in California have done less advance care planning than whites, African-Americans had fewer negative attitudes about the general concept of advance care planning than do any other racial-ethnic group.5 

Nine Churches in Six Cities


In November 2015, the Center began a two-year project to work with religious communities to address advance care planning in African-American communities. With funding from the John and Wauna Harman Foundation, we partnered with VITAS Healthcare to recruit nine churches in six cities to work on advance care planning in their congregations. These churches designated advance care planning (ACP) ambassadors to teach about and advocate for advance care planning within their congregations.  

In Chicago, Dallas and Kansas City ACP Ambassadors focused first on reaching out to the clergy in their churches by making presentations at regularly scheduled work meetings. Teams in Atlanta, Philadelphia and West Palm Beach have worked through the different ministries in their churches to make presentations and organize events. At each event, Ambassadors asked the audience to commit to having a conversation about end-of-life care with their families. They also provided materials and additional information upon request following the presentation. In total, church teams organized 19 events that reached nearly 700 people. More than 200 attendees committed to having conversations with their family members about advance care planning and end-of-life care. Nearly 100 individuals approached the presenters for more information and discussion following the event. 

Crossing Over Jordan Conferences


ACP Ambassadors and VITAS Healthcare community liaisons in Atlanta, Chicago, Philadelphia and West Palm Beach each organized a half-day Crossing Over Jordan Conference to celebrate the conclusion of their six-month project and encourage other organizations in their communities to promote advance care planning. Nearly 500 community members attended these conferences, including representatives from local hospitals, assisted living centers, home health services, professional medical associations, community organizations and African-American churches.

The Crossing Over Jordan conferences were designed to exchange basic medical information about end-of-life care, as well as to celebrate the activities of the programs in traditional African-American church traditions that included music, singing, dancing and the spoken word performances.  There were also remarks from pastors and spiritual leaders connecting the idea of advance care planning with biblical scripture, and a contemporary theological exploration justifying the practice. Attendees of the Crossing Over Jordan conferences were encouraged to speak to their families and friends about advance care planning, and were told that they can rely on ongoing connection to the Center for Practical Bioethics and Vitas for resources on advance care planning in their communities.

The Center remains committed to improving end-of-life care for African-Americans by promoting advance care planning. We are planning the next stage of this project and look forward to meeting with our partners and other stakeholders in the next few months. 



i Able J, Pringe A, Rich A, Malik T, Verne J.  The impact of advance care planning of place of death, a hospice retrospective cohort study.  BMJ Supportive & Palliative Care 2013;3:168–173.
ii NHPCO’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5
 iii Rodriguez, J.M., Geronimus, A.T., Bound, J., Dorling, D. Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004.  Social Science and Medicine, 2015; 136-137 and 192-199
 iv Johnson K, Kuchibhatla M, Tulsky J., What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care? Journal of the American Geriatrics Society 2008;56(10):1953-1958
 v Crawley L, and Kagawa-Singer M. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, California Healthcare Foundation Report, March 2007.   


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04/23/2017

Reflections on the Life of Beth Smith

Written by Linda Doolin Ward and Myra Christopher

Linda’s Reflections 


Beth Smith
I met Beth Smith after Terry and I returned home to Kansas City after six years in New York and New Jersey. In 1981, when she and Marjorie Allen along with the other 10 founders of the Central Exchange were looking for help to break through the 160-member barrier, they asked several people to help identify candidates. Jody Craig and I had become acquainted through Kansas City Tomorrow and she suggested they talk with me. The fledgling CX’s financial prognosis was grim. Dorothy Johnson was keeping the books immaculately in a Harzfeld’s box under her bed and the books showed a growing problem. They had reached 160 members, but breakeven was 225, and the math was simply not working. They were stuck. I was dazzled by these women and the concept and I said yes.

Working with these twelve amazing women and the early members they had attracted in the first year was a great joy. Beth Smith and Marjorie Allen were clearly in the lead of this pack of leaders on a mission. I was in constant contact with one or both. Beth was the steady advisor, encouraging Marjorie at every step. Marjorie was relatively new to Kansas City and Beth, the consummate guide, was an enthusiastic tutor. The Central Exchange began to grow quickly and with our plans for the new location at 10th and Central in the old Fire Station, many new members joined and stayed.

When Marjorie heard a 60 Minutes program on Lupe Anguiano in Texas who was helping women become self-sufficient, after she and Beth talked it over, the Women’s Employment Network was born. They were both excited about this powerful concept, and we all worked hard to create this great organization that thrives today.  When Marjorie was diagnosed with cancer, she talked with Beth about the need to ensure the future financial viability of WEN. Some others had also been thinking about a financial resource for women and, once again, the two of them brought all the interested women together to create the Women’s Foundation, which also thrives today.

While the Central Exchange, the Women’s Employment Network and the Women’s Foundation were continuing to grow, I had an opportunity to join Payless Cashways. David Stanley had called Beth and asked about me. Beth must have said something good, because that launched the next 15 years of my work life. But while I was working at Payless and over the years after that, I stayed involved in all three of Beth and Marjorie’s creations off and on.

Fast forward five years after Payless—I had an opportunity to join what was then Midwest Bioethics Center. Again, Beth and I were involved in the same cause. For the next almost decade, Beth was a steady advisor and friend. We joined each other for lunch and shared all that was going on. She gave advice, calmed fears, told me I was doing a great job and otherwise provided the inspiration needed for anyone working for a cause. No other single person outside my family has been as consistently intertwined with my work and volunteer life as Beth Smith.  I cannot adequately express the importance of her influence in my life and I will carry her with me always.

Myra’s Reflections


Beyond a deep sense of loss, the thing that saddens me most about writing this tribute to Beth Smith is that many who read it will never have known this remarkable woman.

I met Beth approximately 30 years ago as the director of a brand-new not for profit, Midwest Bioethics Center (now the Center for Practical Bioethics). She was an icon in the non-profit sector of our community. She was so revered that I was quite intimidated by her. I've never been sure how or why I was invited to a "plowshare leadership retreat" at the Wildwood Outdoor Education Center with a handful of other young/new not-for-profit leaders including: Joan Israelite who became the development director of the Boys and Girls Clubs, Connie Campbell who became director of the Learning Exchange, Alan DuBois, director of the Genesis School, and Gary Baker, director of Crittenton Center, all of whom stayed in the not-for-profit community and went on to make Kansas City a better place.

In my lifetime, I'm confident that I have attended at least a dozen leadership training programs. I have only the vaguest memory of most of them now, but not so with Plowshare. This was a turning point in my personal and professional life and the future of the Center for Practical Bioethics.

The difference between Plowshare and the other programs is easy to pinpoint -- it was Beth Smith. It was her belief in the potential of those she had handpicked to attend, the significance she placed on the non-profit sector to our civil society and the importance of well-run not-for-profit organizations, especially those with strong governance structures and financial accountability.

While at Wildwood, Beth said to me, “When the time is right, I will serve on your board.” Rather than being put off by her assertiveness, I was thrilled to death. I remember thinking, “OMG! She thinks the Center has a future. She thinks we can actually pull this off." Frankly I've been to the point that even I was not sure, but I knew if Beth Smith understood the importance of our mission and was willing to help, others would follow.

Beth served on our board for six years and was the toughest board member under which I ever served. She always asked the hardest questions. She knew when I was trying to bluff a response.

Over the years, Beth and I became close friends and she became one of my most trusted confidants until Alzheimer's took this woman's genius from us.

Although Beth hadn't recognized me for some time, she held onto a memory of the Center and associated herself and me with it. On my very last visit, the first thing she said to me was, “So tell me about the Center.” Anyone who knows me knows there is nothing I like to do better.  When I paused, she said again, “So, tell me about the Center.” We spent an absolutely delightful afternoon having a perfectly circular conversation, and because of Beth Smith's wisdom, guidance and enduring love, there was much about which to tell her.

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04/18/2017

Kathy Greenlee’s Reflections on Paths to Person-Centered Planning

Challenging Us to See the Whole Person at All Stages of Life

Kathy Greenlee, VP for Aging and Health Policy


The Center for Practical Bioethics hosted the Joan Berkeley symposium on Thursday, April 6. The title for the day was “Paths to Person-Centered Planning.” In planning the event, my objective was to focus on tools and techniques grounded in a disability policy perspective that could benefit healthcare professionals and bioethicists. The day brought articulate and engaged speakers, raised new questions, introduced different language, and ultimately affirmed the strength of a multi-disciplinary approach to supporting people and their families as they face serious illness and end of life. 

Four distinct concepts emerged:
1) the perspective of the person as patient,
2) similarities and differences between shared decision-making and supported decision-making, 
3) the balance between what is “important to” a person and “important for” a person, and
4) the need to see a patient within the context of their family, however defined.

Person-Centered Communication


The panelists who opened the day demonstrated the importance of listening to people and the first speaker stole the show. 

Cathy Enfield, member of Self-Advocates Becoming Empowered (SABE), is an articulate adult woman with a developmental disability. She uses an iPad for communication assistance. She gave a first-person account of having healthcare providers look past her and talk directly to her caregiver. 

To communicate, Cathy needs support. Yet, public policies ranging from transportation to healthcare create barriers and financial disincentives that require her to be accompanied by someone to assist. Cathy’s comments were so compelling one of the medical educators in the audience intends to make them required reading for his first-year medical students. The problem of being looked past was affirmed in the afternoon when we discussed caring for someone with Alzheimer’s disease. The stigma surrounding dementia is so severe, patients who can communicate often become invisible as conversations shift to the caregiver only.

Negative Stereotypes


Each of the successive panelists raised important considerations. Mike Oxford, executive director for policy, Topeka Independent Living Resource Center, talked about living with chronic pain for more than 20 years. He worries that the focus on the opioid epidemic is making it more difficult for patients to get access to much needed medicine, understanding medicine is one of a variety of approaches for managing pain. Mike’s comments resonated with the Center’s work on chronic pain and the PAINS Project. 

Jean Hall, professor, Department of Health Policy and Management, University of Missouri-Kansas City and director, Institute for Health & Disability Policy Studies, is a person with multiple chronic conditions who received discouraging and inappropriate comments during her high-risk pregnancy when carrying triplets. As a researcher, she has documented lack of adequate prenatal care for woman with disabilities. 

Tyrone Flowers, a gun-shot survivor and Founder and president of Higher M-Pact, talked about the amplified issues of being an African-American male going through physical rehabilitation at the age of 18. During voc-rehab he was consistently funneled to vo-tech programs. Assumptions about his future reflected the circumstances of his childhood, not the talent he would display by graduating law school.

Shared vs. Supported Decision Making


What if your life decisions were called into question by people close to you? If the quality of your decision-making was challenged? If people started collecting evidence that you may be losing capacity?

These were the opening questions posed to us by Tina Campanella, CEO with Quality Trust for People with Disabilities in Washington, DC. People with disabilities and older people face these realities all the time. Human decision-making is complex and capacity to make decisions fluxuates. As we support other people, we need to think about how to make the most of someone’s abilities. We need to presume capacity and build from there. If we don’t presume capacity, we won’t go looking for it.

The fundamental element of supported decision-making is autonomy and control. Placing a person in the driver’s seat of their life. Dignity is the reason you presume capacity because it is important to recognize every human being has value and worth. Tina’s remarks about shared decision-making versus supported decision-making prompted a lively exchange with the audience. 

Shared decision-making comes from the healthcare field. However, sharing, by definition, means there are two loci of power: the patient and the provider. Supported decision-making presumes the person is in charge of their life. Professionals provide expertise and recommendations, but the ultimate decision-maker is the patient. The issue left unresolved is the impact on the moral agency of the healthcare provider in a supported decision-making scenario. What is the impact on the healthcare provider’s duty of care? Of the many concepts discussed, these differences in approach to decision-making are likely to generate the most additional thought and conversation. 

Patient Centered Care vs. Person-Centered Planning


The concepts of patient-centered care and person-centered planning are compatible but not interchangeable. 

Each of us are patients for only part of our lives. Robert Sattler, partner with Support Development Associates showed us a variety of documents that reflect a person-centered plan. Imagine taking a sheet of paper and some colored markers. Draw a big cartoon balloon and in it describe what you like and who is important to you. Then in another balloon, list things you don’t like. And for the third section, describe medical information that is important for others to know. In this simple manner, it is possible to capture the essence of someone in a way that is much different than an electronic health record. 
The core concept in person-centered thinking is to create a framework for identifying what is important to people while also identifying what is important for a person. For high-risk patients, professionals often focus on what is important for that person, motivated by a concern for health and safety. But a sole focus on health and safety – patient-centered care – overlooks what is unique about a person and what makes them happy. Person-centered planning challenges us to find the right balance; for someone to be both happy/satisfied and healthy/safe. A person will not do what important for them unless there is a connection to what is important to them. 

Family Relationships


All of us are part of a family, however defined, and a community. Our relationships to other people and our environment are ours to steer and something we take for granted. Michelle Reynolds (Sheli), director of the Individual Advocacy and Family Support for the Institute for Human Development at the University of Missouri-Kansas City, discussed the importance of family in relationship to a person with a disability of any age. 

Often a person with a disability needs supports with basic activities, from personal care to social engagement. However, those supports can also surround a person in such a way that they impede relationships with family, friends and community. The supports can end up defining someone’s life. After working with hundreds of people with disabilities and their families, Sheli developed a Charting the LifeCourse tool to help people plot a full and meaningful life.

The tool captures aspects of life most of us never focus on, yet each of these life domains add unique value and opportunity to the experience of life. The six domains are:
1) daily life and employment
2) community living
3) safety and security
4) healthy living
5) social and spirituality
6) citizenship and advocacy

Charting the LifeCourse reflects a core belief that all people and their families have the right to live, love, work, play and pursue their life aspirations in their community. We have a tendency to segment people based on a label. To change policy and practices, we need to think and talk about all people. All people need the six domains of daily life. For persons with disabilities, the strategy for incorporating those domains may be unique. But, then again, that is true for each of us.

The Bioethics Connection


How do these concepts fit into bioethics? Our very own Richard Payne, John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University, spoke and recalled the panel of consumers who began the day. How do we really see people? 

As a medical educator, he asks students if they can really see the person in front of them. He uses pedagogical exercises to teach this lesson. 

Don Reynolds, assistant research professor and director of the Office for Responsible Research at the University of Missouri Center for Health Ethics, as well as a Center for Practical Bioethics Fellow, provided continuity to the past and future. He has worked with the UMKC Institute for Human Development and the Center to bring attention to the need for advanced illness care planning for people with developmental disabilities. He has personally seen the continued evolution of patient centered care and believes we are on the right track to make person-centered planning work.

As we engaged in audience discussion at the end of the day, it was clear we had been challenged to see the whole life of a person in relationship to their healthcare at all stages of life. We reconnected with colleagues and met new people. We concluded the day by talking with Lex Frieden, professor of biomedical informatics, professor of rehabilitation at the University of Texas Health Science Center, and one of the pioneers responsible for the Americans with Disabilities Act.

In the end, we all experience the challenges and opportunities of life. Adding new voices and concepts to healthcare and bioethics conversations will enrich us all. 

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03/07/2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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03/07/2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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