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Welcome to Connecting ALS. Today we discuss the right to quality of life with Dr. Colleen O'Connell.
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.
This transcript was exported on Dec 20, 2022 - view latest version here.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. This afternoon, the International Alliance of ALS/MND Associations wrapped up its 2022 meeting in San Diego with a keynote address from Dr. Colleen O'Connell, focused on the right of everyone living with ALS/MND to quality of Life.
Dr. O'Connell is Medical Director at New Brunswick's Stan Cassidy Centre for Rehabilitation, and Clinical Research Director at University of New Brunswick Institute of Biomedical Engineering. She also serves as Research Chief for Team Canada Healing Hands, a not-for-profit organization she co-founded in 2002, dedicated to advancing rehabilitation capacity in lower resource countries.
I recently had an opportunity to connect with her about the work that needs to be done to enshrine that right to Quality of Life in Global Health Systems. Colleen, thanks so much for being with us today on Connecting ALS.
Colleen O'Connell:
My pleasure.
Jeremy Holden:
Well, let's just start things off and give you an opportunity to introduce yourself to listeners and tell us a little bit about your connection to ALS.
Colleen O'Connell:
Thanks very much. My name, as you said, is Colleen O'Connell, and I'm what you call a rehabilitation physician. So I'm a specialist in physical medicine and rehabilitation. I'm the Medical Director and the lead for the ALS Clinics at our Neuro Rehabilitation Hospital in Fredericton, New Brunswick Canada. I'm also a member of the Canadian ALS Research Network, and I work with patients both through inpatients, outpatients, telehealth, and outreach home visits.
Jeremy Holden:
Because of your just vast knowledge about the field and your expertise, you've been asked to give a keynote address at the International Alliance of ALS/MND Associations' annual meeting. And part of that, I guess the address is predicated on this idea that rehabilitation is an essential health service. I'm curious to get your perspective, having looked at this issue, is that something that is kind of baked into most healthcare systems or is it something that is maybe kind of taken for granted or not fully embraced?
Colleen O'Connell:
I would say it has not been baked in. In fact, it's just kind of at the simmering stage right now. The recognition of the role of rehabilitation and what rehabilitation actually entails, which includes proactive management of patients' function with the goal towards improving their quality of life, is absolutely an essential health service, but unfortunately goes under-recognized and underappreciated and often under-resourced.
I don't think there would ever be any question, for instance, if an individual needed a cardiac heart pacemaker. They would get the cardiac heart pacemaker. They wouldn't be offered a secondhand or donated piece of equipment from a volunteer or charitable organization's equipment pool.
But unfortunately for many persons with illnesses or injuries that cause disability such as ALS, that's often where they're left with, is relying on nonprofits, relying on secondhand equipment or donated equipment, or relying on a lot of effort to convince insurances or payers that what the patient needs is absolutely essential.
Jeremy Holden:
So let's go through what some of these needs are. Are we talking primarily about power chairs, mobility devices? Or are we running the gamut of all assistive technology, things like ventilators? Is that part of this discourse around what is not part of a standard-of-care?
Colleen O'Connell:
Often we think about mobility aid such as wheelchairs, both power wheelchairs or manual wheelchairs as an obvious one in ALS, and of course those are part of what we're talking about. Unfortunately, I'd love to say that oh, no, ventilators, they would be covered. The right to breathe seems absolutely essential. Life depends on the ability to breathe. But unfortunately in many, and I would even say sometimes most jurisdictions, the access to a ventilator is very much financially dependent on what your insurance might pay and who you might convince, or a provincial or regional ventilation pool.
We'd like to change that, that that is something that all patients would get immediate access to as soon as clinically indicated and take away that burden and fear, not have individuals and families having to decide whether or not they can financially afford the life-sustaining equipment that they need.
But rehabilitation equipment and resources does go beyond just wheelchairs and ventilators. For instance, communication aids or environmental controls. Individuals with ALS may lose their ability to speak. That does not mean they do not have a voice, and it does not mean they have nothing to say. And we need to proactively be able to put in place the strategies and the equipment that still allows individuals to have that very important voice. Things like access to appropriate nutrition. The supplies that might be what we call consumables, things that you might go through such as specialized feeding, certain types of medications, certain equipment such as braces or bandages, where have you.
We often find ourselves having to negotiate and convince and cajole insurances why this is important, why this person deserves these services or these equipments.
It's also the health human resources. Many individuals would like to remain in their home, and remain in their home with dignity and quality of life, and functioning to do the things that they wish to do each day. That often requires some additional hands-on or in-home assistance, which unfortunately is not integrated as part of routine health services.
Jeremy Holden:
You're giving this address at the International Alliance of ALS/MDN Associations. Can you speak to the issue of kind of geographic disparities between the ability to access the equipment and tools that are needed for rehabilitation?
Colleen O'Connell:
I'm not so sure if it's a geographic issue as opposed to an attitudinal issue. We often think of diseases that don't have cures as this is it, get your affairs in order, and not recognize persons with having a form of disability as actually having the potential to have a quality of life.
So I wouldn't necessarily call this a geographic thing. There certainly may be health jurisdictions or even countries that have much better social supports and have much greater incorporation of rehabilitation services, evaluation, and equipment as routine and as available to all.
The important part around advocacy and potentially changing legislation or changing policy to incorporate rehabilitation as part of those essential health services. And that includes having access to your interdisciplinary teams, which for instance, in ALS, we know being involved with an interdisciplinary clinic actually improves survival, potentially even more so than some of the pharmacologic agents, and often for a much more financial reward in terms of efficiencies of your health dollars.
I think all individuals, no matter where they live, have a right to a quality of life. And that quality of life when you have a disability, will often necessitate certain equipment, services, home health resources that require this massive change in how we address the healthcare needs of persons with disability.
Jeremy Holden:
Moving into solutions or potential solutions, you mentioned this notion, this idea, this really powerful idea of the right to a quality of life. How do we get there?
Colleen O'Connell:
I think a lot of health systems are kind of still in that decades old model of we wait until you get sick, you get sick, you come to a hospital, you get some services, you go home. And that's really not how we live in society.
Right now, living with chronic disease is a fact of life that many, many people are dealing with, not just people with ALS. But as we live longer, often with comorbid conditions, meaning other health conditions, your needs will increase in terms of not just access to potentially medications, but access to help, access to equipment. And all of these things are required to help an individual remain at home, remain functioning in the community, remain being able to be a contributor to society and feel valued in their own autonomy.
But we have not gotten to that point where these types of services and equipment can be provided in a seamless manner, in a proactive way when they need them, where they need them. And in fact, if this were all able to be done, you could actually reduce some of the burdens on our really strapped and stressed healthcare systems. You keep people out of hospital, you keep people at work, you keep people with their families. And all of that, I think, improves not just the quality of life for the individuals and their families, but helps the socioeconomics.
It is going to take almost like a paradigm shift that requires people like your listeners, like ourselves at this conference, persons with that lived experience and their families and loved ones, advocacy groups strongly uniting together in this advocacy message of where resources need to be shifted. It's shifting to that primary care and shifting to that community and inclusive of a person's function, not just their morbidity or survival.
Jeremy Holden:
Well, Dr. O'Connell, this is fascinating. I've really enjoyed our conversation. And thank you so much for your time today.
Colleen O'Connell:
You're very welcome.
Jeremy Holden:
I want to thank my guest this week, Dr. Colleen O'Connell. Be sure to come back tomorrow for more insight into the discussions happening at the Allied Professionals Forum.
If you like this episode, share it with a friend. And while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners.
Our production partner for this series is Citizen Race Car. Post-production by Alex Brower. Production management by Gabriela Montekeen. Supervised by David Hoften. That's going to do it for today. Thanks for tuning in. We'll connect with you again soon.
Connecting ALS - The Right to Quality of Life (Completed 12/20/22)
Transcript by Rev.com
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