Avoiding Delirium when Cancer Is Advanced
In this episode, the thing about advanced cancer is that it can lead to bouts of confusion known as delirium. But is there any way to avoid delirium? And if it does occur, how can it be managed?
Julie sits down with Jane Phillips, Professor of Palliative Nursing from the University of Technology in Sydney, to tackle these questions and many others.
The word “delirium” can be confronting, especially if you’ve only recently been diagnosed with advanced cancer.
But what exactly do we mean by delirium?
Jane and Julie talk about some of the characteristics of delirium, and how common it is in people with advanced cancer. They also look at possible causes, how it can be treated and managed, and the important role that carers can play in recognising the early signs.
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link to it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- All our advanced cancer resources – links to Cancer Council’s resources for people affected by advanced cancer
- Easy-to-read information about cancer – cancer types, treatments and issues
- Cancer Council 13 11 20 Information and Support service – call 13 11 20 Mon–Fri, 9am–5pm, to talk confidentially to a health professional about anything to do with cancer
- Cancer Council Online Community – a supportive online community for people affected by cancer
- Support for people coping with cancer – support online, in person and by phone
- Legal and financial assistance – practical advice and support during and after treatment
- Podcast: Treatment Options for Advanced Cancer – Dr Craig Gedye discusses the latest treatments for advanced cancer and how to decide when to stop cancer treatment
- Podcast: Living Well with Advanced Cancer – Dr Judith Lacey talks about how to keep yourself physically and emotionally well while living with advanced cancer
- Podcast: The Role of Hope and Purpose in Advanced Cancer – Julie McCrossin asks Dr Megan Best about sources of strength when things are really tough
- Caring for Someone in Their Last Months – Prof Jane Phillips talks about the caring role at the end of life
- Palliative Care Australia – national peak body for palliative care, with information, stories and directory of services
- Carers Australia – national body representing Australia’s carers; help for referrals, counselling and support
- Carer Gateway – practical information and resources for carers, and links to support services in your area
- CareSearch – palliative care information, services and evidence for patients, carers and families
- Young Carers – supports young people (25 and under) who care for a family member or friend
- Carer Gateway Counselling Service 1800 422 737 – free online and telephone counselling for carers available weekdays 8am–6pm
- Beyond Blue – 24-hour telephone counselling service
- Lifeline 13 11 14 – call 13 11 14 for 24-hour crisis support from a trained health professional
- Advance Care Planning Australia – free national advisory service for the public and health professionals and online fact sheets and forms to help with advance care planning
- Clinical guidance for responding to suffering – Cancer Australia guidelines for health professionals
Avoiding Delirium when Cancer Is Advanced
[EPISODE ID] You’re listening to “Avoiding Delirium when Cancer Is Advanced”, an episode of “The Thing About Advanced Cancer’’.
Prof Jane Phillips: We need to hear from families that this is actually really an acute event. This person wasn’t like this 24, 36 hours ago. Something has actually happened. So you really need to get the attention of the health care team and say this is actually not normal behaviour.
[woman] The Thing About Advanced Cancer
[man] a podcast from Cancer Council NSW
[woman] information and insights
[man] for challenging times.
Julie: Hello, I’m Julie McCrossin, and today the thing about advanced cancer is that sometimes it can lead to episodes of confusion known as delirium. This can be very upsetting for everybody involved. But can delirium be treated, and better still, is there anything we can do to prevent it? To find out, we’re talking to Jane Phillips, Professor of Palliative Nursing from the University of Technology in Sydney.
Just to be clear, this podcast contains general information only. So, we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.
Jane: Hi, Julie.
Julie: So, Jane, what is delirium? For the completely uninitiated, who’ve never heard of it and never seen it, how would you describe it?
Jane: I suspect once I describe it, many of your listeners will have actually seen it. And it’s really quite common. So delirium actually really refers to fluctuating levels of consciousness, attention – that’s probably the most important thing, cognition. It’s fluctuating. It’s quite common in the elderly. It’s very common in intensive care units. And it’s very common in palliative care patients.
Julie: Is it very common in advanced cancer, people with advanced cancer?
Jane: Yes. We know from our palliative care studies that it is actually common in that population. And the vast majority of people referred to palliative care, even today, have advanced cancer.
Julie: So, you’ve mentioned cognition. People often talk about confusion, if we could walk together into a room where there’s someone with delirium, what are some of the things I would notice that might make you think, golly, this person might be experiencing delirium?
Jane: People often get really quite mixed up around time. They can often seem quite confused.
Julie: An example might be that it’s like they don’t know where they are? (Jane: totally.) In a colloquial way of saying it might be the person is just not themself?
Jane: Totally, Julie. If you’re a carer or visiting someone you know really well, you’re in a really good situation to identify changes in their cognition. And it’s important that you actually report those changes to the health care team because you will notice those really subtle changes.
Julie: So it might be revealed to you by something they say that just doesn’t seem quite right, there’s something a little bit odd?
Jane: Yes, exactly. Last year, my 85-year-old father ended up having an acute admission. And by the time I got to WA, when I went in to speak to him, he was really very orientated to time and place, knew me, knew what actually had happened. But then as the conversation went on, he just mentioned that he had spent the night before in a tent. So, that to me was like a real warning sign that potentially he had experienced some sort of delirium or there was some altered levels of consciousness around what actually, or perceptions of what had actually, really happened.
Julie: We often think of someone with delirium as being very agitated, but it can be more subtle than that. Are there different types of delirium?
Jane: There are three different types of delirium. So, there is what we call hypoactive delirium. So, that is actually where the person’s actually really very withdrawn. So often as a health professional, you may actually think that’s their normal state and/or that, you know, it’s just because they’re really unwell. But family will often come in and say, “Oh, my goodness, you know, like, I can’t believe Jimmy. You know, he never stops talking.” And yet here’s this man that’s really quite withdrawn and not really said very much to you and quite passive. And then there is hyperactive delirium. So that’s probably the delirium that doctors and nurses and families often really remember because the person is actually very restless and can often be quite aggressive, they’re quite agitated. They’ll be trying to get in and out of bed. They’ll be plucking at their bedclothes. They may hit out at staff when they’re trying to do something, because they’re actually very fearful, and what they’re observing is, you know, they’re actually seeing someone who’s probably trying to harm them as opposed to help them. And then there is really a combination of periods of the person actually being very withdrawn and then periods of aggression. And we call that mixed delirium.
Julie: So, a person with delirium may be very restless, but they may also be unusually quiet. And I guess it’s really family or close friends who would recognise what’s out of the ordinary for that person. Should they let someone know?
Jane: It would be great for families to be able to say that to health professionals because I think often what happens is – it’s really quite a common experience for unwell older people, and often health professionals could actually think this is related to dementia or they’ve got some sort of chronic cognitive change. But in actual fact, we need to hear from families that this is actually really an acute event. This person was not like this 24, 36 hours ago, something has actually happened. So you really need to get the attention of the health care team and say this is actually not normal behaviour.
Julie: And of course, here we’re talking about people with advanced cancer, so they could be in their 20s, 30s, 40s. And is delirium inevitable as part of the progression of cancer or not necessarily?
Jane: It’s not necessarily inevitable, but it’s probably, could be potentially, experienced by a number of people because, you know, when we’re unwell, the way our body’s balanced is very finely tuned.
Julie: So, what would be some of the common triggers for an episode of delirium?
Jane: So, an infection – quite often people would have a nasty infection. If people actually get dehydrated.
Julie: It could be after surgery, for example.
Jane: Yes, totally after surgery. So, a combination of different drugs. The challenge with delirium is that we know a number of factors that seem to precipitate delirium, but we don’t really understand fully the underlying mechanisms. There’s so many different potential causes for delirium.
Julie: And is it important to say that in many cases it can be reversed? It isn’t necessarily going to stay?
Jane: Yeah, because the important thing about delirium is that it’s transient and it fluctuates. But obviously, as you approach the end of life, some people unfortunately will die with delirium. But what we would like to think – and my team are working really hard on this – is to ensure that we recognise delirium much earlier, that we try and prevent it and that we manage it effectively.
Julie: So, if you’re a family member or friend, you can help by telling the health care team if you notice a change in the person. But is there anything else you can do?
Jane: The things that we can do that make a really big difference are: Making sure that if they wear a hearing aid, that the person’s actually got the hearing aid in, that the battery is working, that they can actually hear you. If they wear glasses, make sure that they’ve got their glasses on and the glasses are clean and that they can actually see you. Also, for patients, being in a room with a clock, reminding people of what the day and time is, because when you’re actually unwell, often the days can run together, so just even reminding, you know, “Hi, I’m Jane and today’s Wednesday, the 8th of May”.
Julie: You know, we’re talking about people with advanced cancer, and external events like what day it is, the fact that an election might be coming up or a new royal baby has been born or those sorts of external things, I think, my own sense is that if the person is responsive and interested, you go on as if life could be going on for a very long time, you still take an active interest in the world around you, the world still matters – and that keeps you orientated.
Jane: Totally, and often family and friends are people’s pathway or access to the external world. So, reminding people of those events is really, really important. And they’re the things that you can weave into general conversations. And I think the other thing – most people have iPads (or phones) and so often people really enjoy a conversation that also includes photos; they may be photos from the past or, you know, holiday places you visited before. And I think they’re the things that we can sort of engage people in, in a visual conversation that’s actually authentic and is meaningful for the person, and try and keep them in the present.
Julie: You mentioned earlier that dehydration can be one of the causes of delirium. So, should you also encourage the person to keep having sips of water?
Jane: Even though people are actually often not wanting to eat and drink as much, it’s great if we can encourage them to drink as much as they can, and if they’re in hospital, often people just actually can’t reach the glass. They can’t lift up the jug and, you know, people may have forgotten to offer it or when it was offered, they may not have been ready to do it.
Julie: And are there other things that can reduce the risk of delirium?
Jane: It’s really important that we keep mobile – so, sitting out of bed to eat meals, walking to the toilet, maintaining our mobility, is really important. And even today, if you go into intensive care units, whereas once we would have kept people in beds, on ventilators, you will actually often see people being woken up and actually enabled to be able to sit out of bed. And there’s one other thing that’s really important in terms of delirium, and that’s actually good sleep. You know, if you think about all of the things I’ve just described, this is a group of patients that often those things are all disrupted. You know, often they’ve had poor sleep because they might have been in hospital. Hospitals are noisy places, but we can actually give people earplugs, we can actually make sure that the lighting is appropriate, or the person actually may have had an uncomfortable night where they’ve not had as good a sleep as they would like.
Julie: And also I was thinking – day and night. You’ve mentioned good sleep hygiene when you’re in intensive care and we’re talking here about people’s advanced cancer, day and night can be similar even in a home. So, just maintaining that basic orientation to day or night can make a huge difference, I think.
Jane: Most definitely, and I think the way in which we organise our hospitals and the units within our inpatient facilities, you know, there’s much more attention being paid to the structure of wards and recognising that people actually need good sleep. And, you know, whereas once hospital wards always had clocks in the room, you know, they’re now making a comeback because people actually really need big clock faces to be orientated.
Julie: So, if you’re the carer of someone with advanced cancer, there is actually quite a lot you can do to reduce the risk of delirium.
Jane: So – good sleep hygiene; making sure that people sit out of bed, mobilised as much as they can; being mindful of keeping drinking and eating; and glasses and hearing aid; and, as you said, engaging people in the external world. But it’s also important to remember for caregivers, even though you may do all of those preventative items, people may still get delirium. And obviously the team, including the family, we will need to manage that as best we can.
Julie: So, if you do notice signs of delirium, it’s important to tell the treatment team so they can look for and treat any underlying causes. Is there anything else they can do?
Jane: I’ll go back to the example with my dad. You know, he had exemplary medical and nursing care, and it was a weekend and I just said, actually, I’m just concerned. My father is a little confused. You know, he’s oriented to time and place, he’s got good attention, but that confusion around the tent – that’s all I had to say and within probably an hour, someone had done a cognitive assessment, he had a sign on his orthopaedic frame telling him where he was and what the time was, and they were sort of pointing out to the clock – you know, it was absolutely fantastic.
Julie: You must have been excited, I mean, just to see good nursing. (Jane: Totally, totally) Just again, finally, to look at delirium from the carer’s point of view, just emotionally, what do you do if you’re feeling just upset?
Jane: Reach out and speak to someone. And one of my colleagues who works a lot in the bereavement space and on our website really speaks a lot about ambiguous loss. And that in some respects is what you probably experience.
Julie: What does that mean, ambiguous loss?
Jane: Well, she’s probably better placed to explain it than me, but it’s sort of a loss of the way in which you’d known the person, and it’s a loss that you hadn’t been prepared for or hadn’t actually really anticipated. And that’s actually a really very normal feeling, and particularly if you don’t really understand what’s actually happening to the person, and if the team haven’t really prepared you – that sometimes it’s actually family who pick up the person has delirium or the subtle signs of delirium, before their health care team.
Julie: Look, thank you. And I guess part of prevention or even managing is if as a family member, a carer, you notice even small things that are a little bit unusual, let your care team know because you might be able to prevent the person getting into really extensive delirium.
Jane: Yeah, totally.
Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Jane for sharing her insights. And we’d also like to thank the Dry July Foundation for their generous support of this advanced cancer podcast series.
If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast, we’d love to hear from you, so leave us a review on Apple Podcasts or on our website. If you’d like to subscribe for more free episodes of the show, you can do it in Apple Podcasts or your favourite podcasting app.
If you found this episode helpful, you might want to listen to our podcast on the latest treatments for advanced cancer. In that episode, I talked to medical oncologist Dr Craig Gedye about how to decide on the best treatment in your situation.
Craig: The anti-cancer treatment is just one hand. The other hand is always out, reaching out to you, trying to solve your problems. Even if we ran out of ways of treating the cancer, we never stop looking after people.
Julie: You can find that episode “Treatment Options for Advanced Cancer” on our website at cancercouncil.com.au/podcasts – just click through to “The Thing About Advanced Cancer”.
Julie: The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals.
Julie: I’m Julie McCrossin and you’ve been listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW.