Epilepsy & Suicide: Breaking the Silence - Milena Gandy (Macquarie Uni, Australia) & Heidi Munger Clary (Atrium Health Wake Forest Baptist, USA)
Assoc. Professors Milena Gandy (Clinical Psychologist) and Heidi Munger Clary (Epileptologist) chat with Torie about the intersection of epilepsy and suicide, emphasising the importance of welcoming talking about addressing suicidal thoughts and even plans in people with an epilepsy. They go into the stigma surrounding suicidal thoughts, the need for open conversations between patients and clinicians, and strategies for improving patient care and quality of life. They also highlight the upcoming, fun(!) IBE workshop in Lisbon, aimed at enhancing patient-centered communication in epilepsy care! Transcription and links are below! 👇🏻
Our talk "From Awkward to Empowered: Having truly 'patient-centered' conversations in epilepsy care and research" https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1
Suicide crisis lines: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Milena Gandy
“Everyone will be different, and it's worth figuring out with the person, with epilepsy, what do they want? If they're reluctant to tell you about this stuff, maybe kind of gently asking like, ‘What are you worried about?’...”
00:11 Torie Robinson
This episode is about patient-centred care, suicide, and epilepsy. If this is triggering for you in any way, please go to one of our other many (over 200 episodes, actually!) that will hopefully be more cheery for you! You can also check out the link in our description below, listing suicide crisis lines.
Now, what is good patient-centred care? Well, it includes being able to talk with your clinician/patient (this IS a two-way thing!) about the most “awkward” topics - which sometimes affect our lives the most, like, for instance, suicidal thoughts, stigma, sex, SUDEP, and stools (or poo!)! Today we hear from our fabulous leaders Milena Gandy and Heidi Munger Clary, all about maybe the most “scary” (in some people’s minds) topic of all: and that’s suicide and epilepsy, and why talking about it with your doctor/nurse/patient needn’t be so scary. We’ll also hear about our upcoming 36th International Epilepsy Congress (in Lisbon) talk “From Awkward to Empowered: Having truly 'patient-centered' conversations in epilepsy care and research” - where one of the topics is, yes: talking about suicide with people with an epilepsy!
If you haven’t done so already, please press the thumbs-up for this episode, comment below, and subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies!
01:36 Milena Gandy
I'm Milena Gandy. I'm from Sydney, Australia, and I'm a clinical psychologist - by training - but I'm mainly a researcher and kind of academic. I work in an academic setting and I run a lot of research trials looking at how we can improve mental health interventions for people with epilepsy and other neurological conditions.
01:59 Heidi Munger Clary
Hi, I'm an associate professor of neurology, I'm an epilepsy specialist for adults with epilepsy in Winston-Salem, North Carolina in the United States. And I'm really interested in thinking about how we can try to close gaps in care for people with epilepsy and address some of the most important issues that impact people's lives, like mental health, suicide, and even risk of mortality.
02:25 Milena Gandy
Heidi and I are also co-chairs of a new, exciting integrated mental health care pathways Taskforce with the ILAE. So that's another hat that we both wear. And that's really been designed because we've known for a very long time that people with epilepsy have a higher risk of mental health problems. We know it's important, and this task force is really trying to move people to integrate that kind of mental health care within epilepsy care. So, we are leading that task force to see ways that we can do that.
02:59 Torie Robinson
In terms of psychiatric illness, which I think is personally is part of epilepsy far too often, rather than a separate disease. People say depression, anxiety - great, great. But what about the elephant in the room? And that is so often suicide. I can speak personally from having been very near there. I'm sure many people listening can, but they don't talk about it. What do you think about the topic when it comes to suicide and epilepsy?
03:26 Heidi Munger Clary
Well, I think it's really important to be open to talking about it. And in talking to neurologists, a lot of times they'll say, “I can't screen for depression because what if I find out someone is suicidal?” and there's this fear of bringing it up. But I think it's really important that we address this. People with epilepsy are two times or maybe even a little higher than that as likely to die of suicide than [of] other causes. And there's a lot that neurologists can do by opening a conversation to help prevent that, and so it's really important.
04:02 Torie Robinson
It's a two-sided thing, isn't it? Like, often prevents patients from talking about it. I mean, I've found it difficult to bring up in conversation, even with psychiatrists, let alone a neurologist. So… how… why do [you] think that's an issue and how do we tackle that?
04:18 Milena Gandy
I think it's still kind of a stigmatised issue, and people can sometimes feel judged or, you know, like there's something wrong with them to be experiencing suicidal types of thoughts. Or I often find people experience this phenomena of being distressed about being distressed, like, kind of…
04:38 Torie Robinson
Mmm!
04:38 Milena Gandy
…like, kind of like “What's wrong with me? I shouldn't be like this. No one else has this!” Whereas, you know, part of… going back to what Heidi said (the neurologist opening up the conversation) is sometimes it's just normalising that many people have suicidal types of thoughts, right? Particularly if you have epilepsy for lots of different reasons. It could be mental health-related. You know, we also know that suicidality… because it is a spectrum, right? You can get suicidal thoughts, to all the way to dying by suicide. But if we're talking more about the kind of suicidal ideation and thinking about suicide and feeling like you'd be better off dead, we know that some of that even predates getting epilepsy. can be…
05:23 Torie Robinson
Right!
05:23 Milena Gandy
…you know…so it's common, right? And if we talk about it and say “This stuff is common, it happens, it's understandable, and there can be lots of reasons for why it occurs, then I think people are more likely to talk about it because that takes away some of the judgment and the stigma. So, that…
05:46 Torie
Mm-hmm.
05:46 Milena Gandy
…normalising and validating of this issue can open up conversations where people feel like they can bring it up. I think that's sometimes why people are reluctant, because they feel like maybe this is a no-go topic.
06:01 Torie Robinson
Both sides of the table, really. We need to educate the patients and families as well… I think that it's okay to bring this up to have these or bring up these thoughts, but also for the clinicians themselves, as you were saying, Heidi.
06:14 Heidi Munger Clary
Yeah, I think that's really important. And sometimes, you know, clinicians feel awkward about it. It's not something that we get a lot of training in. Do we feel like this is, you know, something that you do every day as a neurologist? And there are things that can make it easier. For example, this is one of the reasons I really like using routine screening questionnaires in visits, because it's bringing these types of topics, mental health (and for example, many of the screeners have a specific specific suicidality question), it brings it up in a non… maybe in a way that's a little bit more comfortable and private at first, and then it can lead to a conversation, a follow-up question. “So, I see you said you thought sometimes you feel like you'd be better off dead.”, then we can ask further questions and say “Is this a problem for you? Is this something you think you might act on?”, and it opens the door to that conversation and I think it can give clinicians language to use for how to ask people more about it and make it a more normal and every day part of the conversation ‘cause it's so important.
07:24 Torie Robinson
We're not just talking about preventing a person dying, but also we want to improve their quality of life so they don't want to die, right?
07:33 Heidi Munger Clary
Exactly. And that's where tackling mental health in a broader sense is really important to try to reduce it from a global perspective, quality of life, mental health overall to optimise and improve.
07:49 Milena Gandy
I like Heidi's suggestion of sometimes a screening measure can be a nice way of bringing things up, particularly when people are time-limited. Or having, kind of, a set of questionnaires or questions that they have rehearsed or used before, that if they are reluctant and feel uncomfortable bringing these things up. In a research setting, [we] often do this in a standardised type of way. And I guess one trap and one thing that I think sometimes people with epilepsy might be reluctant to bring these things up is if they sometimes kind of talk about fearing that it might just take up the whole appointment and it's something that's important, but they, you know, it's not everything as part of their care. So, while they might… they don't often want people to overreact to having suicidal thoughts either. So it is…
08:42 Torie Robinson
Mm-hmm.
08:42 Milena Gandy
…kind of a fine balancing act of I guess the clinician being comfortable to talk about it, but knowing when it's important to go deeper into an assessment, like say a suicide assessment, or maybe even refer to a mental health professional, or to provide information “This is where you can get more help, or if you feel like you might act on these thoughts, these are some of the 24-hour services that specialise in suicide care”, to be able to pass on people to those services. And yeah, and not to be, kind of, afraid to talk about these issues and to kind of trust the person with epilepsy or the patient to be able to let you know whether they feel safe or not, whether that, you know, about acting on these thoughts and to build in that kind of trusting relationship with people, you know “Do you feel like this is something you might act on now?” or kind of make sure someone is safe, but if not, okay, well, “Let's talk about if you do feel like you might act on these thoughts or you, you know, you're taking steps to, take your own life, if, you know, if I'm not available to talk in an appointment or you don't want to talk to me about this, who are the experts out there locally for you that you can contact? Would you go see maybe a general practitioner that's closer to you? Okay, let's talk about that. Or would you call this mental health crisis line? Here's the number.”, just so you know, and you've had that conversation of where people can get extra help. I think that also can be part of, say, a neurologist’s or a psychologist’s role with people to have a bit of a plan if things get worse.
10:29 Torie Robinson
Would you also say, because I mean, I've experienced this as a patient, is sometimes they'll say, if you are just too far, if you're in a really dangerous place, go to A&E, just go there, right? Because waiting for appointment; it's not like one can time or put a time and date on how you feel, right? Sometimes it can be completely out of your control, and it doesn't make you a bad person at all. It just means that you're not very well, and I think going to A&E can really help. And sometimes you wouldn't get seen necessarily straight away (at least not in the UK), but being there, in a safe place, can help bring you down a bit from that awfulness. Maybe. What do you think, Heidi?
11:09 Heidi Munger Clary
And there are sometimes are other, depending on the environment, there might be other options. We have a hotline that people can call 24 hours a day. And I think it's also helpful to listen to the patient and see… sometimes I like to ask: “Okay, what keeps you from acting on these thoughts?” And I get a lot of responses that are… a lot of times these are people who have thoughts that are not on the level of about to act right now, and most of those responses are “I think about my grandkids, I spend time with them, I watch this silly television show…”, different things like that. So, there's a lot of different kinds of things that can open up if you ask more and think about broadly how you can help optimise people's mental health. And then of course, help them identify when that emergency services is needed as well.
12:03 Torie Robinson
I think a lot of people are scared to bring up mental health, especially suicidal ideation or thoughts or plans, because they'll be worried that someone's just going to bang them up, basically, in a prison, and they'll never get out. And it couldn’t be further from the truth, right (at least in our countries).
12:21 Milena Gandy
Yes, it can be a trigger for getting more help, right? And preventing unnecessary deaths if people are struggling, and that's why these conversations can be really important. But it is important to think about that perspective of “Why would someone be reluctant to tell me about this? Are they fearful that it's going to take up the entire appointment and they really, actually want to talk about something else?”. Like, it's important to them, but it's not everything that's going on at the moment. You know, like it's part of the pie, or are they worried that you're going to disclose this information to someone that they don't want knowing? Or do they just feel uncomfortable talking to you about mental health and suicide, and maybe what your job is as a neurologist, for example, is, is, is building a referral pathway to someone else that they can speak to because not everyone will want to talk to their neurologist about these things. You know, I screen for suicide and mental health in my research trials. And sometimes I get people to say: “Please don't let my neurologist know about my scores. I don't want them to know.”. And that's up to them, that's their personal… they don't have that relationship. And other people are like “Yes, please, can you send on all this information too?”. And that's where patient-centered care comes. Like, everyone will be different, and it's worth figuring out with the person, with epilepsy, what do they want? If they're reluctant to tell you about this stuff, maybe kind of gently asking, like, “What are you worried about?”... Or, you know, “I'm asking because I'm, you know, I'm worried about you and I care about you and I don't want you to, you know, die or I don't want you to hurt yourself unnecessarily and I want to work with you to maximise your quality of life, but maybe I'm not the person to talk to about this and can I help you find other people in your network that might be supports that are better for you or you're more comfortable with”. And that can also be the role of the neurologist, like, knowing their limits and referring on.
14:29 Torie Robinson
You just said about how you said quality of life. It's not just “I don't want you to die.” or “I'm scared of you dying.”. That's what nobody wants to hear that, right? They need to be encouraged that it's worth living, not just they don't want you to pop your clogs.
But anyway, on a very positive note, on a “delightful” topic, we have a presentation at the upcoming IEC (International Epilepsy Conference) in Lisbon in August, September, don't we?
14:53 Heidi Munger Clary
Well, the goal of the workshop is to think about how to have patient-centered conversations, how to talk about the awkward things that either the neurologist/clinician might not want to bring up or that the patient might feel reluctant to bring up in certain circumstances. How do you open that dialogue and listen, and hear what is really important to the patient, and prioritise that and have a meaningful conversation?
15:19 Torie Robinson
Or even help the, I think the patient identify what's important to us. ‘Cause sometimes we don't even know, especially if we're quite unwell!
And Milena, tell us about the games we're going to be playing. I can't believe I'm saying we're going to be talking about these things with games, but we are, tell us!
15:33 Milena Gandy
It's going to be a Special Interest Session so, we're hoping it's going to be engaging and fun and not kind of a boring, stuffy PowerPoint type of presentation! So we've got some conversational bingo that we're going to play, we're going to have some role plays, and we really want to hear from all types of diverse opinions. We don't want just researchers there or just clinicians there or just, you know, we want lots of people with epilepsy to come along, share their experiences with us. You can't do patient-centered care without patients. So, you know, we want to talk about communication and it to be interactive and kind of fun and kind of mirror what good patient-centered care is. It’s to be genuine, authentic, and non-judgmental. So we can hopefully have the workshop mirroring what we see as good communication skills as well.
16:24 Torie Robinson
And we're gonna have role play too, aren't we? I always think about… that sounds really bad and naughty…
16:28 Milena Gandy
Yes! Hahaha! Yes.
16:29 Torie Robinson
…but it's not like that. It's professional role play, right, Heidi?
16:32 Heidi Munger Clary
It's going to be really fun to watch… and then a little bit of participation, but that's on the small stage and lots of… it should be a fun and interactive thing to do.
16:45 Torie Robinson
Come and meet Milena, Heidi, and I, at the conference with our colleagues - epileptologists Lucas Orellana and Brad Kamitaki at the IEC conference in Lisbon! It’s at 8am on Monday Sept 1st in Pavillion 3C!
And, thank you to Milena and Heidi for chatting about how suicide, suicidal thoughts, and suicidal ideation are not anything to be ashamed of, they’re not something for clinicians to be scared of, and how patients can or should be able to bring it up with their neurologist, and how the latter can put processes in place and feel comfortable to talk about it with them and support their patients.
Remember that below is a link to suicide crisis lines also.
Check out more about Milena and Heidi at the website torierobinson.com where you can access this podcast, the video, and the transcription of this entire episode all in one place. And if you haven’t done so already, please press the thumbs-up for this episode, comment below, and subscribe to our channel, so that we can get way more people around the world - clinicians, patients, and the general public - learning facts about the epilepsies!
See you next week!
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Milena Gandy is an Associate Professor, Clinical Psychologist, and Researcher in the School of Psychological Sciences at Macquarie University in Sydney, Australia. Her applied clinical research focuses on enhancing the quality of life and wellbeing of individuals living with neurological disorders. She is particularly passionate about improving access to effective mental health care within neurology. As an emerging researcher, she has developed several complementary streams of work in this area, including mental health detection, epidemiology, psychological treatments, and health policy.
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Previous episode with Milena Remote Mental Health Therapy For People With Epilepsy
ORCiD Heidi Munger Clary
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Heidi Munger Clary is an Associate Professor, Adult Epileptologist, and Researcher from Atrium Helath Wake Forest Baptist, USA, focused on closing gaps in care for mental health problems in epilepsy.
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Previous episodes with Heidi