Alliance Note: Many people formerly hospitalized in inpatient psychiatric units continue to push back against states’ drive for increased inpatient bed capacity because they do not want to perpetuate the abuse and neglect they experienced while hospitalized. While there have been countless personal stories about negative inpatient experiences, very little research has been produced on these injustices and the deep need for reform. Last month Morgan Shields and Kelly Davis published a study, Inpatient Psychiatric Care in the United States: Former Patients’ Perspectives on Opportunities for Quality Improvement, highlighting the all too common abuses formerly hospitalized people experienced as well as their recommendations for reform.
The research makes one thing quite clear, the current push for increased inpatient beds and thus more hospitalizations is dangerous and harmful if people continue to receive inhumane treatment in these settings. Not only do people experience grave abuses, discrimination, and a stripping of their rights, but these experiences cause them to avoid mental health services all together out of fear of further traumatization. This does nothing but cause more people to go without needed services to help them recovery and stay well in their communities.
The participants of the study offered ten areas which inpatient psychiatric facilities must improve to offer better services, some of which included empathetic connection, communication, humane care, physical safety, and respecting patient’s rights and autonomy among others. We cannot continue to allow people to be traumatized and abused in settings where they are supposed to be receiving compassionate care. Our nation must act quickly to improve the quality and humanity of inpatient psychiatric facilities to prevent more trauma and truly support more people. Read below to learn more.
Former Patients Highlight Abuses in US Inpatient Psychiatry, Call for Reforms
By José Giovanni Luiggi-Hernández, PhD | Mad In America | June 21, 2024
A recent study published in the Journal of Patient Experience shared the perspective of former patients on their experiences in inpatient psychiatry units and their suggestions for improving the quality of care.
The study, conducted by Morgan Shields and Kelly Davis, illuminates the often difficult experiences of psychiatric inpatients. Their research, which gathered feedback from 814 participants, highlights the pressing need for reforms to improve the quality of care in psychiatric facilities.
“There has been limited empirical research to describe the quality of inpatient psychiatric care in the United States despite policy efforts to expand access to this service. Empirical descriptions of care quality and the patient experience of inpatient psychiatry come primarily from countries outside of the United States,” the authors explain.
“However, journalistic investigations, lawsuits, and anecdotal testimony from the United States highlight the need for policymakers and payers to consider examining methods to better align inpatient psychiatric care with principles of patient-centeredness. In the current study, we elicited suggestions from former adult patients of inpatient psychiatry on ways to improve inpatient psychiatric care quality, filling a critical gap in the literature with relevant implications for evolving policies.”
The study, analyzing online survey responses from individuals hospitalized between 2016 and 2021, identifies ten critical themes for improving inpatient psychiatric care: personalized care, empathic connection, communication, whole health approach, humane care, physical safety, respecting patients’ rights and autonomy, structural environment, equitable treatment, and continuity of care. This research is crucial as it highlights the diverse and complex experiences of patients, offering valuable insights for policymakers and mental health professionals seeking to create a more supportive and effective care environment. The findings echo longstanding concerns within the critical psychology community about the dehumanizing aspects of psychiatric care and the need for systemic change.
Although research on this topic has been scarce in the United States, lived experience advocates have been highlighting these issues and pushing for similar research for decades. Past research has demonstrated how hospitalization does not decrease the odds of fatal or non-fatal suicide attempts after inpatient treatment and involuntary hospitalization increases the risk of suicide, especially immediately after hospitalization. Involuntary hospitalization does not improve outcomes and leads to decreased trust in providers, deterring youth from seeking future mental health treatment. Some patients who have been hospitalized also consider themselves survivors due to their experiences of violence during psychiatric hospitalization or “incarceration.” Black and other minority youth are more likely to be forcefully hospitalized, where they experience increased violence.
To learn about previous patients’ experiences during psychiatric hospitalizations and receive suggestions about how to improve inpatient care, in 2021, the research team developed a survey that was promoted and administered online. Participants had to have been hospitalized in the U.S. sometime between 2016 and 2021 and be 18 or older. As part of the survey, participants could answer an open-ended question where they were asked, “What are some things the hospital/psychiatric facility could have done to improve your experience?” Eight hundred fourteen participants responded to the survey, and 510 responded to this open-ended question. 50.88% of participants were female, 40.56% were male, and 8.55% were non-binary, third gender, or other. In terms of race or ethnicity, 66.60% were White, 4.17% were Native American, 2.39% were Hawaiian/Pacific Islander, 3.18% were Black, 3.18% were Asian, .99% were of another race, 4.93% were mixed race, and 15.31% identified as Hispanic/Latinx.
Most participants were between 18 and 34, with a few being 44 or older. 46.32% were involuntarily hospitalized, and most had been hospitalized 1 or 2 times. The researchers coded the open-ended responses of all 510 participants and used a constant comparative method to develop themes. These themes were (1) personalized care, (2) empathic connection, (3) communication, (4) whole health approach, (5) humane care, (6) physical safety, (7) respecting patients’ rights and autonomy, (8) structural environment, (9) equitable treatment, and (10) continuity of care and systems.
Personalized and Effective Care. The researchers combined these concepts as participants believed effective care had to be personalized. Many patients mentioned that they did not learn anything for a specific reason they had been hospitalized and felt that treatment was irrelevant. Moreover, administration, staff, and clinicians often disregarded their personal history and problems into account which led to misdiagnosis and being prescribed the wrong medication. A participant mentioned:
“I am a lot further in my recovery than a lot of people in that unit and I already knew everything that they were sharing in group. I needed personalized and individual help, and I didn’t receive that. I left feeling not helped at all.”
Empathic Connection. Patients reported how administration, staff members, and clinicians lacked care, compassion, understanding, respect, or empathy. They also reported insensitive and detrimental statements and actions coming from them. A participant wrote:
“The floor staff was often verbally and physically (in stance and demeanor) unkind, uncaring, and obviously exasperated with patients (not necessarily nurses).”
Another patient mentioned:
“They don’t care about people at that facility.”
Communication. Participants also shared how there was a lack of communication between staff members and patients, including not being transparent about when they would be discharged and not answering patients’ questions for prolonged periods. Providers also did not communicate the side effects of medication. Patients also reported a lack of coordination between staff members, including a lack of communication between inpatient and outpatient treatment. A patient who was not told about the side effects of the treatment wrote:
“I was started on lithium, and while it has been helpful, it also caused thyroid problems that I was not made aware of as a possibility before starting the treatment. I wish I had been more informed of the risks of the medication or able to consider other options.”
Another participant shared how there was no communication about their time being hospitalized:
“I got no orientation, no change of clothes (they made me walk through the rain wearing socks), and no explanation of meal schedules, group sessions, or who to talk to ask for help. I was literally dropped off and forgotten.”
Whole Health/Person Approach. Patients said there was a need for a health promotion approach to treatment and a more holistic approach to healing since treatment focused on medication and skill building. They shared possible outdoor activities, healthier food, spiritual guidance, art, and music, among other activities. A participant in this study shared:
“A wider array of recreational activities to help patients pass the time and also keep them happy….”
Physical Safety. Participants identified the necessity of improving staff competency in crisis and conflict management. They also shared how they experienced physical, psychological, and sexual violence and threats of violence from staff members, clinicians, and other patients while they were hospitalized. Violence was more noteworthy for participants experiencing psychosis. Moreover, patients’ health needs were neglected and dismissed by staff members. A participant shared how a psychiatrist would threaten patients:
“What made me feel even more unsafe, though, was that there was one specific doctor who threatened to sedate anyone who even raised their voice at him. People were being sedated left and right, even at times that I felt were inappropriate.”
Another participant wrote about witnessing sexual advances from staff members:
“There was also a nurse who made me feel particularly unsafe. He made some inappropriate comments about women in our ward and was the first to volunteer every time this one patient (who happened to work in adult entertainment) needed someone to watch her shave. He made moves at almost all the women in our ward…”
Humane Care. Participants suggested treatment should be humane, as many reported being dehumanized during their hospitalization. The authors wrote how participants were “treated like prisoners, animals, and objects” as they experienced “serious restrictions to autonomy, a sterile and unwelcoming physical environment, and a rigid routine,” which led to being traumatized and impacting their health and help-seeking behaviors. A participant shared:
“Treated me like an intelligent human being with real thoughts and feelings instead of a dog to be sedated and trained.”
Another how being dehumanized led them to desperation:
“It was horrible and made me feel less than human. I will never ask for help in that way again, even at the very depths of desperation.”
Another participant shared how it would have been more helpful to process their suicidality rather than being stripped of their bodily autonomy:
“If I’d simply been allowed to express and talk through suicidal feelings versus being put into safe rooms and stripped of clothing and my glasses and put into safety clothes, it would have been far more helpful.”
Respecting Patients’ Rights and Autonomy. Participants demanded that their rights and autonomy be respected while being hospitalized. Many reported not receiving information about their legal processes, being threatened to stay hospitalized for a more extended period, and being lied to about their rights. Many others reported physical, verbal, and sexual violence, were denied proper hygiene, and were restrained via physical or chemical means. A participant shared how asking or requesting to leave could lead to a longer stay in the hospital:
“Well, when you’re voluntarily admitted to the facility and then are unable to leave or even request to leave without implication that you will be forced to stay longer and treated like a crazy person with no way to escape. Definitely won’t be returning.”
Another participant was denied access to their medical records, which they have a right to access:
“They could have not lied and said I wasn’t allowed access to my medical records when I asked.”
Structural Environment. Participants said there were issues (sometimes severe) with cleanliness in the hospital; there was a lack of comfort in the space (including uncomfortable beds, no access to blankets, and saddening aesthetics), leading many to feel uncomfortable, feel worse, or feel entrapped. For example, a participant described their room:
“I was in a concrete room with no windows other than the one in the door, which had the shades drawn. There was nothing in the room besides my bed.”
Equitable Treatment. Participants reported discrimination due to race, gender, disability, and socio-economic status. They recommended more understanding, education, and competencies regarding oppressed and marginalized groups. A participant shared:
“[They should] understand that physically disabled folks can’t check their medical issues and accommodation needs at the door because ‘this isn’t a medical unit.’ Taking a person’s wheelchair away, denying access to medications and supplements that someone was already taking for their medical problems, and refusing to make any disability accommodations as a blanket policy is always abusive, and these institutions are required to follow the ADA.”
Continuity of Care and Systems. Finally, participants also suggested improved continuity of care after inpatient treatment. Many reported scarce outpatient providers or resources and not having the proper support from discharge planners. There were increased problems in post-inpatient transition for those who were homeless, lived in a violent environment, or needed other support. A patient shared:
“Understand that ‘danger’ doesn’t begin and end with suicidality, situations involving interpersonal violence (domestic violence, human trafficking, etc.) exist, and discharging a trafficking victim to a random hotel or the care of a person who is known to be affiliated with their trafficker should never happen.”
This study provides significant empirical support for what people with lived experiences have been reporting and advocating for, including the forms of violence experienced within psychiatric hospitalizations and the necessary changes to attempt to prevent those forms of violence.
Former Patients Highlight Abuses in Inpatient Psychiatry (madinamerica.com)