Wednesday, January 11, 2017

Bishop Tutu’s Plea Prompts Personal Meditation on Assisted Suicide

By Myra Christopher
I worked late Tuesday night and was listening to NPR as I always do during my short commute home when I heard that, in celebration of his 85th birthday, Bishop Desmond Tutu announced that he supports physician-assisted suicide and “prays that politicians, lawmakers and religious leaders have the courage to support the choices that terminally ill citizens make in departing Mother Earth with dignity and love.” I was stunned.
At age 30, I decided to spend my life working to improve end-of-life care and that the way that I would do that would be by “doing ethics.” I would spend my life arguing that the seriously ill and dying have an inherent right to a “dignified death.” This year I will be 70, and I have had a long and interesting career. Over the past 40 years, the issues of euthanasia and physician-assisted suicide have been what I considered as recurring distractions from what I have thought to be really important, i.e., advancing palliative care. Bishop Tutu’s comments, however, cannot and should not be considered by any one as simply a “distraction.” I believe they are a “game-changer.”
In the late 1990s, I directed Community-State Partnerships to Improve End-of-Life Care, an $11.25m Robert Wood Johnson (RWJ) Foundation grant award program. At about the same time, Jack Kevorkian – or Dr. Death as he came to be known – came on to the public scene. At a national conference, I was asked what I thought of Dr. Kevorkian, and I said without hesitating that I thought he was a murderer and should be imprisoned.

Envisioning Other Options
After the conference, a communication officer from the RWJ Foundation asked me if I knew the data regarding public views on physician-assisted suicide. I said that, of course, I did – 50% of Americans were for it and 50% were against it. She said, “You realize that when you made the statement you did that half the audience turned you off,” and then asked me if I could imagine saying something like, “Physician-assisted suicide is something good people disagree about, but what we can all agree upon is that we must do a better job of caring for those who are seriously ill and dying so that they don’t see suicide as their only option.”
That statement made good sense to me and has served me well over the years. To clarify my personal view, I always add that I am against the “legalization” of assisted suicide but would NEVER pass moral judgment on a caring committed physician or loving family member who assisted a patient or loved one to die. Furthermore, I know that it happens all over the United States every day. Years ago, an article titled “It’s Over Debbie” was published in JAMA (Journal of the American Medical Society) in which a resident anonymously reported having euthanized a young woman in agonal pain dying of a terminal gynecological cancer. I got four calls, two of them from healthcare professionals in Kansas City, telling me that the caller was sure the event had occurred in their own hospital. 
Personal Choice and the Slippery Slope
I have shared in private conversations, however, that in certain situations, I would personally choose to end my own life and expect others to help me to do so if I were incapable of acting on my own behalf. I recognize the logical inconsistency of my thoughts and have felt hypocritical from time to time. But because so many people in the U.S. are not insured and do not have access to healthcare, especially good end-of-life care, and because we know without question that certain populations, e.g., people of color and those in lower socio-economic situations, receive less care, worse care and have poorer outcomes, I have felt that legalizing physician-assisted suicide could potentially make these people even more vulnerable…that it was just too risky. Even though the data from Oregon, the first state in the U.S. to legalize physician-assisted suicide, has not proven that to be true, my fear has been the “slippery slope,” i.e., if we allow competent people to make this choice, are we then far from deciding the same should be true for those who cannot make decisions for themselves. I still do not believe that concern is unfounded.
The Netherlands, the first country to legalize euthanasia, now allows others to make decisions about ending the lives of those who are unable to be self-determining. Furthermore, years ago, I debated this issue with Derek Humphry, Founder of the Hemlock Society, and when I asked him if he would support euthanizing people who had never been able to express their wishes, he said something like “not now.”

No Safe Harbor
Bishop Tutu
Ironically, in the early 2000s, two nurses in upstate New York who published an online newspaper called The North Country Gazette, decided that I was the leader of the euthanasia movement in the U.S. For several months, they published a “front-page” article about euthanasia and included my name in the headline. I wasn’t aware of it until I began to receive letters from children asking me why I wanted to kill their grandmother and got a couple of calls from national organizations with whom the Center was working asking me to clarify our position on euthanasia. (I should point out that the Center does not now nor has it ever had an official position on euthanasia. Members of the Center’s board and staff are not of one mind about this issue, and I suspect never will be.)
After hand-printing a few letters to children saying that I was not sure why they thought I would ever want to harm their grandmother, we learned the source of the perception. I honestly will never know why I became the target of this series. I do know, however, that it was heart-breaking to me that for nearly two years, if you Googled “euthanasia,” my name was the first thing to pop-up. 
Neither my ambivalence (or lack of intellectual clarity) nor my efforts to claim the moral high ground – or even what I thought to be clever communication strategies – had provided me a safe harbor or a pass from this debate.

A Moral Right
Now on Tuesday night, Bishop Desmond Tutu, a person who for years I have considered a global moral leader and personal hero, spoke with conviction and confidence about euthanasia as a moral right, an entitlement. 

Ethics is not about black and white. In my experience, it is clearly about trying to deal with “shades of gray.” But, from a philosophical perspective, respect for human life is not negotiable and that has been a sticking point for me. Tuesday night Bishop Tutu said, “As a Christian, I believe in the sanctity of life and that death is a part of life. I hope that when the time comes I am treated with compassion and allowed to pass on to the next phase of life’s journey in the manner of my choice.” I do too. 



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Wednesday, January 4, 2017

The High Costs of Chasing Immortality

John G. Carney, MEd
John G. Carney, MEd, President and CEO of the Center, will present a free lecture on “The High Costs of Chasing Immortality” at the Center’s 2017 Bioethics Lecture Series on January 19, 2017, 4:30 to 5:30 pm CST, in person at the Kauffman Conference Center in Kansas City and on Facebook Live. To attend in person, please RSVP to cleyland@practicalbioethics.org.

Americans undoubtedly cherish the science of medicine, whether it be “moonshots” to cure fatal diseases, research to augment our genetic code, or the development of new “breakthrough” drugs for debilitating conditions.

But how good are we at separating the financial considerations and “return on investment” from the human factors involved in living with incurable diseases and chronic conditions? What is the actual cost – in terms of patients’ lives? What is the value of a day, a week, a month of additional life? Who gets to decide? Who pays? Does every life get valued the same? Should it?

This brief but thoughtful inquiry into the personal and societal questions that we face will attempt to narrow the lens of focus to the human considerations involved in prolonging life for those with life-limiting conditions.

-       How should individual responsibilities in managing care be measured?
-       If we are going to shift from a world that pays for services based on their availability to one that measures “success” in terms of outcomes – whose outcomes are we adopting? 

Patient-centered care is designed to give patients a voice – not only in deciding how important it is to pursue a critical path but in deciding what even the goals of care and treatment ought to be. In doing so, we open ourselves up to a whole new set of questions and a shift from the traditional paternalistic approach where “doctor knows best.”

The whys and wherefores of patient and proxy choices at the edge of life may just give us a peek into how valuing patients decisions could change the dialogue about outcomes and goals of care more generally.


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What we may find in exploring our mortal natures is a different kind of answer - or certainly a different set of questions that need to be answered rather than the elusive and costly pursuit of immortality.


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Thursday, September 1, 2016

PAINS Update

Myra Christopher

Raising Pain Awareness

Penney Cowan has lived with chronic pain for most of her life and is the Founder of the American Chronic Pain Association. Her advocacy work is peppered with the creation of innovative projects and programs. Perhaps, one of the most powerful of her ideas was establishing September as Pain Awareness Month in 2001.  This September will mark the fifteenth anniversary of Pain Awareness Month. That it has endured over time is remarkable given all the other causes that vie for public attention. However, in my opinion, it has never reached its potential. 
It was my privilege to be one of those involved in establishing a Kansas City Affiliate of the Susan G. Komen Race for the Cure®; yesterday marked the 20th anniversary of the Kansas City Race. Each year, thousands of breast cancer survivors, their friends, family and others walk and run to raise public awareness and resources to support multiple organizations in our community that advocate for those diagnosed with breast cancer. Yesterday nearly ten thousand people participated in the Race in Kansas City, and there are now Komen Races in more than 140 communities across the country. Chronic pain is worthy of at least as much public attention as is breast cancer, and I think I could make an argument that it is worthy of even more attention.

It is estimated that one in eight women in the U.S. will be diagnosed with breast cancer in their lifetime.  One in three Americans live with chronic pain. So, let’s learn from Race for the Cure and other successful public education campaigns and help Penney Cowan make her vision a reality. It may not happen this year, but we all need to do everything we can to leverage the groundwork that has been laid by ACPA and other pain advocacy organizations and make as much noise as possible in September about chronic pain as a disease, the need to fully implement the National Pain Strategy Report, and sharing stories of those who live with chronic pain and have persevered in spite of it.

Pain Awareness Month in Kansas City 

PAINS-KC is a group of about fifty “Citizen/Leaders” who have met with leaders of PAINS on a monthly basis for more than three years. This year, they have taken the lead in developing a plan for September as Pain Awareness Month in Kansas City. We want to share just a couple of things they are doing in hopes that you will consider doing something similar in September or whenever you can.
PAINS Update has mentioned Dr. David Nagel’s new book, Needless Suffering: How Society Fails Those with Chronic Pain. We are delighted that Dr. Nagel will be in Kansas City on September 15 to speak about his experience in caring for those who live with chronic pain and why he wrote Needless Suffering. With support from two local health systems, a local church, and a few individuals, all those who attend this event will receive a free copy of Dr. Nagel’s book. They will also have the opportunity to view the art installation pictured here which is the work of Jacquelyn Sullivan-Gould, Director of Galleries and Professor of Fine Art at Michigan State University. Mrs. Sullivan-Gould was injured in a car accident her freshman year of college and has lived with chronic pain since then.  The life-sized bronze sculpture shown here is a self-image. 
A breakfast will be held the following day for physicians who care for those with chronic pain to meet Dr. Nagel and to discuss the National Pain Strategy Report and the recently published CDC Guideline for Opioid Prescribing at the Kauffman Foundation. In addition, PAINS is hosting a luncheon with leaders of local foundations to learn more about local and national efforts to establish that chronic pain is a disease and to improve chronic pain care, including a shift from a biomedical, opioid-based approach to a comprehensive chronic pain care model. 
We are also delighted that the Kansas City Library System has agreed to participate in September as Pain Awareness Month. Various branches will have displays that provide educational materials and also a short recommended “reading list,” including: 
    The Pain Chronicles by Melanie Thernstrom
    A Nationin Pain by Judy Foreman
    ThePainful Truth by Lynn Webster
    NeedlessSuffering by David Nagel
    LifeDisrupted by Laurie Edwards
   InsideChronic Pain by Lous Heshusius

We are also in conversation with our local Sickle Cell Advocacy Group to talk about how they can get involved and what PAINS can do to support their efforts. 

Power of One

On my way in to work this morning, I thought about what I can do personally. (I’m a big believer in “the power of one.”)  I decided that throughout September, I will make noise. Periodically, I plan to send emails to my personal contact list with what I call chronic pain “factoids,” e.g.,:·  
  •  Chronic pain is a disease.
  • Acute pain that goes untreated over a period of time changes the nervous system and can become chronic pain.
  • At least 1:3 Americans live with chronic pain.
  • 17% of children between 4-18 experience frequent or severe headaches including migraine.
  • It is estimated that approximately 30 million Americans live with “high impact chronic pain.”
  • Chronic pain is a leading cause of disability in America.
  • Chronic pain costs the U.S. between $565-630 billion annually.
  • Chronic pain care does NOT equal opioid therapy.
  • Comprehensive pain care improves outcomes, allows people to reclaim their lives, and saves money.


I don’t do Facebook and I don’t know how to Tweet, but I bet you do. If so, join me in stirring it up, and let’s get started on planning for Pain Awareness Month in September 2017. 
                 
                 



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Tuesday, May 17, 2016

A Selfish Request for Honest Conversations

Rev. Shanna Steitz 
On Monday of this last week, I had to fill out a medical advance directive for my husband, Ryan. He was in the hospital at North Kansas City, and they needed a document on file. We have documents at home, but the form was easiest because it was in front of us and immediate. I had to smile when I read the form and saw the small print at the bottom: “This document is provided as a service by the Center for Practical Bioethics.“ I smiled because I was headed to the Center’s annual dinner the very next night.  

If you aren’t familiar with the Center, it is a nonprofit, free-standing and independent organization nationally recognized for its work in practicalbioethics. For more than 30 years, the Center has helped patients and their families, healthcare professionals, policymakers, and corporate leaders grapple with difficult issues in healthcare and research involving patients. I am so proud that several members of our congregation are involved with this important organization:  Myra Christopher is the former President and CEO and still on the staff, Dr. Sandra Stites serves on the Board of Directors, and Rev. George Flanagan is a Center Fellow and formerly on the staff. I saw several other members and friends of our congregation in attendance.  

When I got home from the dinner, my 12-year old son Jacob was up waiting for me. He wanted to know about the evening. We discussed the Center and what our friends there did. It was an interesting conversation...one we’ve had many times before, but it was especially unique given that his dad was spending a third night in the hospital. Ryan wasn’t dying, but Jake knows his parents’ wishes if we should. He has for years. I say this not to use our family as an example, but to remind you that it is my prayer that we will continue to be a congregation where we can be our most real selves. Where we can be truly authentic and have honest conversations. And where we can help one another to do and be that - Authentic. Real.

It is important that you have these honest conversations with your family members about what is important to you.  They can be hard talks, I know.  But it’s important for you and your family and it’s also important to me.  Because if you don’t have those exchanges now...I end up in the middle of those discussions with families later - during stress and crisis moments.  So, this is a selfish request (wink, smile).  It’s easier on me later if you do it now.  The Center has great resources to help begin those talks, and obviously we at Community have people who can help.

This is a first conversation for us around this... you and me.  I look forward to more of them.

May it be so. May it be so for us.

-- Rev. Shanna

P.S. My Ryan is fine. As I finish this on Friday, we are hopeful to go home tomorrow! 



Blog Editor’s Note


Rev. Shanna Steitz is the senior minister at Community Christian Church in Kansas City, Missouri. We welcome her contribution to our blog, which was originally published in the church’s May 8, 2016, newsletter under the title, “What I really want to say…”

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