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.
Photo by Jeremy Bishop on Unsplash
this is amazing. thank you.
Thank you for this exceedingly well-written piece! We need more voices speaking out about what true pain sufferers want to treat their pain, and how they use opioids. Doctors have gone overboard with the ‘careful with opioid prescriptions’ message, and it’s unrealistic, leaving many who truly need them in a lurch.