|By Kathy Greenlee, JD|
Author Archive: Practical Bioethics
I recently learned the Irish superstition that you should exit by the same door through which you entered. The Affordable Care Act will most likely not have that option. The door it entered is closed.
I also recently revisited the unusual circumstances that allowed the ACA to become law. In early 2010, the Democrats held a 60-vote majority in the United States Senate. Then, in August, Massachusetts Senator Ted Kennedy died. In the election for his successor, Massachusetts elected Scott Brown, a Republican. Between the November election and Scott Brown’s swearing in, the Senate approved the ACA. When Senator Brown took office, the Democrats lost their super majority. The House had already passed the law, so they quickly moved to pass the Senate bill.
Having 60 votes in the United States Senate is a big deal. The Senate rules are such that the chamber requires a supermajority – 60 votes – to cut off debate and take a bill to the floor for vote.
Law, Regulations and Money
The ACA is anchored by three things: the law, regulations and money. Currently, the Republicans have a majority but not a supermajority. They don’t have 60 votes to pull the law off the books. They do, however, have enough votes to control the money. The ACA will be made ineffective and inoperable because the funds needed to make the law work will be removed. Money supports the subsidies for qualified people who purchase insurance through the exchanges. Federal money is used to match state money for Medicaid expansion and long term care rebalancing incentives (incentives for states to purchase community rather than institutional services for long term care). It takes money to close the Medicare prescription drug plan donut hole.
The first and most active battles in Congress will focus on money. And that battle has begun. The current 2017 federal fiscal year began on October 1, 2016. But, Congress has not passed a budget for this current year. Congress intends to use the current budget to gut the provisions of the ACA that are budget related. Then, immediately thereafter, the Trump administration will present Congress with a proposed 2018 budget and Congress will begin to work that budget this summer. The ACA will likely remain on the books, but won’t be operable as a comprehensive law. The non-budgetary sections will remain but will be largely inert.
While Congress assures the money dries up, the Trump Administration can begin the process of rolling back the thousands of pages of regulations that support the implementation of the law. Repealing regulations is time and labor intensive. ACA regulation repeal will be a steady slog likely to drag on through most of 2017 and into 2018. Regulations are behemoths.
Democratic Allies Needed
As you watch events unfold, keep in mind the three anchors I mentioned earlier: the money, the regulations and the law. The Republicans in Congress and in the White House will drive the budget and the regulations. They won’t need Democratic support to do so. But, to pull the remnants of the law and to pass a new law, Senate Republicans will need to find Democratic allies to help them get the 60 votes they need to cut off debate and pass legislation. The Democrats had 60 votes when the ACA passed; the Republicans currently do not. The 60-vote door will have to be unlocked in order to make new law.
Next up: Let’s talk in more detail about an ACA budget hot topic: Medicaid.
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.
|Written By Myra Christopher|
My mom was a steel magnolia (i.e., southern and perfectly charming), but she had a steel rod up her back. After her first surgery for stomach cancer at age 53, she refused pain medication because she said that she “could take it.” She was young and strong and committed to “beating cancer.” After nearly two years of chemotherapy, radiation and two more surgeries, the cancer won. Eventually, I watched her beg nurses to give her “a shot” minutes before another was scheduled and be told they were sorry but she would have to wait. I could tell by the expressions on their faces they truly were sorry.
Calls of Desperation
When the Center for Practical Bioethics began more than 30 years ago, I frequently had calls and letters from other family members telling me that an elderly loved one was dying in terrible pain and that the care team refused to give pain medication more often than scheduled or to increase the dose because they were told their loved one might become addicted and/or because a higher dose of morphine might affect the patient’s respiration and hasten death.
· ICU nurses regularly reported calling physicians and pleading for orders to increase pain medication only to be told, “Absolutely no and do not call again!”
· Physicians told me about patients who refused medication and suffered unnecessarily because they believed their pain was punishment from God and that their pain was “redemptive.”
· A case I will never forget involved a father who coaxed his son dying of bone cancer to “be a man” and refuse the pain meds his doctor had prescribed. The father, who adored his child and was deeply grieving his impending death, told me, “At least he will never be a junkie.”
· In one study of nursing home residents with cancer pain, nearly a third reported receiving nothing for their pain – not even Tylenol.
Progress and Problems
Efforts to address the under-treatment of pain in the United States led to more abundant prescribing of opioids and reduced suffering. At the same time, the rate of addiction rose dramatically, particularly addiction to pain medications, specifically opioids. Thousands of unintended deaths associated with these powerful drugs led to a well-organized national campaign to reduce their being prescribed.
Let me be clear, in some cases opioids have been prescribed too freely and physicians need much more training about when and how to prescribe them. I cringe when I hear about the dentist who prescribed a 30-day supply of OxyContin for a teenager who had her wisdom teeth extracted. My heart breaks when I hear about the young man who died of an opioid overdose a year after being given a prescription for pain meds after spraining his ankle in a football game and the young mother who was given Percocet after a caesarian birth, used them to help with the stress of a new baby and became addicted to them. These are tragic situations.
The opioid epidemic is a wicked problem, and it must be addressed. However, I believe that current efforts that focus almost exclusively on reducing opioid prescribing do not address the complexity of this problem and will have serious unintended consequences for those who struggle to live with chronic pain and even, possibly, those who are dying. Those were the concerns that caused me to speak out against the CDC Guideline for Opioid Prescribing for Chronic Pain published last year, which is, in my opinion, primarily an attempt to contain the opioid epidemic – NOT an effort to improve chronic pain care.
In recent months, stories have begun to emerge from people who live with chronic pain being told that their physician will no longer prescribe opioids or that their pharmacy didn’t have an adequate supply of opioids to fill their prescription. Last week, two things happened that caused me to write this blog.
First, Judith Paice, PhD, RN, and Director of the Cancer Pain Program at the Feinberg School of Medicine at Northwestern University, wrote the following email to me which I share with her permission:
This has been a horrible month for trying to manage pain. January is always “prior authorization” month, meaning I have to call and fight the insurance companies to get medications approved – working in oncology has always provided a slight advantage in that with some extra documentation, peer-to-peer review and conversations with medical directors, I could usually get the medication approved. Not this year. I could not get a patient with mouth sores and metastatic breast cancer a fentanyl patch. And an HIV+ hemophiliac who has been on OxyContin for 8 or 9 years was denied access despite receiving good relief without any aberrant behavior. Even long-acting morphine is being denied. And I have PCPs calling me to prescribe opioids for their patients “because the CDC guidelines prohibit them from doing so” (not true, but they are frightened).
Thank you and all on this email for all you do. We simply cannot return to our previous practice of withholding opioids except for the dying.
Second, I received a call from Jonathan, one of our PAINS Project Citizen/Leaders, a group of 50 people who live with or care for a family member who lives with chronic pain. Jonathan called to tell me that his insurance provider had refused payment for his pain meds which cost $3,500 per month.
Jonathan is one among many in his family who was born with HbS beta thalassemia, a rare form of Sickle Cell Disease (SCD). He is in his mid-to late forties and very close to his family, which owns and operates a home remodeling business. Currently, there are four generations in his family living with SCD, and Jonathan appears to me to be the patriarch of his clan. He is a tall, thin, handsome young man who is readily memorable for his boyish smile, the mischief in his big brown eyes, and his commitment to helping others. He limps; most often he wears a boot on his right foot, and sometimes he needs to walk with a cane. The cold weather exacerbates his pain, and his limp is worse in the winter months. He describes the pain in his joints like a “giant toothache” in whichever joint (or joints) is affected by platelets taking their revenge.
Access to and reimbursement for Jonathan’s pain medications will NOT solve his problems associated with Sickle Cell Disease. That requires a comprehensive chronic disease management program, including integrative pain care that includes opioids. Like most chronic pain sufferers, Jonathan’s situation is complex. It cannot be resolved with just an opioid prescription, but the meds help him to function.
A Wicked Problem
Simple solutions will not solve the opioid epidemic or the under-treatment of pain – two critically important public health issues confronting our country. Both are wicked issues.
In 2007, the Australian Public Service (APS) published a report on addressing “wicked” social policy issues. In a letter at the beginning of the report, then APS Commissioner Lynelle Briggs wrote,
“The Australian Public Service (APS) is increasingly being tasked with solving very complex policy problems. Some of these policy issues are so complex they have been called ‘wicked’ problems. The term ‘wicked’ in this context is used, not in the sense of evil, but rather as an issue highly resistant to resolution. Successfully solving or at least managing these wicked policy problems requires a reassessment of some of the traditional ways of working and solving problems in the APS. They challenge our governance structures, our skills-base and our organizational capacity. It is important, as a first step, that wicked problems be recognized as such. Successfully tackling wicked problems requires a broad recognition and understanding, including from governments and Ministers, that there are no quick fixes and simple solutions.”
We simply cannot allow people like Jonathan and the nearly 30 million Americans living with “high impact chronic pain” – pain that is disabling or those who are seriously ill and dying – to become collateral damage from policy efforts to contain the opioid epidemic. We need access to comprehensive pain care for all those who live with chronic pain and addiction.
|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
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.
Learn more at http://practicalbioethics.org
|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 firstname.lastname@example.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.
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.
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.
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.
|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…”
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.
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.
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 (TMZ, Variety, 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.
|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
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.
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.
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.