Continuum Audio Neuropalliative Care in Neuromuscular Disorders With Dr. David J. Oliver
Careful assessment and individualized care, provided by a skilled multidisciplinary care team, are emphasized in the holistic approach to neuropalliative care, which considers physical, psychological, social, spiritual, and existential aspects for people with neuromuscular diseases.
In this episode, Gordon Smith, MD, FAAN, speaks with David J. Oliver, PhD, FRCP, FRCGP, FEAN, author of the article "Neuropalliative Care in Neuromuscular Disorders" in the Continuum® December 2025 Neuropalliative Care issue.
Dr. Smith is a Continuum® Audio interviewer and a professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia.
Dr. Oliver is an honorary professor of Tizard Centre at the University of Kent in Canterbury, United Kingdom.
Additional Resources
Read the article: Neuropalliative Care in Neuromuscular Disorders
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Full episode transcript available here
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.
Dr Smith: Hello, this is Dr Gordon Smith. Today I've got the great pleasure of interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. David, welcome to the Continuum podcast, and please introduce yourself to our audience.
Dr Oliver: Thank you. It's a pleasure and a privilege to be here. I'm a retired consultant in palliative medicine in the UK. I worked at the Wisdom Hospice in Rochester for over thirty years, and I'm also an honorary professor at the University of Kent in Canterbury in the UK. I've had a long interest in palliative care in neurological diseases. Hopefully we can talk about a bit later.
Dr Smith: I really look forward to learning a little bit more about your path and experiences. But I wonder if, before we get into the meat of neuropalliative care with a focus on neuromuscular, if maybe you can kind of set the stage by just defining palliative care. I mean, my experience is that people think of this in different ways, and a lot of folks think- hear palliative care, and they immediately go to end-of-life care or comfort care. So, what- how should we think about maybe the discipline of palliative care or neuropalliative care?
Dr Oliver: I see palliative care as very much responding to people's needs, whether that's physical needs, psychological needs, social or spiritual or existential. So, it can be much earlier in the disease progression. And I think particularly for neurological diseases, early involvement may be very important.
Dr Smith: That was actually going to be my first substantive question, really, was when to begin the conversation and what does that look like and how does it evolve over time. You have a really great figure in the article that kind of emphasizes the various stages within a patient's journey that, you know, palliative care can become involved. But I wonder if you could use ALS as a good example and describe what that looks like from when a patient is first diagnosed with ALS through their course?
Dr Oliver: I think particularly in ALS at the beginning, soon after diagnosis, someone may have a lot of distress and a lot of questions that they need answering. This is a disease they've not had any contact with before. And they don't understand what's going on, they don't understand the disease. So, there may be a great need to have the opportunity to talk about the disease, what may happen, what is happening, how it's going to affect them and their family. As think time goes on, there may be later they develop swallowing problems, and that will need to be talking about a feeding tube and gastrostomy. And again, there may be a lot of issues for the person and their family. As they deteriorate, they may have respiratory problems and need to have discussion about ventilatory support, either by PAP, noninvasive ventilation, or even tracheostomy. And again, I think that's a big issue that needs wide discussion. And then it may be at the final few months of the disease, where they are deteriorating, that they may have increased needs, and their families may have those needs after the death. And I think often families bereaved from someone with a neurological disease such as ALS need a great deal of support, having many mixed emotions. There may be a feeling of relief that they're not involved in that caring, but then a feeling of guilt that they shouldn't be having those feelings. So, I think that can happen over a period of… what with ALS it may be two, three, four years, but it may be similar changes over time with any patient with a neurological disease. It may be ten or fifteen years with Parkinson's or five to ten years with a progressive supranuclear palsy, but there'll be this similar need to look at palliative care during their disease progression.
Dr Smith: So, I'm curious at the time of diagnosis of ALS, how far out in the future do you provide information? So a specific question would be, do you talk about end-of-life management? In my experience, ALS patients are sometimes interested in knowing about that. Or do you really focus on what's in front of you in the next three to six months, for instance?
Dr Oliver: I think it's both. Obviously, we need to talk about the next three to six months, but often giving patients the opportunity to talk about what's going to happen in the future, what may happen at the end of life, I think is important. And I think a disease like ALS, if they look it up on the Internet, they may have a lot of very distressing entries there. There's a lot about how distressing dying with ALS is. And actually confront those and discuss those issues early is really important.
Dr Smith: So of course, the other thing that comes up immediately with an ALS diagnosis---or, for that matter, with any other neurodegenerative problem---is prognosis. Do you have guidance and how our listeners who are giving a diagnosis of ALS or similar disorder should approach the prognostication discussion?
Dr Oliver: It's often very difficult. Certainly in the UK, people may have- be a year into their disease from their first symptoms before they're diagnosed, and I've seen figures, that's similar across the world. So, people may be actually quite way through their disease progression, but I do think we have to remember that the figures show that at five years, 25% of people are still alive, and 5 to 10% are still alive at ten years. We mustn't say you are going to die in the next two or three years, because that may not be so. And I think to have the vagueness but also the opportunity to talk, that we are talking of a deterioration over time and we don't know how that will be for you. I always stress how individual I think ALS is for patients.
Dr Smith: One of the other concepts that is familiar with anyone who does ALS and clearly comes through in your article---which is really outstanding, by the way. So, thank you and congratulations for that---is the importance of multidisciplinary teams. Can you talk a little bit about how neuropalliative care sits within a multidisciplinary care model?
Dr Oliver: I think the care should be multidisciplinary. Certainly in the UK, we recommended multidisciplinary team care for ALS in particular, from the time of diagnosis. And I think palliative care should be part of that multidisciplinary team. It may be a member of the team who has that palliative care experience or someone with specialist experience. Because I think the important thing is that everyone caring for someone with ALS or other neuromuscular diseases should be providing palliative care to some extent: listening to people, discussing their goals, managing their symptoms. And a specialist may only be needed if those are more complicated or particularly difficult. So, I think it is that the team needs to work together to support people and their families. So, looking at the physical aspects where the physiotherapist or occupational therapist may be very important, the psychologicals are a counsellor or psychologist. The social aspects, most of our patients are part of wider families, and we need to be looking at supporting their carers and within their family as well as the person. And so that may involve social work and other professionals. And the spiritual, the why me, their fears about the future, may involve a spiritual counsellor or a chaplain or, if appropriate, a religious leader appropriate to that- for that person. So, I think it is that wider care provided by the team.
Dr Smith: I'm just reflecting on, again, your earlier answers about the Continuum of neuropalliative care. Knowing your patient is super valuable here. So, having come to know someone through their disease course must pay dividends as you get to some of these harder questions that come up later during the disease progression.
Dr Oliver: I think that's the very important use of palliative care from early on in the diagnosis. It's much easier to talk about, perhaps, the existential fears of someone while they can still talk openly. To do that through a communication aid can be very difficult. To talk about someone's fear of death through a communication aid is really very, very difficult. The multidisciplinary team, I think, works well if all the members are talking together. So that perhaps the speech therapist has been to see someone and has noticed their breathing is more difficult, comes back and talks to the doctor and the physiotherapist. The social worker notices the speech is more difficult and comes back and speaks to the speech therapist. So, I think that sort of team where people are working very closely together can really optimize the care. And as you said, knowing the person, and for them to know you and to trust you, I think that's important. Those first times that people meet is so important in establishing trust. And if you only meet people when they're very disabled and perhaps not able to communicate very easily, that's really difficult.
Dr Smith: I think you're reading my mind, actually, because I was really interested in talking about communication. And you mentioned a few times in your article about voice banking, which is likely to be a new concept for many of our listeners. And I would imagine the spectrum of tools that are becoming available for augmented communication for patients who have ALS or other disorders that impair speech must be impressive. I wonder if you could give us an update on what the state of the art is in terms of approaching communication.
Dr Oliver: Well, I think we all remember Stephen Hawking, the professor from Cambridge, who had a very robotic voice which wasn't his. Now people may have their own voice on a communication aid. I think the use of whether it's a mobile phone or iPad, other computer systems, can actually turn what someone types into their own voice. And voice banking is much easier than it used to be. Only a few years ago, someone would have to read for an hour or two hours so the computer could pick up all the different aspects of their voice. Now it's a few minutes. And it has been even- I've known that people have taken their answer phone off a telephone and used that to produce a voice that is very, very near to the person. So that when someone does type out, the voice that comes out will be very similar to their own. I remember one video of someone who'd done this and they called their dog, and the dog just jumped into the air when he suddenly heard his master's voice for the first time in several months. So, I think it's very dramatic and very helpful for the person, who no longer feels a robot, but also for their family that can recognize their father, their husband, their wife's speech again.
Dr Smith: Very humanizing, isn't it?
Dr Oliver: There is a stigma of having the robotic voice. And if we can remove that stigma and someone can feel more normal, that would be our aim.
Dr Smith: As you've alluded to, and for the large majority---really all of our ALS patients, barring something unexpected---we end up in preparing for death and preparing for end of life. I wonder what advice you have in that process, managing fear of death and working with our patients as they approach the end of their journey.
Dr Oliver: I think the most important thing is listening and trying to find what their particular concerns are. And as I said earlier, they may have understood from what they've read in books or the Internet that the death from ALS is very distressing. However, I think we can say there are several studies now from various countries where people have looked at what happens at the end of life for people with ALS. Choking to death, being very distressed, are very, very rare if the symptoms are managed effectively beforehand, preparations are made so that perhaps medication can be given quickly if someone does develop some distress so that it doesn't become a distressing crisis. So, I think we can say that distress at the end of life with ALS is unusual, and probably no different to any other disease group. It's important to make sure that people realize that with good symptom control, with good palliative care, there is a very small risk of choking or of great distress at the end of life.
Dr Smith: Now, I would imagine many patients have multiple different types of fear of death; one, process, what's the pain and experience going to be like? But there's also being dead, you know, fear of the end of life. And then this gets into comments you made earlier about spirituality and psychology. How do you- what's your experience in handling that? Because that's a harder problem, it seems, to really provide concrete advice about.
Dr Oliver: Yeah. And so, I think it's always important to know when someone says they're frightened of the future, to check whether it is the dying process or after death. I've got no answer for what's going to happen afterwards, but I can listen to what someone may have in their past, their concerns, their experience. You know, is their experience of someone dying their memories of someone screaming in pain in an upstairs bedroom while they were a child? Was their grandfather died? Trying to find out what particular things may be really a problem to them and that we can try and address. But others, we can't answer what's going to happen after death. If someone is particularly wanting to look at that, I think that may be involving a spiritual advisor or their local spiritual/religious leader. But often I think it's just listening and understanding where they are.
Dr Smith: So, you brought up bereavement earlier and you discussed it in the article. In my experience is that oftentimes the families are very, very impacted by the journey of ALS. And while ALS patients are remarkably resilient, it's a huge burden on family, loved ones, and their community. Can you talk a bit about the role of palliative care in the bereavement process, maybe preparing for bereavement and then after the loss of their loved one?
Dr Oliver: Throughout the disease progression, we need to be supporting the carers as much as we are the patient. They are very much involved. As you said, the burden of care may be quite profound and very difficult for them. So, it's listening, supporting them, finding out what their particular concerns are. Are they frightened about what's going to happen at the end of life as well? Are they concerned of how they're going to cope or how the person's going to cope? And then after the death, it's allowing them to talk about what's happened and how they are feeling now, cause I think having had that enormous input in care, then suddenly everything stops. And also, the support systems they've had for perhaps months of the carers coming in, the doctor, the nurse, the physiotherapist, everyone coming in, they all stop coming. So, their whole social system suddenly stops and becomes much reduced. And I'm afraid certainly in the UK if someone is bereaved, they may not have the contact with their friends and family because they're afraid to come and see them. So, they may become quite isolated and reduced in what they can do. So, I think it's allowing them to discuss what has happened. And I think that's as important sometimes for members of the multidisciplinary team, because we as doctors, nurses and the wider team will also have some aspects of bereavement as we face not seeing that person who we've looked after for many years and perhaps in quite an intensive way. So, we need to be looking at how we support ourselves. And I think that's another important role of the multidisciplinary team. I always remember in our team, sometimes I would say, I find this person really difficult to cope with. And the rest of the people around the team would go have a sigh of relief because they felt the same, but they didn't like to say. And once we could talk about it, we could support each other and work out what we could do to help us help the patient in the most effective way.
Dr Smith: Well, David, I think that's a great point to end on. I think you've done a really great job of capturing why someone would want to be a palliative care specialist or be involved in palliative care, because one of the themes throughout this conversation is the very significant personal and care impact that you have on patients and families. So, I really appreciate your sharing your wisdom. I really encourage all of our listeners to check out the article, it's really outstanding. I wonder if maybe you might just briefly tell us a little bit about how you got into this space? It's obviously one for which you have a great deal of passion and wisdom. How did you end up where you are?
Dr Oliver: I became interested in palliative care as a medical student, and actually I trained as a family doctor, but I went to Saint Christopher's Hospice following that. I had actually had contact with them while I was a medical student, so I worked Saint Christopher's Hospice in South London when Dame Cecily Saunders was still working there. And at that time Christopher's had sixty-two beds, and at least eight of those beds were reserved for people with ALS or other neurological diseases. And I became very involved in one or two patients and their care. And Dame Sicily Saunders asked me to write something on ALS for their bookshelf that they had on the education area. So, I wrote, I think, four drafts. I went from sort of C minus to just about passable on the fourth draft. And that became my big interest in particularly ALS, and as time went on, in other neurological diseases. When I went to the Wisdom Hospice as a consultant, I was very keen to carry on looking after people with ALS, and we involved ourselves with other neurological patients. That's how I got started. Having that interest, listening to patients, documenting what we did became important as a way of showing how palliative care could have a big role in neurological disease. And over the years, I've been pressing again and again for the early involvement of palliative care in neurological diseases. And I think that is so important so that there can be a proper holistic assessment of people, that they can build up the trust in their carers and in the multidisciplinary team so that they can live as positively as possible. And as a result of that, that their death will be without distress and with their family with them.
Dr Smith: Well, David, you've convinced and inspired me, and I'm confident you have our listeners as well. Thank you so much for a really informative, enjoyable, inspiring conversation.
Dr Oliver: Thank you for inviting me.
Dr Smith: Again, today I've been interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thanks to our listeners for joining us today.
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