Thursday, April 28, 2016

This Is How Prince’s Death Begins Conversation About Addiction

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

The Conversation Is About Compassion and Addiction


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

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

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

Addiction Is a Disease, Not a Character Flaw

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

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Thursday, April 21, 2016

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

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

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

Black and White Pain


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

Explaining the Bias


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

Bioethics Response?

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

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

Richard Payne, MD, holds the John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University.

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


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Friday, March 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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Monday, February 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?


RESOURCES:




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

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