If we are in a battle with chronic pain, we are not winning it. Rates of chronic pain with its associated suffering and disability have never been higher, yet our society is spending more than ever to diagnose and treat the causes of chronic pain and is in the midst of an opioid epidemic. Over half of American adults report pain in the past 3 months, and over 10% report daily chronic pain. The number of years lived with disability is increasing for the average American. Musculoskeletal pain conditions are among the top causes of disability. Low back pain causes more global disability than any other condition. Neither focusing on repair of the broken part nor reducing pain scores has reduced the population burden of chronic pain.
The gap between effort and progress in chronic pain care, and chronic illness care more generally, can be bridged only through more effective engagement of patients in care processes and care goals. Neither purely objective disease-focused goals nor purely subjective symptom-focused goals have significantly reduced the population burden of chronic illness. I believe the solution lies in a truly patient-centered approach that engages the patient as the agent through which health care is delivered and by which health is achieved.
Objective Goals for Chronic Pain Care
Back pain is one of the most common chronic conditions presented to physicians and has many causes. However, for approximately 90% of individuals with chronic back pain, the specific cause cannot be identified by any scientifically valid means. This makes back pain a great unsolved problem for the traditional biomedical model, which urges us to direct treatment to the causes of symptoms rather than to the symptoms themselves.
Our health care system spends ever more money to find the broken part that causes patients’ back pain. Clinical guidelines now recommend against routine lumbar spine imaging for patients with nonspecific low back pain, but imaging remains popular. Imaging can be distracting; disc disease is commonly identified on MR imaging of patients with no back pain. Six randomized trials of computerized tomography (CT) or magnetic resonance (MR) imaging have failed to show any benefit to patients with axial back pain in either pain or function, over either short or long term. Back pain treatments focused on repair of broken parts have produced a similar story of failure. Medicare has recorded recent large increases in spinal fusion surgery rates and smaller increases in other types of back surgery without any population-level improvements in patient outcomes or disability rates.
Subjective Goals for Chronic Pain Care
The notion that a 0–10 pain intensity score is the best measure of the need for pain treatment arose in the treatment of cancer pain and spread to the treatment of chronic non-cancer pain. In 1996, the American Pain Society introduced the idea of pain as the fifth vital sign. In 1998, the U.S. Veterans Health Administration (VHA) enacted a national strategy to improve pain management that required providers to assess patients’ pain intensity, as measured on a 0-to-10 Numeric Rating Scale (NRS), and record this in their electronic medical record. In 2000, The Joint Commission issued standards for pain management that encouraged organizations to use quantitative measures of pain. By 2005, quantitative pain assessment was occurring in over 90% of the clinical encounters across the VHA. Yet multiple studies failed to show that this practice improved pain treatment in the VHA.
This quantitative approach to pain assessment was also applied to treatment, through the notion that treatment should be “titrated to effect” on the NRS pain intensity level. This principle was developed for treating acute and cancer pain, but then extended to outpatient treatment of chronic non-cancer pain (CNCP). Because opioids have no prespecified dose range and may produce rapid reductions in pain intensity, they are uniquely suitable for titrating to effect — at least in short-term use. The idea that opioids should be used at whatever dose produces a satisfactory reduction in pain intensity has helped lead to a quadrupling of opioid prescribing for CNCP since 1999. Unfortunately, opioid overdose deaths have also quadrupled. More than 183,000 Americans died from a prescription opioid overdose from 1999 to 2015. There are one and a half times more drug overdose deaths in the United States than deaths from motor vehicle crashes. Rates of non-fatal overdoses and emergency department visits, and of opioid abuse and addiction, have seen similar dramatic increases.
Integrating Goals for Chronic Pain Care
Recent responses to this opioid epidemic have focused on the risks of long-term opioid therapy and the lack of evidence for its effectiveness. But clinicians may be trapped in a deeper error about the goals of chronic pain care. Our foremost duty to patients with chronic pain is not to reduce their pain intensity, but to improve their health. Titrating opioid doses to a pain level may reduce pain and at the same time make it harder for a patient to live his or her life. Pain levels may decline initially, but so might physical, social, and emotional function.
Similar problems can result from correcting anatomical abnormalities found on imaging in patients with chronic pain. A herniated disc can be removed through a laminectomy or a spondylolisthesis corrected through a lumbar fusion, and yet the patient’s back pain continues. The MRI image is now improved, but the patient’s life has not improved.
Many clinicians and policymakers have noticed these problems with wholly subjective or wholly objective criteria for success in chronic pain care. They have responded by demanding that chronic pain treatments improve both subjective pain and objective function before they can be deemed successful. It is a common strategy in chronic illness care to merge objective and subjective outcomes into composite concepts like health-related quality of life (HRQL), but this leaves crucial questions about defining a successful outcome unanswered. Which is the more important outcome, reducing pain or improving function? If patients with chronic pain claim that pain reduction is the more important outcome, by what authority do we overrule them? If functional improvement is instead more important, as many providers now claim, is the most important functional improvement physical, cognitive, social, or emotional? Moreover, who judges whether functional gains are significant, and by what standards?
Nothing short of a comprehensive theory of patient health is needed to guide us.
A Truly Patient-Centered Approach to Chronic Illness Care
Patient-centered care is commonly defined as care consistent with patient preferences. But this definition is inadequate. Simply because a patient prefers an increase in his opioid dose to reduce his pain level does not make this the right treatment choice. It is surely a good thing to reduce pain, but it is neither the only good thing nor the most important thing, even if patients desire it. The primary duty of health care professionals is not to satisfy patient preferences (despite perverse incentive payment schemes that instantiate this idea), but to promote patients’ health. This is why pediatricians should not prescribe antibiotics for colds despite anxious parent requests, and why oncologists should not prescribe chemotherapy that will neither extend nor improve a patient’s life. Health professionals should not accede to patient requests that compromise their health.
So what is the goal toward which chronic pain care, and indeed chronic illness care generally, should aim? What is a truly patient-centered concept of health that is not simply the satisfaction of patient preferences? I propose that it is helping a patient live his or her life as fully as possible. Specifically, clinicians need to promote the patient’s capacity for personally meaningful action. A patient becomes healthier when she is better able to pursue and achieve her vital goals. We seek to help her do and be the things she values the most. These can include work, play, relationships, art, or whatever it takes to allow her life to move forward. This sense of health is patient centered because life must move forward on the patient’s terms. It is patient action rather than function that is the goal of clinicians, because as persons, patients perform actions, not functions.
This patient-centered health is not a feeling of well-being or of capability. It is capability itself — the capacity for personally meaningful action. This power or capacity is not a purely objective, observable property of bodies. Nor is it a subjective feeling, available only to introspection. It sits between these and cannot be reduced to an impersonal observation or a personal feeling. Measurement of this capacity for action is not simple, because it must be individualized according to patients’ goals. Assessment of patients’ capability for action requires integration of self-reported measures (e.g., of self-rated health), observations (e.g., of physical and social capacity), and third-party reports (e.g., of social participation).
When patient action is the central goal of treatment, clinical interactions and interventions are directed at the restoration of patients’ capacity to define and achieve life goals through action. In my new book, The Patient as Agent of Health and Health Care (Oxford University Press, 2017), I argue that the patient with chronic illness must act as the agent through which health care is delivered and by which health is achieved. Providers need to elicit and promote patients’ life goals, which provide the energy for patient action and are the proper goal for treatment. This is where engagement with the patient who has chronic pain must begin: with his passions, with those things worth doing for their own sake, with the things he loves in life. Reviving these goals is the first step toward reviving the patient. Restoring the capacity for meaningful action is what transforms someone with chronic pain from a patient back into a person. Pain reduction may be the first step, the last step, or not involved in this process.
The German writer and statesman Johann Wolfgang von Goethe famously claimed that he could not recall a single day in his life when he had not experienced back pain. Goethe thereby reminds us that it is possible, if difficult, to have an exceptionally productive life despite constant pain. Relieving pain is a valuable and compassionate act. But relieving pain can be undesirable if life is more diminished by the pain treatment than by the pain itself. The proper balance between pain and pain relief cannot be understood in terms of pain only; some reference to the capacity for activity and life is necessary. Cessation of disease or of symptoms is not the goal of life. Life is doing things, not simply being pain free.
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