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Author Archive: Practical Bioethics

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07/23/2015

A Step Toward a Cultural Transformation in the Way Pain is Perceived, Judged and Treated

The following blog post is the executive summary of the June 29-30, 2015, PAINS Collaborators Meeting in Washington, DC, held in response to Department of Health and Human Services’ publication of the National Pain Strategy Report. 

BACKGROUND

In anticipation of publication of the National Pain Strategy (NPS) Report, in June 2015 the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of national leaders and organizations committed to advancing the sixteen recommendations made in the Institutes of Medicine’s report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, convened a Collaborators Conference in Washington, DC. The purpose of the meeting was to discern opportunities and challenges to implementation of the report, to build enthusiasm for it and promote collaboration among attendees in order to move the NPS Report from a vision to a reality. More than 100 prominent leaders from professional societies, academic institutions, federal agencies, patient advocacy groups, and policy organizations met to review the NPS Report and discuss each of its six sections.

In April 2015, the NPS Report underwent preliminary review by multiple federal agencies and was then posted in the Federal Register for public commentary. In opening remarks, Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), told attendees that more than 770 responses were received and the plan is expected to be released in the late summer/early fall. Expectations for it are high. The report’s vision states, “If the objectives of the National Pain Strategy are achieved, the nation would see a decrease in prevalence across the continuum of pain, from acute, to chronic, to high-impact chronic pain, and across the life span from pediatric through geriatric populations, to end of life, which would reduce the burden of pain for individuals, families, and society as a whole. Americans experiencing pain — across this broad continuum — would have timely access to a care system that meets their bio-psychosocial needs and takes into account individual preferences, risks, and social contexts. In other words, they would receive patient-centered care.”

PAINS surveyed participants prior to the meeting and found that overall, the NPS Report was well received by respondents, and stakeholders expressed appreciation and support for it. One respondent said about the report, “It presents a rare opportunity for cultural change with across-the-board goals and strategies.” The three foci in which attendees were most interested were:  professional education and training (72.7%), public education and communication (69.7%) and prevention and care (57.6%).

However, concerns were also expressed about the lack of specificity and accountability, the absence of a timeline, and the fact that there has been no appropriation of funding designated for implementation of the plan.  


CALL FOR SUPPORT

In the opening keynote address of the two-day conference, Dr. Sean Mackey, co-chair of the NPS Report Oversight committee, said, “Eighty incredibly dedicated national experts covering a wide range of the bio-psychosocial aspects of pain – including expertise from clinical and public health, legal, ethical and payment, including both traditional and complementary medicine – volunteered their time to develop the plan.” He introduced the concept of “high-impact chronic pain,” which the NPS Report defines as “pain associated with substantial restriction of participation in work, social, and self-care activities for six months or more.” Mackey said that doing so was meant to address challenges there have been to the IOM report’s claim that “at least 100 million Americans live with chronic pain…. and that there is a clear need to better understand the numbers of people with high-impact chronic pain, how to provide them with the best care to avoid both under- and over-treatment, and to identify those at risk for developing high-impact chronic pain after injury or surgery.” He said, “The NPS is a great document. It is not a perfect document.” He urged those present and others committed to transforming pain care in America not to pick the document apart, but to support it in its entirety. He also argued for the development of clear messaging explaining what the NPS Report is and what it is not.  Compellingly, he asked all those present to speak with one voice and not let the perfect be the enemy of the good.


OBSERVATIONS FROM SECTIONS OF THE REPORT

In brief reports, members of the six NPS Workgroups presented highlights of the section of the report they worked on, shared personal observations and then engaged with all those present in robust conversation. Key elements of those included:

• The need for research, including population, basic science, clinical translational, comparative effectiveness, and quality improvement were all discussed. Greg Terman, member of the NPS Oversight Committee, said that with the help of others at CDC and NIH, a set of pain questions are being developed to be included in the National Health Interview Survey.

• The importance of addressing historic disparities in health and healthcare was recognized as critical to successful implementation of the report in that they permeate the entire report. Nadine Gracia, Deputy Assistant secretary for Minority Health, cautioned that “culturally and linguistically appropriate language” must be incorporated in education and communication efforts called for in the report.

• Learning from efforts of the Department of Defense to improve pain care for veterans that have preceded the NPS Report was promoted by Dr. Chester “Trip” Buckenmaier in his report on Care and Prevention. In particular, he encouraged consideration of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR), the Patient Reported Outcome Measurement Improvement Survey (PROMIS) and Computer Adaptive Testing (CAT).

• On behalf of the Service Delivery and Reimbursement Workgroup, Marianne Udow-Phillips cautioned attendees not “to think that we are going to abandon fee-for-service” because she said large self-insured employers like it. Everyone recognized improved reimbursement as a keystone issue. Udow-Phillips encouraged the audience by saying that there is interest among payers in programs that improve quality and save money.  She called for small pilot programs to demonstrate the feasibility and efficacy of comprehensive pain care, including exploration of “fee-for-service with incentives.” 

• Although professional education and training is recognized as critically important, 
Dr. Mac Gallagher, reporting on behalf of the Professional Education and Training Section, said, “We can’t wait for the medical schools and licensure groups to change.” Attendees were enthusiastic about and supportive of the NIH Pain Consortium’s program to develop Centers of Excellence in Pain Education. However, Dr. Dave Davis, Senior Director of Continuing Education and Improvement at the Association of American Medical Colleges, agreed with Gallagher and encouraged more focus on continuing medical education for practicing clinicians, including biomedical, behavioral and complementary therapies. He also pointed to the importance of IEPs (inter-professional education programs).

• Penney Cowan, co-chair of the Public Education and Communication Workgroup, reported that two public education campaigns were recommended by the group. The priority campaign being an extensive public awareness campaign about chronic pain and the secondary campaign being on safe medication use by patients. Four “core messages” developed by the Chronic Pain Advocacy Task Force (CPATF), a coalition of 17 consumer advocacy organizations, were presented. The messages clearly resonated with meeting attendees and became a major focus of actions following the conference.


PUBLIC HEALTH, POLITICS AND ADDICTION ADVOCACY PERSPECTIVES

Outside experts provided input and perspective for consideration from public health, politics, and addiction advocacy. Dr. Georges Benjamin, Executive Director of the American Public Health Association, encouraged the use of patient narratives about those living with extreme chronic pain. He also encouraged gaining more clarity about the problem and reframing discussion using more of a public health framework. Dr. Keith Wailoo, historian and author of Pain: A Political History, shared how concerns about disability, physician assisted suicide, the “War on Drugs,” and dramatic increases in addiction to prescription pain medications have shaped pain policy over the last seven decades and impacted the lives of those living with chronic pain. He also discussed how the so-called “red state vs. blue state” worldview negatively impacts those who live with chronic pain and other diseases, including addiction. Dr. Jeff Levi, CEO of Trust for America’s Health, began his presentation by saying, “All politics, perhaps especially health politics, is personal.” He said that “the pain community starts with the individual in pain and wants to find the best solutions for that individual…. The substance abuse prevention world starts with preventing addiction and looks in particular to find structural interventions that make it harder for someone to become addicted.” Dr. Levi, as had others throughout the day, called for finding common ground and suggested specific strategies for doing so, with one of those strategies being to focus on harm reduction.


ADVANCING THE REPORT’S STRATEGIES

One the second day of the conference, participants broke out into groups focused on each section of the report and then shared thoughts and ideas about how to advance the strategies and objectives in the NPS Report. Those reports are incorporated in the full report in their entirety.

Key to the success of the meeting was the involvement of people living with chronic pain – a highly successful environmental lawyer injured in a bicycling accident fifteen years ago, a professor of bioethics and public health born with sickle cell disease, and Cindy Steinberg, a person who experienced a “crushing accident” more than a decade ago who has become a self-educated policy wonk and now dedicates her life advocating for better care for the 100 million Americans who live with chronic pain. 

Ms. Steinberg was the closing keynote speaker for PAINS Collaborators Meeting. In an impassioned appeal, she called for PAINS and all those present to do four things:
1) Endorse the four core messages developed by CPATF.
2) Develop op-eds in support of the NPS Report at the time of its release.
3) Advocate for peer reviewed articles about the Report.
4) Work together to develop a national communication strategy in time for Pain Awareness Month in September. 

Based on a robust evaluation plan, PAINS believes the Collaborators Meeting achieved the goals that had been set for it. (Perceptions and opinions of attendees regarding the meeting are included entirely as received.) One reason PAINS invested significant resources into evaluation was to assess attendees’ views about the role of PAINS in implementation of the National Pain Strategy Report. Based on responses to a meeting with key national leaders immediately following the conference, responses to a post-meeting survey, emails received from attendees, and a report from the meeting facilitator, PAINS believes that its greatest contribution is to continue to serve in the role of neutral convener and facilitator of collaboration among the many groups committed to advancing the NPS Report.

The conclusion of the report states the obvious, “A cultural transformation in the way pain is perceived, judged and treated” will require almost unimaginable resources, numbers of organizations and committed individuals, political will, and changes in attitudes. However, the dialogue, discourse and enthusiasm at the PAINS Collaborators Meeting encouraged those who convened and planned it and gave hope to all those present that the U.S. is at the precipice of a cultural shift in the way chronic pain is managed. The report’s vision can become reality, but there is much to be done. There is no time to rest on one’s laurels. As Henry Ford once said, “Coming together is a beginning, staying together is progress and working together is success.”

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07/20/2015

Paying for Medicare Advance Care Planning Puts “Duty to Share” Squarely on the Patient

Why is it that Americans seem to be the only people on the planet who live their lives as though death were an optional event? For many of us who have worked for years helping families and clinicians grapple with difficult choices in “shared decision making,” we’ve been challenged by that convention despite the evidence that 75% of us claim that preparing a living will and appointing a healthcare proxy are critically important. Yet fewer than one third of us do anything to make it happen.

Perhaps it’s our willing adherence to myths; most notably our believing that when the time comes, we’ll know, and we’ll have time to get our affairs in order, making our wishes known. This “just-in-time” approach may be comforting but, in reality, it’s magical thinking. For most of us, the “right time” never comes, but the crisis does. Believing in a scenario that we’ll luck into a peaceful passing without ever having so much as an uncomfortable conversation with anyone doesn’t support the reality that 80% of us will eventually rely on a proxy to make decisions for us.


Beyond “Just in Time”


So, how do we prepare for the realities of dying? First, name someone to speak for you when you cannot speak for yourself. But don’t stop there. Talk with that person about what matters most to you. Proxies need to be ready to respond to uncertainties, in a way that you would. Commit to ongoing conversations with loved ones and health providers, so your values and preferences are truly “shared.”

On July 8, the Centers for Medicare and Medicaid proposed new rules to pay for these conversations beginning January 2016.  If all goes as planned, Medicare will begin reimbursing providers for engaging in these discussions. That’s good news, because evidence shows that when patients’ expressed wishes are honored, survivors and clinicians report higher satisfaction because treatments align with goals. Anxiety and crises abate.


The Most Important Decisions


Before beginning this overdue conversation about values and preferences in end of life decision making, let’s examine a caution. Our tendency in healthcare is to “medicalize” everything. Getting older is not a disease. The most important decisions you and your proxy will have to make aren’t medical ones. They are emotional, social and spiritual. Death is not a medical event so much as it is a human, community experience.

So, before you take advantage of Medicare’s “advance care planning,” know what you want to say. You don’t have to be ready to answer questions about what kinds of treatments you do or don’t want, because research also shows that we’re not very good at predicting how we will feel about them in the future anyway. Instead, share values, what it means to be fulfilled, how important it is to know the details of your illness, what gives life meaning, and what a “complete life” looks like to you. Those are the kinds of things that will help your decision makers stand in and up for you when the time comes. 

Take advantage of the Center for Practical Bioethics’ resource, Caring Conversations®, available online for free (or in print for a nominal fee). There are no right and wrong answers, but there can be peace of mind. We know – and now Medicare agrees – that talking before the crisis can work. It leads to more favorable outcomes and higher likelihood that preferences get honored. Satisfaction improves. Patient-centered outcomes matter to everyone. Helping providers find that path is a duty we all bear. End of life is inevitable. Death may be a sad outcome, but it doesn’t have to be a bad one. 


John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.

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06/26/2015

PATIENT-CENTERED RESEARCH CAN IMPROVE CHRONIC PAIN CARE AND ADDRESS OPIOID ABUSE

Going for the Brass Ring

Last year, Joe Selby, MD, executive director of the Patient-Centered Outcomes Research Institute (PCORI), spoke to members of the NIH Interagency Pain Research Coordinating Committee (PCORI) to inform those of us on the committee about PCORI’s intentions to do more funding focused on chronic pain research. Dr. Selby said their interests were possibly in low back pain, migraine, musculoskeletal pain, and/or opioid abuse. I was elated. Then about a month ago (May 14, 2015), Dr. Selby posted a blog on the PCORI website titled, “Patient-Centered Research Can Improve Chronic Pain Care and Address Opioid Abuse.” 

I hope with all my heart that he is right; research or policy that can do both of these things is like grabbing the brass ring while on a merry-go-round. It is certainly a worthy goal but, to many, seems all but impossible. If anybody can do this, however, PCORI may have the best chance. Established by the Patient Protection/Affordable Care Act in 2010, PCORI’s mission is to “examine the relative health outcomes, clinical effectiveness, and appropriateness of different medical treatments” – particularly complex problems that threaten the health and well-being of all Americans. Chronic pain certainly meets that criterion.

In Dr. Selby’s blog, he said, “Since 2012, PCORI has built a sizeable portfolio of studies on chronic pain, two of which specifically address opioid treatment.” He went on to list some of the questions these studies have focused on:

  • How can we improve patients’ ability to communicate confidently with doctors about pain and pain medication?
  • What approaches to care delivery can minimize health and safety risks when long-term opioid use is considered?
  • What collaborative-care approaches to pain can improve quality of life, patient satisfaction, and adherence to other treatments?
  • How can we encourage patients to join and stay enrolled in integrative treatment plans that show promise of reducing chronic pain while lowering risk for opioid abuse?

He also informed readers that, in June, PCORI would be hosting “multi-stakeholder workshops” to discuss whether comparative effectiveness research (CER) can be helpful in addressing these issues. 

The week before Dr. Selby posted his blog, I was pleased to receive a letter from him inviting the Pain Action Alliance to Implement a National Strategy (PAINS) to send four representatives to two workshops in Washington, DC – one focused on low back pain and the other on long-term use of opioids in the treatment of pain. We quickly accepted, and on the morning of June 8, two members of the PAINS team and two of our Citizen/Leaders (people living with chronic pain and/or family members caring for chronic pain sufferers) went to the airport excited about traveling to our nation’s Capitol and participating in these important discussions. After six hours at the airport and our second plane cancellation due to mechanical problems in Kansas City and bad weather in DC, I emailed our PCORI contact to tell him that we would not be coming to DC, and we headed home with heavy hearts. 

The next day, I tried to participate in the opioid workshop remotely, but technical difficulties that even their “help desk” didn’t seem to be able to overcome, made it all but impossible for me to do so. I must say, however, that I am grateful to one of the meeting participants and the facilitator of the “opioid workshop” for their extraordinary efforts to include me. I am also grateful that the next day the PCORI facilitator sent me the rank-ordered questions that emerged from the workshop and gave me permission to share them. They are very interesting, and can be seen at:  

http://www.pcori.org/events/2015/prioritizing-comparative-effectiveness-research-questions-long-term-use-opioids-chronic

That afternoon I wrote to Dr. Selby to express our gratitude for PCORI’s interest in chronic pain and to explain to him why PAINS representatives were not at the workshops the day before. I said that it is our view that, “PCORI is essential to the ‘cultural transformation in the way pain is perceived, judged and treated’ called for in the IOM report, Relieving Pain in America, and echoed in the forthcoming National Pain Strategy Report.” I also invited him and/or others at PCORI who he would deem appropriate to visit Kansas City to meet with our team and PAINS’ Citizen/Leaders. I told him that our Citizen/Leader Group has met with and advised us for more than two years and that they have been enormously helpful. I encouraged him to activate the following link (and click the link there to the video, “The Faces of Pain”), so that he could meet some of these outstanding individuals:

http://practicalbioethics.org/resources/chronic-pain-resources

I also suggested that these remarkable people and others like them could be very helpful to PCORI, in fact, I believe, essential, as they build out their pain portfolio. I also offered to arrange for us to come to DC if it was not possible for them to come to Kansas City.

The ambitious goal PCORI has set -- comparative effectiveness research that will improve chronic pain care and address opioid abuse -- will require the involvement of many stakeholders. The most important among those may well be people who struggle to live with chronic pain and family members who care for them day-after-day. PCORI’s very name implies that they understand that. I look forward to hearing from Dr. Selby and welcoming him and others to Kansas City. In the meantime, I can almost hear the calliope music on the merry-go-round.

By Myra J. Christopher

Myra J. Christopher is the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Director of PAINS.

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06/16/2015

The Ethics of Resuscitation


A Brief History and Center for Practical Bioethics’ Efforts to Improve CPR Outcomes


Promise and Problems


Cardio-pulmonary resuscitation has offered food-for-thought for philosophers and bioethicists from its beginning, and the Center for Practical Bioethics has a long history of grappling with this subject.

In 1966, the National Academy of Sciences reported that closed chest cardio-massage and CPR should be ordinary treatments for hospitalized patients. Before that, CPR was a “hit-and-miss” proposition. Through the 1970s and 80s, the use of CPR became more prominent in hospitals, and CPR expanded to include defibrillation. In 1984, the year the Center was incorporated, Johns Hopkins Hospital became the first to incorporate automated external defibrillators (AEDs) into resuscitation efforts.

CPR was original intended for those who experienced cardiovascular arrests that were witnessed (i.e., those who died of a heart attack observed by someone with CPR skills). By the late 1980s and early 90s, it was being applied to all those who died in hospitals – and raising questions. One writer referred to it as “medical creep.” Another said, “Resurrecting the dead became medicine’s obsession.” Another referred to death itself as a “recurrent problem.”

DNR Orders


The Center for Practical Bioethics and others imagined that issuing do not resuscitate (DNR) orders would protect patients, who had little to no chance of benefiting from CPR, from the harms that can result when CPR is used inappropriately. Typical among these harms are broken ribs, burned skin, massive bruising, and being caught between life and death with little “quality of life.” Ron Stevens, MD, then head of Oncology at the University of Kansas, said that CPR was the “least aesthetically pleasing intervention done in medicine.” Another physician, one of the Center for Practical Bioethics’ “near founders,” Bill Bartholome, MD, wrote an article for the Annals of Internal Medicine in 1988 in which he said, “What is needed is a new perspective, a new way of thinking about Do Not Resuscitate Orders (DNR). We need to come to understand that in most tertiary medical centers and nursing homes the only predictably good candidates for the use of CPR’s techniques are staff and visitors.” 

For the most part, DNR orders were recognized in hospitals, but as, Medicare and state regulatory surveyors saw resuscitation as a quality measure, physicians were often hesitant to write such orders in particular for frail, elderly patients without capacity and/or when families were demanding that “everything possible be done.” And when patients who did have a DNR order left the hospital, there was no way for the DNR order to follow them home.

New Guidelines and Strategies


The Center for Practical Bioethics and others recognized that the near universal practice of attempting to resuscitate everyone who died in a hospital was ethically flawed and that questioning CPR in peer-reviewed journal articles and its efficacy at professional conferences was not enough to safeguard patients.  

In 1988, the Kansas City Regional Hospital Ethics Committee Consortium convened by the Center followed the lead of a community-based project in Hennepin County Minnesota that created a way for DNR orders to expand beyond the hospital settings. With our emergency medical service providers, local hospitals and nursing homes, Kansas City became the second community in the country where patients at home could have a DNR order that would be honored. The Kansas City initiative was featured in the Annals of Emergency Medicine.

The Consortium also created policy guidelines for DNR Orders in Nursing Homes and for Honoring DNR Orders During Invasive Procedures. The Spring 1998 issue of Bioethics Forum contains these Consortium guidelines. Because of this work, the Joint Commission (then JCAHO) sought the Center’s help in developing their standards.

POLST and Beyond


That same year the Center became aware of POLST (Physicians Orders for Life Sustaining Treatment) in Oregon, which expanded from unwanted and potentially harm treatments statewide. In 1999, the Center published a policy brief reporting Oregon’s initiative in Issue 3 of its publication, State Initiatives in End-of-Life Care. Implementing a POLST-like project in Kansas City has been challenging because our community straddles the state line. Today, the Center in concert with large healthcare-providing institutions leads a similar project called Transportable Physicians Orders for Patient Preferences (TPOPP). It is the first bi-state “POLST paradigm” initiative in the country. TPOPP educational materials and resources can be found at practicalbioethics.org.

The Center’s work in this area has long included inviting scholars from across the country to speak about their research and writing on this topic. On August 12, 2015, 7:00 pm, we will continue providing education and opportunity to learn from national scholars and one another when David Casarett, MD, presents the 21st Annual Rosemary Flanigan Lecture at St. Joseph Health Center in Kansas City, Missouri. Dr. Casarett is a tenured professor at the University of Pennsylvania Parelman School of Medicine and the author of Shocked: Adventures in Reviving the Recently Dead, a complete history of CPR.


By Myra Christopher and Rosemary Flanigan, PhD



21st Annual Rosemary Flanigan Lecture


SHOCKED: Adventures in Bringing Back the Recently Dead


August 12, 2015
Reception 6:00 pm
Lecture 7:00 pm
St. Joseph Medical Center
Alex George Auditorium, Building D
1000 Carondelet Drive, Kansas City, MO

David Casarett, MD, associate professor of medicine at the University of Pennsylvania, will explore the history, science and moral hazards of reviving the “recently dead.”

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06/16/2015

A Right to Be Shocked?

Back in the 18th century, concerned citizens were experimenting with ways to bring back the dead. But they didn’t make a lot of progress. Indeed, the 19th century was not a particularly productive one for the science of resuscitation, and the first part of the 20th century wasn’t much better.

Fortunately, though, there were other important advances during that period, including many new discoveries and inventions. There was the airplane, of course (1903), and the ballpoint pen (1935), and let’s not forget the machine that makes sliced bread (1927), as well as the first Rock & Roll song (1951). That, by the way, is widely believed to be “Rocket 88”, by Jackie Brenston and his Delta Cats, which beats the heck out of Schubert or Chopin, if you ask me.

But if you were a cardiac arrest victim who was “apparently dead” in 1951, your chances of survival probably weren’t much better than they would have been 100 years before. On the bright side, if you were lucky enough rejoin the living in 1951, you’d be able to wake up to the world’s first Rock and Roll song.

Things Have Changed


In the last 50 years, things have changed. A lot. Now resuscitation is no longer the province of medical professionals. Anyone can resuscitate anyone. Moreover, it’s a revolution that we’re all part of, whether we know it or not. If you have two arms, and a sense of rhythm, you can perform CPR.

That’s not such a bad thing. Certainly the science of resuscitation has improved, and CPR does save lives. So encouraging bystanders to try their hand at bringing back the dead seems reasonable.

On the other hand, a try at resuscitation seems to have become mandatory. It’s the new default. Unless you happen to have an “out of hospital” Do Not Resuscitate (DNR) order, or a highly visible bracelet (or a tattoo), if your heart stops there’s a good chance that someone is going to feel compelled “to do…. something!”

That’s a little worrisome. I’m thinking of the court case that resulted from the death of Mary Ann Verdugo, who died in a Target store in 2008. Her family brought a lawsuit against Target because, they said, the store did not have an Automatic External Defibrillator (AED) available to its customers. That case is making its way slowly through the courts. In the most recent development, the California Supreme Court found in favor of the store, saying that it didn’t have a duty to provide defibrillators. The case isn’t over, though. Now it goes to the 9th Federal Circuit Court.

Crowdsourcing Resurrection


Regardless of how that suit is decided, it’s going to have interesting implications for the ongoing revolution in crowdsourcing resurrection. It also will raise many questions that we’ll need to think through very carefully.

Do we all have an obligation to try to bring someone back from the dead?  Should we assume that person lying on the floor wants us to try? How much evidence to the contrary do we need in order to decide that resurrection shouldn’t be an option?

These are difficult - and perhaps impossible - questions for the paramedics, doctors and nurses in medical settings who wrestle with them every day. And that’s concerning, because now we’re asking everyone to make those decisions. Bystanders, resident service directors and even gardeners will need to start thinking about whether and when resurrection is appropriate, necessary and the right thing to do.

These difficult questions are multiplying, as the revolution in crowdsourcing resurrection is speeding up. It took 200 years to get the hang of CPR. Now we have defibrillators that are proliferating in malls and airplanes and bus stations. And there are more developments on the horizon.

Sure, we’ll get better at bringing back the dead. That’s good news for people who can rejoin the living, and especially for those who want to. But as the tools of crowdsourcing are increasingly available, we need to figure out whether and how to use them.


By David Casarett, MD

Dr. Casarett, a researcher and tenured professor at the University of Pennsylvania Perelman School of Medicine, will present the 21st Annual Rosemary Flanigan Lecture on August 12, 2015.

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06/14/2015

How was Henrietta Harmed?

The HeLa Legacy

I recently had the pleasure of meeting two of Henrietta Lacks’ descendants when I participated in a panel discussion with her granddaughter Kimberly Lacks and her great-granddaughter Veronica Spencer at Metropolitan Community College, Longview’s Spring Convocation on April 16th, 2015. The story of Henrietta Lacks was chronicled in the best-selling book The Immortal Life of Henrietta Lacks by Rebecca Skloot. This African-American woman, who died in 1951, is the source of the famous HeLa cells. These cells, obtained from a biopsy of Henrietta’s cancerous cervix, are unique; they are immortal in the sense that they have been growing in tissue culture since they were removed from her body in 1951 by doctors at Johns Hopkins Hospital.

Henrietta and her HeLa cells have a complex legacy. Although the cells were taken without Henrietta’s truly informed consent, they have been used in medical research to make important scientific advances ranging from the development of the polio vaccine to new drugs to treat HIV and cancer. Despite this incredible contribution to medicine, her role as the source of these cells has been obscured until recently. (In medical school, I first learned of these remarkable cells as ‘Helen Lane’ cells.) Neither she nor her family or descendants received any monetary compensation, although pharmaceutical companies have profited enormously from drugs developed using her cells. And, in a striking irony, many of her descendants lacked health insurance to provide access to the very medical treatments that HeLa cells had enabled.

Despite these facts, I was once asked by a bioethicist the following question: How exactly was Henrietta Lacks harmed? After all, would it not be the case, even today, that patients undergoing surgery for cancer would give tacit or formal written consent for their doctors, or researchers associated with their doctors, to use tissue obtained from surgery for medical research, and expect no formal recognition or financial compensation?

Direct and Indirect Harm

I believe Henrietta was harmed. She was directly harmed because she was not fully informed of the risks and benefits of undergoing particular medical treatments for her cancer and participating in research. Admittedly, the standards of informed consent and, in particular, consent for research participation have changed dramatically since 1951. However, there has always been a universal medical ethic to be truthful, and to hold the patient's best interest as the primary responsibility of the physician. These are two critical elements of the concepts that have now come to be named as autonomy and respect for personhood. The obligation to be truthful and to inform patients about the risks and benefits of their medical treatments were firmly enshrined in medical ethics even back in the 1950’s. The failure to live up to these responsibilities was partly responsible for the physical pain and suffering that Henrietta Lacks endured.

Henrietta was also indirectly harmed through the impact her treatment has had on her family and descendants. Like many others who live marginalized lives in marginalized communities—as surely was the case in the 1950’s in segregated city of Baltimore and arguably remains the case even today—they do not have faith in the integrity of the medical institutions that are supposed to serve them.  From personal communication with the family, I know that absence of trustworthiness manifested by Johns Hopkins in their treatment of Henrietta continues to influence the current attitudes of her descendants toward medical care in their community. This is an ongoing harm. 

Making Amends

What might Johns Hopkins and the medical establishment do to make amends to the descendants of Henrietta Lacks? One important step has been taken recently. The National Institutes of Health (NIH) announced an agreement with the Lacks family to protect their personal privacy and give them a say in how some research using HeLa cells is conducted. Specifically, the genome data of the Lacks family, which was revealed when the HeLa cell genome was decoded, will be accessible only to those who apply for and obtain permission from a committee of the NIH that includes members of the Lacks family.

Furthermore, the investigators must acknowledge the contribution of the Lacks family in their publications and presentations of their research data. However, the NIH agreement does not include a financial compensation for the family. 

Johns Hopkins, an elite and powerful institution, could also make an overt commitment of resources to create and advance programs that promote better access to care for poor and marginalized groups in Baltimore. The institution should work to identify and repair factors at work in the community that adversely affect health. Furthermore, it should explicitly identify these programs as a form of compensation, or reparations, for past ethical breeches that contributed to these problems. This should be undertaken in the name of Henrietta Lacks in recognition of both her extraordinary contribution to science and medicine and her family’s remarkable commitment to the continued use of her cells for the betterment of humanity.

The Henrietta Lacks story teaches us many things. One important lesson is that it is never too late to acknowledge and to make amends in the present for the great wrongs that have been committed in the past.




Written by Richard Payne, M.D.

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05/13/2015

ETHICS OF THE POLITICS OF PAIN

Picking Up the Gauntlet

On May 1, the Center for Practical Bioethics hosted an ethics symposium, something they do every spring. What made this event special enough that it moved me to write about it was the topic, Healing What Hurts: The Politics of Pain.

I’m a bit of an oddball in the pain world. I am not a healthcare professional, nor am I person with chronic pain. I am not an academician or researcher; I don’t work in industry. I am someone who came in the ‘side door’ to the pain world providing services like strategic planning, meeting coordination, and program/project management to organizations like the Center. I can’t truthfully say that helping to change the way pain is perceived, judged and treated is a personal passion of mine. But it has become something I believe in and care about, a testament to the incredible people at the Center with whom I have the privilege of working, and my exposure to the thinking and work of individuals like those who presented last week.

At the symposium, I felt like I was witnessing the creation of a beautiful tapestry, with each speaker picking up the thread of those who came before and continuing to weave the threads together until the complicated (and troubling) reality of the polarizing space in which pain currently resides was achingly clear. Some threads:
  • Historian and author Dr. Keith Wailoo’s spellbinding historical dissection of the poles our policymakers and courts have swung between in answering the questions, “Whose pain matters and who deserves care?” While historians feel more comfortable looking back instead of ahead, Dr. Wailoo did offer some insight into my question of how to have success this time around in making sure that reimbursement model changes follow our ability to demonstrate that comprehensive multi-modal pain care holds down costs and improves outcomes.
  • Dr. Kathy M. Foley (I view her as the Grand Dame of this continent’s pain movement) exposing the harsh realities of care being forced to focus on what’s reimbursable vs. what’s best for the person with pain.
  • Dr. Bob Twillman laying bare the damage caused when overly simplistic policy and action around harm reduction focuses solely on cutting down on the supply of prescription narcotics, without looking at the demand side and asking, “In which patients should we use opioids, at what doses, for how long, with which adjunctive treatments, and with what precautions?”
  • Dr. Richard Payne sharing some pretty mind-blowing emerging science about how the social determinants of health most closely associated with underserved populations actually affects one’s biology. Melissa Robinson from the Black Health Care Coalition made it real for the impoverished in Kansas City.
  • And, pain pioneer Dr. Lynn Webster, pain advocate Janice Lynn Shuster, and public policy expert Katie Horton reminding us all that the lives of people in pain matter and their stories must be heard.
Having worked in this arena for over a decade, I will own that the fight to make things better for people with pain feels akin to running a marathon in five feet of mud – it’s a slow slog even on good days. The assembled audience sensed there may still be some dark days ahead before the pendulum swings back towards reason and progress. But the conviction that things will get better and that we must continue the fight was evident in abundance.

Who else but the Center could and would provide the kind of thought provoking and engaging delve into the ethics of the politics of pain? There may be others, but the Center picked up the gauntlet and ran with it. And for that, they have my love, admiration and respect. [In the spirit of full disclosure, I currently do some consulting work for the Center on the PAINS Project.]

Written By Ann J. Corley, MS

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05/01/2015

Granny Takes an Art Class

My Journey with Elizabeth Layton

Although it was nearly 40 years ago, I remember seeing Elizabeth Layton's drawings for the first time as if it were yesterday. I was a young reporter for The Herald newspaper in Ottawa, Kansas, when I saw two of these drawings. They made me laugh and cry at the same time. Drawings of an old woman with big green eyes that reached out to me.

Then, I learned from her art teacher at Ottawa University that Elizabeth Layton was 68 years old and taking her first art course. This, I realized, would be a good story for my newspaper, "Granny Takes Art Class." Meeting her, however, I realized that this was more than a one-time story for the Ottawa Herald. It would be my life.

When the story appeared in The Herald, I had also arranged for a dozen of her drawings to be shown at the local library. Visiting her weekly, I learned more of the story. She had been depressed half her life and undergone shock treatments. Learning to draw helped to cure her depression. It was gone six months after she began drawing by looking at herself in a mirror and drawing not only what she saw but what she felt.

I was able to arrange for one-person exhibitions of her work in about 160 museums across the country, including the Smithsonian. And I was able to get coverage of her in Life, People and Parade magazines, as well as NPR and Good Morning America.

She and I had an understanding and a mission. We knew that viewing her drawings could and has helped people – people dealing with their own aging, their own depression, their own families. And the drawings could help people better understand the social issues around them – racial injustice, homosexuality, the environment, homeless, and on and on.

Elizabeth had to draw and I had to get those drawings "out there." It was my therapy during the last 16 years of her life and the 22 years since.

By Don Lambert, Curator

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04/21/2015

ODE TO A BLONDE BOMBSHELL

When I first met Bonnie Peterson 30 years ago, I thought, “Wow! You’re the nurse guys dream about!” She was young, blonde and beautiful. What I couldn’t tell at first blush was that she was also one of the smartest and most tenacious nurse leaders I have ever had the privilege of working with, and without question, the strongest advocate for nursing, nursing ethics and bioethics that I have ever known.    

Bonnie and I both had new jobs. She was the new Vice President of Nursing/Clinical Care at Children’s Mercy Hospital (CMH) here in Kansas City, and I was the Executive Director of a brand new freestanding bioethics center, Midwest Bioethics Center (now the Center for Practical Bioethics). The year 1985 was a great one for Bonnie. That year she married her Pete Peterson, an attorney who knew how lucky he was to have landed Bonnie. They adored one another.

Ethics Committee Pioneer


CMH was one of the Center’s “early adopters.” There was a group of physicians there who had met regularly for a number of years and included one of our founders, Hans Uffelmann, a philosopher at the University of Missouri – Kansas City. It was sort of a “journal club.” They would all read articles, and then meet for breakfast to discuss them. Hans convinced the group that they should transition into a hospital ethics committee, which was quite the thing for hospitals to do at that time, and that he and others at the Bioethics Center should consult with them in this transition and provide ethics education to them. 

They agreed, and Bonnie was the administrator with whom we worked and who oversaw this transition. Ultimately, however, CMH established an ethics committee under the authority of the medical staff. Unfortunately, to them this meant that, although nurses were welcome to participate in the educational activities, they could not serve as committee members. (There was a lot of brouhaha about legal protection from disclosure regarding  intimate case conversations.) Having come to know Bonnie and being aware of how much effort she had put into this, I thought she would be furious, but not so. That was not her style.

She let the guys proceed (and they were all male physicians), and she established a “nursing ethics forum” where nurses met monthly to also discuss difficult cases. It could not be called an ethics committee because there already was one in place and it was for physicians only. In a short time, however, physician members of the ethics committee became open to nurses presenting cases before their group and, eventually, nurses and others were invited to serve on the ethics committee. That’s the way Bonnie did things. Unlike me, she never stomped her feet or demanded anything. She simply decided what she thought best, and then she made it happen – quietly, unrelentingly….

Leader, Teacher and Mentor Extraordinaire


And what she thought was best was very impressive. She was part of the team at CMH that planned a new wing of the hospital with a Kaleidoscope theme. She was involved in CMH opening auxiliary clinics and ultimately a second hospital in the Kansas City metropolitan area, bringing hospitals together to support air ambulance services that none of them could afford separately, and establishing a neonatal ICU at another hospital. She was also an active and dedicated member of the Bioethics Center. It was rare for us to hold any event that Bonnie was not present. She even participated in a week-long nursing ethics intensive seminar hosted by the Center, although she could have taught the course herself and actually served on the faculty for nursing leaders that followed her group. 

After more than a decade, Bonnie left CMH. She accepted executive positions in a couple of other KC hospitals, but Bonnie loved children. That’s where her heart and passion were and that’s where she went – to the Children’s Hospital of Wisconsin. And when she called, we went to “do ethics” with them, and whenever she was in Kansas City, she called and came by the Center. 

Fortunately, for us Bonnie ultimately returned to Kansas City, in part, to pursue her life-long dream of completing her PhD in teaching at the University of Kansas. None of her friends could understand why she thought she “needed” a PhD. Bonnie Peterson was one of the best teachers I have ever encountered, and her students LOVED her. She served on the Advisory Board for the School of Nursing as did I. 

Colleague and Friend


One of my greatest honors was to have been recognized as an honorary alumnus by the School of Nursing. It wouldn’t have been like her to share that she was the one who nominated me. I learned that later from someone else.

Bonnie also came home because she was having some health problems. I can’t remember when Bonnie was diagnosed with cancer; it seems like a very long time ago. However, I do remember when I was diagnosed with cancer. It was in January 2011. Bonnie was right there for me. I got phone calls, notes, books, love and encouragement from her. In thinking about how to express my respect and admiration for Bonnie Peterson, I decided to share that Bonnie Peterson was the one person in my circle of family, friends and colleagues with whom I cried and told her how frightened I was. In her inimitable way, she said, “We’ll be okay. Nobody is better prepared than are you and I to deal with these issues. We’re good at making tough decisions about healthcare, and I’ll be there when you need me.” 

Like many others, I feel blessed to have known Bonnie Peterson, PhD, RN, and I will miss her. 


By Myra Christopher, Kathleen M. Foley Chair for Pain and Palliative Care
Center for Practical Bioethics

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04/14/2015

LIVING WILLS, GREYHOUNDS AND GOALPOSTS

National Healthcare Decisions Day – April 16, 2015

By John G. Carney, MEd, President and CEO
Center for Practical Bioethics


For years, I’ve been curious to know whether people fail to complete living wills and avoid naming a healthcare agent out of procrastination or a false sense of confidence that they have plenty of time to do it later.

Reality is, if you don’t do it when you don’t have to, it’s not likely to go well when you do. Naming someone during a time of crisis to speak on your behalf can be downright cruel, especially when you’ve not shared much about the things that are really important to you.

Share What’s Important

What are those things? Well, they aren’t scary or monumental. They include things like how important laughing, talking, sharing and “just being” are to you. Don’t get all tied up in feeding tubes. Instead think about what sharing a meal means to you. Is it a means to an end or an end in itself?

I once shared a house with an older-than-me bachelor and swore when he ate at home he never cooked anything that didn’t come in a box and could go in a microwave. I, on the other hand, started just about every meal sautéing fresh onions and garlic in olive oil. Food had entirely different meanings to us, and that became starkly evident to me when we talked about his dad’s early onset Alzheimer’s and how differently he approached the question of feeding tubes when the difficult question arose in his family.

So stop worrying about a tube in every orifice! Instead think about the sharing what you want more than anything – even at the end. Don’t obsess about completing a living will (aka healthcare directive) to the point that it paralyzes you from acting. Instead, take the time to share with someone who loves and cares for you what’s important to you as you think about life in general and especially its final stages. Focus on the positive - the most fulfilling aspects of your life. This isn’t a “bucket list” of items to do, but rather a sharing of values and convictions. What do relationships, solitude, faith, nature, self-expression and art, work, music and family mean to you?

Then, when that’s all done, ask that person to be your agent. And then promise that person that you’ll do it again in a year or two down the road – or whenever you have a major event in your life – from the birth of a child to the diagnosis of a serious illness. Life happens and, while our wishes and dreams may alter, you’ll be comforted by the fact that values – real bedrock beliefs about life and love – pretty much stay the same. But don’t assume even those close to you know all that.

Recognize Greyhounds and Goalposts

Over the years I’ve learned about two very important syndromes that all of us deal with differently. One is called the “Greyhound Syndrome.” It’s the phenomenon that sometimes we experience a great freedom of anonymity sitting next to a perfect stranger (on a bus traveling cross country) and share our deepest thoughts more freely than we do with those we’ve shared a lifetime with. Hospice volunteers can regale you with stories they’ve heard, never to share again, by a dying patient. These are not necessarily dark secrets of our past so much as unvoiced hidden treasures. Some are worth sharing before we die; others are worth taking to the grave. Think about which is which.

The other syndrome is what’s called “Moving Goal Posts.” This phenomenon deals with how some future state or health condition may appear unacceptable at one point in our lives and much more acceptable at another. That’s why checking boxes and lists on living will forms doesn’t work for people in states of relative good health. But stories, treasured thoughts, values and convictions work at every level.

Have a Caring Conversation Today

So take a leap and share your stories with someone you love. And, this April 16, on National Healthcare Decisions Day, have a caring conversation. Name an agent. Start talking about what matters most and don’t make it a somber depressing discussion. Think about it as a gift to those you love that will lead to peace of mind – for you and them. Because it likely will – far more likely than leaving it to chance. Close to 85% of us will have to rely on someone else to make our final wishes known. 

If you need help getting started, we’ve got a little booklet that will help you do just that. Download a free Caring Conversations workbook or order a printed version from the Center for Practical Bioethics’ website.

Seize the moment and turn what you thought was morbid and ghoulish into the marvelous and glorious. You may just discover something about a loved one that will serve you both in the moment and for a lifetime.

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