I feel terrible – but I can’t explain how it feels!

Listen to an interview with Dr. Henriette Poulsen at Picture of Pain Podcast

No person can feel exactly how another person feels – empathy can only get you so far. No matter how much training in communication you might have and how much attention and time you spend listening to another person you will never fully be able to grasp all the aspects of the other person’s inner experience. By listening to the other person you might get an idea, a feeling of understanding. But what you feel will always in some way be referenced to your own experiences. By consciously and subconsciously observing the other person’s body language you might add another aspect to the understanding of the situation. However the perception will always be interpreted in your own complex framework of feelings and expectations – and as such the other person’s feelings could be misunderstood. These be the feelings about religion, political views, love, child rearing – or pain.

Communicating the Feeling of Pain
When it comes to pain this challenge in communication is extremely important. Although it is a terribly present and at times all consuming sensation to the sufferer, no doctor, nurse or even spouse can ever feel it. And yet it is most often another person than the sufferer who holds the key to the alleviation of the pain.
Feeling understood, feeling accepted, feeling heard and feeling trusted are essential feelings for most people in many aspects of life. When it comes to suffering an illness, this in some way has its own healing power. Likewise mistrust and feeling denied or dismissed might increase the suffering. However when a sufferer of pain and a person with the power to prescribe drugs have to communicate the nature of the available pharmacological treatments of pain also has an important impact on communication. The ghosts of addiction and side effects are nearly always present in the consultation room: The doctor has to trust the patient to prescribe the medication – and the patient has to trust that the doctor REALLY understands the problem in order to risk the possible side effects of the treatment.
The latter has recently been documented in a study by Rosser et al who found that general nonadherence to pain medicine prescribed to patients with nonmalignant chronic pain was associated with greater levels of mistrust in the prescribing doctor, greater concerns about potential side effects and lower levels of concern about withdrawel of medication1.
The concerns about addiction are complicated by the fact that chronic pain and addiction might co-exist. In a study by Boscarino et al it was discovered that 34,9% of 705 chronic pain patients fulfilled the diagnostic criteria of the DSM-5-opioid-use disorder (which is replacing the DSM-4 opioid dependence criteria)2

Pain can be Beyond Words
Sometimes the sufferer might not even be able to find the WORDS to explain the pain. This is eloquently discussed by US MD David Biro in his book “The language of pain”3 from 2010 and also in a recent essay in the journal Palliative and Supportive Care4. Both are very well written and can definitely be recommended for a broadened knowledge of the topic. He suggests a new definition of pain: “Pain is an all-consuming internal experience that threatens to destroy everything except itself and can only be described metaphorically” . An interesting aspect of this definition is that it also includes what one might call psychological pain as felt for instance by a person with depression, a grieving person or even a person, who doesn’t feel understood or accepted. In the book the use of metaphors is thoroughly illustrated with excellent examples from literature and art.
It being difficult for the doctor to understand the pain and for the patient to explain, some might tend to trust the objective and clearer findings of the clinical examination, the x-rays, scans and blood samples more than the confusing and time consuming words uttered by the patient. But especially in some persistent pain syndromes these objective findings might be sparse, yet the suffering of the patient no less. This attitude can be devastating to the treatment of the patient.

Using the DoloTest® to Draw a Picture of Pain
Listening to the patient and trying to help him or her find the words to describe the pain, as argued by Biro, is essential, but might prove difficult. In my experience and opinion the DoloTest® draws a different kind of picture of the patient’s pain which can be understood by both the patient and the doctor. This in a way which very well compliments and might even catalyze the creation of the metaphors sought by Biro.
The pain itself is, as one might say, reduced to an X on a VAS-line. As pain is what most often has let the patient to the doctor’s office, this is where the test starts. The other 7 lines represent both functional and psychological aspects of health related quality of life. These are cleverly organized so that those mainly associated with function or the patient’s ability to engage in everyday functions are above the horizon whereas those mainly associated with the limitations of the patient’s inner wellbeing are below the horizon. The need for the patient to decide where to put each mark on the lines may lead to thoughts and words, which on their own can broaden the patient’s and the doctors’s common understanding of the challenge.
The true magic occurs when all the marks are made and lines are drawn to connect them to create the DoloTest® -profile. All of a sudden it is clear to the patient as well as the doctor that what was at first described as “the pain” in reality is a complex challenge, which affects different parts of the patient’s life to a varying degree. They look at the profile, reflect and use the picture as a fundament to build a common understanding of the problem. The profile also represents an easily understandable common goal – the area has to decrease and not increase with the treatment initiated. If most of the area is located beneath the horizon, talking about depression, anxiety and sleeping disturbances instantly makes sense.
One might argue that some aspects of quality of life are missing from the test. But for the sake of the simplicity needed to create the easily understood picture of pain as well as timesaving in a busy clinic it is important that the number of aspects included is limited. How the included aspects were chosen can be read in the validation article5
The DoloTest® does not claim to define or express the quality of all the aspects of the patient’s pain. In a sense its function is more as a photo negative to Biro’s definition of pain. It makes it possible to monitor something which true nature is extremely difficult to define by looking at the way the pain affects the quality of life and not as much the pain itself. It differs from most other HRQoL tools by being completely based on the patient’s SUBJECTIVE assessment of the situation; this to ensure that it is how the patient feels the impact of pain that is illustrated.
What was before only to be found in the patient’s perception is now illustrated on paper. And albeit in a simplified way – as a stick man representing a complex human figure – this picture, which can be shared and understood by the physician and patient alike increases the mutual trust and understanding facilitating shared decision making, increasing adherence and making early discovery of sign of addiction possible. The DoloTest® indeed creates a strong foundation on which to build a resilient doctor-patient relationship.

References
1. Rosser BA et al: Concerns about medication and medication adherence in patients with chronic pain recruited from general practice. Pain 152 (2011) 1201-1205
2. Boscarino JA et al: Prevalence of Prescription Opioid-Use Disorder Among Chronic Pain Patients:- Comparison of the DSM-5 vs. DSM-4 Diagnostic Criteria. Journal of Addictive Diseases 30(3) 2011: 185-94
3. Biro D: The Language of Pain – finding words, compassion and relief. W. W. Norton & Company, New York 2010 ISBN 978-0-393-07063-7
4. Biro D, Redefining Pain. Palliative and Supportive Care (2011)9. 107-110
5. Kristiansen K et al: Introduction and Validation of DoloTest®: A New Health-Related Quality of Life Tool Used in Pain Patients. . Pain Pract 2010, Sep;10(5):396-403.

Kim Kristiansen, M.D., & Henriette Poulsen, M.D. (2011). I feel terrible – but I can’t explain how it feels! Picture of Pain Blog : http://blog.dolotest.com/2011/08/18/i-feel-terrible-–-but-i-can’t-explain-how-it-feels/