Pain Management Choices: One Person’s Point-of-View

Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…).  Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.

Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.

Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below.

In brief, this is one person’s point-of-view attempts to bring real-world experience to the clinical decision support (CDS) industrial complex. Managing pain and life is complicated and varied. Only a small proportion of decisions/choices involved are medical. Most are function, lifestyle, relationships, safety, and more. Many people in pain would prefer non-drug solutions, but medical professionals are not usually experienced or expert in non-drug, non-procedure solutions, and our illness-care systems are not suited to providing non-drug, non-procedure solutions. And frankly, many people only want drug, procedure solutions. The time allowed for patient-clinician interaction is just not enough. The money we spend on taxes and benefits (also known as insurance) isn’t usually available for non-drug, non-procedure solutions. Nor are research dollars.

People in pain manage a continual experiment whether they know it or not. What works, in which circumstance? Nothing works every time. We need multiple solutions in our toolbox. Describing pain is frustrating. The 1-10 scale just doesn’t do it.

My recommendations to the attendees included:

  1. Step out of the clinical, academic, technology frame – we are muscle-bound by our ‘expertise’ and need to be nimble
  2. Promote time for and trust in clinical relationships – tech will not replace them
  3. Listen for and study non-medical, non-biological solutions that work for somebody – too much research is looking in the rearview mirror. we don’t know what we don’t know
  4. Influence those allocating $$ to pay for non-medical, non-biological solutions
  5. Everyone at the Center of Care needs just-in-time information
  6. Design for variation in people, life flow, and workflow – there is no ideal model
  7. Invite people at the center of care to sit at the tables of governance, design, operations and learning for healthcare delivery, policy, business, technology, and research
  8. Enable personal, clinical, and technological continual learning the experiment doesn’t end with the action, the script, the study, or the app

Thanks for reading and listening.

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Danny van Leeuwen

Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health

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