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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Friday, May 6, 2016

Mothers’ Luscious Webs of Love - in Life and Death

John Carney
A Message for James IV

A 14-year old young man received the best Mother’s Day gift anyone could imagine this week. In the precious entanglements of family, this bright and budding gentleman heard his father pay tribute to a visionary woman, the boy’s grandmother, in a deeply touching display of affection before a crowded room. And how did that happen? All because the boy’s mother read a book about another son who shared stories with his mother in the final days of her life. Those conversations became the substance of a book, and the web of mothers’ love for their sons and sons for mothers took over.

The End of Your Life Book Club

Let me explain. On Tuesday, May 3, the Center for Practical Bioethics held its annual dinner.  Will Schwalbe, an author and editor, was invited to speak about his book, The End of Your Life Book Club. That’s the story about the son who shared intimate reflections with his mom during the final months of her life, inspired by the books they read together. They were both book lovers and their conversations about the meaning of those books deepened their love for each other and his depth of appreciation of her life. As they explored life in discussing the books, Will’s understanding of his mom’s courage and conviction about all sorts of things grew, expanding his appreciation for the causes she held dear and the virtues that guided her life. 

But the Mother’s Day gift that I’m focusing on is not the one Will exchanged with his mom in live conversation, but the one he gave all of us in writing the book. Here’s why.  At that same event, a young mother was seated near her son. He was attending only because his mother had read Will’s book. While reading it, she became convinced that her child needed to accompany her and her husband to the event because his father was going to be paying tribute to his grandmother during the evening. The mother of this young lad, in the reading of Will’s book, knew the importance of conversations that discussions about virtuous things and tributes can generate. And even if they don’t foment lots of talk from shy but handsome young men with braces, they can certainly imbue lasting memories for them.

You Listen!

When a tall, middle-aged man who happens to be your dad stands on a dais in front of 600 people saying tender things about his mother, midst tears and halting reflections interspersed with thoughtful composure mustering pauses, you listen! As a young man, you listen so you can ingest, long after the Andre’s chocolates dessert, the meaning of conviction, the importance of virtue, the purpose of family and the beliefs that drive hard work, unselfish philanthropy, thrift and generosity of spirit. You listen to your dad because your mom says it’s important, and you know that hearing him talk in front of a mass of people about his mom is important stuff, and because he is really talking to you as if there were no one else in the room. It’s that important.

I doubt seriously that Will Schwalbe ever imagined that his book about writings and conversations with his mother would create such a luscious web of Mother’s Day entanglement, but I’m glad it did. And I would venture to guess that his deceased mother’s spirit revels in it. Being part of it on Tuesday night gave tender affirmation to the work the Center -- our work in promoting intimate conversations about love and life and dying and saying “goodbye” and “I love you” and “remember this.”

Tell Them You Love Them

So this Mother’s Day, James, IV, tell your mother you love her and tell her thank you. And remember what your dad said about his mother and what courage and character it took to say it; not in front of 600 people, but in front of you. And tell him that you are proud of him. That’s another important lesson from Will’s book. Telling someone you are proud of him is as important as telling that person you love him  

I’ll be doing the same to my mom. I may get choked up, but hey, I saw a guy do that on Tuesday and he lived to tell about. Remember this...no matter how tongue tied you get, your mom will still love you, and she’s just as likely to tell you that she’s proud of you too.

Thank you, Will, and thank you, Mary Anne, for the book. Thank you, Michele, for sharing it with your family in a way that its reach spreads the luscious web of Mother’s Day gifts to all of us. And thank you, James IV and Virginia, for the reminder that people who are often larger than life are still sons and mothers in the intricate and intimate expressions of family life.

John G. Carney is the president and CEO of the Center for Practical Bioethics.


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Thursday, April 28, 2016

This Is How Prince’s Death Begins Conversation About Addiction

Myra Christopher
INTRODUCTORY NOTE FROM MYRA CHRISTOPHER
Lynn Webster, author of the blog below, is a member of Pain Action Alliance to Implement a National Strategy (PAINS) Steering Committee. He is also one of the most authoritative and committed experts in the United States working on both pain and addition. PAINS has been benefitted tremendously from his involvement in our efforts to “transform the way pain is perceived, judged and treated.” 
Over the last couple of years, PAINS has come to understand the importance of embracing the need for dramatic change in the way two diseases – chronic pain and substance abuse disorders, especially opioid addiction -- are addressed, and that by advocates focused on both working together, we are far more likely to improve the health and well-being of all Americans.  
Although relationship the between these two public issues is not yet clearly understood, there is without question a correlation between the two. Unfortunately, these two patient populations have often been pitted against one another by the media and fear-mongers for personal or political advantage. PAINS has attempted to reach out to those focused on opioid addiction and to neutralize some of the ill-will between those focused on pain and those focused on addiction.  
These efforts are  gaining some traction with people of goodwill – no matter their primary locus of concern; PAINS is committed to this work because we are confident that there are shared values and common ground upon which we can collaborate.
We are grateful to Dr. Webster for allowing us to post a blog he wrote shortly after the sudden death of one of America’s great artists, Prince. We believe it  makes a compelling case for what PAINS is trying to do. 

The Conversation Is About Compassion and Addiction


Lynn Webster, MD
When I published my recent blog, Prince and Why We Need More Compassion About Addiction, I began by saying that we didn’t yet know why Prince died. The facts weren’t in, and I didn’t want to draw conclusions until I had more information.
I still don’t have all the facts about the circumstances surrounding Prince’s death. I wasn’t Prince’s physician during his lifetime, and I had no opportunity to look at his medical records either before, or after, his death.
All I know about Prince’s death is what you know. Some entertainment media outlets (TMZVariety, and more) initially reported that Prince was treated with naloxone, which is the antidote for opioids including heroin, in the days before his death. An autopsy (in which I had no participation) was conducted on Prince’s remains, and according to CNN, it could be weeks before we know why the beloved musical icon is no longer with us.
Several of my colleagues and friends posted a link to my blog on their social networks, and they told me they were surprised to see that some of their supporters had reacted swiftly and furiously. For example, Jan Favero Chambers, President/Founder of the National Fibromyalgia & Chronic Pain Association, was gracious enough to post a link to my blog on her Facebook page.
Among the negative comments she shared with me was this one:
“Jumping the gun a bit. We don’t know the cause of death. Respect his memory, by not posting this.”
If you look at the comments below my original blog, you’ll find someone raised an objection there, too:
“Why are you using Prince to draw people into this article? Do you know his medical history? Have the autopsy results come back? Please school me on your knowledge,” reads the comment.

Empathize, Don’t Blame, People in Pain or With Addiction

As I said in my response to that comment, part of my life’s work is to teach people to empathize with, and not blame, people in pain or with addiction. The untimely death of a beloved musical icon provides an opportunity to test our ability to demonstrate compassion. That is why I blogged about it.
I blogged about the death of Prince not because I jumped to conclusions about how he died. As I wrote then, I didn’t know any more about the cause, or causes, of his death than anyone else who hadn’t treated him or viewed his medical records.
But what I did know is that we, as members of society, had experienced a communal loss. While that’s tragic and sad, it provides us with one benefit: an opportunity to compassionately discuss the difficult topic of addiction and related issues.
Since TMZ, Variety, and other entertainment media had linked Prince’s death with naloxone, which is the antidote for opioids including heroin, I believed (and I still believe) that it was a good time to discuss addiction.

Addiction Is a Disease, Not a Character Flaw

Addiction is a disease, and yet it frequently elicits anger and judgment rather sympathy and support. This is true for everyone, famous or not, with addiction.
I don’t know whether Prince was one of the people with addiction. But what I do know is that, as an addiction specialist, I treated thousands of people with addiction over the years. My professional background qualifies me to make the observation that it’s wrong to deny compassion to the people in various stages of the disease of addiction.
When we blame people with addictions for the choices that led to their addictions, we overlook the fact that addiction is a complex problem. Because there are so many factors involved in addiction, it’s inaccurate and unfair to point a finger at an individual and say, “This disease is your fault.”
It is true that we all own some agency for our decisions, but once the disease of addiction is firmly rooted, the power to choose is stolen by the brain.
My concern was that, if the medical evidence supported the conclusion that Prince died of addiction, the outpouring of devotion that his memory had inspired would turn to rage against him. That, in my opinion, would be a shame, because the people we care about — whether they are family members, friends, colleagues, or celebrities whom we’re unlikely to meet in person — are as worthy of our love in their sickness as they are when they enjoy their full health.
To me, the death of Prince represents an opportunity to begin a discussion about why we negatively judge anyone who is sick. It provides us all with an opportunity to open up our hearts and listen to people in pain and with addiction.
And, most of all, it gives us a chance to feel compassion toward all people, sick or healthy, famous or anonymous, rich or destitute, gifted performer or shy wallflower, and friend or stranger. We’re all members of the same tribe, the human race, and we’re all entitled to love and understanding during every stage of our lives — whether we make good choices or bad choices, and whether we enjoy the happiness of success and health or the difficulties of sickness and even death.

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Thursday, April 21, 2016

New Reasons for Outrage Over Persistence of Healthcare Disparities: Ignorance and Neglect

Richard Payne, MD
Race and socio-economic status are regrettably important factors in determining life expectancy. There has been a persistent gap in mortality between whites and blacks for many decades, with one study showing that blacks suffer approximately 800,000 “excessive deaths” over a 10-year period relative to whites. More recently, studies have demonstrated that the wealthiest Americans live more than 8 years longer than less wealthy Americans and, tragically, color is still a marker for poverty in our country.

Although various studies indicate that lower socio-economic status is the most powerful determinant of health, there have been a plethora of studies over the past two decades showing that there are disparities in access and outcomes of care between whites and communities of color, especially black and brown. Tellingly, these disparities even occur in the Medicare system, where there is a presumption of equal access. 
In 2002, The Institute of Medicine issued a report, “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care” (http://www.nationalacademies.org/hmd/Reports/2002/Unequal-Treatment-Confronting-Racial-and-Ethnic-Disparities-in-Health-Care.aspx). The report described basic factors that support the persistence of racially-based healthcare disparities: differences in patient preferences, unfair and inequitable operations of the healthcare system, and frank racism and discrimination.

Black and White Pain


Now, a recent spate of articles adds THREE more factors responsible for persistence of healthcare disparities: ignorance, neglect, and lack of conviction to change the status quo. Earlier this month the National Academy of Sciences published the results of a University of Virginia study in which 222 white medical students and residents were asked to rate on a scale of zero to 10 pain levels they would associate with two mock pain cases – for both a white and black patient. It was not surprising that the students rated pain lower for black patients than whites and chose less aggressive treatment options for people of color, because disparities in pain assessment and treatment have been reported for decades. The students were simply reflecting this unfortunate reality. 
More disturbing were the reasons underlying the students’ choices. For example, 8% and 14% of first- and second-year medical students, respectively, endorsed the belief that “blacks’ nerve endings are less sensitive than whites’” and 29% of first-year and 17% of second-year medical students endorsed the belief that “black people’s blood coagulates more quickly than whites’.” On average, about 50% of participants reported that at least one of the false belief items as probably or definitely true.  
These and other responses reflect frankly racist myths and misconceptions and conform to stereotypes that many of us had hoped were long ago vanquished. Of great importance, the study also found that “racial bias in pain perception is associated with racial bias in pain treatment recommendations.” 

Explaining the Bias


Myra Christopher
This level of biological ignorance among medical personnel is, as the authors of the study said, “highly surprising.” We would add that it is unacceptable and outrageous. But how does one explain this level of ignorance in otherwise highly intelligent and educated medical students? One can only assume that these data would be similar in other medical schools, although this needs further study. One can speculate that some of this ignorance is related to implicit racially-based biases (which by definition operate at a subconscious level) that all persons exhibit, even doctors. 
There are likely many reasons other than poor medical school pedagogy for this ignorance. According to 2013-2016 American Association of Medical College Statistics, only 7.8% of applicants to U.S. medical schools are African-Americans (compared to 48% whites and 19.3% Asian). Although we do not have data on the racial demographics of the University of Virginia medical school class, one can only wonder if racial and socio-economic factors among the respondents in the study were such that they had little exposure to blacks. This would not be surprising. Many commentators have reported that one of the reasons for persistence of the racial divide in the U.S. is that we are, as the award-winning author David Shipler described in the title of his book, A Country of Strangers. The relatively affluent and privileged applicants that apply to medical school and eventually become doctors likely grow up with little exposure to African-Americans.

Bioethics Response?

It is important to see how we in the bioethics community respond to the University of Virginia and similar studies. Recently, a spate of articles criticizing the relative lack of commentary and activity related to the negative effects of racism in medicine have appeared in the bioethics literature. The April issue of the American Journal of Bioethics focused on this problem. Pointing to a paucity of articles and analysis of the impact of racism on the persistence of health disparities, and the failure of bioethicists to address this issues over time, John Hoberman claims in a recent Hastings Report article that the field of bioethics has a “race problem” and that the “ moral imagination in bioethics has largely failed African-Americans.” The neglect of targeting the obvious injustice of persistence of racially-based health disparities by the sharp analytical and philosophical minds in bioethics is an outrage and must be remedied.

All of us who analyze or deliver healthcare or who create policy to regulate and administer it are obligated to respond to injustice. Not to do so is an outrage. Thomas Jefferson once said: “Do you want to know who you are? Don’t ask. Act! Action will delineate and define you.” These are wise words indeed. Put another way, the persistence of inaction will condemn us as moral failures.

Richard Payne, MD, holds the 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.

Myra Christopher
holds the Kathleen B. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics.


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