The Psychiatric Medication Discontinuation/Reduction study (PMDR) is the first U.S. survey of a large sample of longer-term users who chose to discontinue psychiatric medications. The study, funded by the Foundation for Excellence in Mental Health Care and led by current and former users of psychiatric medications, sought to understand first-hand experiences and strategies of individuals who decided to discontinue psychiatric medications, and either stopped or reduced the use of these medications.
Despite numerous obstacles and severe withdrawal effects, long-term users of psychiatric drugs can stop taking them if they choose. Individuals who discontinue report that self-care and social support help, but mental health professionals could be more helpful.
There is a lot of research documenting the effects of stopping psychiatric medications. However, there has been a gap in research on the self-reported motivations, experiences, processes and outcomes of people who choose to discontinue. It is vital to increase understanding of how people might safely and effectively do so. This study sought to fill this gap in scientific knowledge.
The study’s sample included 250 respondents who met all inclusion criteria, including: a psychiatric diagnosis, and a recent goal to stop up to two prescribed psychiatric medications, which they had taken for at least nine months.
While the study sample likely represents a demographic segment with certain substantial socioeconomic privileges (including race, material wealth during upbringing, education, and robust social networks), they also had survived fairly substantial experiences in the psychiatric system. Nearly two-thirds had been hospitalized in a psychiatric inpatient unit, including 29% admitted under a court or doctor’s order. Almost three-quarters had taken psychiatric medication for more than nine years and 49% reported first taking psychiatric medication in young adulthood and 17% before age 18. Many received public assistance (e.g. SSD/I, Medicaid, Section 8, etc.)
The study focused on the experiences of individuals who had a goal to completely discontinue psychiatric medication. More than half achieved this goal (54%). At the time of the survey, about half of those who completely discontinued their medication reported having been off medications a year or more. About one-third chose to discontinue over a period of more than six months, another third did so in one to six months, and a third in less than one month, with half of this group (16% of the sample) choosing to do so “cold turkey.”
Of those who completely discontinued, 82% were satisfied or very satisfied with their decision to discontinue. Half of those who did not achieve their goal to completely discontinue were satisfied or very satisfied.
The reported reasons for stopping medication were commonly related to undesirable effects of medication and self-actualization. The experience of discontinuation was often physically and emotionally grueling, including experiencing changes in sleep, anxiety, and emotions that respondents attributed to withdrawal.
Respondents turned to self-care, self-help and peer or social support. At this time, there is very little professional support for medication discontinuation, so many must find support through their peers or self-help. Despite the difficulty of discontinuation, respondents reported that friends, family, and internet support groups were particularly helpful, in addition to participants’ own self-care practices.
The self-care practices that participants were asked to report on were explicitly nonclinical and personal. Many participants found “being outdoors” or “physical exercise” helpful during the discontinuation process.
Respondents received much less helpful support from professionals. Most respondents were engaged in treatment at the time they decided to discontinue and 57% described the decision-making process as collaborative. But, only 45% described the prescriber as helpful during the process of discontinuation.
It is clearly a complicated and difficult process to discontinue psychiatric medications. Although there are many factors that lead people to discontinue psychiatric medication, there is little scientifically informed guidance available to support patients, providers, and families to safely and effectively discontinue. We should aim for adequate resources to help people survive — and thrive — in the experience.
Support from friends, family, and peers, along with improved provider education about alternative treatment options, would be beneficial in helping individuals during discontinuation. The kinds of self-care activities that were helpful are related to the social determinants of health, which are increasingly recognized within physical and behavioral health systems. Additionally, alternative and complementary treatments are increasingly accepted within traditional treatment systems and could be easily integrated into support for discontinuation.
Openness about risks and benefits of taking medication and the sharing of alternative methods of treatment can enhance the judicious use of psychiatric medications and provide alternatives to those who choose not to use them.
Given the scarcity of nationwide data on this topic, we focused our initial analysis on describing the sample and their experience. Future analyses will investigate the experience of subgroups, including specific withdrawal effects of various classes of drugs. Other research should explore the circumstances, processes, and outcomes of psychiatric medication discontinuation in the context of the patient-provider relationship and community support settings. It would also be beneficial to design research with broader representation, which would give voice to the experiences of people of color, men, and other specific groups such as Medicare beneficiaries and veterans.
LAYSHA OSTROW, PHD
Founder & CEO of Live & Learn, Inc.
My research addresses how behavioral health systems implement effective policies, financing mechanisms, and service delivery practices that integrate the perspective of people who use or have used mental health services. I have particular expertise in the role of peer support in social service systems.
I hold a PhD from the Johns Hopkins School of Public Health and a Master of Public Policy from the Heller School for Social Policy and Management at Brandeis University. I completed a Postdoctoral Research Fellowship in the Department of Psychiatry at UCSF. I maintain a position as a Visiting Professional at UCLA’s Luskin School of Public Affairs.
In addition to community forums, I have been an invited speaker at events such as the Carter Center Symposium, the Kennedy Forum on Mental Health, the U.S. Senate HELP Committee’s roundtable to reauthorize the Higher Education Act, and the California Health Facilities Financing Authority. In 2016, I was the recipient of the 2016 Carol T. Mowbray Early Career Research Award from the Psychiatric Rehabilitation Association.
As a person who experienced mental health systems that are often ineffective at promoting recovery and community inclusion, I am passionate about improving these systems through research that advances the use of evidence-based practices in real-world settings.