Guidelines for Medical Professionals

By Susan Dudley Gold in collaboration with Samantha Shepard, UNE med student who joined our pain support group to help deal with her own chronic pain.
  1. Put your laptop down—I am a person first, not a patient, please be present.
    Eyes on Mama. Your computer is a barrier to conversation and trust, which requires eye contact, reflective comments, questions, etc.
  2. Consider me a partner in the treatment plan.
    I am the expert when it comes to my body.
    Please hear me when I tell you what is going on in my body. I may not use your vocabulary, but I am the expert on my body.
  3. Treat me with every tool in your toolbag.
    I rely on your expertise, the same way I want you to rely on my expertise.
  4. Share ideas and communicate with each other interprofessionally.
    Please don’t spot treat me.
    I am a whole person, not a collection of parts. A physical therapist was the professional who finally got me on the right track. My endocrinologist later apologized to me for not following up on my pain issues, even though that wasn’t his specialty. If even one of the many health care professionals I saw during almost two years of pain had explored further, I might have avoided having to have four joints replaced.
  5. Keep me actively engaged in treatment—don’t let me lose my way.
    Sometimes you’ll have to do some detective work to find out what’s going on with your patient. Doctors may need to push to get specifics. Ask how the pain is affecting the person’s everyday life. I couldn’t sleep more than 2 hours at a time before pain from my shoulder woke me up. It was more than just a sore muscle!
  6. Don’t become disappointed or frustrated when I don’t get better or continue to make gains, you didn’t do anything wrong and neither did I.
    If you are frustrated, just think how frustrated I am.
  7. Don’t just listen, hear me. Get to know me as a person.
    Any treatment protocol needs to reflect my personal goals and values and be designed with my quality of life in mind.
    I needed to have a sharp mind in order to do my job as a writer, editor, and graphic designer. Because of that, I chose not to use opioids for pain; instead I relied on other ways to relieve pain: distraction techniques (music, meditation, laughter), massage and hot tub therapy, and other methods.

  8. One of my goals in preparing these guidelines is to improve communication between patients and their healthcare providers and to involve patients in their own care. Quality of life has to be a key ingredient in any treatment plan. That means finding out what matters to the patient. Instruction in how to accomplish that needs to be an integral part of the healthcare curriculum.

    Also, the system needs to change to allow patients to follow up with the doctor or a member of the medical team so they can ask questions they forgot to ask during the initial office visit.