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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Dr. Colleen O'Connell:
It can be overwhelming. Oftentimes, the way in which it is delivered unfortunately can stick with that individual in a negative way much longer than the actual diagnosis itself.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. One thing that has been driven home for me during my time connecting with you and bringing you stories of a fight to make ALS livable for everyone everywhere while ultimately fighting a cure, it's that receiving an ALS diagnosis can be devastating. That's something that comes through in so many of the conversations I've been fortunate enough to have with people living with the disease today. But what role can healthcare professionals play in making the delivery of that news in a better way? That is the question. A team of researchers from Canada and the United States have been asking.
Dr. Angela Genge, executive director of the Montreal Neurological Institute, Dr. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, and Colleen O'Connell, medical director at New Brunswick's Stan Cassidy Centre for Rehabilitation presented their findings during the 2022 Allied Professionals Forum in a panel moderated by Cathy Cummings, executive director of the International Alliance of ALS/MND Associations. I recently caught up with Doctors Kavanaugh and O'Connell, along with Cathy Cummings and Mark Massey, who helped conceive of the work that led to how to break the news in ALS/MND, a primer for physicians and allied health professionals geared toward helping them deliver challenging news more effectively. Well, thanks everyone for being with us this week on Connecting ALS.
Dr. Melinda Kavanaugh:
It's a pleasure to be here. Thanks for having us, Jeremy.
Mark Massey:
Thank you.
Jeremy Holden:
Going to get into the program that we're all here to talk about today in a moment, but I want to set the context of the challenge or the problem that we're trying to solve, and it probably goes without saying for most listeners that learning that one has a diagnosis of ALS can be devastating. What do we know about how that news is received?
Dr. Melinda Kavanaugh:
Well, I'll tell you, as a many years licensed clinical social worker, I worked in neurology clinics and I was privy to those diagnoses, and I was privy to the response that individuals living with the illness and their family members felt at the time of a diagnosis. And what I have consistently seen over the years is that it's often delivered in a way that doesn't have a lot of emotion attached to it. It's often delivered in a way that can feel very detached or that doesn't have enough information associated with it. So when the patient and their family member, their caregiver walk out of that space, there's left with lots of questions, lots of, "How do I feel about this? Who do I talk to?" And almost a feeling of, "I didn't get all that I wanted. I got a diagnosis, but I didn't get maybe some emotional response or support, or some follow up at that time."
Dr. Colleen O'Connell:
I think it's different depending on every individual and their situation, but I think not wanting to paint everybody with the same brush, but that receiving a diagnosis that has the implications such as a diagnosis of ALS can be devastating, it can be overwhelming, and oftentimes, the way in which it is delivered unfortunately can stick with that individual in a negative way much longer than the actual diagnosis itself.
Cathy Cummings:
Can I also chime in on that question? I would take my hat off as the executive director of the International Alliance and put my personal hat on as the daughter of someone who passed from ALS. And thinking back to my experience of receiving that news, I think this program is so important because there's a cascade of communication that happens that it's not just at the time of diagnosis that it's a difficult conversation but also when that individual has to pass that news on to someone else or as they're going through their journey and meeting with different allied health professionals. So there's lots of people in the communication web that this program pertains to that are so important as part of the ecosystem, I guess, that supports the person living with ALS.
Jeremy Holden:
You touched on an important point there, Cathy, that I want to come back to in a moment about how a person living with ALS then shares the news with people in their community and the extent to which this program can help those conversations as well. But let's start with the program. We're all here to talk about today how to break the news, and it strikes me when this was discussed at the Allied Professionals Forum back in December, it really jumped out to me the decision to not use the word bad news. Talk to me a little bit about that conscious choice to not lean into bad news.
Dr. Colleen O'Connell:
True. And to be honest, it was a conscious decision to try to avoid using the word bad in terms of the news. And that was coming to us really more from work that's been done with persons with lived experience and have been through this type of situation, conscious that of course it's not good news, but that it is in fact news.
And that what we are often trying to work on in terms of improving the way that we deliver this type of news is that we are focusing on the things that are proactive and that while the news itself of a diagnosis, no matter what the diagnosis is, often can be very difficult for someone to hear, but we're wanting to approach this in a way that structures how we deliver a diagnosis or even an update to a diagnosis or a progression or a treatment option is what is most important, and that it is not just one person who has the rule in that delivery, but it's in fact an entire team and every member of that healthcare team, and that we all have a role in how we give those types of information and what we do with it following along with the person and their family.
Dr. Melinda Kavanaugh:
Well, I'll say it was a conversation. So it wasn't an immediate assumption that we either would or wouldn't use that word, and we really sat with it for a little while. It very much, for most people, does feel like bad news. It's a very complicated, very difficult diagnosis. At the same time, we wanted to be thoughtful that we didn't want to label it in such a way to get it out there to where it had all of the negative connotations with bad and what bad might mean, and people's perceptions will vary, whether they definitely agree that it's bad news or they feel a little nebulous and unsure about it. We also wanted to make sure that it was a broad enough program and titled in a way that it reached a broad enough audience so that it wasn't simply just about the bad news and the bad part. It was about the news overall.
And frankly, it taps into what Cathy was saying just a moment ago, that there's the point of receiving a diagnosis, but there's the point of home visits with occupational therapists or physical therapists that they aren't necessarily breaking any news, but they might be the first allied health or other health professional to see these individuals or families post diagnosis. So for them to understand how to interact and how that might also be some sort of news that they're breaking, that they might need a hospital bed or they might need to move to some sort of change in food types or thickening, whatever it is. Those are also news on the continuum, and we wanted to be careful and thoughtful about labeling everything bad.
Mark Massey:
That was awesome, that really captured... If I can just talk about the fact that we've vetted this program with patient groups through the Alliance, and we also showed it to a spiritual care giver who went through the deck and she had really, really good insights about the program, and one of the first comments she made to me was, "Listen, every time I go through a slide, I see the word bad. When you're framing the conversation and the word bad is there, it will frame it negatively." So she suggested, "You ought to think about maybe looking at the number of times the word bad is used in the presentation because let's face it, it's bad news when you give it an ALS diagnosis, but framing it bad all the time is just going to lead you somewhere you may not want to go." So it was good feedback.
Jeremy Holden:
And I don't want to string listeners along too long. We are going to get into the nuts and bolts of the program itself shortly, but I want to do one more table setting discussion here. We're talking about empowering primarily or maybe initially clinicians, professional healthcare experts on how to deliver diagnosis, something that they do day in and day out. What is the state of training? What do we know how people in the clinical setting are trained and taught to deliver diagnostic news that oftentimes isn't good news?
Dr. Melinda Kavanaugh:
Mm-hmm. Well, I'm a licensed clinical social worker, so I'm not a physician, so I certainly don't want to speak to how physicians across the board are trained. But in our workings with Dr. Angela Genge and Dr. Colleen O'Connell, who are very much integral part of this project, they really discuss the fact that there's not a lot of this that happens in medical training. There's not a lot of this real deep dive and guidance in how to think about how we deliver a diagnosis, and particularly how you feel as a practitioner.
We spend a lot of time in the program about how you feel and how you know yourself and your emotions, and those things don't get really delivered in a consistent or a thorough way when you're going through medical training. You might have some classes here and there or a session here and there, but it's not something that is universal and it's not something that's followed up on post-training, which is what is particularly critical about this program is that we offer something post medical school, post-residency. When you're in your practice, when you're out doing your work, this is an opportunity to take a step back and do this program and think and reflect on the work that you're currently doing, diagnosing, delivering difficult diagnoses.
Dr. Colleen O'Connell:
Yeah. ALS is one of those diagnoses that when you are training, and in particular as a neurologist and for myself on the physical medicine specialist, but it's the one condition that traditionally and for decades, we tend to feel the most hopeless about in terms of there being so little to offer in terms of a treatment and the fact that this condition progresses in an unrelenting manner and that what it does to an individual can be so devastating in terms of losing your ability to control your muscles and progressively becoming paralyzed. And it happens quickly, and it happens often at the peak of your life. It's got that horror and that fear attached to it. But we need to change that as well because we now do have some treatments. Multiple different drugs are available. There's therapy interventions that we know could help improve function and quality of life for getting better at recognizing it. So there's reason now to try and get away from that fear and just start talking and having these conversations with people early and so that we can start those really necessary treatments.
Jeremy Holden:
All right. Let's get to it. So now we're going to talk about ALS space, and we're going to talk about... We don't have a full 90 minutes to go through the whole, but just what are some highlights? How does the program work? What are its aims? What does somebody take away after they go through the deck, go through the program, go through how to deliver the news?
Dr. Colleen O'Connell:
Sure. This is a program that was put together with an interdisciplinary team and being informed by persons who have been through an ALS diagnosis within their family. And it was in direct response to that very obvious need to help healthcare workers, help health professionals improve their ability, and their comfort, and their confidence in being able to give news such as an ALS diagnosis and everything that goes along with it and does well to improve that experience for the person with ALS in their families who are receiving this type of diagnosis.
And so this is a program, it's meant to be an education program targeting any health professional who works with people, not just with ALS, but with any type of diagnosis for which is going to have these longer term health implications. A participant in the program would go through a number of exercises, which include some self-reflection, learning about some of the research around delivering diagnoses, and then some very practical exercises to work on and learn about the different skills involved, and then some very practical points and steps to use when planning and delivering and following up on delivering a diagnosis such as ALS.
Dr. Melinda Kavanaugh:
I would say that what I hope they take away is an appreciation for the complexity that goes along with working with patients and families living with ALS, whether you are doing that initial diagnosis, whether you are doing that first home visit post-diagnosis, whether you are working with a patient who has progressed to the point where frankly, their diagnosis has changed a bit and things are different than things have changed. I hope that, and I think we as a team really hope that people take away the importance of being very thoughtful about these interactions with persons living with ALS and their family members and their caregivers, that they take that time to understand how they might feel should they be the individual receiving a diagnosis or interacting with an allied health professional around a diagnosis, that they take that time to really think through how they themselves would feel and what that process would look like for them, and then translate that into their interactions with persons living with ALS and their family members and caregivers.
And we do have a protocol and we do have lots of steps and there are steps that are very thoughtful and mindful to think about what that process looks like, whether you have a long period of time or a short period of time, there are very easy things that you can integrate into those interactions to make it more frankly, patient friendly and physician and allied health professional friendly and supportive.
Jeremy Holden:
Mark, I want to bring you in. What gave rise to this project? What were some of the intended goals when first putting pen to paper or getting a working group together to think some of these concepts through?
Mark Massey:
So more than a year back, I was having dinner with Dr. Genge, and she was talking to me about when she first got involved in ALS and the reason why she got involved in into ALS, which was really, she was working under her mentor at the time was a fantastic physician, a great clinician, but when it came time to give the actual ALS diagnosis to a patient, she said to me, "You leave the room. You just leave the room completely, and you leave me there." The young new doctor with the patient knowing that I needed to convey this information to this patient. The physician was probably a world-renowned neurologist but not able to speak the diagnosis. So she got involved into ALS really that way, be being able to empathize with families and with patients, being able to communicate effectively the diagnosis.
She felt something that she had a gift and maybe that's something that she would like to follow. And I said to her, it's interesting because for me, in my past, when I used to work for another company that developed a program to help prepare neurology students for their Royal College exam, and we set up a weekend meeting where we had OSCE sessions with aspiring neurologists to practice their Royal College exams through OSCE sessions. So basically, I was giving the task of being an assistant and a actor in those sessions where the physicians needed to give me the bad news. The bad news was that my wife was brain dead, and they had to convey that information to me. And I was saying to her, I saw probably around 30 medical students go in front of me giving me bad news. Some were really, really good at, but some weren't.
And I was told at that time that medical training for these neurologists to convey and communicate bad news was not really given. So this was really a practice session. So we had the discussion and said, "Well, we really need to do something about ALS because what a terrible diagnosis and how terrible it could be for patients in the family to go through a bad process." So this started the wheel going, and we started discussing, and she said, "Well, you need to approach Cathy Cummings. She knows everybody. She knows everybody. She's going to be able to gather the right group together." And she did. So the faculty of Dr. O'Connell, Dr. Kavanaugh, and Dr. Genge, along with Cathy Cummings made an astonishing job of building this material and just making it work.
Jeremy Holden:
Yeah. It's an interesting anecdote thinking about the work that you did with medical students trying to gauge going through that practice and seeing that some can do this in a way that feels more empathetic than others. Dr. Kavanaugh, it reminds me of something I heard you say when you were presenting this to the Allied Professionals Forum really, it's struck with me, and I'm probably not getting the quote right, but it was something to the effect of change your mind, change your face.
Dr. Melinda Kavanaugh:
It was. Get your mind right and fix your face. I think it helps if you say it with a southern accent too. But yeah, it really encapsulates this idea of... And getting your mind right is your own personal mindset and your own personal thought process, but also your mind around where are you when you're giving this diagnosis? Are you in a safe and comfortable place for the individuals who are receiving it? When you're in someone's home and you're having to talk about complex progression of the disease, are you doing it in an environment that is thoughtful, that is careful with the people who are there?
And when you think about fixing your face that has everything to do with what are you displaying? Are you displaying confusion? Are you displaying sadness? Are you displaying just lack of empathy? What is it that's going across your face? And patients and caregivers have responded that sometimes they feel like their physicians are almost robotic when they're giving a diagnosis. And that really goes to this idea of really getting your mind right and fixing your face because the people living with the diagnosis and their families really deserve that.
Jeremy Holden:
We've heard from folks on this show who have shared their stories with us and with listeners about some of the challenges they face, then sharing the news that they're living with ALS/MND with people in their community. I know this tool is geared toward allied professionals, and clinicians, and healthcare professionals. But Cathy, you mentioned this earlier and I'll just open up to the crew. Do you see a use for these techniques for people who now are forced with the reality of having challenging conversations or not sharing bad news, but sharing news with their loved ones, with people in their community?
Cathy Cummings:
Absolutely. 100%, Jeremy. We see that as phase two. When we very first started to discuss the outcomes of this program, when Mark brought everybody on board, we talked about the entire stakeholder community and would love to down the road have a phase two that helps people be able to share that news within their own community, whether it's their family or their friends, anyone that they're engaged with.
Jeremy Holden:
You mentioned that being phase two. So that signals to me that we're in phase one. What are the next steps? What is the rollout plan? How can folks access the document? Where do we go from here?
Cathy Cummings:
In terms of phase one, what we'd really like to see is to have some opportunities for the faculty to present this program live to clinician groups and to other allied health professional groups as you know the program was done in a bit of a truncated version in San Diego for the allied health professionals of the International Alliance. We'd like to build in its full splendor for clinicians, and we have probably about five or six different meetings on our radar where there are gatherings of clinicians that work in the ALS/MND space that we would like to be able to do the full program as they said. We also have some plans down the road to hopefully put this online so that we get access for anyone around the world that wants to learn about breaking the news. So that would be the next thing that we're going to look at after we've had a chance to deliver the program install and get feedback and close that feedback and make sure the program is meeting all its learning objectives.
Dr. Colleen O'Connell:
We have lofty ambitions. But first of all, we were so motivated and somewhat humbled by the response that the launch had when we did this in San Diego at the International Alliance meeting and the Allied Professionals meeting and so happy, and I think reassured that this is a program that is very much in demand and is very much needed. So we've had requests to help in rolling this out and presenting the program and facilitating it in a number of venues around the country as well as internationally. And our goal then is to have some key strategic programs run in various areas in Canada, in the United States targeting those health workers who work directly with persons with ALS in their families.
And then also almost in parallel to develop an online asynchronous learning program that persons could access through the internet, for instance, and actually do a self-pace learning and training through the materials that we've developed and that this could be hosted by the Alliance as well. I think one of the things that's really important is that we remember that in a diagnosis like ALS is that this is a team and a group of health professionals, family members, community workers, advocates that are all there together working with an individual and their family. And that just as the entirety of ALS care requires this team so does supporting a person in giving these diagnoses and the implications following that as well. So everybody has a role to play.
Jeremy Holden:
Well, really just fascinating program. I loved hearing about it and having the opportunity to talk about it, and it brings some of the research that's being done on this important topic to listeners. I just want to thank all of you for your time and for your work on this truly innovative research.
Dr. Melinda Kavanaugh:
Thank you, Jeremy. It was an honor to be here. Thank you.
Mark Massey:
Thank you very much.
Cathy Cummings:
Thank you, Jeremy.
Jeremy Holden:
I want to thank my guests this week, Dr. Melinda Kavanaugh, Dr. Colleen O'Connell, Cathy Cummings, and Mark Massey. If you'd like this episode, share it with a friend. It's a great way for us to connect with more listeners. And while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It is also a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar, post-production by Alex Brower, production management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.