Hot Topic: Integrating palliative care into routine care for patients with movement disorders

He is the manager of the Health Clinical and Community Services at Fight Parkinson's in Melbourne, Australia. Mr. McConvey, thank you very much for joining us today. Could you please tell us your background and how you came in palliative care in movement disorders, [00:01:00] as well as your work at Fight Parkinson's?

Mr. Victor McConvey: Thank you so much, Sarah, for the opportunity to participate in the podcast series. A little bit about me, I'm a nurse by background and I've been a nurse for the last 35 years. Probably spent the vast majority of my career working in progressive neurology, both in a ALS initially and then transitioning into a Parkinson's disease nurse practitioner role when I worked in the UK.

Currently I work at Fight Parkinson's as the statewide manager of health and clinical services, and I have a particular passion for palliative care, understanding that, that really, that the end of life care of people with Parkinson's and all progressive neurological conditions. Is often not as well looked after in our healthcare system.

And so's something that I've been really passionate about improving.

Dr. Sarah Camargos: How do you see palliative care in movement disorders today? Are we moving forward considering that several health committees and organizations now recognize an important gap in this [00:02:00] field?

Mr. Victor McConvey: Look, I think that's a really excellent question and encouragingly, I think, we are moving forward at different speeds in different areas of the world, but we are certainly moving forward. We are now acknowledging that palliative care is something that people with progressive neurological illnesses like Parkinson's need to have.

We've seen excellent models of palliative care emerge. And it's been recognized in the World Health Organization's technical brief on Parkinson's disease, that palliative care services are actually significant gap and that we need to develop a better response to complex advance and end of life palliative care.

We've seen some beautiful models emerging and also considering that Parkinson's is a condition where we can only ever control symptoms, that is the essence of palliative care. So really the care we're delivering from diagnosis is actually in fact palliative. We just need to be brave enough to say, actually this is what we need to do.

Patient-centered, [00:03:00] multidisciplinary, integrated care, which is focused around excellent symptom management, which is the essence of palliative care, and that's what we all strive to do anyway in movement disorders. 

Dr. Sarah Camargos: Previous, project of yours highlighted through a global survey several barriers and attitudes toward palliative care among movement disorders. One important issue was the lack of confidence among clinicians in referring their patients to palliative care. How we are today?

Mr. Victor McConvey: I think in different parts of the world we have different experiences in palliative care and access to palliative care. Access and attitudes survey and article that the task force developed really highlighted some barriers which are variable around the world, but also highlighted that amongst our neurology community there was a passion, particularly amongst our younger neurologists.

To actually learn more about palliative care, understand [00:04:00] what palliative skills looked like, so they could actually follow their patients as their illness progressed, rather than getting to a point where, " there's really not much else I can do for you", that is less apparent now in neurology, which is really encouraging to see. We've seen some excellent models of palliative care, such as the work pioneered by Janice Masaki in Alberta is amazing models of palliative care. That is holistic, multi-disciplinary and supports the person right the way through life. We see some barriers in some countries to accessing that. Where palliative care is maybe resource limited and often restricted to people with an oncological diagnosis.

But I also see in many countries like Great Britain and in Australia and South Africa, that's changing and there's a greater acceptance of people with neurological illnesses within our palliative care sector and the nurses and other clinicians wanting to know more about how [00:05:00] to manage these complex end of life issues.

Dr. Sarah Camargos: Yes, and palliative care is not only the end of life care and be aware of it, as you said. Interdisciplinary collaboration is really important. Who are the health professionals involved in palliative care for people with movement disorders?

Mr. Victor McConvey: I think we can see there's often a core of healthcare professionals, which might focus around neurologists, palliative care physicians, nurses, physios, OTs, speech and language therapists. But that team needs to expand for the patient. So we need to include social work, psychology, music therapy, spiritual care, whether it be pastoral care through a faith-based person or whatever that person actually needs to make sure that as we get to that period of life where person with Parkinson's or atypical Parkinson's has a high level of disability. Maybe there's some impaired [00:06:00] communication that we're all working together to make sure that the person's able to see some joy in their life, to be comfortable both from a physical perspective, a psychological perspective, and a spiritual perspective.

That we really deliver that holistic care as we would all want to receive ourselves and as clinicians working in the space we need to be really brave and pioneer and push that this is really important. That if someone wants to have their pet dog come along to sit on their bed and the hospital says, no, we need to work out a way around that.

'Cause that's really important for that person. 

So we need to really flexible and person centered.

Dr. Sarah Camargos: Yeah. You have a program with dancing, dancing with Parkinson's and box with Parkinson's. So more professionals in the field as well, I believe.

Mr. Victor McConvey: Absolutely, we have some amazing programs that have often [00:07:00] been community driven by people living with Parkinson's. And often bringing some clinicians and clinician researchers along the way. We have painting with Parkinson's, boxing, pickleball, ping pong and Parkinson's. So we've got this fast variety of programs that people can participate in and continue participating in as there was progresses, as there's modifications made to make it easier as disability increases.

And that's bringing in something that, that is maybe non-medical that actually gives joy and happiness to people with Parkinson's and a sense of normalcy. When everything else has changed, you can still play ping pong, you can still get out there and play pickleball when maybe you can't walk down the street that well, but you can play pickleball.

That's great. We need to really focus as clinicians and think more broadly about what our patients want.

Dr. Sarah Camargos: And make them happy and show them there is a space for a lot of things to do. 

Mr. Victor McConvey: Yeah.

Dr. Sarah Camargos: How, [00:08:00] diversity, cultural factors, and belief systems intersect with palliative care for Parkinson's disease and other movement disorders.

Mr. Victor McConvey: That's an incredibly important consideration that certainly in illnesses where we can only treat symptoms, so our atypical Parkinson's conditions and our Parkinson's conditions. Understanding that whole person is really important. Understanding how cultural beliefs might shape the care that is being delivered or designed. Understanding that there might be some cultures where telling someone that they have a limited lifespan is not something that the patient wants to hear, but the family might need to hear that. Understanding that if our patient is from the gay, lesbian, or trans community, that we need to be accepting and understanding that they might have a different family structure and a different relationship structure, and so that we don't have that person go back into the closet when they're having medical interactions that we're supportive of [00:09:00] that. Understanding that religious beliefs might change all sorts of things that we might offer. There may be some people who have very strong religious beliefs that are about maintaining the sanctity of life where offering them or letting them know that there's a voluntary assisted dying program might be something that they would find unpleasant. So we need to be really sensitive to all of those belief structures and often incorporate that into our care and understand that sometimes our own moral structures might be thinking, this might be the best way to proceed, but that's actually different to how the patient's construct of life actually is, and we need to respect.

Dr. Sarah Camargos: Yes, and as I understood you consider a family and caregiver in palliative care too, so they participate of the program of palliative care.

Mr. Victor McConvey: Yeah. Our model of care is [00:10:00] inclusive of family, so it is patient focused, but very family friendly and that family structure is however, has evolved around that individual. There are some of us who don't have much family, or they might be living at a distance. And our families has become a friend network around us and we need to be really understanding and respectful that everyone has different structures and culturally different family structures.

Dr. Sarah Camargos: Yes. Mr. McConvey, please tell us a little bit about the PD Pal project. Its origins, aims, and achievements.

Mr. Victor McConvey: So the PD Pal project was an amazing European-wide project that is very much grounded in education and developing an online education tool but also looking at developing new standards of palliative care. We have very limited standards are available to us very interdisciplinary, focused and led through by [00:11:00] Angelo Antonini and his team at the University of Padua.

It really has achieved some amazing things where we've been able to look at ways we can integrate palliative care into mainstream healthcare, so into disability and rehabilitation services and model that care where you've actually got neurology, rehabilitation and palliative medicine or intersecting to support the best possible technology that we need to take elements of all different models to actually support the individual.

That it might not be that linear palliative care that we might see in oncology. That neurology palliative care is a very complex delivery. There will be some people that start receiving palliative care who might have been in the community struggling along, suddenly they're getting really good care and that condition actually improves.

They're still palliative, but they're living a bit better. And the PD Pal project really looked at all of those elements and pulled them together in a really beautiful model. [00:12:00] And it's supported by some amazing online education, that actually anyone can access to upskill and increase their awareness of best practice delivery, of palliative care for people with Parkinson's. 

Dr. Sarah Camargos: A beautiful, wonderful project of yours. What do you think it's the next priorities for integrating palliative care into routine management of movement disorders?

Mr. Victor McConvey: I think we have a number of challenges in front of us. Some of those are making sure that we have a healthcare workforce that is equipped to actually understand the transition from routine care into more care that takes a palliative approach and to be able to respond to those cues. We have some challenges within our healthcare systems to make sure that the care that someone with Parkinson's requires towards the end of life is actually resourced. We know that it's a [00:13:00] different model of palliative care than what might be existing for oncology. This is a much more interdisciplinary approach with palliative care and probably lasts longer. So I think for us as clinicians, when we are seeing someone with Parkinson's and we are thinking if you passed away in the next sort of year or so, I wouldn't be surprised. That's often a sentinel marker that this patient we need to be thinking of a palliative approach to their care to make sure that their spiritual, physical, and psychological needs are being addressed. That we've got good speech therapy in there to make sure secretions and communication is optimal.

Physiotherapy for comfort, OT for fatigue management, nursing care for confidence and skincare. That we're also incorporating spiritual care and psychology to support that. So we've got to resource those models, which are challenging because that's expensive. And so one of our challenges might be that we need [00:14:00] to develop some lobby tools that we can then take back to government or insurers and say, this is what we need to deliver the best care.

Dr. Sarah Camargos: Perfect. And your work on delivering multidisciplinary care, you published, I think in 2023 and rehabilitation is really, really, really outstanding. I think it was in June of Parkinson's Disease. Am I right? 

Mr. Victor McConvey: Yeah. Yeah, that's correct. Yeah. 

Dr. Sarah Camargos: It's amazing. I encourage you to look into this paper because it's wonderful. Mr. Victor McConvey. Thank you again for your wonderful collaboration today. And to our listeners, stay tuned for the next episode of our Hot Topic series.

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