Podcast: Recovery from severe mental illness: more than just symptom management
Transcript
Diane Kelsall: Severe mental illness includes conditions such as schizophrenia, bipolar disorder, major depressive disorder and schizoaffective disorder. Some may also include substance abuse disorder and personality disorder in this group of illnesses. It used to be that severe mental illness was considered chronic and deteriorating, and that these patients required high-intensity secondary care. But now, with the advent of better medications and better symptom management, the focus has switched to recovery and promoting autonomy in the community. I'm Dr. Diane Kelsall, deputy editor for CMAJ, and today we're speaking with Dr. Rob Whitley, principal investigator of the Social Psychiatry Research and Interest Group, or SPRING, at the Douglas Institute in Montreal. He's also an assistant professor in the Department of Psychiatry at McGill University. In the commentary he co-authored, Dr. Whitley tells us why a focus on recovery is so important. Thanks for joining me today to talk about recovery from severe mental illness.
Rob Whitley: Thank you for having me. It's a great pleasure to be here.
Diane Kelsall: What distinguishes severe mental illness from other mental illnesses?
Rob Whitley: The phrase severe mental illness is often used in contradistinction to the phrase common mental disorders. So, common mental disorders refer to illnesses such as anxiety and depression, which can be quite severe, but usually allow people to maintain their everyday functioning, whereas severe mental illnesses are distinguished by a level of symptom intensity, which is much higher than common mental disorders, which really affects function; they lead to a massive functional impairment. So people with severe mental illnesses often find it difficult to maintain a job, to maintain social relationships; if they're in education, to maintain their education. And a consequence of severe mental illness is stigma. So people with severe mental illnesses such as schizophrenia, bipolar disorder, schizoaffective disorder often report much more stigma than people with common mental disorders such as anxiety and depression. And I think it's important to say that severe mental illnesses, when treated and when well-treated using a mixture of biological, psychological, and social interventions, can actually be controlled, and people can make progress in terms of the life domains that's important for them: function, employment, education. But that is prerequisite of, that good treatment [is] available.
Diane Kelsall: So you say that recovery involves more than symptom remission. Can you elaborate a bit on that?
Rob Whitley: Well, there's been a whole series of studies, both qualitative and quantitative, which have gone to people with mental illness and said, "What does the word recovery mean to you?" And common across these studies is that people with severe mental illnesses like schizophrenia say that recovery is much more than symptom remission. Recovery, to them, actually means making progress in life domains which are subjectively important to them. So historically, people with mental illness, severe mental illness, were encouraged not to go to work, because that was considered stressful; not to have families, because people thought they would not make good partners or fathers or mothers; not to complete their education, because people thought it was beyond them. Whereas now, recovery means actually making progress in those life domains, having a job, having the kind of house that people want, having good social relationships, having a boyfriend or girlfriend, husband, wife, and having those things which were traditionally denied to people with severe mental illness due to stigma and due to misperceptions about the reality of severe mental illness.
Diane Kelsall: Now, for those who witnessed the catastrophic consequences of widespread deinstitutionalization, when previously institutionalized patients were discharged into the community, the concept of recovery and severe mental illness may seem an impossibility. What evidence supports recovery in this group of illnesses?
Rob Whitley: I think you can look at evidence from 3 different sources. So first of all, you have epidemiological evidence. So, epidemiological studies have followed people up for 10 or 20 years, and they've shown that when people receive a diagnosis of schizophrenia or bipolar disorder, it doesn't mean that that is a life sentence. It doesn't mean that people have universally deteriorating outcomes or even chronicity, that people with severe mental illnesses can have good symptom remission and even complete symptom remission, but can also make progress in terms of those life domains that I talked about previously, in terms of education, in terms of employment, in terms of social relationships. So we have the epidemiological evidence. Secondly, we have ethnographic evidence, qualitative evidence, where qualitative studies have shown that people with severe mental illness can make good progress in those life domains where people self report that they've, in the last year or 2 years, they've set goals, they've met these goals, they've done well. And the third source of evidence is health services research, where there's lots of psychosocial interventions, such as supportive employment, supportive housing, which are given to people with severe mental illness. And people with severe mental illness use these services and then end up finding employment, finding housing, getting into good social relationships, social support. So we have those 3 sources of epidemiological, ethnographic and health services, which are converging to say that recovery is actually a possibility and a reality for those people who are receiving those services.
Diane Kelsall: That sounds like quite a shift if thinking is required, you know, by the clinical level, patient level and, obviously, at the public level. Now, Canada has a national mental health strategy. Where does the concept of recovery fit into this strategy?
Rob Whitley: Well, the national mental health strategy of Canada is 156 pages long. And the concept of recovery is a unifying thread throughout the whole strategy from page 1 to page 156. The priorities within the mental health status strategy — for example, one of the priorities says that we should shift policies and practices towards recovery and wellbeing, and it talks about recovery in the same way I just talked about it; that this involves more than symptom remission, but it involves giving people, services, which allow them to find employment, to find good housing, to reintegrate back into society if they've been in hospital, to be supported in their, in their life domains and their life goals and not just a bit on the sidelines and stuck in service ghettos where traditionally, people were often put or sent to day treatment centres and just, would just waste their life there. And people with mental illness, in qualitative studies, say that's not what they want; they would like to be integrated into society, to have jobs, to have good social relationships, to be fully functioning in the community. And the strategy really is encouraging that that's how services re-orientate, and health services, and doctors especially, should try and help people make progress in those life domains.
Diane Kelsall: At the individual clinician level, how can we help a patient with severe mental illness to live the kind of life you've just described?
Rob Whitley: I think there's 3 factors which can be important in that regard. First of all, I think it's really important for physicians and clinicians to adopt a hopeful and positive attitude with people with severe mental illness. So not to start from the starting point that this is a chronic deteriorating disease, but to start from the starting point that people can recover, they can, their symptoms can go into remission, that they can make progress in life domains, and the doctor's job is to facilitate that. Second point is actually to try and help in the facilitation of those functional outcomes which people with severe mental illness identify as important. So for example, if somebody with schizophrenia says that their recovery would be aided by employment or having a job, that the physician can maybe help refer the person to a supportive employment specialist, or could even maybe write a reference for their patients, or could encourage the patient to look at job listings in the newspaper or online and apply for jobs. So encourage that progress in those life domains. And the third area I think is important is in the area of decision-making. So we have a newish model called shared decision-making, where people with severe mental illness or the patient actually makes decisions collaboratively with the doctor, where the doctor needs to talk about the different options that are available, the different treatments, the psychosocial treatments and medications, the risks and benefits of each. And then the patient and the doctor make a mutual decision on the course of action that should be taken. So I think those 3 factors can be very helpful.
Diane Kelsall: Now it sounds like this is going to take more than just the individual clinician relationship with the patient. It sounds like this is going to require system changes. What kind of system changes do you think are needed?
Rob Whitley: Again, I think there are 2 or 3 factors which are very important in that regard. I think the first one is training, that we really need to train a new generation of clinicians and existing clinicians in the recovery model to impart to them the epidemiological, the ethnographic evidence that recovery is, it's feasible and possible given the right supports, that are hopeful, positive attitude is important. I think in addition to training, there should also be a reallocation of funding. So we know that, I think over 50% of the mental health budget in Canada goes towards tertiary institutions and tertiary care, whereas people with severe mental illness say that their recovery is most facilitated by community psychiatry, by clinician general practice, by clinicians in the community, by supportive employment specialists, by supported housing, by psychosocial interventions. So I think we need to at least have a conversation on thinking about trying to reallocate and redistribute some of the money from the mental health budget away from hospitals and tertiary institutions towards more psychosocial interventions and community-based services, which can help people make functional progress and in those areas of recovery I previously outlined.
Diane Kelsall: Do you think that we're making progress in meeting the national mental health strategy?
Rob Whitley: I think it's a mixed bag, because health services is a provincial jurisdiction rather than a federal jurisdiction that various provinces and various cities and places within provinces have very good programs, and really taking a recovery orientation and other places, less so. But I do think there is, actually, a slow but short, incremental change in the mindset of people working in mental health and clinicians and general practice, towards understanding the recovery paradigm and the mental health strategy in the Mental Health Commission of Canada and community psychiatrists and the whole recovery movement, I guess, has really put recovery on the agenda. And people are listening, and papers such as the one in the CMAJ that we wrote, are being read, and be excited. And I think there is slow but steady progress.
Diane Kelsall: So it sounds like there's quite a switch in thinking that needs to happen. What resources are available for listeners who might want to learn more about this topic? Again, I think there's a mixed bag of resources. There are lots of resources on the Internet, for example, websites of the Schizophrenia Society of Canada, the Mental Health Commission of Canada, various websites in the US and the UK, about recovery. One resource that I would encourage people to consult is, actually, books and literature written by people with severe mental illness. So there are a number of excellent books written by people with schizophrenia, with severe mental illness, which detail their recovery in a very humane and empathic fashion and kind of talk about the services they received and what was helpful and what was not helpful. Some of these books, for example, Elyn Saks, wrote a book called The Center Cannot Hold. Pat Deegan is somebody who's written lots of papers and has a website and has done lots of video presentations available on YouTube, which talks about her recovery. Kay Redfield Jamison has written about her recovery from bipolar disorder. So I would encourage clinicians and listeners to read those books if they really want to get a good understanding of recovery and see what's helpful and what maybe isn't helpful. Well, that sounds really useful. Thanks so much for joining me today, Rob.
Rob Whitley: Thank you so much.
Diane Kelsall: We've been speaking with Dr. Rob Whitley, researcher with the Douglas Mental Health Institute in Montreal and assistant professor at McGill. To read the commentary he co-authored, visit cmaj.ca