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Author Archive: Practical Bioethics

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09/01/2016

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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05/17/2016

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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05/06/2016

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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04/28/2016

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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04/21/2016

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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03/18/2016

Cultural Expectation and Prenatal Risk – A Matter of Justice

Leslie Ann McNolty
I recently co-authored a peer commentary in the American Journal of Bioethics on gender and the unequal management of pre-natal risks. The argument we made in AJOB has particular relevance to two issues recently in the news.

Zika and the CDC

From public health campaigns to care at the bedside, our culture views women as primarily responsible for physical reproduction. If and when men are assigned any kind or degree of reproductive-related responsibility, it is usually secondary and indirect. Examples of the asymmetrical assignment of responsibility between women and men abound, including two recent stories making headlines. 

In response to the epidemic of the Zika virus which may cause microcephaly in some infants whose mothers are infected with the virus while pregnant, governments in several South American nations formally recommended that women avoid getting pregnant for up to two years. As a public health response, this approach is misguided and frankly disturbing for a number of reasons. First, it attributes all responsibility for managing reproduction to women despite the equal biological role men and women play in procreation. Second, it is starkly at odds with other culturally reinforced norms. Motherhood is the central route to social status for the poor women who have the highest risk of contracting Zika. Third, the countries making this recommendation have overwhelmingly Catholic populations. Catholic doctrine proscribes the use of birth control or abortion. (Though Pope Francis recently made remarks that suggest the presence of Zika may make birth control permissible.) I imagine the response of women in these countries is, “Thanks for the advice. Now how about some real help.”

Meanwhile, in the United States, the Centers for Disease Control (CDC) recently issued recommendations that young women avoid drinking unless they are on birth control to reduce the risk of fetal alcohol spectrum disorders. The thought process in making these recommendations is fairly straight-forward. Almost half of all pregnancies in the U.S. are unintended. Women who drink alcohol in the first few weeks of pregnancy (before they know they are pregnant) expose their fetuses to an increased risk of fetal alcohol spectrum disorders. So, doctors should discuss this risk with patients and recommend that women who drink use birth control.  But where are the recommendations that men avoid unintended pregnancy if they are having sex with a woman who drinks alcohol? Why do men have no responsibility to manage this risk to their potential children despite the fact that men have reliable means for reducing the risk of pregnancy available to them?


Gender, Culture and Moral Responsibility

The assignment of reproductive expectations along gender lines produces deeply gendered differences in moral responsibility. Women are always viewed as potential mothers and their moral responsibilities, in the above examples to avoid pregnancy altogether, are assigned accordingly. Men on the other hand are viewed as independent actors who are responsible only for themselves. As a result, the scope of women’s moral agency is expanded to include responsibilities to potential people. In contrast, the scope of men’s moral agency is much smaller, and, in certain cases, shrinks until it excludes even existing people (often women) who may be harmed by their actions. For example, the CDC’s guidelines for young women included an infographic (that has since been removed) that warned that drinking too much can lead to “injuries/violence,” implicitly suggesting that women are responsible for the violence they face largely at the hands of men.

It is clear, then, that gendered expectations produce and reinforce significantly unequal assignments of moral responsibility to reduce pre-conception and prenatal risks. The practical upshot of the additional moral responsibility that women carry for potential people produces cultural expectations that women will (usually, if not always) sacrifice their present personal interests to protect the future personal interests of their potential children. Men, on the other hand, are largely exempt from such expectations. 

What is socially constructed could be socially deconstructed or reformed, and since the practice of conceiving, bearing, and rearing children is a socially valuable (indeed, vital) practice, the assignment of reproductive-related moral responsibility should be seen as a matter of justice that demands that we evaluate the distribution of the benefits and burdens of sustaining that practice. While men and women largely share the benefits of reproduction and rearing children, the burdens are disproportionately borne by women. These burdens include the (uniquely) expanded scope of moral responsibility that women are assigned for the well being of potential persons, as well as a restricted sphere of autonomy owing to the lower threshold for justifying clinician/state intervention with their decisions. Ideally, the critique offered in here can contribute to the reform of our reproductive-related social practices so that any unequal physical burden of pregnancy necessitated by biology does not also entail unjust violations of women’s bodily integrity or autonomy.

Leslie Ann McNolty is a program associate at the Center for Practical Bioethics.



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02/15/2016

Death with Dignity?

Tarris Rosell, PhD, DMin


What Kansans Need to Consider about House Bill No. 2150

(“The Kansas Death with Dignity Act”)

How would you answer the following question if a Gallup pollster asked?

When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?

As of mid-2015, nearly 7 out of 10 Americans polled answered that question, “Yes,” including 48% of those who attend church weekly. The vast majority of Americans, and 81% of young adults ages 18-34, currently favor physician-assisted suicide (PAS). Are they right? Could that large a majority possibly be mistaken?

Kansas legislators, like those in most states, have had opportunity to consider making PAS legal. It is already legal, with restrictions and regulations, in several other states, most notably Oregon, Montana, Vermont and Washington, and as of this year California. The addition of California now makes the question relevant to 1 in 10 of all Americans. The 1994 Oregon “Death with Dignity Act” served as the model in California, and also for Kansas House Bill No. 2150, introduced last year. No hearing was held.

Governor Jerry Brown, a Catholic Christian, recently signed that CA legislation after much thought. Kansas Governor Brownback, also a Catholic, seems unlikely to sign such a bill even if it were to get out of committee and garner enough support to get through both chambers of the Kansas legislature. Is this good public policy? Or are we wrong-headed in the Heartland?

One of the influences credited with raising Gallup percentages especially among young people was the physician-aided death of 29-year old Brittany Maynard.

Brittany was living in California when diagnosed with glioblastoma multiforme, an aggressive form of terminal brain cancer. After much research and discussion, Brittany decided to move with her husband and mother to Oregon so as to qualify for that state's "death with dignity" protocol. After establishing residency and meeting with physicians, Brittany received her lethal prescription of drugs, to be used or not at the recipient's will. If taken as a means to end life, Oregon law specifies that the drugs would need to be taken by Brittany's own hand. No one could do it for her.



Upon experiencing multiple seizures and cancer-related pain, Ms. Maynard decided to take a lethal dose of medications prescribed for this purpose, and thereby end her life on November 1, 2014. Close family and friends accompanied her at the time of departure. It was said to have been a peaceful death. Was it a "death with dignity?"

In a dialogue group I attend monthly, involving mostly physicians and chaplains, the Brittany Maynard case was discussed after viewing a six-minute YouTube video posted by Brittany prior to her death. I have facilitated discussion of this case with groups of seminarians and medical students, also. Each time, I poll the participants on their opinion of PAS. Regardless of the group, percentages mirror those of Gallup. So should the majority rule in Kansas on this matter?

A hospice physician friend suggested that Brittany Maynard might have utilized palliative care in hospice. He acknowledged that this could not guarantee a death without pain and suffering, but that hospice care places value on a dying patient’s dignity. Indeed, most surely do, and most hospice deaths seem relatively peaceful. This is what I, and most bioethicists I know, advocate rather than expanding access to PAS. It may well be that the American majority has been misled, and that the better way to achieve death with dignity is to promote palliative and hospice care—especially for those groups who don’t have access to comprehensive care. But really, for all of us.

Brittany and at least 859 other terminally ill patients in Oregon over the course of the last 15 years or so, have chosen a different route to their deaths. Even in Oregon this remains a remote event, affecting only about 3 deaths in 1,000. I don’t condemn them nor their assisting physicians. Condemnation gets us nowhere good. I urge thoughtful and respectful ethics dialogue instead.

I advocate for better advance care planning, earlier end-of-life conversations between patients and their physicians, and more robust discussions about goals of care in advance of health crises. Increased public funding seems necessary so as to train more palliative care and hospice physicians. More research, and research funding, is needed for rigorous evaluation of the care currently being provided to dying patients.

This seems to me the better path to death with dignity, not only in the Heartland but everywhere.

How does it seem to you?


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

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02/13/2016

Never Too Young to Plan Beyond

Laura Troyani
Founding a company that encourages informed end-of-life decision-making and conversations, while certainly not unique, is uncommon. Founding it as a relatively healthy 30-something without a medical background may put me in the category of not only uncommon but unusual.  

And yet, given my conversations with professionals who deal with late-in-life and end-of-life issues, I was inspired to do so. Those conversations led me to create PlanBeyond, a new online site that helps older adults and caregivers get better educated about end-of-life medical, legal, and financial issues.

In speaking with a diverse group of professionals – from palliative care doctors, hospice care nurses to estate liquidators, estate planning lawyers and even funeral directors – I was surprised that my conversations really coalesced around one core issue: Many of the burdens they see with family members could be significantly lightened if people were just a little more proactive about exploring their final wishes and did a better job of communicating them.

Sad But Not Unusual   


Consider the story that a nurse from Illinois, Anne, shared with me. A father of two was in the intensive care unit for weeks after suffering a severe stroke. His prognosis was poor, but his wife had no idea if she should keep his feeding tube in or when to consider withdrawing it. Because they were both relatively young, neither had spoken to the other about this possibility nor had either of them completed a living will. And so here she was, a mother of two young children, relatively young herself, having to face one of the most important decisions in this man’s life…without any guidance. 

Or, consider the story of a funeral director from Georgia, John, who recounted a story of a widow planning the burial of her husband of over fifty years. She was desperate to keep costs as low as possible. Neither she nor her family had the resources to cover the cost of a standard funeral with burial. And yet, she wanted to do right by her husband. She was torn and guilt-stricken by the two options presented – cremation at a lower cost or borrowing to pay for a more expensive conventional burial. What would her deceased husband want?  The widow had never spoken with her husband about his wishes, so it was up to her to make this very personal and very difficult decision. 

Inspired to Help


I wish I could say these stories are rare, but I am discovering they aren’t. In my brief experience in this new venture I am having confirmed over and over again how important it is to explore and share a whole host of issues. With just a little research, planning and open communication about our final wishes, we can change what are often heart-wrenching decisions into ones that we accept and are at peace with. 

It’s why I was inspired to found a company that’s all about this issue, and why I encourage anyone I speak with to think just a little bit about their final weeks of life and what they really want done with them. 



Blog Editor’s Note:
Writer Laura Troyani is the founder and editor of PlanBeyond, an online site for getting common legal, financial, health and end-of-life planning issues in order and stored in one place. An increasing number of groups, many started by younger people, share Laura’s passion. Examples include My Directives and Annie Presley and Christy Howard’s new book, Read This…When I’m Dead


The Center welcomes Ms. Troyani’s contribution to the Center’s blog, emphasizing the importance of making wishes known before a crisis occurs; however, publication of her article should not be interpreted as the Center’s endorsement of PlanBeyond site contents. For recommended documents to make your healthcare wishes known, the Center encourages readers to download free copies of Caring Conversations from the Center’s website

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02/01/2016

TOUGH CASES: Code of Ethics Now Available for Healthcare Ethics Consultants

Tarris Rosell, PhD, DMin    
Consider the following hypothetical case scenarios:

Case #1

Jessica, APN, is a member of the Hospital Ethics Committee and serves also on the HEC’s ethics consultation team. Each week, one of eight volunteer consultants takes first call on the dedicated Ethics pager. Two other team members serve as back up to the on-call ethics consultant. 

One day, a consult request is forwarded to the Ethics pager, which Jessica is carrying. It involves a patient on the Medical ICU where Jessica is also a nurse manager. She knows the patient and family, and is all too aware of their conflicted situation with hospital staff regarding goals of care. Jessica also supervises the nursing staff, which rotates care duties on Patient Joe so as not to get too burned out, given his dementia-related raging and flailing. As Jessica reads the ethics consult order, she feels conflicted about her multiple roles in this challenging situation. She wants to be of assistance for ethics, but isn’t certain that she can do so without confusion about what “hat” she’s wearing up on the unit.

What ought Jessica to do, and how would she know?

Case #2

Jonathan, PhD, is taking first call on the Ethics pager this week. One of three consult requests received involves a very messy situation involving a difficult discharge. The 56 -year old female patient, Helen, is homeless and had come to the emergency department weeks earlier in a police cruiser.

At the point when she becomes medically stable, a dilemma is encountered. How could we safely discharge this patient back to the street where she insists on going “if,” as she says, “you won’t let me stay here?” It’s cold outside, and Helen is barely ambulatory, with some signs of dementia. Follow-up self-care would require daily insulin injections and finger sticks for glucose monitoring. While the patient claims ability to do so, the attending isn’t convinced. 

Ethics is consulted, and Jonathan convenes a multi-disciplinary care meeting, including the patient. Consensus eventually is reached on a discharge plan. Helen agrees to go to a homeless shelter with a clinic. 

However, after leaving the hospital, the cab driver lets her off at a downtown intersection instead, as directed by his rider. It is a blustery and frigid winter day. Helen is wearing the thin autumn coat and sandals she had been wearing upon admission. A newspaper journalist happens to stop at the intersection where Helen stands shivering, and notes her hospital bracelet. He rolls down the window and asks if Helen is okay. She mutters that City Hospital left her off here to die. The journalist calls 911, and then makes a call to the hospital operator asking to speak with someone in Ethics. 

When Jonathan receives this page and phone call, what should he say, or not say, to the journalist, and how would he know?

Code of Ethics 

Ethics consultation, like any other professional practice in healthcare, requires professionalism of the consultant. Ethics consultants can either help or hurt those who request assistance. Sometimes even life and death hang in the balance, especially when it is unclear as to which of those two options would be the worse outcome for a critically ill patient. Always there is confidential information to be handled with care and in compliance with HIPAA rules. 

Ethics professionalism matters.

Until recently, healthcare ethics consultants familiarized themselves with the codes of ethics pertaining to other professions, but had none of their own. Jessica and Jonathan might have discerned successfully what they ought to do about their professional ethics dilemmas in the scenarios described. Now their decisions may also be guided by a code of ethics and responsibilities drafted specifically for healthcare ethics consultants.

The American Society for Bioethics and Humanities has posted A Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants as a downloadable document at http://asbh.org/publications/books. The document lists seven ethical responsibilities for healthcare ethics consultation (HCEC):

1. Be competent.
2. Preserve integrity.
3. Manage conflicts of interest and obligation.
4. Respect privacy and maintain confidentiality.
5. Contribute to the field.
6. Communicate responsibly.
7. Promote just healthcare within HCEC.

Each of these responsibilities is explained in the ASBH document, with illustrative examples provided. 

Applying the Code

In Jessica’s case, she might recuse herself from ethics consultation on grounds of #3, the need to manage conflicts of interest and obligation. One of her back-up consultant colleagues can be called upon to respond instead. 

Jonathan would be guided in his own ethics dilemma by responsibilities #4 and #6 especially, and possibly #7. The probably well-intended journalist may benefit from clarification of the situation with Helen; but any communications with him must be done responsibly, perhaps by a designated hospital spokesperson, and with HIPAA-protected privacy ensured both for the patient and her healthcare providers.

Center for Practical Bioethics personnel contributed to the development and publishing of the ASBH Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants. It is currently being utilized in hospitals in Kansas City and elsewhere for professional performance improvement toward the goal of excellence in ethics consultation.


Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics. He also serves as Co-Chair of the Hospital Ethics Committee and Director of the Ethics Consultation Team at the University of Kansas Hospital.

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01/26/2016

New Program Will Bring Advance Care Planning to African-American Faith Communities

Richard Payne, MD

Participating Congregations in Atlanta, Chicago, Dallas, Houston, Kansas City, Philadelphia and West Palm Beach 


African Americans die at excessive levels from chronic disease1 yet use only eight percent of hospice services nationally.2 Advance care planning – the process of communicating with a healthcare agent about the care they would want if unable to speak for themselves – and increased use of hospice services could greatly improve quality of life for one of the most vulnerable populations in America, elderly African Americans. 

A new project funded by the John and Wauna Harman Foundation and others will enable the Center for Practical Bioethics to implement a two-year program working with African American faith communities and community collaborators (i.e., hospices) in four cities to increase advance care planning and use of hospice services. Cities include Atlanta, Chicago, Dallas,  Kansas City, Philadelphia, and West Palm Beach.

The rationale for the program is rooted in American history and culture. Many African Americans distrust our healthcare system – which once practiced segregation, involuntary sterilization and unethical research practices – and are understandably reluctant to engage in a process that they perceive could put them at greater risk of being underserved. African Americans are also markedly more religious than the U.S. population and more reliant on faith leaders to help them make healthcare decisions. 

The project, launched on December 1, 2015, includes four phases:

Phase I – Congregations in targeted cities will recruit two-to-three Advance Care Planning (ACP) Ambassadors to commit to a six-month advance care planning program. Project faculty and staff from the Center for Practical Bioethics and partners will hold a four-hour training session for ACP Ambassadors at the Samuel Dewitt Proctor Leadership and Lay Conference in Houston on February 15-18, 2016.

Phase II – ACP Ambassadors will design and implement a project to facilitate and complete advance care planning documents in their congregations. Faculty and staff will provide coaching and advice on how to teach their congregants about advance care planning, encourage them to discuss their end-of-life care with their loved ones, and assist them in completing advance care planning documents.

Phase III – Faculty and staff will work with ACP Ambassadors and their community collaborators to organize a one-day Crossing Over Jordan Conference in November 2016, where  the Ambassadors will share their project design and outcomes with the community. 

Phase IV – This phase consists primarily of post-project tracking. Faculty and staff will develop and conduct ongoing surveys of participating congregations for one year following the conclusion of local advance care planning projects to track the project’s impact.

For more information about the project, please contact Leslie McNolty, Program Associate, lmcnolty@practicalbioethics.org or 816-979-1394.





2 National Hospice and Palliative Care Organization’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5.


Richard Payne, MD, is 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.

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