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PsychNews Special Report: Palliative Psychiatry for Severe and Persistent Mental Illness · The Medical Mind

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  you
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  Welcome to the Psychiatric News Special Report podcast, a monthly podcast from Psychiatric News produced for the APA Medical Minds channel.
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  I'm Dr.
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  Adrian Preda, Editor-in-Chief of Psychiatric News and Professor of Clinical Psychiatry and Human Behavior at University of California Irvine School of Medicine.
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  Each month, we sit down with the author or authors of our special report to dive into the key themes, findings and real-world implications of their work.
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  Today, I'm joined by Dr.
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  Anna Westermeyer, an attending psychosomatic CL psychiatrist and senior research assistant at the Institute for Biomedical Research at the University of Zurich, based in
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  Switzerland, whose work explores the evolving field of palliative psychiatry.
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  Dr.
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  Westermeyer brings a unique international and cross-disciplinary perspective to the ethical, clinical, and humanistic considerations that shape this topic.
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  We'll be discussing her special report,
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  published this month in Psychiatric News, which explores palliative psychiatry as an alternative or complementary care model for individuals with severe and persistent mental
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  illness.
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  The article invites readers to reflect on how psychiatry defines treatment success and when relief from suffering and improving quality of life might be a more realistic and
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  humane goal than clinical recovery.
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  Anna, thank you for contributing your special report to Psychiatric News and
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  Thank you for joining us here today.
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  I wonder if we can start by you telling us a little about yourself, your career in psychiatry and your interest in palliative psychiatry.
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  Yeah, sure.
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  Thanks so much for having me, Adrienne.
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  A bit about myself.
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  I studied medicine and psychology and then specialize in psychosomatic medicine and palliative care, incidentally, which brought me to this kind of exotic research interest.
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  And when I started digging into that really new field, I soon realized this is first and foremost at the moment, an ethical question.
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  So we can't do RCTs in that, you know, very young field.
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  And that's why I decided to do a PhD in biomedical ethics on that topic.
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  And this is how I came to be where I am now.
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  I usually try and have both clinical and research duties, but right at the moment I'm taking a break from clinical work because I have a position as mom now and that kind of
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  goes better together than a position as an attending.
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  Yes, well, this is a fascinating field, right?
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  And I think actually really informative for our listeners to start with, what is palliative psychiatry?
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  Well, I guess right at the moment, palliative psychiatry is an idea.
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  It's the idea that it might be beneficial for our patients to introduce the general approach of palliative care to mental health care.
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  Is it different from the standard mental health care approaches for severe and persistent mental illness?
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  So the general idea in palliative psychiatry, it adopts the WHH definition of palliative care, which stresses the importance of relieving suffering and improving quality of life.
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  Whereas by default, the goal of care, you know, in standard mental health care is symptom remission and improvement of psychosocial functioning.
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  So I guess in a nutshell, this is the difference, a shift in the primary goal of care.
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  You know, maybe we can spend a few moments there because in general, these goals tend to be used maybe a little bit, you know, in a relaxed way when people talk about improvement.
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  What is it that that means?
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  Sometimes could mean clinical improvement.
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  At times could be a response versus recovery, which may or may not be related to improvements in functioning or quality of life, right?
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  So how do you actually separate these different outcomes?
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  That's an interesting question.
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  Well, I guess at the moment we don't have as of yet validated instruments to really measure quality of life in our patients halfway.
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  And I think this is definitely something that we need to develop with palliative psychiatry is to become a part, you know, of more conventional mental health care.
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  quite sure whether you're referring to that, but feel free to.
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  Well, you know, you are answering the question here and actually you specify in your article that first, know, there are differences between clinical improvement and quality
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  of life.
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  And maybe that's something that's not very intuitive in general when we think about things as clinicians, right?
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  We think that people improve clinically, well, that necessarily results in an improvement in quality of life.
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  And the point that you are making and the way I understand it, please correct me if I am wrong, is that
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  the emphasis in palliative psychiatry is actually on functioning, which may or may not be completely related to clinical improvements in symptoms, right?
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  Yeah, yeah, yeah.
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  I think we're talking about the same thing.
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  So we wrote like a concept article on that two years ago, where we said that standard, know, standard, it's, you know, it's not meant in a negative way, but usually in mental
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  health care, we aim to reduce the symptoms that define a mental disorder.
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  So for example, hallucinations and schizophrenia, this will then lead to improved psychosocial functioning.
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  And this will then lead to
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  improved quality of life.
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  So this is why mental health care is a good thing, because indirectly it improves people's quality of life.
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  Then we have people where this sadly doesn't work, despite the best intentions of everybody, you know, that is being a part of that process.
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  And the idea of palliative psychiatry is maybe we can increase quality of life by means
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  other than reducing the core symptoms that define the mental illness.
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  It's like circumventing a mental disorder.
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  Yeah, and you know, one of the interesting questions there is, you so in general, probably it's pretty straightforward, right?
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  We know that there is usually a pretty tight correlation between sort of clinical improvement first, which tends to result in improvement in functioning, which tends to
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  correlate with an improvement in quality of life.
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  But so one of the things that made me think when I was reading your article is that actually that may not always be the case.
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  Well, that's probably the case most of the times.
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  And that's kind of the typical sort of medical paradigm, right?
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  We aim to treat things right because everything else gets better.
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  Sorry if I'm interrupting, but if that works, great!
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  Go for it!
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  Don't do palliative psychiatry!
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  Absolutely.
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  So palliative psychiatry, then maybe a way to think about it is when that doesn't work, then what?
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  And the palliative psychiatry perspective could have something else to offer to that specific patient subpopulation.
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  Yeah.
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  And those patients, so those are patients who tend to probably fall into the category of people who have severe and persistent mental illness.
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  Can you just clarify what severe and persistent mental illness refers to?
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  Well, there is no consensus definition, sadly, but there is the 3D definition that I find very useful.
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  obviously you need to have a diagnosis of a mental disorder, but it's not specified.
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  And theoretically, all mental disorders qualify.
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  And severe and persistent mental illness is more like a course that a disorder can take in a person in the sense that the duration, so in the sense that
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  the illness is present, the person is symptomatic for more than two years despite adequate treatment.
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  And this results in a significant disability, meaning that there is an impairment of psychosocial functioning.
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  So this is the definition that I usually refer to when I talk about severe and persistent mental illness.
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  And yes, that's correct that, you know, the cases where we might think about palliative psychiatry, they fall into that concept.
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  But it's important for me to stress that that doesn't mean that everybody who fulfills the 3D criteria is a good candidate for palliative psychiatry.
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  It doesn't work that way around.
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  Yeah, that makes sense.
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  So diagnosis, so diagnosis is referring to severity and then duration and the longer the duration, probably the more chronic and persistent, right?
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  That's the persistent part of the of the criteria.
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  And then disability, these are the three days.
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  And to your point, then I think it's important to also consider the fact that not all severe mental illness is necessarily persistent.
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  You could have a severe crisis and that's
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  that could be acute as opposed to chronic.
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  And also probably there are similarly, you know, cases where we could look at the chronic persistent course of illness, which is not necessarily severe, right?
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  People can have a nicotine dependency for 30 years.
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  That's not necessarily a severe mental illness.
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  Right, that is very helpful.
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  In your report, you describe two very informative cases, and I think that maybe we can use those cases to get a better sense of how palliative psychiatry assessments and
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  recommendations might be different than the typical course of care.
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  So could you walk us through one of the cases that could give our listeners a sense of the usefulness of this approach?
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  Yeah, sure.
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  Well, if it's okay, I would like to walk you through one of more or less a composite of my own cases because the cases in the report, I really do love them, but they were
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  contributed by my colleagues.
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  So I can't give you any more detail on those that is in the report.
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  imagine a patient who has been sick with anorexia nervosa for
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  25, 30 years had had multiple high quality treatments, but always sadly relapsed soon afterwards.
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  had a very low BMI for the last 10 years, couldn't work due to that low BMI, has a very diminished life.
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  And she's now hospitalized with a BMI of around 10.
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  Obviously we...
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  recommended artificial nutrition to her, but she refused, which put us in a very difficult position, as I guess some of you might know from their own experience.
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  And I sat down with this patient and tried to find a way to move forward together.
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  And what she told me was that she wanted to get better.
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  She didn't want to die, but she could not bear
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  being force fed again.
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  She had undergone that treatment a couple of times with little results, with little benefit.
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  So she couldn't be the thought of having artificial nutrition again.
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  And she told me if she were to get better, she needed to do it her own way and she needed to be in control.
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  And she told me she had only
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  enough energy left for one last push, for one last try.
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  She was really afraid she would end up like in a cycle of endless weight restoration and then relapse and then weight restoration and then relapse.
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  And she needed to be assured that this would not happen.
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  So basically what she was asking was no artificial nutrition, even if she failed in her attempt to refeed herself orally.
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  and a DNR status.
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  So that was what she was requesting.
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  And well, you can imagine there was a very long decision process and a lot of people were involved and it took some time.
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  But in the end, we granted her request and she got that in writing and she started eating.
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  She started eating and well, was not no walk in the park, but she managed to gain three BMI points without any coercive measures.
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  went home and had a decent quality of life.
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  She could resume some of her leisure activities, so drawing was something that she enjoyed and she could do that again because she was able to stay upright for long enough to draw.
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  So I think we really, we accept the risk of her dying.
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  I think this is the palliative element of that approach and got a lot of quality of life out of that for her.
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  And well,
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  Obviously, there was not a miracle cure.
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  She relapsed a year later and came back in a terminal state.
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  But we had prepared for that.
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  Advanced care planning is also part of palliative care.
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  We had prepared for that.
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  She had a living will.
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  And we had had an independent attending a test to her capacity at that moment when she signed that living will.
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  So sad as it was that she relapsed, when she came back, everything had already been decided and we could really make her comfortable.
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  She was in a very quiet, friendly room.
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  was no heroic measures.
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  She died peacefully.
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  This is a really powerful and touching case.
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  And I think, you know, it does illustrate the importance of what you mentioned before, that it seems like, one of the principles that's foundational to palliative psychiatry is
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  the WHO model of care, which emphasizes prevention and relieving of suffering.
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  And it seems like that's kind of the point of the composite that you just presented for us.
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  Now, at the same time, these are situations that are really challenging for physicians to think about prolonging life, right?
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  And end of life situations for most physicians tend to come at the price of high anxiety and really discomfort, right?
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  Because that's not how we are trained.
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  This is not how we think.
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  And there is a sense that when it comes to end of life, maybe there is always something else that maybe could be done, or if not, things are hopeless.
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  There is this sense of hopelessness that tends to be associated with not
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  just palliative psychiatry, but palliative care in general, right?
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  It's another stage of care.
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  So as I'm sure that you are aware of, an alternative perspective on palliative psychiatry is that that's not the right way, the right way to think about helping these patients.
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  And why is that?
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  Because palliative evokes hopelessness, giving its origins in end-of-life care.
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  How do you respond to that?
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  Well, first of all, that's it's correct.
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  The term has some baggage.
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  Yeah, that's correct.
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  But also, I would like to stress that this is not, you know, specific for palliative psychiatry.
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  This is something that palliative care in general struggles with the baggage of the term.
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  And there's even I think in Texas, there's a palliative care ward who exchanged the signs and they say now supportive care ward.
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  And so there's really a struggle to deal with the negative connotations that this term has.
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  Personally, I find, you know, the alternative supportive kind of odd because, what is non-supportive medicine?
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  I don't think that kind of works.
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  But, you know, on a more serious note, I kind of think it's a good thing that we have a term with negative connotations because that
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  kind of acts as a barrier because if palliative psychiatry, you know, if we had like a term that were, you know, very nice, something that everybody would want, something like
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  supportive psychiatry, I think that might be a danger.
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  And having a term that has some negative connotations can help us to pause before we employ such a.
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  such an approach to not do it lightly, to not do it without being like really, really, really sure that this is what is best for this patient.
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  So in a way, the baggage could be seen as an opportunity to pause and reflect, which is important because there is qualitative, maybe that's a way to understand it, qualitative
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  change in the direction of care when we enter the palliative psychiatry realm.
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  Is that a way to understand it?
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  Yeah, I think so.
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  Which brings me to my next question, right?
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  Because these are patients who are in a different category.
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  there is, you mentioned that 3D, there is a clear understanding that there is severity, there is chronicity, persistence, and there is a high level of disability.
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  Now, when that happens, some would argue that there is no reason to think about palliative psychiatry as a different approach.
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  We could just think about what good care for that type of specific clinical situations and patients would entail.
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  which might be different than the typical clinical care recommendation.
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  in other words, the question is, isn't this, you know, for that specific cell population of patients, the type of things that we're talking about, isn't that just good clinical
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  care?
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  What is different about palliative psychiatry that a good clinical, you know, care type of treatment plan would not offer?
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  Yep, well, absolutely, Adrienne.
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  I'm glad if people think that what we are proposing is good clinical care because I very much think so too.
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  yeah, I absolutely agree with also the notion that this is what we have always done with this type of patients.
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  Psychiatrists have always been confronted with people who do not benefit, do not really benefit from available treatments and they have found ways to cope with that.
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  It is my impression that each and every psychiatrist has had to find their own ways how to cope with that dilemma of wanting to help when what we have on offer does not really help.
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  We have hardly any research on how to relieve suffering, especially suffering from the symptoms of mental disorder.
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  We have very little research on how to improve quality of life in people with severe and persistent mental illness.
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  And I think one of the reasons for that is that we don't have a conceptual understanding and we don't value this approach enough.
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  It is something that we do, but we always feel like we're just muddling through because we don't have a better idea and we don't necessarily teach that.
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  young psychiatrists.
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  Well, I can't speak about the US, but definitely in the German speaking countries, you are taught a lot about guideline conformed treatment as you should be.
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  But then you start working or you're in your workplace and there's people who have exhausted all guideline conformed treatment and basically nobody is telling you how can
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  you find a way forward with those patients.
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  I think to promote research into those important fields and to start developing trainings for young psychiatrists, I think we need to first define what we're talking about.
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  And this is why I think we need an explicitly defined concept.
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  What I hear you saying is that it would be great if that would be the standard of care, but the reality of medical care for a variety of reasons, but a significant component here
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  is that as physicians, we are trained to improve clinical outcomes based on evidence-based data that is quantifying clinical outcomes as opposed to suffering or quality of life.
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  So it's almost like, know, physicians, it's the nature of things maybe.
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  We tend to be wired through training, through experiences, towards looking at clinical outcomes first, as opposed to quality of life.
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  And these things, yes, they are correlated, but not always.
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  And what palliative care offers that's different is really that very heavy emphasis on the quality of life, which I would agree with you.
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  I think that that should be part of considerations of clinical care all along, but even more so
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  in the type of situations that we see with our SPMI patients.
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  And the other part that I think that seems like it's implicit in this, and I love the case that you presented, probably some cultural differences, but I think it's still true that
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  all over the world, physicians, the physician-patient relationship tends to still be to some extent somewhat paternalistic.
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  in which physicians tend to make the decisions, they could share them with the patients, we ask for agreement, we make sure that everybody's on the same page.
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  But the physician is the driving force between the decision as opposed to a truly sort of co-shared decision making, which seems to be at the core of palliative psychiatry.
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  Is that a fair thing to say?
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  At least I do hope that palliative psychiatry promotes a more partnership form of patient-psychiatrist relationship.
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  And I think the ethical thinking behind that is that even if people lack decision-making capacity, and a lot of the people that palliative psychiatry is about do not have
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  decision-making capacity, or at least not.
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  enough to simply respect their wishes.
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  But even if they do not have decision-making capacity, being subjected to coercion or not being listened to is burdensome to them.
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  So I think what I'm trying to say is even if we're not obligated to respect their wishes because they don't have decision-making capacity.
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  I believe that we still have like an obligation from the principle of non-maleficence to involve them as much as possible in the decision making.
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  Yeah.
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  And you know, in your article, you also mentioned something that I think it's very important to consider.
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  You talk about this sense of learned hopelessness could occur with repeated treatment failures.
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  And we know that cross-diagnostically, unfortunately, we have a good number of our patients who eventually meet criteria for treatment resistance, meaning they have tried
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  multiple treatments in the prescribed way.
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  doses of medications for the recommended amount of time sent yet they do not improve.
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  And I think an important point there to consider is how does the number of the treatment failures could in fact increase the risk for learning helplessness, which could increase
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  the risk for mood problems and depression farther down the road.
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  I realize there is no data on that, but I think there is a very, very important
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  point to consider.
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  And it sounds like from a palliative psychiatry perspective, one of the things that you would consider is to find a way to alleviate some of that sense of home homelessness
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  because you are bringing the patient on board.
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  You are giving them a real authority in making some of these very important decisions that traditionally when people go for involuntary treatments tend to be taken away from the
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  patient.
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  Yeah.
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  And also what we wanted to convey here is that trying yet another treatment, it always comes with the side effect of exposing the patient to the risk of experiencing another
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  treatment failure.
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  So I think there's a risk benefit analysis to do here.
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  And obviously we always have the hope that the next
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  treatment attempt will result in clinical remission or at least partial clinical remission.
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  But I think we have to be mindful about there always being a price to pay for the patient in terms of false hopes or not false hopes, but hopes that result in disillusionment.
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  So we've been talking about opportunities, right, and the complementary and improvement in overall care of our patients that palliative psychiatry could bring to the table.
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  What about challenges?
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  What about limitations?
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  there are so many.
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  Well, obviously, right now, it's just, it's an idea.
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  It's a concept.
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  Yeah, it's not, you know, it's not a flashed out ready to implement approach.
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  Obviously, I think there's a lot of research that's left to do.
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  And I think one one important pitfall that we have to be very mindful of is that it might come across as as giving up.
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  There's actually a couple of articles against palliative approaches that are entitled, we shouldn't give patients up.
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  And well, obviously this is not what we are meaning with that, but I understand where that association comes from.
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  And I do believe that there's a risk of misuse.
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  I think we have to be very, very honest with ourselves if we're considering a palliative approach.
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  Why we're considering that?
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  Are we considering that because we honestly feel it might be better for the patient or are we considering it because we are annoyed or frustrated or bored or I don't know, anything
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  else.
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  So I think we have to be very honest with ourselves here.
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  And I also think that we should never decide upon a palliative approach alone.
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  This should always be part.
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  of a multi-professional, multi-disciplinary decision-making process that obviously also involves the patient and their significant others and clinical ethics.
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  so there's always a group, a room full of people once these decisions are made.
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  And I think that's right now when palliative psychiatry is, I think we have to say it's an experimental treatment because we don't have good evidence to prove its effectiveness and
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  efficiency.
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  Yeah, I think that's the way to go.
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  Really reasoned.
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  is really...
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  Yeah, These are important points.
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  in your article, you also discuss and you're touching on that.
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  There is a risk here that this approach could unintentionally reinforce the stigmatization of people with severe mental disorders.
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  And you say, you know, that shouldn't result in people being seen as hopeless cases and not worth being cared for.
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  So that's a real concern.
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  And then it's important to be acknowledged.
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  Absolutely.
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  And I think what's important to keep in mind is what I always discuss with patients in palliative care, so people with life-limiting somatic illnesses.
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  I think we have to differentiate hope because there's always hope.
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  It's just that in some situations it may be wise to change what we hope for, not that we hope at all.
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  I think hope is a genuine human feature.
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  There's simply a shift in maybe not hoping for complete mental and physical well-being anymore, but hoping for more good days than bad days or hoping for finding a friend,
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  something like that.
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  There is always hope and I think this is very, very, important that we stress that, especially with patients who might be considered eligible for palliative psychiatry.
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  And I think that's such an important point and it is important, I think, to emphasize that what he does on the surface appears to be hopelessness or hopeless.
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  In fact, this is approach to restore some of that hope that's been maybe taken away.
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  Absolutely, because if we shift the priority from an unrealistic goal, the goal of clinical remission, full clinical remission, which in some cases sadly is unrealistic,
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  then we can focus something that we might well achieve, something that will truly contribute to the well-being of the person that is sitting in front of us.
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  It may not be as grand as health.
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  but it may still help them live a meaningful life.
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  And yeah, you're right.
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  I actually think that paleotropsy could, you bring hope, but you have to think a bit about it before you can see it like.
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  Anna, thank you so much for a thoughtful and illuminating discussion.
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  And thanks to all of you for listening to the Psychiatric News Special Report podcast.
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  You can read Dr.
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  Westheimer's full Psychiatric News Special Report at psychnews.org.
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• 30:27
  Until then, stay informed, stay compassionate, and take care.
• 30:33
  you