PAIN ACTION INITIATIVE: A NATIONAL STRATEGY (PAINS) SAN DIEGO REPORT

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1 PAIN ACTION INITIATIVE: A NATIONAL STRATEGY (PAINS) SAN DIEGO REPORT Introduction: On Tuesday, November 16, 2010, the Center for Practical Bioethics (CPB) hosted the fifth and last regional meeting to convene stakeholders in the treatment of chronic pain as part of the Pain Action Initiative: A National Strategy (PAINS) project. The regional meetings were intended to identify leaders and organizations working to improve treatment for those living with chronic pain and to assess their readiness and capacity to develop a comprehensive strategic plan to improve the treatment of chronic pain. To develop the list of invitees, we utilized CPB s database and also had assistance from: American Academy of Hospice and Palliative Medicine American Academy of Pain Management American Academy of Pain Medicine American Pain Foundation We also made a special outreach to state leaders of the Alliance of State Pain Initiatives, the Alliance of States with Prescription Monitoring Programs and state chapters of the American Academy of Family Physicians. (Some of these collaborators extended invitations directly to their constituents on behalf of the Center, and others provided CPB with names and contact information.) More than 150 invitations were extended; all were invited via . The San Diego meeting was the smallest of the five regional meetings. Fourteen people attended, and it was a more homogeneous group than many others. All but one participant was from California. Three- fourths identified themselves as clinical healthcare professionals ; however, only a third indicated clinical healthcare professional as the primary way they work on pain issues in their community ; 25% indicated that their primary work is as an advocate, and 25% indicated their primary work is as a researcher/academic. (A list of attendees is attached.) The group was predominantly non- Hispanic white/caucasian. One physician who is African- American attended. However, the group indicated that they serve a very diverse population including all ethnic groups asked about and a high percentage of patients without insurance. The conversation was rich and robust. The smaller group gave an opportunity for more continuity of conversation and opportunity for people to express complex thoughts and concerns.

2 A Hidden Epidemic It was ironic that, although the majority of the participants were healthcare professionals, much of their conversation was about the need to empower people living with chronic pain and to legitimize pain with the public. (These concepts were raised in all five meetings.) Many reasons were suggested as to why pain has not received the attention and support that other diseases and conditions, e.g., cancer, HIV, Alzheimer s, have although the number of people who suffer with those conditions is much less than those who live with chronic pain. One participant said, Pain is too big and not something that you can validate; it is hard to wrap your arms around. Many talked about the stigmatization of pain patients and that people don t talk about their problems because they are afraid that they will be seen as weak or as drug seekers. The media attention being given to the abuse of prescription drugs, especially OxyContin, is believed to be exacerbating this problem. (The week of this meeting KUSI- TV in San Diego ran a week- long news series on the abuse of OxyContin. It also aired on Good Morning San Diego.) There was discussion also about how our socialization and enculturation leads many people to be embarrassed that they can t deal with their pain or they somehow deserve to suffer. Participants believe this is especially true for men and for African- Americans. Participants believe that to change these perceptions there is a need for positive narratives, i.e., stories about how people have been helped and enabled to function and live their lives normally with appropriate pain treatment. These narratives need to showcase the problem for people across the life spectrum, including children living with pain and nursing home residents who may be afraid to or unable to speak out. A public education campaign about the successful treatment of chronic pain built on these narratives can not only make people feel more hopeful but can also educate consumers about how pain should be managed. Participants felt that the focus of patient stories or case studies should not be exclusively on medications but on comprehensive approaches to pain management, including medication when necessary. A campaign showcasing these narratives could educate patients AND healthcare professionals who also need information to reframe their perceptions about people with pain and their responsibilities to them. Education of Healthcare Professionals There was significant discussion about need for better education for healthcare professionals in training and about the difficulty of adding anything to current curricula. As in other meetings, there was also discussion about the importance of establishing pain as a medical specialty and the politics internal to medicine about that. The critical role nurses, physician assistants and

3 primary care physicians play as frontline providers and their need for additional pain education in their curricula was discussed also. Improved communication skills were specifically pointed to as being necessary to better education. Talking about pain can be time consuming, and healthcare professionals need to be better, more efficient, effective, and confident about their conversations with patients. Several participants indicated that, after leaving training programs, both nursing and medical students regress to the mean. One medical educator said, we have been noticing that with regard to first, second and third- year medical students, they do a great job, but penetration dwindles from the 4 th year on and into residency with respect to both pain and palliative care. This led to a discussion about the importance of continuing education and support for practicing clinicians throughout the healthcare delivery system. A number of innovative approaches in California were described. With grant support from the Archstone Foundation, San Diego Hospice has piloted a pain management education and research program in long- term care where untreated pain is a serious problem. The program is 10 weeks long with 15 minute classes on identification, assessment and treatment of pain. The classes were referred to as bites of education. They occur at nursing stations and are targeted to CNAs and nurses. Another San Diego Hospice project, Pallmed Connect, provides a hotline for clinicians seeking phone consultation who may not have expertise in pain management or palliative care. The Southern California Cancer Pain Initiative is also providing cancer pain pocket guides to healthcare professionals. In addition, there was discussion about how evidence- based treatment protocols can educate and support healthcare professionals to provide better pain care. One participant expressed frustration about the fact that, although there have been repeated calls for better professional education about pain over the last decade, there has not been much progress. She said, I personally feel that it is in our (patients ) best interest to make a case against these bodies, i.e., those who know what to do and are not doing it, with the public and legislators. It was recognized, however, that education alone will not lead to the changes necessary for people living with chronic pain to receive the care they need and that other stakeholders need to be educated as well, including insurance companies and payers. Financial Disincentives One participant said, The wrong people are practicing medicine; insurance companies are practicing medicine by telling providers what they can and can t do. There was a perception among participants that third- party payers consider billing for pain care as fraud and abuse and that not paying for pain care can reduce their costs. Lack of reimbursement was also

4 believed to be the reason for the demise of multi- disciplinary pain clinics and programs. One participant said, There used to be thousands of these clinics; now there are less than one hundred. It was suggested that an economic case needs to be developed and provided to insurers and payers to make it known to them that proper pain care is not only appropriate but also cost worthy and will save them from chronic pain treatment. This argument should be shared with legislators also. Imbalance in Public Health Policy One participant said, These are challenging times; we have had a luxury in the West in the past of not seeing much abuse/diversion, but now we are seeing it, and really need to focus on patients to find a balance in legislation and regulatory efforts. There was concern expressed about the recent legislation in Washington State and the potential for copy- cat legislation in other states. Participants discussed reasons healthcare professionals didn t oppose the Washington legislation, including lack of knowledge about what was going on, concern and confusion about causal relationship between prescribing for pain and diversion, primary care physicians concern about treating pain, and fear of the DEA and other regulatory entities. One participant commented that when you look at a lot of the deaths that have occurred, they are associated with methadone, a cost- driven decision made by insurance formularies or others. It s a cheap pain drug, but there has not been adequate education for providers who prescribe it. What one attendee referred to as legislating medicine was seen as a burgeoning issue leading to decreased access due to lack of insurance coverage and negative consequences to those struggling with chronic pain. It was interesting that in this context of skepticism and concern, participants were very positive about the California web- based prescription monitoring program, CURES. One pain specialist said it has evolved from a middle of the road to state of the art program. It is free and voluntary and provides real time patient information to prescribers. There is no consequence to providers who do not use CURES. Still, it is grossly under subscribed. Out of 185k practitioners only 4,000 have enrolled. A medical educator asked if the CURES program has been tapped for research? The director of the program said they are getting requests from medical institutions, colleges, and medical facilities. This led to a discussion about the need for more and better research regarding the treatment of pain to support evidence- based pain care.

5 Need for Data Both public and private institutions in California are attempting to address the need for more definitive data. Millennium Research Institute, a proprietary company that describes itself as expert in medical technology market intelligence, is focusing on advancing the science of pain management and outcomes of care, pharmacokinetics, and making research partnerships according to one participant associated with Millennium. They have a pain population database that includes 550k urine drug testing samples representing the national population and are trying to create evidence- based tools and resources to use in decision- making for practitioners. The group strongly believed that more research will lead to safer and more effective treatments for pain patients. Broader Menu and More Support for Effective Treatment Options Necessary Especially for Non- physical Aspects of Pain There was a robust discussion about the need to deconstruct pain and consider and address the different aspects of pain, including neuro, physical, psychosomatic and spiritual issues and the WHO whole pain model, a cognitive behavioral model of pain care, to help a patient be informed about managing their own pain, and taking an active role in their treatment. There was tremendous frustration expressed about the harmful distinctions made between physical health and mental health and that the lack of resources most often precludes a holistic approach to pain treatment. One pain specialist said, On a daily basis I spend a huge chunk of time trying to educate patients about the role of psychological treatment in the treatment of pain. The vast majority of time depression results from chronic pain chronic pain/chronic depression. A cultural barrier says it is a weakness to have a mental health problem; it is a barrier to me trying to treat these patients with power of mind, mindful ways of assisting with pain management. There was a strong consensus that multi- modal pain care is the best approach. Feasibility of a National Strategy/Campaign One participant pointed out that, although there are an increasing number of organizations involved in these issues, there is little coordination among them. She questioned, Do we need to keep reinventing the wheel? and commented that we need to leave our organizational names at the door and work together. Another commented, Of course a national strategy is a good idea and expressed frustration that we keep talking about it. He suggested that maybe we are at a tipping point and that the time may be right for such a campaign. It was suggested that the science of social change and social marketing should be utilized to develop a strategy/campaign. One physician participant said, We have to figure out if there is a ground swell already here that needs to be validated, or if a ground swell needs to be created. There was discussion about how the IOM pain study committee could help

6 to drive a national strategy and about the positive potential of media/film involvement in light of the negative impact the media has had on pain care. One participant said, What film and TV takes away it can give back. Prepared by Myra J. Christopher 29 December 2010

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