Thursday, July 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.”

Monday, July 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.

Friday, June 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.

Tuesday, June 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.”