Impact of Opioid Dose Reductions on Patient-Reported Mental Health and Suicide-Related Behavior and Relationship to Patient Choice in Tapering Decisions.

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Published in final edited form as: J Pain. 2023 Nov 10;25(4):1094–1105. doi: 10.1016/j.jpain.2023.11.002 Search in PMC Search in PubMed View in NLM Catalog Add to search Impact of opioid dose reductions on patient-reported mental health and suicide-related behavior and relationship to patient choice in tapering decisions 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, 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 , Sonya Negriff Sonya Negriff , PhD 5 Kaiser Permanente Southern California, Pasadena, CA USA Find articles by Sonya Negriff 5 , Rebecca C Rossom Rebecca C Rossom , MD, MS 4 HealthPartners Institute, Minneapolis, MN USA Find articles by Rebecca C Rossom 4 , Gwen Lapham Gwen Lapham , PhD 6 Kaiser Permanente Washington Health Research Institute, Seattle, WA USA Find articles by Gwen Lapham 6 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, Honolulu, HI USA 4 HealthPartners Institute, Minneapolis, MN USA 5 Kaiser Permanente Southern California, Pasadena, CA USA 6 Kaiser Permanente Washington Health Research Institute, Seattle, WA USA ✉ Corresponding author: Bobbi Jo Yarborough, PsyD, Senior Investigator, Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave., Portland, Oregon 97227, USA, [email protected] Issue date 2024 Apr. PMC Copyright notice PMCID: PMC13075373  NIHMSID: NIHMS2140705  PMID: 37952862 The publisher's version of this article is available at J Pain Abstract Mental health and suicide-related harms resulting from prescription opioid tapering are poorly documented and understood. Six health systems contributed opioid prescribing data from January 2016-April 2020. Patients 18–70 years old with evidence of opioid tapering participated in semi-structured interviews. Individuals who experienced suicide attempts were oversampled. Family members of suicide decedents that had experienced opioid tapering were also interviewed. Interviews were analyzed using thematic analysis. Study participants included 176 patients and 16 family members. Patients were 68% female, 80% White and 15% Hispanic, mean age 58. All family members were female spouses of White, non-Hispanic male decedents. Among the subgroup (n = 60) who experienced a documented suicide attempt, reported experiencing suicidal ideation during tapering, or were family members of suicide decedents, 40% reported that opioid tapering exacerbated previously recognized mental health issues and 25% reported that tapering triggered new onset mental health concerns. Among participants with suicide behavior, 47% directly attributed it to opioid tapering. Common precipitants included increased pain, reduced life engagement, sleep problems, withdrawal, relationship dissolution, and negative consequences of opioid substitution with other substances for pain relief. Most respondents reporting suicide behavior felt that the decision to taper was made by the health care system or a clinician (67%) whereas patients not reporting suicide behavior were more likely to report it was their own decision (42%). This study describes patient-reported mental health deterioration or suicide behavior while tapering prescription opioids. Clinicians should screen for, monitor, and treat suicide behavior while assisting patients in tapering opioids. Keywords: Opioid deprescribing, suicidal behavior, suicide attempt, depression, anxiety Introduction From 1999 to 2010, the United States experienced a decade of escalating opioid medication prescribing and associated opioid-related harms. 1 – 4 Opioid prescribing peaked in 2010, where it leveled off for two years, before declining since. 5 – 7 In 2018, evidence on the overall lack of efficacy of opioid medications for pain management became available 8 but even prior, a national opioid prescribing guideline, 9 health care system policy changes, and state-led interventions 10 – 12 sought to encourage or regulate changes in prescribing practices. 5 – 7 The intention of such initiatives was the hope that dose reduction or discontinuation from opioid prescription medications would lead to fewer negative harms such as opioid-related overdose deaths. However, the age-adjusted rate of drug overdose deaths involving natural and semisynthetic opioids has not changed significantly since 2010 13 and the overall impact of these policies was modest. 12 Moreover, there has now been increasing concern that opioid deprescribing may itself induce patient harms 14 – 18 including risks related to suicide. 19 – 21 Large population-based studies have recently begun to describe the incidence of harms associated with deprescribing, including an increase in overdoses, suicide, and mental health crises. 19 – 23 At the individual level, several qualitative studies have described some of the concerns that patients have experienced with opioid deprescribing: lack of communication from providers around a rationale for the requirement to taper, lack of shared decision-making, lack of a flexible or personalized tapering approach, stigma, and lack of appropriate support. 24 – 28 A recent qualitative synthesis of 21 published studies documented barriers for patients as they experience deprescribing from opioids, such as limited alternatives to opioids and patient reluctance to change. 29 However, there is still not enough known about patient experiences with opioid deprescribing or discontinuation, particularly the impacts on mental health or how tapering may precipitate or exacerbate suicide behavior. Further, little is known about whether the patient’s role in the opioid taper decision-making process may affect the tapering experience or its effects on mental health and suicide behavior. As part of a larger study which sought to quantify suicide-related risks associated with opioid dose reductions (unpublished manuscript under review, Yarborough 2023), we interviewed patients with opioid deprescribing experiences and family members of suicide decedents who had experiences with opioid tapering across six health system sites. Our goal was to understand, from the patient and family member perspectives, the process by which tapering may or may not contribute to mental health deterioration and/or suicide behavior. This mixed methods paper reports on how patient mental health, including suicide behavior, was or was not affected during the opioid tapering process; what, if any, suicide behavior was associated with tapering; and the degree that patient choice in taper decision-making affected mental health or suicide risk during tapering. Methods Sites Interview sites included six health systems affiliated with the Mental Health Research Network, 30 serving eight million patients in eight states: HealthPartners (Minnesota, Wisconsin), Henry Ford (Michigan), and the Kaiser Permanente regions serving California, Hawaii, Idaho, Oregon, and Washington. These health systems provide comprehensive medical and behavioral health care to members/patients with a range of insurance types. Sample Identification We sampled individuals with evidence of opioid deprescribing episodes between 2016 to 2018 identified as part of a larger study. A second sample was created to identify more recent deprescribing experiences (between 2019 and April 2020) using the same criteria established in the main study. Additional methodological details on opioid prescribing trajectories are described in Supplemental Appendix 1 . We proposed to identify and interview 30 individuals with evidence of tapering at each participating site. We used purposeful sampling 31 and a variety of post facto approaches to enrich the interview sample; this allowed our team to identify and hear from a broad range of individuals, particularly those who might have experienced suicidal ideation while tapering from prescribed opioids. We first attempted to recruit all individuals with a suicide attempt documented in the electronic health record (EHR) during a 24-month deprescribing trajectory. In subsequent rounds of recruitment, we randomly sampled patients from deprescribing trajectories identified in the main study with the highest proportions of suicide attempts. Our hope in doing so was to possibly identify additional individuals who may have shared common tapering experiences with those who made suicide attempts but who themselves did not make attempts or to identify additional individuals who made attempts that were not documented in the EHR. Finally, in the last round of recruitment, we attempted to balance the sample, when possible, based on gender, race and ethnicity to ensure a variety of perspectives were heard. Using available death data, we also identified suicide decedents from the main study sample, with evidence of opioid deprescribing, whose deaths occurred between 2012–2019. Each site attempted to identify five family members of decedents for interviews. Two sites with low numbers of suicide decedents were unable to identify any known family members to recruit. Recruitment All sites began by mailing recruitment letters and a consent form to prospective patient interview candidates. Individuals could respond to local telephone numbers to indicate interest in participating or to opt out of the study. Trained interviewers at each site began recruitment calls approximately five days after the recruitment letters were mailed. Sites where email was used as a predominant method of communication sent a follow-up email (mirroring recruitment letter content) approximately five days following the initial mailing. Interviewers made up to six attempts to reach participants, including leaving messages, prior to ending recruitment efforts. Family members of decedents (hereafter referred to as family members) were approached for recruitment in a similar manner. See Supplemental Appendix 1 for additional details. All recruitment efforts and interviews took place between March and October 2021. All study materials and procedures were approved and monitored by the Kaiser Permanente Northwest Institutional Review Board, each site ceded review authority. Interview process The study team developed a semi-structured interview guide to explore patient-reported experiences with tapering, specifically how mental health and suicide behavior may be impacted by opioid tapering, and to better understand the degree of choice patients felt they had in the decision to discontinue or taper opioid prescriptions. As no previous work was identified that specifically asked patients directly about suicide-related thoughts and behaviors during tapering, the research team created the interview guide de novo. All co-authors contributed to the development of the instrument. The data presented in this paper comes principally from the portion of the interview guide which asks patients to directly recall their experiences while tapering (i.e. in the process of deprescribing from opioids) and attribute their mental health state and/or thoughts and behaviors around suicide directly to the tapering process. Patients were asked to recall tapering experiences which may have been up to five years prior. The patient and family interview guides are available in Supplemental Appendices 2 - 3 . Interviewers (male and female) from all six sites (including authors SS, JS) met virtually, weekly, over the course of one month to prepare for the interview process. All interviewers were masters or doctoral level trained in social work, sociology, public health, or psychology with experience working with a mental health population who were employed at the participating research centers. Interviewers were trained on the interview guide, qualitative interviewing techniques (most were experienced interviewers), and how to conduct a suicide risk assessment. A robust protocol was developed and followed for any individual reporting suicidal ideation (past 30 days) or suicide behavior (past 90 days), including administration of the Columbia Suicide Severity Rating Scale 32 and consultation with locally-licensed clinical psychologists or psychiatrists. Interviews were conducted via telephone (study period was during COVID-19), typically lasted 40–60 minutes, and were audio-recorded and professionally transcribed verbatim. Interview participants received $50 as compensation for their participation. The interview team met virtually, weekly, during the interview period to discuss progress and insights obtained from interviews. These discussions allowed the analytic team to assess and determine data saturation as new reports from interviewers became less frequent. At the end of interviewing the entire team met virtually for an hour-long semi-structured debrief of dominant themes heard during interviews which helped to inform the analytic process. Analytic process The qualitative analytic team (BJY, SS, JS) began by independently reading the first ten transcripts. Attention was paid to both expected content related to questions in the interview guide (e.g., deductive codes) and information that was offered by patients during the semi-structured interview (e.g., inductive codes). Results were discussed and formed the basis of the codebook. Two members (SS, JS) met on two further occasions to further refine the codebook and update code definitions as needed. These analysts then coded the initial 10 transcripts using Atlas.ti, a qualitative coding software, and met to iteratively debrief the coding process. One additional code was later added to capture current life circumstances of participants and each coder retroactively applied that code to previously coded transcripts. No further new codes were required. The analysts summarized queries of the coded data in initial analytic reports by extracting subthemes among categories of individuals (e.g., those who experienced a suicide attempt, suicide ideation, or neither). Biweekly the analytic team reviewed the summarized queries and discussed emergent and coalescing themes related to the queries and study questions of interest. We employed thematic analysis 33 , 34 to summarize queries which were then expanded to include narrative descriptions of phenomena and direct quotes as examples, or counter-examples, in theme reports. The team discussed and edited the theme reports iteratively to ensure agreement on results. Due to the large number of interviews completed, we include counts of phenomena and behaviors below to help the reader understand their overall importance in the tapering process. Results We completed 176 interviews with patients from a sample of 645 potential participants for a final participation rate of 27%. Forty-five percent passively refused (i.e., did not answer their phone) while 28% actively declined participation. In selection bias analyses, interviewed individuals were more likely than those who did not complete interviews to be female and white despite trying to over-recruit men and persons of color. The interviewed sample was more likely to include individuals who self-identified as Hispanic or mixed race, likely due to over-sampling recruitment efforts. We interviewed proportionally fewer Asian patients than were represented in the sample pool. Additional interviewed patient characteristics are included in Table 1 . Table 1. Characteristics of patient interview sample by suicide behavior group, 1 n=176 Documented suicide attempt (n=26) Reported suicidal ideation (n=18) No suicide behavior (n=132) Total patient sample (n=176) P value n % n % n % n % Age, years 1 0.09 18–24 years old 0 0 0 0 0 0 0 0 25–34 years old 2 7.7 1 5.6 7 5.3 10 5.7 35–44 years old 2 7.7 5 27.8 15 11.4 22 12.5 45–54 years old 8 30.8 2 11.1 19 14.4 29 16.5 55–64 years old 7 26.9 8 44.4 39 29.5 54 30.7 65–80 years old 7 26.9 2 11.1 52 39.4 61 34.7 Sex 0.96 Male 9 34.6 6 33.3 42 31.8 57 32.4 Female 17 65.4 12 66.7 90 68.2 119 67.6 Race 2 0.81 More than one race reported 1 3.8 1 5.6 7 5.3 9 5.1 American Indian/ Alaskan Native 1 3.8 0 0 2 1.5 3 1.7 Asian 1 3.8 0 0 1 0.8 2 1.1 Black/ African American 2 7.7 1 5.6 13 9.8 16 9.1 Native Hawaiian/ Other Pacific Islander 1 3.8 0 0 1 0.8 2 1.1 Unknown 0 0 1 5.6 2 1.5 3 1.7 White 20 76.9 15 83.3 106 80.3 141 80.1 Hispanic ethnicity 0.51 Yes 4 15.4 1 5.6 21 15.9 26 14.8 No 22 84.6 17 94.4 111 84.1 150 85.2 Open in a new tab 1 Family members are not included in table due to restricted access to decedent EHR information. 2 Numbers may not add to 100% due to rounding. We completed interviews for 16 out of 65 suicide decedent family members we attempted to recruit (25%). All were female current, former or estranged spouses of 16 different white, non-Hispanic male decedents. The mean age of decedents was 59. Our final sample consisted of 192 interviewees. We categorized completed interviews into four mutually exclusive groups based on both patient EHR data and information gathered through interviews; the large number of completed interviews allowed us to adopt this mixed-methods approach. Categories included: 1) those with a documented suicide attempt in the EHR during a deprescribing episode who, during the interview, confirmed that they had experienced suicidal ideation during opioid deprescribing (n=26, 14%); 2) those without a documented suicide attempt in the EHR within a deprescribing episode who, during the interview, reported they had experienced suicidal ideation during opioid deprescribing (n=18, 9%); 3) suicide decedents with evidence of opioid deprescribing whose family members participated in an interview (n=16, 8%); or 4) those with no documented suicide behavior in the EHR during opioid deprescribing and/or none reported in the interview (n=132, 69%). In some analyses the first three subgroups who experienced a suicide attempt, suicidal ideation or were family members of suicide decedents (n=60) were combined to contrast their experiences with the subgroup with no reported suicide behavior (n=132). We report percentages throughout the results to demonstrate relative proportions of the sample that expressed various themes; however, we caution readers that these should not be interpreted as the population prevalence given the purposive sampling methods described above. Additional supporting quotes are included in Supplemental appendix 4 . Relationship between opioid tapering and behavioral, emotional, or mental health changes Thirty-seven percent of the sample without suicide behavior (n=49) reported that opioid tapering had no discernable impact on their behavior or mood; none of the individuals with suicide behavior expressed this (see Table 2 ). Another 8% (n=5) of those with suicide behavior and 8% (n=11) of those without suicide behavior) described changes in behavior characterized by aggression, agitation, feeling intense emotions, or feeling emotionally unstable. Table 2. Patient- or family-reported mental health impact of opioid tapering or discontinuation, n=192 1 Documented suicide attempt (n=26) Reported suicidal ideation (n=18) Suicide decedents (n=16) 2 Any suicide behavior (n=60) 3 No suicide behavior reported (n=132) Total (n=192) n % n % n % n % n % n % Previous mental health issues were exacerbated by opioid tapering 8 31 9 50 7 44 24 40 18 14 42 22 Onset of incident mental health symptom(s) was related to opioid tapering 5 19 7 39 3 19 15 25 8 6 23 12 Behavioral or emotional change during opioid tapering 2 8 1 6 2 13 5 8 11 8 16 8 Tapering had no impact on mood NM 4 NM NM NM NM NM -- -- 49 37 49 26 Known mental health issues were not impacted by opioid tapering NM NM NM NM NM NM -- -- 9 7 9 5 Unable to discern from transcript 11 42 1 6 4 25 16 27 37 28 53 28 Open in a new tab 1 Percentages in columns and rows may not total to 100% due to rounding. Categories are mutually exclusive based on predominant patient experience. 2 Family member interview 3 This column sums the three individual columns for individuals with suicide attempt, suicidal ideation, or suicide decedent. 4 NM=Not mentioned, i.e. these categories were not ascertained from transcripts among these groups. Theme 1: Opioid tapering had little to no impact on mood Nearly 40% (n=49 of 132) of those with no suicide-related behavior during tapering reported that the experience of tapering did not discernibly impact their mood or behavior. As one patient explained, it was the increase in pain that made them feel badly but opioid tapering did not impact mood otherwise. “Not much of a mood at all other than [feeling] awful. I mean I didn’t do anything socially so it wasn’t like I was snappy or anything. It was a crappy [physical] experience.” (140, no suicide behavior) For others it was a personal choice to stop taking opioids (see Relationship between patient autonomy with taper decision making and suicide behavior ), so feelings were often commensurate with their desire to be off opioids. “I did it by choice. I don’t remember any adverse emotional feelings or anything from it.” (52, no suicide behavior) Theme 2: Opioid tapering caused behavioral changes and intense emotions One participant, when asked to describe how they felt while tapering, responded: “Like a basket case, like crazy and crying. Yeah just not good. Not good at all. Didn’t laugh, actually it took me 3 years to even smile after all that situation…” (154, suicide attempt) A family member described a very significant change in their spouse’s behavior during tapering: “He was a lot more easily agitated. So just too much noise from the kids would cause him to yell a lot more. So a lot more aggression, a lot more verbal aggression. A lot more agitation.” (185, family member of suicide decedent) Some participants reported that opioid tapering affected their mental health. When we analyzed the total sample by suicide behavior status (any reported suicide behavior or no reported suicide behavior), we found that worsened mental health was more common among those who reported suicide behavior compared to those who did not. Though rarer in occurrence, the sentiments expressed by those without suicide behavior were similar in nature to those with suicide behavior and are presented under the same themes below (see also Table 2 ). We identified two themes pertaining to mental health and opioid tapering. Theme 3: Existing mental health conditions were aggravated by opioid tapering Forty percent of those who experienced any suicide behavior (n=24 of 60) and 14% of those without suicide behavior (n=18 of 132) reported that deteriorating mental health during opioid tapering worsened previously identified mental health issues, typically anxiety or depression. “My mood was all over the place. Stress, anxiety. My anxiety was through the roof. And my depression probably wasn’t any better either. Yeah, I definitely noticed a mood change.” (57, no suicide behavior) For some, tapering triggered a relapse of dormant symptoms or an exacerbation of ongoing symptoms but rather than the gradual onset of a recurrence that these participants were accustomed to, they described being taken by surprise by the immediate onset of anxiety or depression symptoms as pain increased. “I guess the pain started increasing. I felt overwhelmed. I mean I knew in my mind it would hopefully, as soon as everything leveled out, get better…The fear of the unknown, not knowing if it [pain] would ever go away or come back down or if I’d be able to do all those things I was losing again, it felt pretty devastating…I unfortunately have a history of depression anyway. And so it felt like that but a lot faster than usual. Usually, it’s gradual. It happens over a few months. This was like immediate. That part was unsettling.” (27, suicidal ideation) Some described a dual effect of increased pain and what they came to understand as reduced protection against depression, the latter a feature of the pain medication that individuals were not always even aware of prior to the dose reduction. “And I don’t know if it was the sadness and not having the effect that opioids gave me. But my depression dropped to the floor it just fell through the roof to the floor. It isn’t pretty. I am not me, I just lock myself away in a room, sometimes a month at a time…I wasn’t happy. I was just depressed. I didn’t want to do anything. Part of it was because of the pain but part of it was because of the opioids.” (120, suicide attempt) Theme 4: Incident mental health symptoms began during tapering Some participants reported that they began experiencing mental health problems for the first time during opioid tapering. This was higher among people with suicide behavior. About 20% of those who attempted suicide (n=5 of 26) and a similar proportion of family members of suicide decedents (n=3 of 16) reported that mental health problems began as a result of opioid tapering. Roughly 40% (n=7 of 18) of those who experienced suicidal ideation reported incident mental health issues arose during the tapering process. Another example of the reduced protection against depression described above, one woman shared how the opioids had been numbing her emotions. She marked the commencement of tapering as the beginning of the decline in her mental health: “I think it’s [taper] what started my mental decline, honestly. That was the year that I was having a really hard time with my kids. And I even left my doctor’s office crying one time because of the mixture of weaning off the pills and the kids are acting like jerks. And the medicine is kind of helping with that as well. Numbing the crap at home. He [doctor] let me walk out of there crazy because he was weaning me off of these pills that are helping deal with my life, and not giving me any other options. Not replacing it with anything.” (53, suicidal ideation) A family member described how her husband’s onset of depression was related to being deprescribed from opioids. I: Did he ever express any worries about being more anxious or being more depressed with coming down on his opioids? R: Depression yes, he did say ‘I think I have depression.’ And that’s when I did get him back into the doctor and they put him on depression pills. I: So did he mention feeling depressed for the first time during that time that he was coming down on his opioids? R: Yes… He just would get angrier at different things that he shouldn’t have been angry at. And his mood started changing where him and I would get into arguments, quite often… It [anger, depression] was new when he started coming down from the pills.” (186, family member of suicide decedent) Though relatively uncommon among individuals without suicide behavior (<10%; n=8 of 132), there were individuals who reported incident mental health symptoms during the tapering process. One individual reporting a first episode of depression described how it affected participation in their church community, previously a place where they experienced joy. “When that pain hits, anything happens… I didn’t want to be bothered with people [at church], everybody wants to talk to you. Just didn’t want to talk, just kind of didn’t want to be bothered… it [depression] surprised me because it’s just not me.” (102, no suicide behavior) Relationship between opioid tapering and patient and family member attribution of suicide behavior Half the sub-sample who experienced suicide behavior during opioid tapering attributed it to a variety of life circumstances and stressors (n=30 of 60; 50%). “It wasn’t just one thing. It was a combination of things. I don’t know that the suicidal ideation or attempt was necessarily a direct byproduct of being taken off the medication. Although, it certainly could have. A lot of it has to do with my mindset of I don’t have this anymore. I don’t have whatever daily amount of relief that I get from this that allowed me to live a better life, now I don’t have anymore. And that was really painful and added a lot of, I think misery …you know to my psychological state.” (10, suicide attempt) The other half (n=28 of 60; 47%) attributed the suicide behavior directly to opioid deprescribing. This was more common among the patient sample (both attempt and ideation >50%) than in the sample of family members (25%; n=4 of 16). We identified three themes described below (see also Table 3 ). Table 3. Attribution of suicide attempt, suicidal ideation or suicide death to opioid tapering among those experiencing suicide behavior, n=60 Documented suicide attempt (n=26) Reported suicidal ideation (n=18) Suicide decedents 1 (n=16) Total (n=60) n % n % n % n % Suicide behavior was attributed to opioid tapering 14 54 10 56 4 25 28 47 Suicide behavior was attributed to a combination of factors 11 42 8 44 11 69 30 50 Unable to determine 1 4 0 0 1 6 2 3 Open in a new tab 1 Family member interview. Categories are mutually exclusive based on predominant patient experience. Theme 1: Increased pain led to lower quality of life and feelings of hopelessness Being in pain and the associated decline in quality of life left some individuals contemplating suicide, others made suicide attempts. “Well, during the time that I was totally off my meds, all I could feel was pain. All I wanted to do was die. So that’s all I thought about. So I first attempted it with pain pills. Hey, I’ll get a good night’s sleep and I might not wake up. Wrong. And eventually, I set it on slitting my wrist… I’m still in a great deal of pain…without pain meds I can’t function on a day-to-day existence. I can’t work. I’m forty-eight years old, in my prime years and I can’t work. I can barely walk the twenty-five feet to my bathroom in my house. I just have caretakers that come to my house, wash my clothes…I’m bedridden…It takes a great deal of despair and willpower to attempt to kill yourself.” (78, suicide attempt) For some, hopelessness resulted from feeling unsupported when no alternative pain treatment was offered by the health care system. “R: During the midst of that whole thing, I took a handful of the pills she [doctor] gave and tried to kill myself and my husband took me to the hospital. I: That was after she [doctor] said you wouldn’t be prescribed them anymore? R: It was after she said she wasn’t going to give me any help. It was humiliating but mostly that feeling of there’s nowhere to go. There’s no one to ask for help…I am tired of fighting with healthcare people...feeling disbelieved all the time like you’re lying. I don’t think it’s an opioid problem. I also think it’s a not getting any help problem.” (115, suicide attempt) Some individuals had experienced suicidal ideation in the past, but for others it was a new experience. “R: His doctor was getting ready to reduce it again, and he could barely survive on what he was getting at the time. The doctor prior to that a couple years had cut his medication...I think it was in half and that was way too much. I: Had he ever had bouts of depression or suicidal thinking before he was on opioids? R: Not even until they started cutting his meds, never before that. I: What role would you say reducing opioids played in his death? R: 100%.” (196, family member of suicide decedent) Theme 2: Increased pain, sleep interference, withdrawal, and stigma left patients feeling unsupported and desperate for relief Participants described how difficult it was to cope with both their chronic pain and additional negative experiences from the taper such as significant lack of sleep, difficult withdrawal symptoms, fear, and stigma. On why suicide ideation increased during a taper, one participant reported: “Certainly between being in pain, feeling terrible…it’s difficult to live with chronic pain and in a chronic pain condition. And also kind of the stigma around these medications. And the fear of regulation or, you know, the sort of swings back and forth between acceptability of the medications and all of that stuff, it’s certainly difficult… I think the inability to sleep and the kind of emotional dysregulation certainly didn’t help…” (129, suicidal ideation) Or as another explained: “Your number one concern is running out [of opioids]. Period. That’s all you worry about is running out. Because you know it’s happened and it will happen again. And so you know you’ve been through the withdrawals. You’ll go through them again…and again and again. And I don’t know how many more years I can take it. Like I want to kill myself. Literally. To kill the pain, withdrawal pain, you want to die, just die. Just wipe yourself off the Earth. [On suicide attempt] I couldn’t sleep. I was on several days without sleep. And everything was just going haywire. And I said that’s it. I want to sleep. So I took a mouthful of sleeping pills [alongside prescription opioids]. (65, suicide attempt) Theme 3: Using other substances for pain relief or withdrawal symptom management contributed to a downward spiral A few individuals reported they turned to other substances to try to manage increased pain or withdrawal. “Three years ago, I had run out of pain pills. And I had gone a day or two. And I was just going nuts. And so, I’m a recovering alcoholic too. I was like a month shy of five years off alcohol. And I thought…This is an addict’s brain. I thought I know there’s alcohol in the house. I’m going to drink for two weeks until I get my pain pills and then I’ll quit. So what happened I started drinking. And within five days, I was in the hospital because I tried to commit suicide. Never before in my life had I ever, you know, tried to commit suicide.” (28, suicide attempt) Relationship between patient autonomy with taper decision making and suicide behavior The reported feelings of helplessness and hopelessness among many in our sample led the research team to analyze the relationship between patient autonomy with taper decision-making and suicide behavior. Participants were asked as part of the interview to describe the conversation around the decision to deprescribe opioid medications. Theme 1: Autonomy and reported reasons for wanting to stop opioid medications Patients not reporting any suicide behavior were more likely to report that the decision to taper opioids was either theirs (42%, n=55 of 132) or was shared with their clinician (20%, n=26 of 132); however, over one-third did attribute the decision to the health care system (36%, n=47 of 132). Autonomy and experiences of the former groups (theirs or shared decision) are described within this theme. Experiences in the latter group (health care system decision) were similar to those of participants who reported suicide behavior and a lack of autonomy; these experiences are described in the theme that follows. The two most common reasons patients reported they decided to reduce or stop their opioid medications were that they were worried about becoming opioid dependent or they felt the pain medication was not working. “I kind of took it upon myself to try and get off of those things… it was not my doctor telling me to cut it in half. And also sort of the line between am I in pain or am I taking the pill to take the pill started blurring I guess, especially at nighttime. Like getting to sleep, I started to question if I was in enough pain to be taking it. And it kind of freaked me out.” (84, no suicide behavior) Though some individuals who felt they had a choice in the decision to taper experienced increased pain and emotionality, in general those in this group reported relatively more ease with the tapering process than those who did not feel they participated in the decision-making process. “I didn’t have a tough time stopping at all…through the whole duration of this care that I got from Dr. [Name] everything was very much an open discussion. [But] there was nothing to talk about. So I guess there [was] just no need for that because my patient and doctor relationship [was] just that golden.” (11, no suicide behavior) Theme 2: Lack of autonomy and relationship with suicide behavior A majority of patients/family members reporting suicide behavior felt that the decision to reduce or discontinue opioid medications was made by the health care system or clinician (67%, n=40 of 60) compared with feeling that it was a personal decision (15%, n=9 of 60) or even a shared decision (13%, n=8 of 60).; see Table 4 for additional details. Table 4. Decision-making around tapering or discontinuing opioids, n=192 Suicide behavior reported (includes suicide attempt, ideation, decedents) (n=60) No suicide behavior reported (n=132) Total (n=192) n % n % n % Patient/family member decision 9 15 55 42 64 33 Health care system/ clinician decision 40 67 47 36 87 45 Shared decision 8 13 26 20 34 18 Don’t know/Insufficient information in transcript 3 5 4 3 7 4 Open in a new tab Patients reported several reasons that they believed motivated the health care system to initiate deprescribing, including perceived misuse of opioid medications and clinician beliefs about the dangers to a patient’s health related to opioids. By far the most common reason patients believed that clinicians were deprescribing opioids was a mandate by the health care system, often believed to be coming from the US government in the push to get patients off opioids (n=28 of 132 [21%] in those not reporting suicide behavior; n=18 of 60 [30%] of those reporting suicide behavior). Patients reported anger and exasperation at the situation, particularly given that pain management alternatives were often unavailable. “Basically, his [doctor’s] hands are tied because of the federal government and the [organization] policy. He can’t give me anymore than what he’s giving me. That’s what he says…My body is destroyed. Why can’t I get better stuff? [Angrily] I just don’t understand. I don’t understand how somebody, who has no pain, can dictate to somebody who has chronic pain. Which all my pains they say are incurable and will only get worse with time. Only worse, not better. No cure. Now how can somebody sitting in a desk say that I don’t get my medicine? That’s what I’m pissed about.” (65, suicide attempt) Patients felt that the decision was forced on them but often understood that the decision-making “came from above.” “The doctors forced me off of them, way before I was ready, honestly. And it forced me to deal with a lot of pain before I was ready for it. My doctor told me that her hands were tied by the people above her. And there was nothing that she could do about it. She alluded to me that I had a problem. And I was like, I don’t have a problem. And she’s like whether you think you have a problem or not, your body has a problem. And I was like; [angrily] I’m in pain.” (29, suicidal ideation) Lack of shared decision-making, along with a general feeling of lack of control and negative tapering experiences in the group that experienced suicide behavior compounded feelings of despair. Discussion In 2019, FDA issued a safety announcement explaining that they had received reports of patient harms (including serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide) among patients who were physically dependent on opioid medications and whose prescribed opioids had been suddenly discontinued or the dose rapidly decreased. 35 The magnitude of these adverse outcomes was unknown and, in response, FDA required changes to outpatient prescribing information while they continued to track this safety concern as part of ongoing drug safety monitoring. The present study suggests this concern is not unfounded and begins to describe the scope of these problems. In this large study of individuals who experienced opioid deprescribing, we found that tapering can exacerbate existing mental health problems, or trigger their onset, or lead to suicidal behavior. Nearly half of the sample (42%) described some degree of adverse emotional or behavioral change (e.g., aggression, agitation, irritability, sleep impairment) or mental health impairment (most typically anxiety and/or depression) during tapering. Some patients described that removal of their opioids stripped away a defense against depression, a protective feature of the medication that the patients themselves were not even aware of prior to their taper. Many studies have highlighted the connection between depression and opioid use, including the fact that opioid medications may mask unidentified or untreated depression or may be overused by patients to treat underlying stress. 36 , 37 Our own previous work identified patient use of opioid medications to manage mood (whether inadvertent or not) was a primary pathway to problems with opioid dependence. 53 The narratives from the current study align with the withdrawal/negative affect stage of a conceptual framework involving a three-stage cycle of substance addiction 38 , 39 and with a proposed dependence syndrome among patients prescribed opioid medications, Opioid Dependence. 40 A growing body of evidence supports that negative reinforcement – motivation to avoid, reduce, or terminate the negative experience of drug withdrawal, including negative affect – drives and maintains addiction. 41 Hyperkatifeia – a hypersensitivity to emotional distress experienced during abstinence 42 – is a documented feature of opioid withdrawal, is known to endure even in prolonged abstinence, 42 and has been neglected as a treatment target. 39 Narrative descriptions of tapering from the current study suggest that this feature of withdrawal was not acknowledged by clinicians during tapering, was not expected by many patients, and was not sufficiently treated either during tapering or after. To date most opioid tapering studies have defined a successful tapering outcome as adherence to dose reductions but studies have often failed to fully account for possible patient harms, including suicide-related risks. 43 Among those in our sample whose experience led to a suicide attempt or suicidal ideation, the process of tapering itself was named by about half as the primary antecedent to the suicide behavior. Family members reported this as well though slightly less often; this may be due to their lack of direct experience of their loved one’s emotional experiences during the taper. Our findings suggest more attention needs to be paid to individuals’ mental health and suicide risk during the deprescribing process. Ongoing monitoring of mental health should be standard practice, as outlined by the U.S. Department of Health and Human Services guidelines on opioid tapering. 44 We would argue that ongoing suicide risk monitoring should also be standard practice during and after tapering. A number of recently published studies have shown that risks for suicide behavior are high among not just those who abruptly discontinue opioids but also among individuals with smaller dose reductions, 21 , 22 and that risks can continue for at least 12 months after taper initiation. 23 Both hyperkatifeia and suicide risk are persistent. Given this information, clinicians initiating opioid dose reductions with their patients ought to have explicit conversations about negative affect that some patients experience while tapering and have clear mitigation plans. For patients with existing mental health conditions, clinicians should acknowledge the condition(s) and help patients identify effective self-care or therapeutic strategies they have found useful and can employ if they notice deterioration. Patients should leave the first tapering appointment with a plan for self-monitoring their mental health, encouragement to reach out for supportive care as needed, and feeling reassured that the clinician will be responsive to treat mental health issues that may emerge or worsen. Regular screening for depression and specifically for suicidal thoughts and intent, particularly among those who may not be engaged in ongoing mental health specialty care where mental health symptoms and suicide risk might be monitored more routinely, could help identify individuals who are struggling with the deprescribing process. We acknowledge, however, the structural and systemic barriers that make this difficult in the current medical context in the United States (e.g., the serious lack of trained mental health professionals, overburdened primary care clinicians who cannot easily assume additional monitoring activities). Finally, the findings presented here also corroborate the need for extended monitoring of individuals while being deprescribed opioids regardless of pace or whose decision it was to taper. As previously reported by other researchers, we also found that many patients felt that they had little to no choice in the decision to taper opioids. 24 , 25 , 45 Our research extends this finding by positing a relationship between lack of patient autonomy or perception of external locus of control and the experience of suicide behavior while deprescribing; future studies could test this quantitatively. Our results add to the call to action on ceasing forced opioid dose reductions 46 and suggest a more patient-centered approach is clearly needed. 47 One research group has previously reported on the success of using a more patient-centered, personalized, flexible, and monitored approach. 27 , 28 That work, however, was focused on factors associated with successful tapering outcomes (e.g., maintaining reduction of opioid dose) and did not include measures of, or monitoring of, mental health or suicide risk. Successful health-system delivered tapering programs 28 , 48 could be modified to include mental health and suicide screening, brief supportive intervention, or referral to specialty mental health services. Tapering supported by prescribing clinicians, pharmacists and mental health professionals could identify emerging problems earlier and help alleviate suffering and avoid further negative harms. These studies and others contribute to the growing evidence that a multidisciplinary approach is efficacious both for pain management 49 , 50 and in tapering opioids. 28 , 48 In order to successfully assist patients in tapering opioids in a patient-centered manner that avoids iatrogenic harms, clinicians themselves will likely need additional tools and support. 51 , 52 Continued development of evidenced-based guidelines and recommendations 44 , 53 for successful tapering practices are still needed, particularly focused on how to avoid harming mental health among those with or without a current mental health diagnosis. Additional tools are also needed to help prescribers communicate more effectively with patients so that they understand expectations for pain management (e.g., setting realistic goals to improve functioning rather than focusing on a pain score) and the role of reducing opioid medications to achieve those goals. 54 , 55 Communication between clinicians and patients, in general, around opioid medication use and tapering is suboptimal 56 and strategies to improve communication—assessing tapering readiness, going over tapering expectations, and developing an individualized tapering plan—have been outlined. 52 To achieve these goals, clinicians may consider using motivational interviewing, a patient-centered counseling strategy to enhance motivation and develop a collaborative approach to tapering. 57 Our findings suggest there is continued room for development or utilization of alternative pain treatments during deprescribing and improvement of opioid tapering approaches that better protect patients. Limitations Some of the deprescribing experiences were up to five years in the past and may be subject to recall bias. This may have led to undercounting of experiences reported in Tables 2 through 4 given that we had several interviews in which we were unable to discern the information on mental health and suicide behavior from transcripts. Future work could conduct interviews with individuals as they are being tapered to assess the immediacy of their experiences. Our participation rate of 27% may indicate self-selection bias. Despite our efforts, we were unable to interview more men and individuals of color and had difficulty reaching family members; these experiences with opioid tapering may be underrepresented here. Several prescribing factors (e.g., dose at start of taper, speed of taper) may affect how the taper is experienced and whether mental health or suicide behavior is affected. We did not analyze taper-related mental health and suicide behavior by these predictors. Finally, our study captures tapering experiences from 2016 to 2020; these experiences may change over time as clinicians become more familiar with opioid tapering and the population of patients on prescribed opioids evolves. Conclusions Some individuals being deprescribed from opioids experienced new onset or worsened mental health, new onset or chronic suicidal ideation, or suicide attempt. Those with suicide behavior were more likely to report an external locus of control for decision making about opioid prescribing. Opioid deprescribing approaches should include improved patient communication and robust screening of mental health and suicide risk throughout the tapering process to identify at-risk individuals who need additional supportive services. Supplementary Material Supplemental materials Impact of opioid J Pain. 2024 Submitted to NIHMS_3_23_26 NIHMS2140705-supplement-Supplemental_materials_Impact_of_opioid__J_Pain__2024_Submitted_to_NIHMS_3_23_26.pdf (378.6KB, pdf) Perspective. This work describes changes in patient-reported mental health and suicide behavior while tapering prescription opioids. Recommendations for improving care include mental health and suicide risk screening during and following opioid tapering. 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. 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. 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Supplementary Materials Supplemental materials Impact of opioid J Pain. 2024 Submitted to NIHMS_3_23_26 NIHMS2140705-supplement-Supplemental_materials_Impact_of_opioid__J_Pain__2024_Submitted_to_NIHMS_3_23_26.pdf (378.6KB, pdf) ACTIONS View on publisher site PDF (151.8 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