The Patient’s Perspective: Whole Person Care Addressing Chronic Pain

September is National Pain Awareness Month. To bring awareness to the importance of individualized, multidisciplinary, and multimodal approaches to pain care, we posed questions about life with chronic pain and effective partnering with healthcare providers to two patient family advisors.

Rosie Bartel (RB) is a Patient Partner who deals with both acute and chronic pain. Rosie uses her lived experiences to inform healthcare professionals and other patients about how to effectively interact with patients, their families and caregivers about pain.

Janice Tufte (JT) is a Patient Partner in Quality Improvement and Health Systems Research. Janice lives an active life with chronic pain. She is also involved at an international level with projects addressing the intersection of pain and social drivers of health.

  • Is it possible for a person to live a happy, fulfilling, and productive life and experience chronic pain at the same time?

RB: YES! I am living proof of that. Although I experience chronic and acute pain, my mind is not affected, and that is a gift. I am reluctant to use opioids because they do affect my ability to think clearly.

JT: Yes, I believe managing my chronic pain with multiple pain-relieving modalities contributes positively to a better quality of life. This is not always easy to do and pain remedies are different for each person, which is why it is important for providers to recognize the unique abilities, preferences, and priorities of each patient.

  • What is the value of having a health care provider who includes the patient in identifying a plan of care for pain?

RB: I believe my providers understand pain and I understand my body, so together we can create the best plan of care for me.

JT: Providers that take the time to better understand what issues are impacting an individual patient’s pain will better understand how best to treat them. Shared decision activities that include a patient’s known social driver information will assist in the development of a tailored, individualized approach for better outcomes.

  • What aspects of your life are impacted by chronic pain, and why is it important for your healthcare provider to understand the impact?

JT: In the last year I have experienced a decline in my physical mobility, which concerns me. I know if I do not take my usual daily walk, I will experience increased pain. As I age, I have learned the value of paying attention to my pain and the importance of addressing it in a timely and effective manner to manage any impact on me. A positive mindset can help immensely with chronic pain. Finding humor in the little things in life also helps with my overall sense of wellbeing.

RB: I don’t participate in family or friend events often. They don’t understand why I can’t “do it all.” Pain affects my sleep the most. Sometimes I lose focus or can’t think straight because the pain is so bad. The worst pain I deal with often is phantom pain due to amputations. I have had to find ways to distract my mind. That might mean calling someone who understands that I might just need to talk or laugh to redirect my thoughts.

  • What are the questions you like to be asked by a healthcare provider about your experience of pain?

JT: What type of pain bothers you the most? Can you describe specific types of pain that affect your sleep and/or daily activities such as cleaning your home or attending social outings?

RB: I don’t like being asked for a single pain number. Chronic pain is more complicated than that. Questions I prefer being asked include:

  • Are there activities you can’t do because of pain?
  • What activities are hard to do because of pain?
  • Have you skipped any planned activities because you don’t feel up to interacting with others?
  • What does the pain feel like: stabbing, sharp, burning, or something else? 

JT: I am a senior and I do not drive, I have low vision and live alone. These social drivers impact how I manage pain. When a provider assumes they already understand the self-management practices that work best for me, I tell them about possible barriers to the course of action they are recommending. I expect we will develop a plan that works best for my situation, and it will be a step in the right direction for achieving mutually agreed upon health outcomes.

RB: I have learned the hard way that when a provider isn’t hearing me, I may need to find another provider. When my provider and their team know my story, my pain tolerance level and they follow my lead when I request a change in my plan of care, my health outcomes improve.

  • When a healthcare provider takes a few minutes to explain how a medication works in your body, what is your reaction?

JT: I appreciate it!  I want to understand how a medication works, the preferred method of administration and possible side effects. I saw a clinician who first recommended a medication for chronic pain. After the provider asked some questions and I shared adverse effects I had experienced from another drug I had taken, the provider mentioned that the new drug could cause the same adverse effect, so they did not prescribe the drug. Listening matters!

RB: I appreciate when a healthcare provider takes the time to explain how a medication works because I have had drug reactions to a variety of drugs (e.g., antibiotics, pain medications, anti-nausea medications). I find it very useful when a provider explains to me that it isn’t a drug allergy but an abnormal reaction to a drug. It is a case of “knowledge is power” and for me this knowledge gives me comfort.

  • How would you respond if a physician told you “… fewer medications for your health condition are better than more”?

RB: I would say tell me more, so I am able to make an informed decision. For many years I believed more medications meant better care. When I was young, I had a neurologist, who treated my headaches with excessive pain meds, including opioid injections in the emergency room. I learned more opioids weren’t better – they almost made me feel like a zombie.

JT: I might have been offended before I became involved with the Choosing Wisely campaign. Patients want to be in control of their lives and are hoping for professional medical advice. Some patients might be offended if told less medication is better. I now know that less may be better as all treatments have risks and all medications have potential side effects.

  • Is there a role for the patient in the management of their own health?

JT: Chronic pain is patient centric. Patients should have the opportunity to recognize how best to manage their pain. It seems everyone has advice on how to manage pain, though individuals experiencing chronic pain should try various treatment options such as movement in moderation, modifications to diet, managing sleep, more/less socializing, medical interventions like PT, steroid injections or perhaps surgery.

RB: Patients have a role in the management of their overall health, which includes management of their chronic pain. No one knows what you are really going through, and well-meaning people often offer suggestions and resources they believe will help you. You must learn to trust your body and yourself.