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Categories: Working Together for Better Health Care
It is no secret that people with mental illness experience stigma in society. While not a secret, what is less broadly understood are the ways in which structural and interpersonal stigma around mental illness have contributed to a system of care that leaves much to be desired. Unfortunately, for many people experiencing a psychiatric emergency, the only place available to receive care and treatment – the hospital emergency room – is often a place they experience some of the harshest effects of stigma and discrimination.
The Canadian Psychiatric Associations’ position paper on stigma shares results from a Canadian survey where “stigma and discrimination toward people with mental illness in the emergency department” followed by “addressing structural inequities within the health care system” were ranked as the highest priority areas for action.1
It’s a topic that Rachel Grimminck, a Vancouver-Island based psychiatrist, is passionate about. “My background is in Emergency Psychiatry. Over the years, I have witnessed a lot of really traumatic and dehumanizing care in seclusion. I’ve frequently heard patients say, ‘I had more rights in jail than in this emergency department’ – there are some really big gaps in the way the system provides care. It is something pretty close to my heart,” she shared.
When she relocated to the island from Alberta in 2021, she was pleased to connect with a newly established committee at Cowichan District Hospital where Emergency Department and Mental Health & Substance Use staff were working to identify gaps in adherence to BC’s Provincial Seclusion guidelines.
As a participant in Island Health’s Physician Quality Improvement program, it was an easy decision to connect her project to the momentum and efforts underway to improve quality of care for people with mental illness in the Emergency Department for people with mental illness. Specifically, the project set out to reduce the time patients in the Cowichan District Hospital spend in locked seclusion (under the Mental Health Act) when experiencing a psychiatric emergency and improve their overall experiences of care.
Understanding patient perspectives and experiences is a crucial component of any quality improvement endeavor. In addition to the instrumental value of patient participation for quality improvement, hearing and learning directly from people with lived experience of mental illness and recovery has been identified as a powerful means to challenge and reduce stigma and discrimination among medical learners and providers.2
Rachel understood both concepts well and was quick to include patient partners in the project. Not only would a better understanding of patient experiences in seclusion help to engage stakeholders and highlight the depth and extent of problems, but the team recognized that the best suggestions for improvement are made by the people who will benefit from them. “It is distressing as health care providers to witness this, but it would be far more distressing to actually experience being in seclusion, so it was really critical to include patient voices in this project,” she said.
Three patient partners, with personal experience of being in seclusion in a BC emergency department, were recruited through PVN, and invited for a 1:1 interview at the start of the project. For patient partner Pat*, this was an incredibly unique, and important conversation to take part in. “I haven’t seen opportunities like this before, on a subject that is very controversial. You see lots of touchy feeling things, but not a lot of people want to touch issues like seclusion rooms and the mental health act and rights of patients when they are admitted involuntarily. I applaud this project for even coming into being.”
Pat also knew they were the right type of person for the gig. “I have personal experiences related to the topic, and I also have experience from other health care committees as a patient partner. I know how important it is to get varied perspectives, and I thought my input would offer them something new. I had insights to share on my experience of being in seclusion rooms, and lots of suggestions and recommendations on what nurses and doctors could do differently to make it all understandable from the patient perspective,” they added.
Mental Health Act: BC’s Mental Health Act enables physicians to admit and treat people with serious mental health issues who are a risk to themselves and/or others. People who are certified under the Mental Health Act can be treated involuntarily for a mental disorder.3 Learn More.
Seclusion: Seclusion is a method of restraint during which a patient perceived to be in psychiatric crisis is contained in a room that is either locked or “from which free exit is denied” (Mayers et al., 2010, p. 61). An individual who has been contained and prevented from leaving a space in the course of a psychiatric intervention is considered to be experiencing seclusion whether or not the intervention is carried out in a formal secure room or other alternatively labeled environment, including a patient’s hospital bedroom.4
The Health Care Partner Perspective
Recognizing the difficult nature of the topic, the team took great care to create a trauma-informed approach to the interviews. In addition to a formal ethics and privacy review through the health authority, the interviewers clearly explained what the interviews were for and how the information would be used. They also discussed matters of confidentiality and privacy, asked for permission to record the interviews for transcription purposes only and explained they could stop at any time and that cameras could be turned off. They took frequent breaks, checked in with the patient partners, and at the very start, made sure that they had a support plan in place should the conversation be difficult for them.
“We talked about their experiences of being in seclusion. We asked questions about whether their basic needs were met, were their rights under the Mental Health Act explained, what kind of care, or absence of care they received, their suggestions for improvement, what care providers could do differently, and what system changes would better support their wellness,” explained Rachel.
“It’s a balance,” she added. “It is tough to talk about, but also at the same time, hopefully it helps to talk about it. Knowing that it is influencing, in a small way, how care is delivered. Knowing how it is helping people. That can be a part of post-traumatic growth and resilience too – making sense of a difficult life experience.”
“This is an area that because of stigma, people don’t want to talk about it, it is a difficult topic. For many patients, it has been traumatizing. So, the courage of these patient partners to do so was really incredible. It’s not easy to talk about. But their voices absolutely need to be heard,” she added.
The Patient Partner Perspective
Pat appreciated that the interview took place via Zoom, and that it was conducted by Rachel. “It wasn’t a work study student or someone just gathering information and distilling it down for the doctor – but she herself led and conducted the interview. That was amazing. Often doctors don’t take the time to get involved in that way, but she did. She is an emergency room psychiatrist – the absolute most appropriate person to do such a study. I thought it was remarkable”.
For Pat, there was some initial safety in that they had never received care at Cowichan District Hospital, or from Dr. Grimminick, nor would they be likely to based on their geographic location. But upon further reflection, they offered another perspective as well. “If she ever did take care of me in a challenging situation in the future, it would actually be comforting to know that she knows a little bit more about me. I think that is often missing in care. People are just seen as ‘a patient’, not a whole person with a life behind them. People in psychosis, or people who go into seclusion rooms are just seen as, you know, people not able to take care of themselves who don’t know what’s going on around them. So, it could be beneficial for my future psychiatrist to get to know me and my life story now to see that this is who I am, and if I’m sick, well, then I’m a different person.”
Change Ideas & Early Outcomes
Although the project continues, some change ideas and improvements have already been introduced thanks to the diligent efforts of the committee and project team. “It is an exceptional, energetic and innovative group of people working on this,” shared Rachel. “They started this work despite the pandemic and staffing problems. It’s a pretty remarkable group of people”.
While the project team wasn’t in a position to tackle issues like the availability of beds and bigger system level issues that reflect the challenges of systemic stigma and underfunding, they have been taking strides to empower nurses and physicians to approach this patient population through a different lens.
They’ve made some improvements to ensure people’s basic needs are met, such as meal trays and access to phones, clear communication and privacy. “We’ve also had conversations with staff about asking patients what works for them, what would be supportive for them in those moments, and engaging with them rather than avoiding them,” explained Rachel.
Staff education and process changes have been introduced, as well as including a nursing checklist around adherence to the provincial seclusion guidelines, and a physician checklist for considering alternatives to seclusion and/or time-limited seclusion with an active treatment plan.
The team recently presented some findings and recommendations, including the patient partners’ perspectives, to the local Island Health Quality Council. “There were quotes in the presentation from the patient partners, and some of the suggestions for improvements were based on patient partner feedback – highlighting how we can make this care more patient-centred,” Rachel confirmed.
Rachel has also invited Pat back to do some coaching and mentoring with medical learners at the hospital – another area Pat has experience in and passion for.
Acknowledging Challenges and Meaning
For both Rachel and Pat, physician and patient, the biggest challenge in this project didn’t stem from the project itself, but from the ever apparent, increasingly visible, scope and size of systemic stigma in mental health care. “It was challenging to realize how sadly little is researched and written about this topic, and how little and how slowly things are changing,” offered Pat.
On the flipside, that’s also what made this such a meaningful engagement. “The most important part for me, was that someone was tackling this taboo topic. I am hoping that this project will open a floodgate of other projects that will look at the trauma inflicted by both seclusion rooms and the mental health act, and will hopefully, you know, bring a little bit more opportunity for people like myself to be involved at a decision-making level,” Pat shared.
For Rachel, the patient engagement aspect of the project was one of the most exciting and rewarding parts. “It is sad that patient engagement is still so novel – that this isn’t just a core part of what we do. That we are still so often designing systems without the people using them. I think this is critical no matter what the project is. The value is exceptional for bringing in that human side. Particularly in Emergency Departments, where staff can be disconnected from the person in front of them. It is hard work. It’s even worse now in the pandemic, people are burned out and exhausted. But bringing that human element back in – through engagement projects like this – it can help to reconnect staff with why they went into health care.”
“I’m grateful that BC has [the BC Patient Safety & Quality Council] and PVN. I think it’s fantastic that there is this formal process and am grateful to Charmaine [Council Engagement Leader] and the support of PVN to walk us through this,” she added.
Advice for Patient Partners
Pat offers the caution that engagement work can, at times, be emotional. “It can bring up past experiences. It can bring up ‘why me?’ questions, and frustration over why the system isn’t responding in a different way”. They also encourage others, particularly those with mental health and trauma experiences, to get involved. “I don’t see a lot of people like me involved as patient partners. Maybe they are not well enough to participate in structured meetings, or interviews or surveys. But we need more people speaking up. So, if there is an opportunity to participate, please do. The more pressure we put on the system, the more opportunity there is for change – change that is so needed,” they said.
Rachel echoes Pat’s call for patient participation. “If you feel you’re in a place where you can do this, your voice really matters. It’s hugely important. The more people who are willing to speak up about the significant gaps in mental health care – then that will slowly but surely impact the system”.
*Name has been changed for this story.
This story was featured in our 2021/22 Annual Report.
- Stigma and Discrimination. The Canadian Journal of Psychiatry, Vol 56 No 10. Available from: https://www.cpa-apc.org/wp-content/uploads/Stigma-2011-51-web-FIN-EN.pdf
- CPA Paper
- BC Mental Health and Substance Use Services. The Mental Health Act [Internet]. 2022 [cited 2022 June 16]. Available from: http://www.bcmhsus.ca/about-governing-legislation-bodies/the-mental-health-act#:~:text=British%20Columbia’s%20Mental%20Health%20Act,involuntarily%20for%20a%20mental%20disorder.
- Provincial Quality, Health and Safety Standards and Guidelines for Secure Rooms in Designated Mental Health Facilities under the B.C. Mental Health Act. Available from: https://www2.gov.bc.ca/assets/gov/health/managing-your-health/mental-health-substance-use/secure-rooms-standards-guidelines.pdf