Results from TPC’s quiz, What’s Your Pain IQ, was quite telling. Over half of the respondents did not know the correct definition for myalgia. The correct answer is muscle pain. Over a quarter of those who took the quiz, lost points when they designated that they either did not read or threw away educational materials given to them by their healthcare provider. This trend was repeated when some selected that they would not go further and seek out more information or ask for a referral to a new specialist once they were told there were no more treatment options for their pain.
Living with pain is a challenge, perhaps one of the biggest challenges that people face in their lives. If knowledge is power, why are some patients giving up so easily? Or, as healthcare professionals, are we failing to inspire those living with pain to be warriors in their pain care? As we learn more about our nervous system—as the science of pain grows—as new pain treatments are discovered—are we failing to teach, share and motivate others in the importance of knowing?
Here are some possible questions I thought of that might be influencing someone with pain. Let’s see what you think:
- Do you find that you are hesitant to ask questions of your physician, nurse practitioner, physician assistant or others?
- Are you afraid of what you might hear?
- As you sit in front of him/her, half naked in paper drapes, do you feel vulnerable?
- Does (s)he seemed rushed so that you feel his/her time is more important that your wellbeing or peace of mind?
- Is the verbal or written information shared with you too discouraging to hear or too difficult to see in writing?
- Are the words spoken to you presented in unfamiliar terms or in accents that you cannot understand clearly [and you are too polite to admit]?
- Have you already given up on finding any glimmers of hope which might ease your burden of pain?
- Are you in a positive patient-provider relationship?
- Did you come to your appointment alone, without your pain buddy?
- Is the practice setting absent a nurse as part of the care team?
Why did I ask that last question? As a nurse, I learned very quickly that one of my primary roles is to interpret what medical professionals are saying to the public. I have helped others better understand “doctor speak” through repetition using words that the average (non-medical) person understands. Here is where the concept of “teach back” works too. Once the information is shared in a simpler manner; the person listening can repeat back what they heard. Gaps in information and understanding can be quickly identified and corrected. I know this method works as it helps me remember too.
I also think it is a good time to apply what has been shared before from this blog, Comfort or Chaos: Are You in a Healthy Relationship:
The 4 C’s to Effective Relationships
Being in relationship with family, friends, colleagues, significant others, and spouses [as well as your healthcare team] feels good when you treat each other with respect and value your differences. Additionally, healthy relationships incorporate and follow the 4 C’s to effective relationships:
- Conflict Resolution,
Creating and nurturing a healthy relationship takes time (i.e., patience and pacing), no matter if with a family member, friend, colleague or potential partner. Taking it slow and allowing time to get to know one another and what each other value is important. Having key conversations about the relationship as it evolves along the way encourages acceptance and understanding. After all, each person grows as life is experienced and lessons are learned along the way. A healthy relationship must remain flexible and adapt to change.
Lastly, I think it is a good idea to reflect back on the role of being a person living with pain, in regards to patient-centered care. In Pain Assessment 101, Cowen lists three key tips in being an empowered patient. Under Tips for the Person With Pain, it states that your job is to work with your pain care provider and “Get it DUN”:
- Get a specific Diagnosis
- Understand Your Treatment Plan
- Find out the Next Steps.
After all, living with pain is a journey, not a sprint. It takes hard work; work that many of you have shown GREAT strength in achieving each and every day. Each day is a chance of finding a new clue of how to ease that pain and take back a part of life previously stolen from you. Be that warrior you already are, learn as much as you can about your pain condition, never take no for an answer about pain treatment options and surround yourself with others who inspire you to be the best you can be. Nurture yourself, your hope and the importance of knowing because you are so worth it!