Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More
Something is wrong here.
I feel like crap.
This isn’t fair.
I don’t want anyone else to ever experience what my kid experienced.
At some point, when we feel strong enough or mad enough, we want to take action to improve health. This is advocacy. Many of us advocate for someone, sometime. Or we want to. Ourselves, our family members, our cronies, our community. What lessons can we learn from a master at advocacy? I interview Mary Sue Schottenfels, Director of ClearCorps Detroit, a seasoned community organizer, a master advocate.
The lessons I heard from Mary Sue were:
- Don’t go it alone-join, network, and collaborate.
- Keep your word, follow through.
Last month I asked for a reality check from my social networks on behalf of the Patient-Centered Clinical Decision Support (PCCDS) Learning Network about helping people use information better in managing pain:
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians and care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Many (more than 25) of you responded. You being People at the Center of Care (people with pain, medical and non-medical professionals advising and treating people with pain, and the people who support patients and professionals day-to-day.) Thank you for your insights. They make a difference. Here’s a summary, lightly edited, of what I heard.
Opioids and Pain
Most respondents couldn’t relate to opioid clinical decision support. They could relate to pain management. Nobody said they preferred to take opioids. A few said that when their chronic pain was really bad, opioids were the only thing that worked. They were frustrated that they couldn’t get them anymore due to the heavy focus on opioid reduction.
- When I have a sickle cell crisis, only opioids relieve my pain. I’ve had to remain in excruciating pain because they thought I was drug seeking.
Describing pain is frustrating and limiting
- The question frustrated me every time. I asked them to create a standard list to choose from addressing the quality, duration, intensity, location, etc. of the pain. That would have been so helpful. As you have learned to gain awareness to name and to know your pain, your mindful ability to stay with it, rather than run from it, I believe is part of the equation you seek to address. Aversion and fear of our experiences only add another layer of pain.
- I have to manage my doctors’ abilities to hear about the pain. If I score too high I’m a complainer and they think nothing will work. If too low, then I’m not worth treating.
Pain Goals and Concerns
Managing pain occurs in the context of a life (determinants of health)
- Discuss my pain goals and concerns with me, including financial & emotional goals and concerns.
- Care about my life and what I’m trying to accomplish. I need pain relief to be a parent, a worker, a partner, a contributor.
- Chronic pain is expensive to manage when most health insurance benefit plans readily cover Rx, but only sometimes cover non-medication therapies. E.g. denial of physical therapy claims for on-going pain management relief. In an ideal scenario, health insurance would cover non-medication-centric pain management services as a matter of course, in parity with Rx coverage for the same condition.
- Refer patients to integrated behavioral health support to address coping skills in recognition of the chronic pain and depression relationship.
The bridge between evidence and personal expertise.
- Managing pain is a continual experiment. Nothing works every time you’re in pain, including medication. You need several proven choices.
- I try to keep a journal of how I’m feeling, what I’m doing, and what works as I manage pain. It’s really hard to do when you’re in pain.
- There are many therapeutic strategies that address the symptoms of physical pain and ways to interrupt the pain cycle and the experience of pain. I wish I were an expert on the subject. I know that there are some good answers available to people who struggle with chronic pain. I believe that people need a combination of coaching and knowledge, as well as hands-on treatment, to benefit from these answers.
Doctors and Managing Pain
- Doctors only know about drugs. They can’t admit they don’t know about anything else that might work.
- Doctors don’t have time for pain management. It can’t be done in occasional 20-minute visits.
- Most of my questions about pain management occur when doctors aren’t available, like the middle of the night.
- Technology is not a substitute for time and the relationship with my doctor.
- I think we need to make the WHO pain ladder (cancer pain) one outcropping of a multimodal pain strategy but start with nonpharm, reorienting the meaning of pain, and subsidize multimodal pain plans before surgery and after injury. As a pediatrician, pain researcher, inventor, innovator, and former procedural sedationist (I’ve pushed a LOT of fentanyl/propofol/ketamine), I’m much more interested in prevention and lowering the amount of opioids in circulation.
- We have an evidenced-based six-week peer-led pain self-management program that is widely used in the US, Canada and elsewhere. People can find locations near them by going to the Evidence-Based Leadership Council and clicking on the program locator on the upper right.
- As part of The Pain Companion book launch, I’ve been on a number of excellent radio and TV shows recently talking about life with chronic pain and how we might find greater ease and well-being.
- I recommend getting in touch with the British Pain Society. They are the organization that supports British Pain Clinics. The Pain Clinics in the UK have embraced some of the complementary and alternative remedies that are quite helpful with pain management. It is part of their standard protocol and clinic staff work with patients to implement these treatments.
Suggestions and Questions
- We should compensate doctors better for pain management discussions.
- Why don’t we use palliative care specialists when patients have chronic pain? Palliative care is not just for the dying.
- Pay post-op patients $200 to spend on a Pain Plan approved intervention if they don’t fill an opioid prescription.
- Give a list of evidence-based non-pharm options to every pre-op patient, and with every new opioid script.
- Isn’t there a start-up in compiling non-medication pain management resources by zip code?
- Why don’t we do more research about non-medication options for relieving pain?
Wow. Responses are still rolling in. Thanks to everyone. I am compiling these into a resource center that will include a pain management section. This is just the beginning of the conversation.
Julie Holliday, a reader of last week’s post, wrote:
I found this post very difficult to read. It sounded so interesting and I wanted to consider sharing it but just got lost in the dense sea of words. Could you consider making more paragraphs?_______________________________________________________________________
Ok, Julie. Here goes:
I seek best health for myself and others. I define best health as operating at peak performance as often as possible over time. It’s living the best life possible given my genetics and biology, social circumstances, and physical environment – all of which are either out of my control or I have limited control. I can’t change my genetics, but with great difficulty, I could move somewhere else (physical environment). With less difficulty, I could increase my mobility with a handicapped public transportation pass (social circumstances).
However, sometimes I can control my medical care and more often I can change my individual behavior. Still, these are not easy and require planning, experimentation, and effort. The problem with chronic illness is that the opportunity to be thoughtful and try stuff out can be rare and short. Read More
I took my foldable electric wheelchair solo on my trip to Philadelphia this week. My last solo wheelchair experience was in New York City in 1977 when I took a course at NYU’s Rusk Institute of Physical Rehabilitation. On the second day of the two-week course, I spent the whole day in a wheelchair by myself. It was terrifying. I got stuck in a pothole crossing Fifth Avenue during rush hour. The ground rules were, never get out of the chair. A homeless woman ran over and pushed me across before I got run over by the honking yellow cabs. On Tuesday, in Philly, I got stuck again in a small sidewalk pothole and a man, sitting on the curb with an “I’m homeless” sign came over and pushed me out. I saw him again on my way back from the restaurant. I handed him $10 and thanked him for helping me. He wouldn’t take it, I was just helping you out. I thanked him again and told him, you helped me and now I’m helping you. He took it. Read More
Everywhere I go it’s patient-centered this and patient-centered that. What does it even mean? It doesn’t take long for buzzwords to wear thin (patient engagement, silos, gig economy, NexGen). Don’t me wrong. I wholeheartedly support Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. I subscribe to Picker’s Eight Principles of Patient-Centered Care.
I also endorse the IOM (Institute of Medicine) patient-centered definition “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”
Once something becomes part of popular jargon and media I can’t help but re-evaluate what I mean and what others mean. When I’m invited to sit at a governance, design, operations or learning table I ask, What do you mean by patient-centered? Invariably, people assume what others mean and actually have different definitions (or often, none at all). The most common definition people say is, patients are in the middle of everything. Well, they’re not. I can’t even picture the design challenges of patients in the center of everything. I am in the middle of everything for me. That’s complicated enough. I’m learning that being self-centered means taking care of myself and standing up for myself. I’m responsible for doing the work to understand and communicate my preferences, needs, and values. I’m responsible for respecting myself. I’m pretty good at that, but I could be better. I need my whole team to understand their preferences, needs, and values, respect themselves and take care of themselves. I need them to keep up with the skills and knowledge of their specialty or role. Stronger team members make for better collaborators with more respect overall. I’m going to have better health in the long run when clinicians stand up for themselves and struggle with the oppressive business of health care. I’m better off when they are less burned out and have more time for me and themselves. I’m better off if they’re self-centered and take care of their jobs – knowing and communicating choices to me. Read More
Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.
I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics). The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.
As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:
- Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
- Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),
- Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),
- Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),
- People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
- Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),
- Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),
- Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),
Jeesh. Houston, we have a problem. Read More