Purposeful Shared Decision-Making in Caring for and with Patients with Chronic Pain Receiving Opioid Therapy

Abstract

CDC guidelines for prescribing opioids for chronic pain recommend that patients and clinicians engage in shared decision-making (SDM), a practice often described as clinicians working with patients to find treatment options that match patient preferences. Some experts have argued otherwise given limited efficacy of opioid use for chronic pain, the potential effects of long-term opioid therapy on patient’s decision-making capacity, and the societal consequences of opioid diversion. Chronic pain care involves reaching a shared understanding of how the patient’s pain affects living and how to change this situation. The conversation to achieve this shared understanding and to change the problematic situation of the patient is called Purposeful SDM. Purposeful SDM as a method of collaborative care is a useful and usable framework for patient-centered chronic pain care with or without prescription opioids. Chronic pain or long-term opioid therapy do not render patients unable to participate in Purposeful SDM. And yet, some regulatory tools intended to make opioid prescribing safer, when used punitively, may undermine both the trust that sustains the patient-clinician relationship and the possibility of SDM. There is considerable nuance in chronic pain management and opioid prescribing decisions. The Purposeful SDM framework is based on and contributes to a collaborative, non-punitive relationship between patient and clinician to make chronic pain care fit while avoiding unintended harm from unilateral treatment decisions.

The use of prescription opioids for the management of chronic pain is controversial. Patients can be harmed by opioid overuse—through opioid-related adverse effects including respiratory depression or the development of opioid use disorder (OUD)—and underuse—through unwarranted withholding of opioids. Despite the effectiveness of opioids for the treatment of acute pain (e.g., post-surgery), their analgesic benefits in chronic non-cancer pain are less clear.^1,2 Yet, opioid prescriptions increased dramatically in the 1990s and early 2000s, with a substantial portion prescribed for chronic pain management.³ Given these trends and associated increases in opioid-related overdose deaths,^4,5 the US Centers for Disease Control and Prevention (CDC) released opioid prescribing guidelines in 2016 targeted towards primary care clinicians and other clinicians providing chronic pain care.⁶ The release of these guidelines was followed by large reductions in opioid prescribing,⁷ including in people with cancer.^8,9 These reductions raised concerns that the guidelines were misapplied and may have contributed to increased suffering among patients in pain.¹⁰ Undoubtedly, the issue of opioid prescribing is complex. Clinicians are faced with regulatory pressures and fear of licensure repercussions with any perceived missteps in opioid prescribing.¹¹ Patients are increasingly asked to jump through regulatory hoops (e.g., pill counts, urine drug tests, signed agreements), creating the perception that they are doing something wrong or even criminal in their pain care.¹² Hence, efforts to curb opioid prescribing, although rooted in patient safety, have had the unintended consequence of creating an adverserial and transactional relationship between clinician and patient.

In response to these concerns, the CDC updated their clinical guidelines for prescribing opioids in 2022.¹³ CDC recommends that patients and clinicians engage in shared decision-making (SDM) to arrive at individualized opioid prescribing for chronic pain. Some experts, however, argued that SDM plays, at best, a limited role in the care of patients facing complex situations such as long-term opioid prescribing.^14,15 We argue that to best understand the role of SDM in opioid prescribing, it is helpful to reframe SDM as a method of care.¹⁶

When patients and clinicians collaborate to determine the best next steps in care, they participate in SDM.^17,18 This participatory approach stands in contrast to unilateral approaches by which clinicians ask patients to decide alone or clinicians make recommendations or treatment decisions. The updated CDC guidelines, following the pattern of most guidelines, particularly emphasizes SDM when there is no clear best treatment option, invoking a traditional SDM approach that encourages patient involvement in deliberating about the relative merits and disadvantages of available options in light of their preferences, personal views, and priorities.¹⁹ In practice, traditional SDM occurs infrequently and may even be seen as optional, a nice-to-have “add-on” to usual care,²⁰ or as largely inappropriate when patients have limited capacity to make decisions.²¹ Employing observer-based assessment of patient-clinician interactions across 33 studies in various clinical settings, the mean (standard deviation) score of patient involvement in clinical decision making was 23 (14) out of 100, with higher scores indicative of greater involvement.²² Barriers that impede broader SDM utilization may be clinician-related (e.g., time constraints, lack of training, biases), patient-related (e.g., fear, distrust, lack of readiness to participate), or systemic (e.g., lack of organizational support, gaps in care coordination, policies, and regulations which promote transactional care).

Experts challenging CDC recommendations to use SDM to individualize opioid prescribing argue that long-term opioid prescribing affects not just the patient but society (through, for example, opioid diversion), is an ineffective treatment for chronic pain, and impairs patient decision-making capacity.^14,15 They call for “supplements” to SDM such as involving family members in deliberations; using decision aids presenting non-opioid alternatives while drawing attention to the risks of opioid use in light of comorbidities, co-prescriptions, and age; and focusing on daily functioning rather than pain relief as the primary goal of treatment. These experts correctly highlight that decision-making regarding the use of opioids for chronic pain extends beyond a simple discussion of pros, cons, and preferences. However, this does not mean that SDM is inappropriate. Rather, it may indicate that the traditional form of SDM may not adequately address the real and deeply personal problems that accompany life with chronic pain and suggest that other forms of SDM may be required.

Distinct from traditional descriptions of SDM in which patients select their preferred treatment approach after being presented with a menu of available options, the Purposeful SDM model^23–25 centers on patients and their clinicians working together to understand and change the patient’s problematic situation. Development of the purposeful SDM model was driven by the recognition that weighing pros, cons, and preferences (i.e., traditional SDM) is not the only way in which collaborative decisions are made by patients and clinicians.²³ Rather, purposeful SDM recognizes that there are a range of methods that may be employed to collaboratively address the patient’s problematic situation, not as “add-ons” to care but as central components of care. The use of purposeful SDM has been described in diverse medical settings, including diabetes care and vascularized composite allotransplantation.^23,25,26 Regarding chronic pain care, purposeful SDM begins with working out what kind of problem pain is and what might be possible ways to address it. Purposeful SDM is a method of care because it pays attention to the problem, uses a collaborative way of figuring out how to tackle that problem, and answers the question, “What is the solution or response for which this pain is the problem?”.

What pain is and how it manifests as a problem varies. Some patients describe the painful situation and how it should be changed in terms of pain severity, and yet others do so in terms of function, relationships, or well-being.²⁷ Although some experts have asserted that patients consistently prioritize improvement in pain intensity,¹⁵ there is considerably more nuance. Reducing the intensity of pain may not treat other ways that pain diminishes life; for instance, avoiding activities as an adaptive mechanism may diminish pain intensity but worsen social participation, daily functioning, and overall quality of life.

Under Purposeful SDM, the method of SDM depends on what problem is being addressed. Weighing beneficial and harmful effects of medicines against patient preferences may make sense when the problem is pain intensity, but when the problem lies in pain interference and disruption to day-to-day life, problem-solving ways to adapt that are minimally disruptive may be more useful at arriving at a plan of care. Alternatively, at the end of life, the problem may be existential yet sedative effects of medications may impose a new existential disconnect. The method of SDM appropriate for each of these situations (weighing, problem-solving, developing existential insight) is different for each one, but this difference is not in steps, roles, policy mandates, best practices, add-ons, or supplements to care. The difference is in the kind of problem, which serves to determine the kind of SDM to use.

In Table 1, we summarize several types of problematic situations which demand care but may complicate decision-making, along with a method of Purposeful SDM that may help. In Table 2, we bring these situations to life in clinical scenarios that represent some, but certainly not all, of the nuances and complexities of opioid prescribing decisions and chronic pain management. We contrast current approaches with those employed under Purposeful SDM. Importantly, SDM may be undermined when clinicians make unwarranted assumptions regarding the reason for seeking consultation or treatment—e.g., to achieve immediate pain control or to obtain more opioid medications. These assumptions, unexplored, weaken the ability of clinicians to respond to the patient situation, develop mutual trust, and engage productively in co-creating care with the patient.

Table 1.

Problematic Situations and Methods of Purposeful SDM to Address Them

Types of problematic situations experienced by patients that may challenge decision making	Purposeful SDM method employed to address the problematic situation and make care fit
The unpleasant or threatening current and future effects of illness, the limited efficacy of treatments, and the competing beneficial and harmful effects of options	Weighing effects
A person, or a group of people, torn by conflicting or confused positions on the situation and what to do about it	Negotiating positions
A complex life situation that exacerbates illness and impairs treatment	Problem-solving situations
Suffering is existential	Developing the existential insight required to know what to do

Table 2.

Example Scenarios of How Purpose SDM may Improve Collaborative Care for Those with Chronic Pain

Challenging scenario	Case description	Current care example	Purposeful SDM strategy
1. Established patient with chronic pain requesting more opioids outside of signed patient-clinician agreement	Mr. Engle is a 36-year-old man with chronic mechanical low back pain on long-term disability. He takes 30 mg of oxycodone 4 times daily, which he states is the only treatment that works. He is requesting an opioid refill, stating that he is out of pills and cannot make it through another day without opioids.	You check the prescription drug monitoring database and find that Mr. Engle received a 3-day oxycodone prescription in a local emergency department 3 days ago. Further, his previous opioid prescription should have sufficient remaining pills for several more days of therapy. Urine drug screen is positive for opioids, as expected. You discuss that Mr. Engle’s use pattern is incongruent with his signed opioid agreement. Thus, additional opioids will not be prescribed.	Recognizing that Mr. Engle’s request seems premature, you explore why he has needed more opioids recently (e.g., is pain getting worse, and if so, what is driving this? Did he take more pills than intended? Did he lose pills?). Leaning into your long-standing partnership, Mr. Engle shares that he gave approximately 10 pills to his mom who suffered a fall and hurt her ankle during a family trip last weekend. Mr. Engle has never had issues with diversion or misuse. You and he discuss the dangers of opioid diversion and the importance of only using opioids as prescribed. Mr. Engle is provided with his normal prescription refill with plans for follow-up in 2 weeks.
2. Individual with chronic pain and history of illicit opioid use requesting more opioids in setting of acute pain event	Ms. Salbon is a 45-year-old woman with chronic pain secondary to fibromyalgia, post-traumatic stress disorder, and prior heroin and methamphetamine use. She suffered a motor vehicle accident resulting in multiple rib fractures and an ankle fracture 5 days ago. She was prescribed a 3-day supply of oxycodone 5 mg tablets to be taken every 6 h as needed at discharge from the emergency department. She is asking for more opioid medication.	You verify the prescription drug monitoring program database and note that the patient has not received any additional opioid prescriptions since her emergency department visit. However, given her history of methamphetamine and heroin use, you decline to refill her oxycodone and recommend that she use NSAIDs instead, which she is already taking.	You take time to inquire about the effects that the rib and ankle fractures are having on Ms. Salbon’s daily life and functioning, assess the way she takes the oxycodone, and invite her to share what fears or concerns she has about being prescribed opioids given her history of heroin use. Ms. Salbon says that she is very fearful of relapsing or returning to use and has asked her mother to guard her oxycodone bottle so she would not impulsively take more than prescribed. She tells you that she has been limiting her use to 5 mg every 12 h as needed (rather than every 6 h as prescribed) but her work duties in the postal office have exacerbated her pain. Ms. Salbon says that the fear of worsening pain has triggered cravings for heroin. Ms. Salbon asks if there are alternatives to opioids given her fears of relapse. You suggest Ms. Salbon consider initiating buprenorphine buccal films to help with pain control in the short term and treat cravings as well. They agree to proceed and review in a week. Also, you prescribe work restrictions.
3. Individual with chronic pain and opioid use disorder requesting opioids without acute preceding event	Mr. Xandi is a 27-year-old man with chronic regional pain syndrome of the right upper extremity and opioid use disorder with recent non-prescribed opioid use. He presents to his primary care clinician requesting opioids.	The prescription drug monitoring program database records this patient receiving 3 short-term oxycodone prescriptions from multiple prescribers over the last 3 months. After explaining that opioid prescriptions are too risky given his history, you decline the request for a new prescription and, instead, refer him to the Addictions Service. Mr. Xandi leaves disgruntled and does not schedule the suggested appointment.	You inquire about the reason for the opioid request and any triggers for worsening pain. He explains that he and his partner had a child 6 months ago. Due to increased financial stress, he has had to take on additional shifts and work weekends as a construction worker. This has greatly exacerbated his right upper extremity chronic regional pain. The increased work demands, not being able to see his child and partner as often as he would like, and increased pain have led Mr. Xandi to purchase non-prescribed opioids. He describes feeling overwhelmed and depressed. The option of buprenorphine is raised, and after sharing how the drug works and talking through potential concerns with its use, you collaboratively agree to start this medication along with a referral to Addiction Services, counseling, and starting a serotonin norepinephrine reuptake inhibitor. You also bring the clinic’s social worker, Mr. Ramirez, into the conversation. He has several ideas to support the new family, including applying to Early Head Start (early developmental childcare program), the Women, Infants, and Children (WIC) program (nutritional help), and the National Diaper Bank Network (non-profit that provides free diapers).
4. New patient with chronic pain requesting refill of opioids on a Friday afternoon	Mrs. Figone is a 72-year-old woman with type 2 diabetes mellitus seeing a new primary care physician after moving from out of state. She has chronic neuropathic pain in her feet, which has not improved on gabapentin, acetaminophen, and topicals. She has been using 10 mg of oxycodone approximately 3–6 times per day over the past 6 months, which has been helpful. She walks in to the clinic at 4:45 on Friday requesting an oxycodone refill.	You check the prescription drug monitoring database and find no concern for aberrant opioid use or behaviors. You review adverse effects of opioids. A written patient-clinician agreement is created and signed, including a new urine drug screening schedule. You note that Mrs. Figone has not trialed duloxetine. Mrs. Figone leaves with a new prescription for duloxetine, a short-term refill for oxycodone, and a planned first available return visit.	You recognize that your schedule at this late hour on a Friday leaves limited time to explore the patient’s pain in the context of her daily life. She is prescribed a short-term refill for oxycodone and an appointment is scheduled for the following week. At the subsequent visit, you explore the reason behind her recent move. Mrs. Figone shares that she moved to be closer to her grown children. Her husband died 3 months ago, within 12 weeks of the diagnosis of metastatic esophageal cancer. This has been immensely challenging for Mrs. Figone. She also shares that pain was much better controlled prior to her husband’s diagnosis, but that the last 6 months have been difficult. She feels overwhelmed and unable to maintain her self-care regimen for diabetes in the face of spending so much time in the hospital during her husband’s last days. She is now living in her son’s basement. The numbness in her feet makes her fearful of falling down the stairs. Oxycodone was continued and you and the patient collaboratively develop a plan to address major drivers of her worsening symptoms. After screening for depression, you offer a list of local resources for grieving and arrange for her to see a psychologist. After contacting her children and discussing together her safety concerns, they collectively agree for Mrs. Figone to move into an available room in the main floor of her daughter’s home
5. Established patient requests early opioid refill by phone	Mr. Zamber is a 72-year-old man with chronic knee osteoarthritis. He has a prescription for 15 mg of oxycodone every 6 h as needed. He makes a phone call to his primary care clinician on late Friday afternoon asking for an early refill on his oxycodone. He has an agreement in place, as required by the clinic for all patients on long-term opioid therapy.	You deem the early refill would be a violation of Mr. Zamber’s signed agreement and decline to refill the prescription. You remind Mr. Zamber of his signed agreement and tell him that he’ll have to wait until his next regular refill.	Upon receiving the phone call, you review the patient’s prescription drug monitoring program database and medical record. You notice that Mr. Zamber has never called for an early opioid refill, has not missed any of his previous appointments, and has complied with mandatory opioid drug testing. On the phone, Mr. Zamber reports that “grandpa duties” have exacerbated his knee pain which has required more oxycodone than prescribed. You explain the dangers associated with increased opioid dose without adequate medical supervision, especially unintentional overdose. You offer to prescribe naloxone in the event of an overdose and agree to provide a 2-day bridge prescription until Mr. Zamber can come in for an acute visit the following Monday. During that appointment, Mr. Zamber informs you of his excitement about being a grandfather but frustration that he is unable to participate in childcare and family events because of debilitating knee pain. Being able to participate in family events and trying to be the best grandfather he can be is what matters most to him. Mr. Zamber asks whether he could be reconsidered for knee replacement, recognizing that surgery was not offered by a surgeon previously because of his opioid “addiction.” You and the patient collaboratively discuss the options of continuing with medical pain management versus surgical intervention. Mr. Zamber shares his reluctance with surgical referral given his previous experience. You offer to speak directly with the surgeon prior to sending a new referral. Mr. Zamber is anxious but also hopeful and grateful. After sharing his understanding of the possibility of unintentional overdose, Mr. Zamber agrees not to exceed prescribed opioid dose/frequency moving forward.

Pain is not purely a biological sensory phenomenon; rather, the pain experience represents an interaction between biology and biography. It is an individualized unpleasant and emotional experience, shaped by previous life experiences and emotions.²⁸ In many cases, therapies are trialed for both diagnostic and therapeutic purposes, recognizing the highly individualized experience of pain and subsequent treatment response. Oftentimes, there is limited evidence of superiority of one treatment modality over another. Thus, there cannot be an a priori approach to pain treatment expected to be useful, usable, and desirable for most patients.²⁹ Although healthcare systems are often organized to identify and recommend such optimal treatments for “patients like this,” Purposeful SDM, by seeking a shared understanding of each patient’s problematic situation and by uncovering together some ways to change it, seeks to form care plans “for this patient in this situation.”

And yet, some contextual factors limit the possibility that clinicians and patients engage in collaborative deliberation. The opioid epidemic and high-profile state and federal lawsuits over the last decade have sought to curb opioid prescribing. Institutional pressures, medicolegal concerns, and perceptions that opioid use may lead to dependence, misuse, or diversion strongly dissuade clinicians from prescribing opioids.³⁰ Not all patients will benefit from opioid therapy, and some may be harmed. Harm can result from opioids’ high-risk physiological effects (e.g., respiratory depression) or from the development of opioid use disorder. Seeking to “first, do no harm,” many clinicians prefer to avoid opioid prescribing altogether. Often conflated with these safety concerns, opioid use also contributes to the tendency of communities and health professionals to stigmatize patients presenting with pain, including questioning the decision-making capacity, suffering, or worth of patients with chronic pain prescribed long-term opioids.

There are also broad recommendations that seem antithetical to SDM. State guidelines recommend that patients and clinicians enter a formal, written, and signed patient-clinician agreement outlining responsibilities of both persons with regard to opioid prescribing and describing potential consequences of noncompliance for patients. While arriving together at a treatment plan is consistent with SDM, these signed agreements often signal distrust and include punitive contingency plans. There is limited evidence to suggest that signed agreements prevent opioid misuse or strengthen the patient-clinician therapeutic alliance.³¹

Urine drug screening to monitor for opioid misuse or diversion may also inhibit SDM. These expensive (US$8 billion per year) programs³² may undermine patient privacy, produce results of varying accuracy and disconnected from productive next steps, and enshrine a hierarchal and punitive healthcare model that erodes collaborative patient-centered care.^33,34 There is minimal evidence to suggest that urine drug screening improves patient safety beyond standard clinical evaluations.

Most states mandate the use of prescription drug monitoring programs that require prescriber registration and review of its database before opioid prescribing. These programs, however, were not designed for patient care or safety, but rather as surveillance tools for the US Drug Enforcement Administration, a law enforcement agency.^35,36 While busy clinicians may find it useful to consult a program database to quickly identify multiple prescriptions or prescribers, these programs may also place excessive pressure on clinicians to minimize opioid prescribing at all costs,^37,38 including through the broad application of analytical tools which are largely untested and lack clinical outcome correlates.³⁹ Evidence to suggest that these programs successfully reduce opioid misuse or improve opioid-related outcomes remains limited.^40,41

Collectively, punitive written agreements, urine drug screening, and prescription drug monitoring programs may not enhance the safety and appropriateness of opioid prescribing or, when they do, do so at the expense of restricting access to care, undermining trust and the patient-clinician relationship. Beyond this, these mechanisms risk masking the nature of the situation that requires care either by diverting clinician attention towards issues not central to the patient’s suffering, or by constraining patients’ abilities to safely voice relevant concerns. How patients use opioids may contribute positively or negatively to their situation. Either way, use is a response to something that should be the focus of care. SDM is thwarted when it is not applied to the real problematic situation, as the cases in Table 2 demonstrate.

Yet, hope remains for patients with chronic pain and their clinician partners. There is considerable nuance in chronic pain management and opioid-prescribing decisions. The Purposeful SDM framework is based on and contributes to a collaborative, non-punitive relationship between patient and clinician to tackle problems, make care fit, and avoid unintended harm from unilateral treatment decisions. SDM is not a retail transaction between a demanding patient and an obsequious prescriber, but a generative collaboration toward effective person-centered care. It may seem an implausible form of care in a healthcare system in which access, efficiency, and cost constraints call for the hurried processing of patients. And yet, patients who are suffering from pain are among those who most need a healthcare system capable of relational continuity, trust, and unhurried conversations.

Due to the multidimensional nature of how chronic pain can impact biological, psychological, social, and spiritual aspects of daily life, Purposeful SDM should not be thought of as a one-time, laborious, and extensive conversation. Rather, this form of care may be best deployed as a longitudinal process, spanning across encounters, and thus functioning well within the time and resource constraints of our healthcare system. As demonstrated in the cases, through Purposeful SDM, potentially simple solutions can be identified to improve quality of life without necessarily involving modalities that may not be available, accessible, or affordable. This framework may even be employed for patients with co-existent chronic pain and opioid use disorder, helping clinicians and patients to work together through the patient’s problematic situation and “try-on” starting buprenorphine, making a referral to a comprehensive addiction center, or leaving room for further conversations prior to agreeing on a course of action.

We propose that SDM, as a method of care, grounded in the problematic situation of each patient and centered on an ongoing patient-clinician partnership, is an adequate framework for establishing trust, mobilizing compassion, negotiating conflict, and co-creating situationally appropriate pain care that fits each person.

Author Contribution:

Not applicable.

Declarations:

Human Ethics and Consent to Participate Declarations:

Not applicable.

Conflict of Interest:

Dr. Warner receives research support from the National Institute on Aging.