Patient Perspectives on Mental Health and Pain Management Support Needed Versus Received During Opioid Deprescribing.

Skip to main content An official website of the United States government Here's how you know Here's how you know Official websites use .gov A .gov website belongs to an official government organization in the United States. Secure .gov websites use HTTPS A lock ( Lock Locked padlock icon ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites. Search Log in Dashboard Publications Account settings Log out Search… Search NCBI Primary site navigation Search Logged in as: Dashboard Publications Account settings Log in Search PMC Full-Text Archive Search in PMC Journal List User Guide PERMALINK Copy As a library, NLM provides access to scientific literature. Inclusion in an NLM database does not imply endorsement of, or agreement with, the contents by NLM or the National Institutes of Health. Learn more: PMC Disclaimer | PMC Copyright Notice J Pain . Author manuscript; available in PMC: 2026 Apr 14. Published in final edited form as: J Pain. 2024 Feb 2;25(7):104485. doi: 10.1016/j.jpain.2024.01.350 Search in PMC Search in PubMed View in NLM Catalog Add to search Patient perspectives on mental health and pain management support needed versus received during opioid deprescribing Bobbi Jo Yarborough Bobbi Jo Yarborough , PsyD 1 Kaiser Permanente Northwest Center for Health Research, Portland, OR USA Find articles by Bobbi Jo Yarborough 1 , Scott P Stumbo Scott P Stumbo , MA 1 Kaiser Permanente Northwest Center for Health Research, Portland, OR USA Find articles by Scott P Stumbo 1 , Jennifer L Schneider Jennifer L Schneider , MPH 1 Kaiser Permanente Northwest Center for Health Research, Portland, OR USA Find articles by Jennifer L Schneider 1 , Brian K Ahmedani Brian K Ahmedani , PhD 2 Henry Ford Health, Detroit, MI USA Find articles by Brian K Ahmedani 2 , Yihe G Daida Yihe G Daida , PhD 3 Kaiser Permanente Hawaii Center for Integrated Health Care Research, Honolulu, HI USA Find articles by Yihe G Daida 3 , Stephanie A Hooker Stephanie A Hooker , PhD, MPH 4 HealthPartners Institute, Minneapolis, MN USA Find articles by Stephanie A Hooker 4 , Gwen T Lapham Gwen T Lapham , PhD, MPH, MSW 5 Kaiser Permanente Washington Health Research Institute, Seattle, WA USA Find articles by Gwen T Lapham 5 , Sonya Negriff Sonya Negriff , PhD 6 Kaiser Permanente Southern California, Pasadena, CA USA Find articles by Sonya Negriff 6 , Rebecca C Rossom Rebecca C Rossom , MD, MS 4 HealthPartners Institute, Minneapolis, MN USA Find articles by Rebecca C Rossom 4 Author information Article notes Copyright and License information 1 Kaiser Permanente Northwest Center for Health Research, Portland, OR USA 2 Henry Ford Health, Detroit, MI USA 3 Kaiser Permanente Hawaii Center for Integrated Health Care Research, Honolulu, HI USA 4 HealthPartners Institute, Minneapolis, MN USA 5 Kaiser Permanente Washington Health Research Institute, Seattle, WA USA 6 Kaiser Permanente Southern California, Pasadena, CA USA ✉ Corresponding author Bobbi Jo H. Yarborough, Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave., Portland, Oregon, USA 97227, [email protected] Issue date 2024 Jul. PMC Copyright notice PMCID: PMC13075350  NIHMSID: NIHMS2140687  PMID: 38311195 The publisher's version of this article is available at J Pain Abstract Prescription opioid tapering has increased significantly over the last decade. Evidence suggests that tapering too quickly or without appropriate support may unintentionally harm patients. The aim of this analysis was to understand patients’ experiences with opioid tapering, including support received or not received for pain control or mental health. Patients with evidence of opioid tapering from six health care systems participated in semi-structured, in-depth interviews; family members of suicide decedents with evidence of opioid tapering were also interviewed. Interviews were analyzed using thematic analysis. Participants included 176 patients and 16 family members. Results showed that 24% of participants felt their clinicians checked in with them about their taper experiences while 41% reported their clinicians did not. A majority (68%) of individuals who experienced suicide behavior during tapering reported that clinicians did check in about mood and mental health changes specifically; however, 27% of that group reported no such check in. More individuals reported negative experiences (than positive) with pain management clinics—where patients are often referred for tapering and pain management support. Patients reporting successful tapering experiences named shared decision-making and ability to adjust taper speed or pause tapering as helpful components of care. Fifty-six percent of patients reported needing more support during tapering, including more empathy and compassion (48%) and an individualized approach to tapering (41%). Patient-centered approaches to tapering include reaching out to monitor how patients are doing, involving patients in decision-making, supporting mental health changes, and allowing for flexibility in the tapering pace. Keywords: Opioid deprescribing, opioid taper, shared decision making, mental health, suicidal behavior Introduction The potential harms associated with prescription opioid use are well documented in the United States, 1 – 3 leading the CDC, in 2016, to issue an opioid prescribing guideline. 4 Many states and health care systems have also made significant policy changes designed to promote safer opioid prescribing practices. 5 , 6 The short term effect is that opioid prescribing has declined 7 , 8 since peaking in 2010, 9 and evidence of opioid deprescribing is accumulating. 10 – 12 It was hoped that opioid dose reduction or discontinuation would mitigate opioid-related harms including overdoses. However, rates of opioid-related overdoses involving prescription opioids have remained relatively stable, 13 policy efforts have had modest benefits, 14 and there have been concerns that rapid dose reductions and the rush to deprescribe opioids may instead be inducing harms. 15 – 19 Recently published work has confirmed that opioid deprescribing has been associated with suicide deaths, suicide attempts, and other mental health crises. 20 – 24 In light of this, understanding patient experiences with opioid tapering is paramount in identifying less harmful approaches to reducing opioid use. A synthesis of qualitative studies documented important barriers for patients reducing their opioid use including limited non-opioid pain relief alternatives and patient reluctance to embrace alternative pain remedies. 25 Others have described the inflexibility of health system tapering programs, lack of support while tapering, and stigma as concerns. 26 – 30 More studies are needed that capture patient experiences with opioid deprescribing; particularly lacking are descriptions of mental health support (or lack of) during the deprescribing process and advice patients have on making the tapering experience more patient-centered. The current study is part of a larger project which documented overdose- and suicide-related risks associated with opioid deprescribing patterns (unpublished manuscript, currently under review). We have also previously reported qualitative results describing how opioid deprescribing affected mental health and how deprescribing contributed to suicide behaviors for some individuals. 31 The aim of the present analysis was to understand patient-reported experiences with opioid tapering, including support received or not received for pain control or mental health. Methods We present an abbreviated description of methods here as we have previously published a comprehensive version. 31 Interview sites included six health systems serving eight million patients in eight states. The health systems were known to have variability with regard to opioid prescribing policy and tapering practices. We sampled individuals with electronic health record (EHR) evidence of opioid deprescribing between 2016 and April 2020 identified as part of the larger study. We used purposive sampling 32 along with several post-hoc approaches designed to solicit experiences from a broad range of individuals often under-represented in the literature. For example, we oversampled individuals with a documented suicide attempt, males, and persons of color. We also used available state death data from 2012–2019 to identify family members of suicide decedents with evidence of opioid deprescribing for possible interviews. Per our protocol, we intended to interview 30 patients per site (6 sites, 180 total patients) and 5 family members per site (30 total) in order to capture a broad range of experiences. We developed an interview guide to address gaps in the literature. The interview guide 31 focused on patient experiences of mental health, suicidality, and health care system support offered during tapering among other content. All interviewers were masters or PhD-level trained in public health, psychology, sociology, or social work with experience on studies involving individuals with mental health concerns. Recruitment began by mailing letters and consent information sheets to interview candidates. Interviewers followed up within five days with a recruitment call or email. We approached family members of decedents in a similar manner; methods for identifying family members in the health system varied by site and are reported elsewhere. 31 All recruitment and interviewing took place between March and October 2021. Interviews were conducted by telephone, lasted approximately one hour, were audio-recorded and were professionally transcribed verbatim. Interview participants received a $50 check or gift card as compensation for their participation. A critical incident protocol was developed to handle reports of suicidal ideation or behavior, including a risk assessment using the Columbia Suicide Severity Rating Scale 33 and consulting with a licensed clinician at each site to assess risk and mitigation strategies. All study materials and procedures were approved and monitored by the Kaiser Permanente Northwest Institutional Review Board. Members of the interview and analysis teams developed the codebook first by deriving deductive codes from the interview guide. While reading transcripts, concepts brought forth by participants were later included as inductive codes. Two members of the qualitative analytic team (SS, JS) coded 10 initial transcripts using Atlas.ti, a qualitative coding software. The analysts met every other week throughout the coding process; no additional codes were required. Coding discussions allowed the analytic team to assess and determine data saturation as new reports from interviewers became less frequent. Saturation on several topics of interest were reached prior to the end of the study, but per our research protocol we continued interviewing until target goals were achieved. The analysts queried the coded data, reviewed queries by discrete categories of suicidal behaviors (e.g., did or did not experience suicidal behavior), and summarized them into preliminary reports. We used thematic analysis to organize salient topics brought forth by patients in describing the support received during deprescribing. 34 , 35 Full theme reports were developed which included summarized queries, a narrative description of the phenomena of interest, direct quotes from patients, and counter-examples as warranted. The analytic approach had to take into account the volume of completed interviews, number of codes (25), and thematic summaries. This led the team to group overlapping thematic content into reports which could answer important scientific questions. In transforming the reports into this manuscript, the team used content analysis 36 to further delineate the subthemes and provide counts of important phenomena. The primary codes used in the analysis presented in this paper include: “advice/additional support needed,” “doctor—communication, support,” “mental health treatment,” “taper-negative experiences,” and “taper-positive experiences.” The analytic team (BJY, SS, JS) met biweekly during this process. Discussions of theme reports occurred at each meeting and multiple iterations ensured agreement on results within the analytic team. In analyses we compared patients with suicide behaviors (n=44, 23%; [suicide attempt n=26, suicidal ideation during taper n=18) with those who reported no suicide behaviors (n=132, 69%). In the results that follow, we include exemplary quotes from participants belonging to each of these subgroups. Each quote is labeled with the transcript ID (to demonstrate a variety of participants are represented) and the subgroup to which the participant belonged (i.e., suicide behavior, no suicide behavior). Throughout the results, where possible, we aim to quantify the magnitude of responses; however, this is only possible when all participants had the opportunity to answer interview prompts. That is, themes that were derived based on spontaneously reported information that was not systematically asked of all participants cannot be quantified. Similarly, proportions who experienced a phenomenon and those who did not may not total to 100% as the proportion we could not ascertain from transcripts are not reported here. Results We mailed recruitment letters to 645 potential participants and completed 176 interviews (27% participation rate). The majority of our participants were female (68%), white (80%) and older (>65% were 55 years or older); 15% identified as Hispanic/Latinx. Additional details on the sample are reported elsewhere. 31 We mailed 65 letters to family members of suicide decedents and completed 16 interviews (25%). All 16 were current, estranged, former or widowed female spouses of white, non-Hispanic male decedents. Our final sample consisted of 192 interviews. Many themes that follow represent patient perspectives as we learned through the interviews that family members were not able to reliably report on many of the interview questions. However, family member data is included in the theme “Advice from patients and family members about what would help to successfully taper” because family members provided important perspectives on their efforts to advocate for and assist their loved ones during tapering. In the year prior to cohort entry, patients were on prescribed opioids for a mean of 234 days (SD=118) and on an average dose of 84 morphine milligram equivalence (SD=89). Ninety-nine percent of patients (n=174) had one or more pain conditions; 57% (n=101) had two or more pain conditions. The three most common pain conditions were back (61%, n=107), limb/extremity (61%, n=108) and abdominal/bowel (28%, n=49). We do not have equivalent data on decedent characteristics. General communication with clinicians and checking in during the tapering process (Patients only, n=176) A minority of patients (n= 43; 24%) reported that clinicians checked in with them about increases in pain or generally how they were doing with tapering and that this often occurred during regularly scheduled appointments. Quite often these patients reported they were told they could reach out if they needed anything, placing the burden on the patient to seek help. This was experienced fairly equally across those reporting suicide behavior (n=11, 25%) and those not reporting suicide behavior (n=32, 24%). Check ins initiated by clinicians were appreciated by patients even if medication adjustments were not needed. “She [clinician] would call me. When I started it, she called me two weeks later to see how it was going. Did I have any concerns, you know, anything like that? And I’m like, no. I’m doing good. [She checked] to make sure that the dosage was working, and that I didn’t need to maybe go up a little bit because it was such a drastic cut. And I said, no, I’m doing good…she’s genuinely concerned.” (75, no suicide behavior) Just under half of all participants (n=72, 42%), indicated they did not receive any form of checking in or support from their clinicians during opioid tapering; these results were equally represented by those with suicide behavior (n=17, 39%) and those not reporting suicide behavior (n=55, 42%). Many patients reported feeling left on their own without any support for the emotional or physical withdrawal symptoms they might experience. “I think he [clinician] was afraid that I would go through withdrawals, that I would need help. And I think he was afraid because he was getting ready to retire, he didn’t want to deal with it… He just said I’m taking you off all your medication. Have a nice day. And then he left – so nothing! Cold turkey, on my own!” (39, suicide attempt) Others reported they were not given any warning about what to expect during tapering. “Nothing…when I was going off the opiates, I was being prescribed absolutely nothing. No one told me I was going to go through this [withdrawals].” (42; no suicide behavior) A small number of patients (10%; n=10 [23%] in the suicide behavior group; n=8 [6%] in the no suicide behavior group) reported that they initiated reaching out during the taper to express concerns to clinicians regarding increased pain and withdrawal symptoms. Some of these patients felt dismissed by their clinicians, and reported being told what they were experiencing was normal or “you are fine.” “I told him [doctor] that I was in bad pain. And I told him to please go over my case before he would make that decision [to continue taper]. And he just, basically, talked over me. He just ignored what I was saying. Like I said, I was crying... And I kept asking him why are you doing this? And he says because you’re on too much pain medication. And he just basically ignored what I was saying – I didn’t feel heard. I wasn’t heard because he went on with it. And then when I went into see the pain management doctor, it was the same feeling because he said to me ‘pain won’t kill you. You’re going to be okay.’ And I remember thinking to myself it might not kill me, but it makes you feel like you want to die. And he reduced it, just like that.” (79, suicide attempt) Being treated like this by clinicians discouraged patients from approaching them again. In fact, many patients avoided bringing up concerns with their clinicians precisely because they anticipated a negative reaction. “I’ve never had a conversation with any doctor about that [withdrawals, increased pain, mood changes]. I wished they would. Not one of them has ever done it. It’s kind of like if I don’t keep my mouth shut and act like I’m strong, they’re going to roll their eyes at me, you know? That’s even how the pain doctor acts. He’ll roll his eyes when I talk about how much something hurts…There’s such a stigma to opiates still in the medical community. There’s always been a stigma there. It’s going to take a long time for there to be a comfortable dialogue, as far as I can see.” (37, no suicide behavior) Finally, 22% (n=39) of patients (n=8 [18%] with suicide behavior, n=31 [23%]) without suicide behavior) self-tapered and did not need or require any assistance or check in with clinicians. We were unable to ascertain accurate information for four patients. Support for mental health while deprescribing (Patients only, n=176) A majority of individuals (68%, n=30) in the suicide behavior group reported that a clinician checked in with them or provided some level of support for their mental health during the tapering period. However, 27% (n=12) of the suicidal behavior group reported not receiving any such support. Only 31% (n=41) of those without suicide behaviors reported a clinician checking in on their mental health or mood, but most of this group either quit “cold turkey” or encountered very few problems in the process of tapering and did not report that they needed such support. See Table 1 for additional results. Table 1. Clinician checked in on mental health and/or provided mental health support during taper * . Suicide attempt or suicidal ideation (n=44) No suicide behavior reported (n=132) Total patient interviews (n=176) n % n % n % Some form of checking in on mood happened and/or support or referral for mental health care happened 30 68 41 31 71 40 No reported checking in on mood and/or no support offered 12 27 80 61 92 52 Insufficient information in transcript 2 5 11 8 13 7 Open in a new tab * Patients only, family member interviews lacked sufficient information to be included in this table Many patients reported that clinicians, both their primary care physicians and mental health clinicians, were reluctant to provide new mental health medications during the taper, particularly anxiolytic medications. However, the small number who did receive such medications indicated that they were helpful in regulating mental health during the taper. “I was really struggling with my mental health then. So was under the care of a mental health therapist… I was on a lot of mood stabilizers, antidepressants. I was on an anti-psychotic. I was on a lot of medication… At the time [they were] helpful.” (54, suicide attempt) Patients who were already taking medications for mental health reported that adjusting dosages during the taper was helpful in transitioning off opioids. “I had anxiety medication. So we [she and doctor] were on board with just making sure I was maintaining that medication. And I think, during that time, my psychiatrist and I increased the anxiety medication…just temporarily…I was able to get my benzodiazepines increased to one milligram temporarily [instead of half mg]. I think they just changed it for that one month. I actually think it would be a lot worse if I didn’t have that increase in medication or didn’t have the help of the benzodiazepines.” (81, no suicide behavior) Among individuals who did not report receiving any mental health support, some felt that the clinicians were dismissive of their suffering. Some patients were told that their feelings were normal or would simply pass. “I: Did you talk to your provider about how you were feeling in terms of like the emotional dysregulation and anxiety? R: Absolutely…So at that point, you know she’s always been very transparent with sharing what the expectation would be and what I could expect. You know she’s always super sympathetic and understanding. But at that point, she was kind of like, you know, once you finally get off them, you’ll re-regulate. You just kind of have to break through this process. So, yeah.” (129, suicidal ideation) Other individuals reported specifically requesting help but were unable to get it. “It’s really hard to get an appointment. There’s been times where I am struggling and the medication that I am taking doesn’t seem to be helping. And the soonest I can get in to see my mental health doctor is a month away. There’s more than a couple times where that’s been the case. And then they give me the emergency number for mental health. Yeah someone to talk to that’s great but I kind of want to talk to my doctor, thanks.” (116, suicidal ideation) Experiences in the pain management clinic (Patients only, n=176) While the results reported above are not specific to any particular department or type of clinician, some patients were referred to a pain management clinic during tapering and these patients reported a variety of experiences. Those who felt neutral or positive about their experiences (n=23) expressed that they received wraparound services that provided support they needed to meet their tapering goals. However, nearly twice as many people expressed negative views (n=40) regarding their experiences with pain management programs. The overwhelming perspective among the latter group was that pain management programs were designed for one purpose only: to take away opioid medications. Several individuals reported a lack of empathy from pain clinic personnel. “But right away, the first time she [pain management physician assistant] looked and she was like, well, no you’re on way too much. We’ve got to get you down. Basically saying, you’re not in any pain. This is all in your head. But immediately it was, okay, well we’re gonna reduce you from this to this and then down to this. And then in a couple of months, we’ll put you on the Suboxone. I was not impressed with her, one bit. A lot of times, I felt like I was being judged. I was being looked at differently. It’s like there’s no trust. You can tell she didn’t look through any of my records…She knew nothing about me other than, well, come on in…do a UA…we’ll charge a thousand dollars or whatever for it. And here you go. See ya next month. And just, every time I’d say something just this smug, self-righteousness, you know.” (10, suicide attempt) Others reported that even when they complied with all mandates from the pain management program, their medications were still taken away with little alternatives offered to replace them. “I went to a pain class for several weeks. And I did everything they asked me to do. I was taking my meds as directed even when I was still in excruciating pain. And they still said that I had a problem. And I was like I don’t know what you want from me. I’m doing the classes. I’m using the pain gel. I’m doing all these other things. And I’m still in this outrageous pain. And they particularly left me to suffer. It was awful. She just kept telling me we’re doing our best. You know, our best is still leaving me with sleepless nights and agonizing pain and not being able to work. I couldn’t work for a year and a half. I was pretty much bedridden for a year and a half.” (29, suicidal ideation) Finally, many expressed a simple “been there, done that” sentiment reflecting skepticism that anything helpful would be offered for pain control. “They gave me options to go to the pain clinic which doesn’t do anything for you. I’ve gone to that. I’ve done everything and like they’ll give you a certain amount of... it was like massages. There’s only a limited amount and then you’re done. So it’s like what’s the point of it. It’s not helping.” (113, no suicide behavior) Successful support during tapering (Patients only, n=176) Patients who indicated the most success with deprescribing were those whose clinicians allowed them to share in the decision-making about when and how to taper. Most importantly this included input on the pace of the taper itself and the ability to pause the deprescribing process when pain, functioning, or mental health were suffering. Though this level of patient involvement was exceedingly rare in our sample (fewer than 10 people reported shared decision-making), we present a few examples as this was overwhelmingly what patients requested (see Table 2 below). Table 2. Advice and additional support needed for tapering reported by patients and family members of decedents (n=192). Suicide behavior reported n=60 No suicide behavior reported n=132 Total n=192 Need more patient support during and after taper 42 (70%) 66 (50%) 108 (56%) Doctors need to demonstrate more compassion / empathy to their pain patients on opioids and listen to their patients’ specific needs 34 (57%) 59 (45%) 93 (48%) Need an individualized, case by case and personalized approach to whether and how much a patient should taper opioids 51 (85%) 28 (21%) 79 (41%) Need proactive, clear, thorough, ongoing education about opioids (e.g., possibility for dependence) both when they are prescribed and after 42 (70%) 22 (17%) 64 (33%) Open in a new tab One individual reported wraparound services which included telephone support, ability to pause tapering, and ongoing symptom management. “That part [tapering] was actually really well done. They had a pain nurse…she would call me weekly. And she gave me her phone number so I could call her. And they did work with me on that, when I said that going down, for example, by one [pill] every week was really hard. If we could cut it back. And so they cut it back to half a [pill] every week. And then the pain nurse had scheduled appointments which also helped. Because then I know that I have the opportunity to talk to somebody upcoming. Like, just having that person that I could tell how I was feeling and what my symptoms were and she could help me with that or potentially get medications that could help like with the stomach pain or that kind of stuff. That was helpful.” (27, suicidal ideation) Another described the ability to pause the tapering process as comforting, knowing that it was acceptable for the process to ebb and flow and be non-linear. “I know we started out super-small. I mean it was like reduce one pill a day. And it was a slow taper. And it was fine. I didn’t have any issues when we started tapering. And I was really worried about it. And he [doctor] was like we’ll do it really slowly. They really worked with doing it slow and making sure that I was comfortable with how long it took. I know there was one time I had to call her [nurse] and say, hey, you know I don’t think we should taper again this week. My body is having a really hard time. And she goes, okay, well, we’ll check in next week and we’ll go from there.” (57, no suicide behavior) Advice from patients and family members about what would help to successfully taper (n=192) More than half of all patients and family members interviewed (56%, n=108) expressed needing and wanting more support both during and after the taper. This was strongly endorsed and proportionally cited more often by those with suicidal behavior (70%, n=42) than those with no suicidal behavior (50%, n=66); see also Table 2 . Concretely, patients suggested more regular check-ins during the taper in which providers specifically ask questions of patients to understand the taper impact on pain, mental health, and withdrawal symptoms. Along with this, patients desired more reassurance from providers and the health care system that they are not isolated in their tapering process. Patients reported wanting more positive reassurance: “The support system is very important. I don’t think that can be stressed enough. I think doing anything you can to reassure people that they’re not alone. That they don’t have to do this by themselves and that you will get through it. And I know this all sounds very like warm and fuzzy and feel good but they really do make a difference. These are the things that I struggled with, in feeling alone, feeling I had to do this on my own, that I couldn’t ask for help. And unfortunately, I think society builds that up in people that you are weak or you’re incapable for a variety of things that you can describe where people do feel like they can’t ask for help.” (16, suicide attempt) Several suggested simply more messaging about what to expect from tapering and keeping an open dialogue. “Maybe just to encourage more questions and concerns, common things you may feel after or during tapering. How to deal with it. Maybe encourage some more help. Maybe help with therapy or coping strategies, methods.” (107, suicide attempt) Patients reported wishing they received more empathy from clinicians during the tapering process. Just under half of all patients interviewed (n=93, 48%) stated all providers potentially in the care pathway—from primary care to the emergency department, from pain specialist to pharmacists—should demonstrate more care and compassion towards patients with chronic pain tapering opioids, and to really listen to the patients’ reports of pain and their unique life circumstances. This was suggested proportionately more often by those with suicide behavior (n=34, 57%) than those without suicide behavior (n=59, 45%). Patients want all providers and support staff to believe them when they describe pain intensity and how it legitimately impacts their lives and to believe them when other pain management options like physical therapy or pain classes do not work. “If you’re going to take something away from somebody that’s helping them with pain, give them something to help them. Don’t just take it away from them. Listen. The whole time. This last conversation I had with Dr. [name] I don’t think we had eye to eye contact. He was in his computer the whole time. Get to know your patient. Talk to your patient. It’s like I would talk to him and anything I would say would go unheard. And he would just jump to what he wanted to say. Spend some time explaining and talking to your patients. I shouldn’t even have to ask for that!” (120, suicide attempt) Family members described frustration as they wanted more communication and were not permitted access to vital information during the tapering process though many tried to give clinicians their perspectives from living with their loved one while tapering. “Listen to their loved ones. If a loved one feels the person that is asking for increases in their medications and they feel that they’re getting too medicated, then listen to them. You need to start listening to people that are with them day in and day out.” (186, family member of suicide decedent) Patients recommended an individualized approach to tapering. This was mentioned by 41% (n=79) of all interviewees, and disproportionately cited by those who experienced suicide behavior (n=51, 85%) compared with those who did not (n=28, 21%). “I would say for one thing that all people aren’t the same. You can’t treat every patient with pain the same. They’re individual and they have their individual pain and you have to listen.” (196, family member of suicide decedent) We heard this from a number of older individuals who felt that opioid medications should not be withheld from older adults who experience chronic pain at higher rates. “I mean the big one is, if you’re going to do it [taper], just accommodate the client according to their living situation. At my age, I should be able to take as many as I need because I am nearing the end of my life. And it [the pain] is affecting the quality of my life. I mean if I was a thirty-year old, still going to work, I would understand. She’d [clinician] be concerned I’d get in a car accident or something. But I don’t even drive anymore. So I mean, yeah, accommodate the person by age, if nothing else. People who are in retirement and not out gallivanting around, making trouble or living dangerously. Personalize it.” (36, suicide attempt) Finally, to help avoid unnecessary, long-term opioid use that then requires tapering, one-third of interviewees (n=64; 33%) suggest proactive, clear, and thorough education on opioid risks and benefits is needed by clinicians when first prescribing opioids to their patients. Furthermore, patients want prescribers to engage in repeated education about opioids and the eventual need for tapering throughout the course of the opioid prescription. This recommendation was suggested more often by those who experienced suicide ideation (n=42; 70%) than those who did not (n=22; 17%) “I think talking and letting me know more about the medication itself. And the withdrawals and the side effects, you know, I think the doctor should have explained and not just give it continuous. You know, because I think the doctor should check you before they prescribe anything like that again and not give it to me so freely…Talk with your patients.” (17, suicide attempt) Discussion In this large sample of individuals who experienced opioid tapering (or decedents whose family members reported on their tapering experiences), including a significant proportion of individuals who experienced suicide behaviors, we found that patients felt unsupported during the tapering process. Many reported that clinicians did not check in consistently, did not do enough to support mental health or withdrawal while tapering, and offered few helpful alternative pain remedies. We further found that more patients expressed negative feelings about the support they received in pain management clinics than positive sentiments. Finally, a few patients reported that successful experiences with tapering incorporated wraparound services, including frequent check-ins by a variety of providers representing different disciplines (doctors, nurse practitioners, pharmacists), and the flexibility to halt the tapering process to adjust to new pain or functional changes. Suggestions from patients on what would have improved the tapering process largely mirrored the services reported by those with positive tapering experiences. Many of the adverse findings described here largely corroborate the relatively small set of qualitative work on patients experiences with tapering, including inadequate support during tapering, no alternative pain medications, and stigma faced by patients taking and/or tapering from opioids medications. 26 – 28 Positive findings—need for wraparound services and flexibility during tapering—largely corroborate previously published suggestions for improving tapering experiences. 29 , 30 Despite clear guidelines from U.S. Department of Health and Human Services 37 (HHS) on a patient-centered approach to tapering—maintaining opioids when warranted, slow dose reduction, pausing the taper so that patients can adjust, providing behavioral health support—our results indicate that these recommendations do not represent what happens routinely. In fact, many of the patients we interviewed felt that the rug was pulled out from under them, 38 and often without any reassurance that this was not the health care system’s intention. Many patients in our sample felt very distressed by the tapering process. 31 , 39 Henry et.al. 40 outlined a conceptual model for opioid tapering—assessing patients for readiness, allowing flexibility, going over tapering expectations, developing an individual plan, and not letting patients feel abandoned—and many patients in this sample may have benefitted or felt better cared for by such an approach. Despite interviewing patients from six diverse health systems—each with different approaches to tapering—our results indicated that individuals at all health systems would have preferred and benefitted from additional support. Our results can be interpreted in the context of others who have called for rolling back of forced opioid dose reductions 41 in favor of a more patient-centered approach. 42 Our results on what patients found most helpful suggest a need for more supportive services along with individualizing the timing and pace of the taper, and the flexibility to adjust the tapering pace based on overall health, pain and functioning levels, withdrawal symptoms, and other life circumstances. Recent research corroborates that taking a personalized, compassionate, flexible approach to tapering can be lead to success. 29 , 30 Successful programs that include support from nurse practitioners and pharmacists trained in motivational interviewing techniques and chronic pain, on-going check-in calls and support, and allowing for adjustments to the pace of tapering, 29 , 30 , 43 as many in our sample requested, should be adopted as the norm as they more closely resemble the guidelines provided by HHS 37 and patient preferences. To improve such programs even further, adding a strong mental health and suicide risk monitoring component would likely help patients by identifying feelings of distress early in the tapering process and allowing clinicians to adjust treatment strategies. Many patients in our sample, particularly those who were elderly, wanted the option to remain on opioids. Due to health system prescribing initiatives and policies, clinicians may not always feel they can offer patients that option. However, health systems and clinicians should be open to the idea that remaining on opioid medications may be more beneficial for some patients than deprescribing. 15 , 44 This would help patients feel that treatment is individualized to their needs, something they desire but that remains elusive. 31 , 38 Recent studies have also shown reduced suicide-related risks among individuals maintaining a stable dose compared to those who have tapered at any pace, 23 thereby strengthening the argument for maintaining stable opioid doses for some individuals. Additional evidence-based guidelines for successfully tapering individuals from opioids while simultaneously addressing pain management and avoiding negative impacts on mental health are still needed. Finally, individuals in our study experienced stigma associated with opioid use. That stigma led to a perceived lack of empathy in their encounters with clinicians. Much has been written about the stigma patients experience while taking opioids or deprescribing from the medications. 26 , 45 , 46 Clinician trainings to further reduce stigma towards this population could prove useful. 47 , 48 Prescribing and deprescribing clinicians need to improve empathic communication with patients to help them understand pain management expectations and how reducing opioid medications may play a role in their pain management goals. 49 , 50 Motivational interviewing skills to improve active listening and shared decision making may help ease the fraught discussions between prescribers and patients around opioid medication prescribing. 51 , 52 These tools should be incorporated into standard practice in pain management clinics, helping patients to feel supported rather than feeling providers are antagonistic toward them. Limitations Descriptions of deprescribing experiences may be subject to recall bias as tapering episodes could have been as distant as five years. Recruitment efforts to engage more men and individuals of color were not as successful as we had hoped; experiences of both groups may be underrepresented here. Family members were difficult to recruit and those we did recruit often had limited knowledge of specific support received or not received during the tapering process. As their loved ones all experienced serious negative harms, their recollections may be biased. Several prescribing factors (e.g., dose at start of taper, speed of taper) may affect how the taper is experienced and may contribute to the patients’ feelings of being supported or unsupported. As we did not have this information, we were unable to analyze our results by these factors. Some of these limitations are mitigated by including a large sample size from six diverse health systems. Conclusions Patients who experience opioid tapering are generally not given the support they need to succeed. Patients would prefer a flexible approach to tapering which would allow them to pause when pain increases and functioning decreases. They would also like appropriate pain management options, including better support for withdrawal symptoms, and more attention paid to mental health during the tapering process. Perspective. Patients tapering prescription opioids desire more provider-initiated communication including checking in about pain, setting expectations for withdrawal and mental health related changes, and providing support for mental health. Patients preferred opportunities to share decisions about taper speed and to have flexibility with pausing the taper as needed. Acknowledgments The authors would like to acknowledge and thank our intellectual partners at the FDA including Ohenewaa L. Ahima, Jummai Apata, David Boggs, Christina Greene, Hana Lee, Jana Mcaninch, David Menschik, Andrew Mosholder, Dinci Pennap, Scott Swain, and Scott Winiecki. Footnotes Disclosures This work was supported by the U.S. Food and Drug Administration (75F40119C10097). The sponsor gave input in the design of the study but had no role in the conduct of the study or the reporting of its results. The authors have no conflicts of interests to disclose. References 1. Land ME, Wetzel M, Geller RJ, Steck AR, Grunwell JR. Adult opioid poisonings by drug, intent, and resource use from the United States National Poison Data System from 2005–2018. Clin Toxicol (Phila). 2021;59(2):142–151. [ DOI ] [ PubMed ] [ Google Scholar ] 2. Centers for Disease Control and Prevention. Drug Overdose Deaths. Last reviewed August 22, 2023. Accessed February 28, 2022. https://www.cdc.gov/drugoverdose/deaths/index.html . [ Google Scholar ] 3. Wilson N, Kariisa M, Seth P, Smith Ht, Davis NL Drug and opioid-involved overdose deaths - United States, 2017–2018. Morb Mortal Wkly Rep (MMWR) 2020;69(11):290–297. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 4. Dowell D, Haegerich TM, Chou R. CDC guideline for prescribing opioids for chronic pain - United States, 2016. Morb Mortal Wkly Rep (MMWR). 2016;65(1):1–49. [ DOI ] [ PubMed ] [ Google Scholar ] 5. Guidry C, Dema B, Allen C, Stewart D. Impact of state legislation in Tennessee on opioid prescribing practices of orthopedic surgeons. J Opioid Manag 2022;18(2):143–149. [ DOI ] [ PubMed ] [ Google Scholar ] 6. McGinty EE, Bicket MC, Seewald NJ, et al. Effects of state opioid prescribing laws on use of opioid and other pain treatments among commercially insured U.S. adults. Ann Intern Med. 2022;175(5):617–627. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 7. Bohnert ASB, Guy GP Jr., Losby JL Opioid prescribing in the United States before and after the Centers for Disease Control and Prevention’s 2016 Opioid Guideline. Ann Intern Med. 2018;169(6):367–375. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 8. Schuchat A, Houry D, Guy GP Jr., New data on opioid use and prescribing in the United States. JAMA. 2017;318(5):425–426. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 9. Guy GP Jr., Zhang K, Bohm MK, et al. Vital signs: Changes in opioid prescribing in the United States, 2006–2015. Morb Mortal Wkly Rep (MMWR). 2017;66(26):697–704. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 10. Minegishi T, Garrido MM, Stein M, Oliva EM, Frakt AB. Opioid Discontinuation Among Patients Receiving High-Dose Long-Term Opioid Therapy in the Veterans Health Administration. J Gen Intern Med. 2020;35(Suppl 3):903–909. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 11. Nataraj N, Strahan AE, Guy GP Jr., Losby JL, Dowell D Dose tapering, increases, and discontinuity among patients on long-term high-dose opioid therapy in the United States, 2017–2019. Drug & Alcohol Depend. 2022;234:109392. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 12. Stein BD, Sherry TB, O’Neill B, Taylor EA, Sorbero M. Rapid Discontinuation of Chronic, High-Dose Opioid Treatment for Pain: Prevalence and Associated Factors. J Gen Intern Med. 2022;37(7):1603–1609. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 13. Spencer MR, Miniño AM, Warner M. Drug Overdose Deaths in the United States, 2001–2021. NCHS Data Brief 2022(457):1–8. [ PubMed ] [ Google Scholar ] 14. Buonora MJ, Hanna DB, Zhang C, et al. U.S. state policies on opioid prescribing during the peak of the prescription opioid crisis: Associations with opioid overdose mortality. Int J Drug Policy 2022;110:103888. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 15. Mackey K, Anderson J, Bourne D, Chen E, Peterson K. Benefits and harms of long-term opioid dose reduction or discontinuation in patients with chronic pain: A rapid review. J Gen Intern Med. 2020;35(Suppl 3):935–944. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 16. Kertesz SG. Outcomes after opioid dose reductions and stoppage: It’s time to start counting. J Subst Abuse Treat. 2019;103:64–65. [ DOI ] [ PubMed ] [ Google Scholar ] 17. Kertesz SG, Gordon AJ. A crisis of opioids and the limits of prescription control: United States. Addiction. 2019;114(1):169–180. [ DOI ] [ PubMed ] [ Google Scholar ] 18. Manhapra A, Arias AJ, Ballantyne JC. The conundrum of opioid tapering in long-term opioid therapy for chronic pain: A commentary. Subst Abus. 2018;39(2):152–161. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 19. Dowell D, Haegerich T, Chou R. No shortcuts to safer opioid prescribing. NEJM. 2019;380(24):2285–2287. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 20. Oliva EM, Bowe T, Manhapra A, et al. Associations between stopping prescriptions for opioids, length of opioid treatment, and overdose or suicide deaths in US veterans: Observational evaluation. BMJ. 2020;368:m283. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 21. Agnoli A, Xing G, Tancredi DJ, Magnan E, Jerant A, Fenton JJ. Association of dose tapering with overdose or mental health crisis among patients prescribed long-term opioids. JAMA. 2021;326(5):411–419. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 22. Hallvik SE, El Ibrahimi S, Johnston K, et al. Patient outcomes after opioid dose reduction among patients with chronic opioid therapy. Pain. 2022;163(1):83–90. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 23. Larochelle MR, Lodi S, Yan S, Clothier BA, Goldsmith ES, Bohnert ASB. Comparative effectiveness of opioid tapering or abrupt discontinuation vs no dosage change for opioid overdose or suicide for patients receiving stable long-term opioid therapy. JAMA Netw Open. 2022;5(8):e2226523. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 24. Fenton JJ, Magnan E, Tseregounis IE, Xing G, Agnoli AL, Tancredi DJ. Long-term risk of overdose or mental health crisis after opioid dose tapering. JAMA Netw Open. 2022;5(6):e2216726. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 25. Cross AJ, Buchbinder R, Mathieson S, et al. Barriers and enablers to monitoring and deprescribing opioid analgesics for chronic non-cancer pain: A systematic review with qualitative evidence synthesis using the theoretical domains framework. BMJ Qual Saf 2022;31(5):387–400. [ DOI ] [ PubMed ] [ Google Scholar ] 26. Benintendi A, Kosakowski S, Lagisetty P, Larochelle M, Bohnert ASB, Bazzi AR. “I felt like I had a scarlet letter”: Recurring experiences of structural stigma surrounding opioid tapers among patients with chronic, non-cancer pain. Drug & Alcohol Depend. 2021;222:108664. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 27. Kosakowski S, Benintendi A, Lagisetty P, Larochelle MR, Bohnert ASB, Bazzi AR. Patient perspectives on improving patient-provider relationships and provider communication during opioid tapering. J Gen Intern Med. 2022;37(7):1722–1728. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 28. Langford AV, Gnjidic D, Lin CC, et al. “The lesser of two evils”: A framework analysis of consumers’ perspectives on opioid deprescribing and the development of opioid deprescribing guidelines. Pain. 2021;162(11):2686–2692. [ DOI ] [ PubMed ] [ Google Scholar ] 29. Schneider JL, Firemark AJ, Papajorgji-Taylor D, et al. “I really had somebody in my corner.” Patient experiences with a pharmacist-led opioid tapering program. J Am Pharm Assoc (2003) 2023;63:241–251. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 30. Kuntz JL, Dickerson JF, Schneider JL, et al. Factors associated with opioid-tapering success: A mixed methods study. J Am Pharm Assoc (2003) 2021;61(3):248–257.e241. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 31. Yarborough BJ, Stumbo SP, Schneider JL, et al. Impact of opioid dose reductions on patient-reported mental health and suicide-related behavior and relationship to patient choice in tapering decisions. J Pain. Preprint. Posted online Nov 10, 2023. doi: 10.1016/j.jpain.2023.11.002. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 32. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration & Policy in Mental Health. 2015;42(5):533–544. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 33. Posner K, Brown GK, Stanley B, et al. The Columbia-Suicide Severity Rating Scale: Initial validity and internal consistency findings from three multisite studies with adolescents and adults. Am J Psychiatry. 2011;168(12):1266–1277. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 34. Braun V, Clarke V. Thematic Analysis. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D, Sher KJ, eds. APA handbook of research methods in psychology. Vol 2. Research designs: Quantitative, qualitative, neuropsychological, and biological. Washington, DC, US: American Psychological Association; 2012:57–71. [ Google Scholar ] 35. Clarke V, Braun V. Thematic analysis. J Posit Psychol. 2017;12(3):297–298. [ Google Scholar ] 36. Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences. 2013;15(3):398–405. [ DOI ] [ PubMed ] [ Google Scholar ] 37. U. S. Department of Health & Human Services. HHS Guide for Clinicians on the Appropriate Dosage Reduction or Discontinuation of Long-Term Opioid Analgesics. Published October 2019. Accessed January 12, 2020. https://www.hhs.gov/system/files/Dosage_Reduction_Discontinuation.pdf [ Google Scholar ] 38. Matthias MS, Johnson NL, Shields CG, et al. “I’m Not Gonna Pull the Rug out From Under You”: Patient-Provider Communication About Opioid Tapering. J Pain. Preprint. Posted online Nov 18, 2017. doi: 10.1016/j.jpain.2017.06.008. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 39. McNeilage AG, Avery NS, Holliday S, Glare PA, Ashton-James CE. A qualitative trajectory analysis of patients’ experiences tapering opioids for chronic pain. Pain. 2022;163(2):e246–e260. [ DOI ] [ PubMed ] [ Google Scholar ] 40. Henry SG, Paterniti DA, Feng B, et al. Patients’ experience with opioid tapering: A conceptual model with recommendations for clinicians. J Pain. 2019;20(2):181–191. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 41. Darnall BD, Juurlink D, Kerns RD, et al. International stakeholder community of pain experts and leaders call for an urgent action on forced opioid tapering. Pain Med. 2019;20(3):429–433. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 42. Kertesz SG, McCullough MB, Darnall BD, Varley AL. Promoting patient-centeredness in opioid deprescribing: A blueprint for de-implementation science. J Gen Intern Med. 2020;35(Suppl 3):972–977. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 43. Nicholas MK, Asghari A, Sharpe L, et al. Reducing the use of opioids by patients with chronic pain: an effectiveness study with long-term follow-up. Pain. 2020;161(3):509–519. [ DOI ] [ PubMed ] [ Google Scholar ] 44. Nevedal AL, Timko C, Lor MC, Hoggatt KJ. Patient and Provider Perspectives on Benefits and Harms of Continuing, Tapering, and Discontinuing Long-Term Opioid Therapy. J Gen Intern Med. 2023;38(8):1802–1811. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 45. Knight KR, Kushel M, Chang JS, et al. Opioid pharmacovigilance: A clinical-social history of the changes in opioid prescribing for patients with co-occurring chronic non-cancer pain and substance use. Social Science & Medicine. 2017;186:87–95. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 46. Collier R “Complainers, malingerers and drug-seekers” - the stigma of living with chronic pain. Cmaj. 2018;190(7):E204–e205. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 47. Brown RL, Batty E, Lofwall M, Kiviniemi M, Kizewski A. Opioid use-related stigma and health care decision-making. Psychol Addict Behav. 2023;37(2):222–227. [ DOI ] [ PubMed ] [ Google Scholar ] 48. Klusaritz H, Bilger A, Paterson E, et al. Impact of Stigma on Clinician Training for Opioid Use Disorder Care: A Qualitative Study in a Primary Care Learning Collaborative. Ann Fam Med. 2023;21(Suppl 2):S31–s38. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 49. Massey M, van den Berk Clark C, Fowler J, Scherrer JF. Discussions between patients with chronic pain and their primary care provider about opioids and pain relief during routine clinic encounters. J Opioid Manag 2019;15(2):137–146. [ DOI ] [ PubMed ] [ Google Scholar ] 50. Marcovitz DE, Suzuki J. Setting limits with controlled substances—the role of motivational interviewing to increase comfort. JAMA Psychiatry. 2022;79(4):375–376. [ DOI ] [ PubMed ] [ Google Scholar ] 51. Crawley A, Murphy L, Regier L, McKee N. Tapering opioids using motivational interviewing. Can Fam Physician. 2018;64(8):584–587. [ PMC free article ] [ PubMed ] [ Google Scholar ] 52. Danielson EC, Mazurenko O, Andraka-Christou BT, et al. An analysis of primary care clinician communication about risk, benefits, and goals related to chronic opioid therapy. MDM Policy Pract. 2019;4(2):2381468319892572. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] ACTIONS View on publisher site PDF (98.1 KB) Cite Collections Permalink PERMALINK Copy RESOURCES Similar articles Cited by other articles Links to NCBI Databases Cite Copy Download .nbib .nbib Format: AMA APA MLA NLM Add to Collections Create a new collection Add to an existing collection Name your collection * Choose a collection Unable to load your collection due to an error Please try again Add Cancel Follow NCBI NCBI on X (formerly known as Twitter) NCBI on Facebook NCBI on LinkedIn NCBI on GitHub NCBI RSS feed Connect with NLM NLM on X (formerly known as Twitter) NLM on Facebook NLM on YouTube National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 Web Policies FOIA HHS Vulnerability Disclosure Help Accessibility Careers NLM NIH HHS USA.gov Back to Top