A Letter to Pain Providers: 10 Do and Don’t Tips from a Chronic Pain Patient

After living with pain for 10 years, patient advocate Tom Bowen shares how empathy and education can overhaul the provider-patient relationship. It starts with understanding the long-haul journey that comes with pain care.

Dear Clinicians Treating Pain:

My chronic pain journey started over a decade ago. It took me years to accept my pain and find the tools, both medication-based and non-medication-based, that work to manage my pain. Since attending the Mayo Clinic Pain Rehabilitation Center, I’ve become a chronic pain champion, pain educator, and advocate in the hope of helping chronic pain patients live well, despite their pain.

Patients with chronic non-cancer pain aren’t the easiest patients you’ll see each day. Just like an onion, there are many layers to chronic pain, making it complex to treat. As you know, clinical signs aren’t always visible, curative therapies are often not successful, and comorbidities often exist.

Pain takes over our lives and makes us “paingry.” By the time we visit your office, we have likely worked with 10-plus other doctors and specialists and tried countless treatments, over a period of several years if not decades.

It’s no wonder, up to 79% of chronic pain patients are unsatisfied with their pain management.1

Below are 10 patient-centered communication tips that I have found over the years to work in developing strong patient-provider relationships, improving outcomes, and strengthening compliance with treatment plans.

Image: iStock (tortoon)Dear Doctor - common things pain patients wish you would - and wouldn't - do regarding labeling, explaining, stigmatizing, prescribing, and more.

 

Do’s: Things Pain Patients Would Welcome from Doctors

1.  Talk less. Listen more.

Chronic pain patients want to be heard. Take time to peel back the onion. Listen to our stories without interruption and without judgment. By listening to us, you can find the best ways to help us and determine our willingness to change our behaviors. While you may know the science behind pain, chronic pain patients are the true experts regarding their individual pain.

2.  See us as people, not as pain numbers.

As research continues to show, pain is biopsychosocial – a lived experience. We’re more than our physical pain and our pain is more than just a rating on a pain scale. A number doesn’t capture our struggle with pain. And it’s often this struggle that is worse than the pain itself – resulting in greater disability, higher depression, pain-related fear, and more healthcare utilization.2,3

So besides asking what our pain level is during a particular visit, ask us open-ended questions about how pain is affecting our lives: in terms of what we do, our sleep, our mood, and our relationships. Ask us what our lives would look like if we didn’t have to worry about pain. And help us rediscover our values by asking what’s important to us and what makes us happy.  

More on function and changing pain scales.

3.  Choose your words with compassion.

What you say and how you say it can affect our pain journeys and the amount of suffering we may experience along the way.  Explain things clearly and simply. Use stories and metaphors to illustrate complicated concepts and try to avoid medical jargon.

Steer clear of using language, including body language, that could unintentionally cause us more despair.4 Phrases like “bone on bone, degenerative disease, you’ll never be normal, and you’re the worst case I’ve ever seen” can cause us to become guarded, withdraw from activity, and catastrophize more.

But, by involving us as equal partners in the discussion and making eye contact, we will better understand what is happening to our bodies and will be more likely to trust in – and adhere to –  your treatment plan.

4.  Help us make sense of their pain.

Chronic pain patients want acknowledgment that our pain is real. It is all too easy for us to ruminate on our symptoms, searching for a cause and a solution. We often jump on what I call the pain merry-go-round – visiting all types of healthcare providers, going through all sorts of tests and interventional procedures, taking all sorts of pills, and spending countless hours reading about our unique conditions on the Internet.

Talk with us about how pain works and explain why we feel the way we do. Show us how some pain becomes a chronic condition by itself, even without an identifiable tissue injury or underlying medical problem and talk with us about central sensitization. Explain how scans and other imaging doesn’t always show or measure pain, and how the pain we feel doesn’t necessarily mean that ongoing damage or harm is occurring.

Finally, ask us if we understand what you’re saying and if we have any questions. The time you spend on this type of pain education can improve our coping ability and physical performance, and reduce our catastrophizing and disability.5,6

5.  Switch from a “find it, fix it” mentality to a “management” mentality.

Once pain shifts from acute pain to chronic pain, so too must the treatment approach shift from diagnosis and cure to long-term biopsychosocial pain management that focuses on improving function and quality of life.7-9

Share that while there is no magical cure for chronic pain, we can still live well. Help us to identify biopsychosocial therapies that may help us maximize the probability of treatment success.

We want to know about cognitive behavioral therapy, mindfulness, relaxation exercises for flares, lifestyle habits that matter (eg, sleep and physical activity), and the importance of pain acceptance while adapting to a new normal.

Teach us about any unhealthy pain-related behaviors we may have that may be holding us back from improvement. Talk about the importance of pacing and graded movement when we try exercise (start low, go slow). Empower us by helping to change our expectations and to understand the importance of self-responsibility.

But most importantly, give us hope, and praise any positive behaviors we show to help build our self-confidence and our self-efficacy.

6. Offer information and referrals when appropriate.

We crave clinicians who are familiar with the variety of resources available to chronic pain patients and who have connections with multidisciplinary, collaborative providers. We are happy to read resources and be referred to (note, not passed off to) specialists who may be able to help us. We are open to pain rehabilitation and want to understand how to use medications safely and treat comorbid conditions simultaneously.

7. Know that we respect you and need you.

We come to you with an inherent level of trust and a real need for help. You’re the person who we turn to for answers. By collaborating with us, you’re the one who can help us move forward in our quests to live better.

 

Don’ts: Things Pain Patients Wish Doctors Would Avoid

1. Don’t label patients.

Chronic pain patients are often labeled and stigmatized as being difficult, lazy, weak, complainers, drug-seekers, doctor-shoppers, or even flat out, liars. Avoid using labels like these around both us and your team and make sure everyone in your practice is on the same page.

Remember, it’s our conditions and situations that can be challenging or difficult, not us. We simply want a path forward.

2. Don’t tell patients the pain is “in our heads.”

While the brain produces pain as part of the body’s flight or fight system, be careful not to tell us the pain is in our heads. When you say that, we hear the pain isn’t real. You come across as dismissing the pain to only psychological issues. And it feels like the pain is our fault.

Instead, validate our pain experience – assure us the pain is very much real and explain how the brain can produce pain sensation no matter how or where we feel it.

3.  Don’t tell us to just “live with the pain.”

We don’t want to live with pain. Living with pain, for lack of a better word, sucks.

Involve us in creating our treatment plans. Help us set S.M.A.R.T. (strategic, measurable, achievable, realistic, timely) goals, such as “go for a 20-minute walk 4 days a week for the next month” or “volunteer 10 hours a week at the community center for the next month” or “do deep breathing for 5 minutes 3 times a day for the next month.” You can, in turn, use these goals to measure treatment outcomes, celebrate our successes, and build our self-efficacy.

 

Thank you

Thank you for listening and for trying to incorporate these communication tips into your daily practice. It’s as simple as listen, validate, empathize, educate, and involve. I’m convinced that with these techniques, you’ll have better patient interactions while helping us get our lives back.

Sincerely,

Tom Bowen, Patient Advocate

A special thank you to the members of my Chronic Pain Champions-No Whining Allowed Facebook group; many of their stories and suggestions on how to improve provider-patient interaction have been integrated into this piece.

 

 

Updated on: 08/10/20
Continue Reading:
Stop Whining and More No-Nonsense Tips from a Chronic Pain Champion
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