Managing Breathlessness when Cancer Is Advanced
The thing about advanced cancer is that many people experience some degree of breathlessness. This can be distressing for both the person and those around them, but there are things you can do to make it easier to breathe.
In this episode of The Thing About Advanced Cancer, Julie talks to Jane Phillips, Professor of Palliative Nursing from the University of Technology Sydney, about the different ways to manage shortness of breath.
Breathlessness is a complex symptom, Jane explains. Physical, psychological and environmental factors can all come into play, and interact with each other.
Jane points out that it’s important for your medical team to identify the cause of the breathlessness, as many of these causes are treatable – for example, fluid can be drained from the lungs (pleural tap), anaemia can be treated with blood transfusions, and chest infections can be treated with medicines.
People with cancer and their carers can hear some great tips for managing breathlessness at home, from positioning pillows and using a handheld fan to staying mobile and using mindfulness techniques. Jane also says that the carer can play an important role by providing reassurance when the person becomes breathless.
Tune in to this episode of The Thing About Advanced Cancer to hear Jane talk more about ways to manage breathlessness, as well as sources of support, what you should do if there’s a medical emergency, and much more.
You can also find other podcast episodes on advanced cancer here.
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
- Breathlessness – tips for managing breathlessness and information about procedures such as pleural taps
- 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: Living Well with Advanced Cancer – Dr Judith Lacey talks about how to keep yourself physically and emotionally well while living with advanced cancer
- Caring for Someone in Their Last Months – Prof Jane Phillips talks about the role of the carer at the end of life
- Avoiding Delirium when Cancer Is Advanced – We hear again from Prof Jane Phillips, this time explaining how important it is to recognise the early signs of delirium
- Positions to make it easier to breathe – diagrams from British Lung Foundation showing helpful positions, including sitting leaning over a pillow
- Managing your breathlessness – 10-minute video from Lung Foundation Australia
- 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
- 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
- Clinical guidance for responding to suffering – Cancer Australia guidelines for health professionals
EPISODE: Managing Breathlessness when Cancer Is Advanced
Julie: You’re listening to “Managing Breathlessness when Cancer Is Advanced”, an episode of “The Thing About Advanced Cancer”.
Prof Jane Phillips: I think the important thing is that we may not be able to stop the breathlessness. But what we need to do is make it manageable. And it’s really about getting the intervention in place much earlier so that you have some control and you feel confident about using those strategies, and you have a belief within that you can actually manage your breathlessness.
[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 many people experience some degree of breathlessness. This can be distressing for both the person and those around them. But are there things you can do to make it easier to breathe? To find out how to manage shortness of breath, we are 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.
Welcome, Jane. To begin, how common is this symptom of breathlessness for people with advanced cancer?
Jane: Breathlessness is quite common for people with advanced lung cancer and/or people who have deposits of cancer (secondary deposits) in their lung, and many of those people actually end up being breathless. Other people might get breathless as a result of having pleural effusions.
Julie: What does that mean?
Jane: Oh, when they’ve got fluid on their lung, because that actually makes it harder for their lung to expand and that makes the person breathless. And also too, if they’ve got fluid in their abdominal cavity, that can actually push on the lungs and actually make people feel quite breathless.
Julie: So, it’s not necessarily a symptom of the very end of life. It can be earlier?
Jane: Yes, particularly if you’ve got primary lung cancer – and many people with primary lung cancer might also have chronic obstructive pulmonary disease. So they’ve already got another sort of chronic lung condition, and breathlessness is very, very common with that.
Julie: So, for some people, breathlessness is just part of having advanced cancer?
Jane: We shouldn’t just think that because people are breathless and they’ve got advanced cancer, that there’s not something we can do. We ought to be treating. So for a number of people, that’s the first, most important rule.
Julie: And what are some examples of underlying causes of breathlessness that your medical team could treat?
Jane: The person may have developed, like I said earlier, a pulmonary effusion. They might have a pulmonary embolism, which is a clot in the lung. They may have a chest infection. They may have pneumonia. So we really need to make sure that they’re medically reviewed and if they’re going to be treated, that they actually get that treatment.
Jane: Okay, so rule one: check there’s no medical cause that you can treat to give the person comfort. Even though they’ve got advanced cancer, we would actively treat pneumonia or whatever.
Jane: Yeah. Depending on the stage and their overall condition and also too what their personal preferences are, but treating all of those various items, if at all possible, will actually make the person more comfortable
Julie: For people who are in the very late stages of advanced cancer, can breathlessness also be a symptom of nearing the end of life?
Jane: Regardless of their underlying cancer, what we do know is that people’s breathlessness does increase, and we think that’s actually related to muscle weakness, because when you’re breathing, there are a lot of muscles, and, you know, as you deteriorate, you have quite marked muscle wastage. So that’s important to remember – that breathlessness can often be part of the deterioration process.
Julie: If we’ve run through all the physical causes – and you’ve listed some of them already – but the person does still seem to be breathless, what can we do for the person?
Jane: The question is, if there’s no reversible causes, then how do we actually manage that? So, there may be a number of things that you can do. So, positioning the person, if they’re in bed, in a more upright manner may be important. Sometimes when people are really quite breathless, they find it quite helpful to sort of put their arms forward and perhaps have their arms on a pillow, on a table –
Julie: So you can sit leaning forward over a table with a pillow on it, and rest your head and arms on the pillow on the table. We’ll put a link to a picture of that position on our podcast page. Just go to cancercouncil.com.au/podcasts and click through to “The Thing About Advanced Cancer” and then click through to this episode on “Managing Breathlessness”. Jane, what else can help manage shortness of breath?
Jane: The use of the handheld fan, just having that sense of air blowing across your face, can actually give you a sense of relief.
Julie: An open window?
Jane: An open window, a fan in the room, a ceiling fan. The other thing is reassurance – you know, perhaps just being with the person, because when you’re breathless and if you feel like you can’t catch your breath, it’s quite distressing.
Julie: And I imagine being distressed can actually make the breathlessness worse. So, can there be an emotional, psychological side to chronic breathlessness, as well as the physical?
Jane: Yes. And I think there’s always multiple factors that feed into that breathlessness. And also too, just being concerned about being breathless can actually make you more breathless.
Julie: Of course, it’s natural to feel some concern about breathlessness. Bryce is living with advanced pancreatic cancer that has spread to his lungs. So, this is an issue he’s had to face.
Bryce: There’s one aspect of anxiety that’s always been there in my life, and that is the issue of losing your breath or not being able to breathe. The metastases, plus a little bit of pneumonia, means that I’ve lost about 20 per cent of my left lung, the base of the left lobe. And one of the really positive things about dealing with the palliative care team is they have assured me that there are ways of ensuring better breathing if that grows, if I can use the term. I find now, if I work in any physical way, that I can get breathless unless I pace myself. So, yeah, that’s a physical aspect that’s confronting.
Julie: Jane, I wanted to ask you about oxygen. I know you can get oxygen cylinders and masks to use at home if you’re not in hospital. Can using an oxygen mask help?
Jane: That’s a really great question you ask. I think we need to think of oxygen as a drug – even though you and I breathe it in as we’re speaking now – but in a hospital, where it’s administered, it’s a drug, so it should actually be prescribed by a doctor. And there are quite strict prescribing criteria around oxygen. And some of the studies that have been conducted have really demonstrated that it may not necessarily be beneficial. And so, I think the thing about home oxygen is you really need to make sure that you get good medical advice about it, because oxygen, if you need it as a drug, is really appropriate and helpful. And the only criteria for oxygen are really for people with chronic obstructive pulmonary disease, and they’ve got low blood gases.
Julie: What if the person wants home oxygen just for a sense of comfort? Is there any problem with that?
Jane: If I was your palliative care nurse, I would have a conversation with the family, and the considerations I would really be wanting to let them know are really around the evidence around oxygen. And also too, what effectively what happens is the person becomes tethered to a machine. So, if you end up using oxygen long term, if you have to, that’s important and it’s important that you use it. But if you can get away without needing it and using other things, you may, in actual fact have a better quality of life.
Julie: Some people with advanced cancer, are lifelong smokers. We understand that smoking can make breathlessness worse, but given that the cancer is already advanced, is it still worth trying to stop smoking?
Jane: Look, I think it’s always worth stopping smoking, but I wouldn’t make it a difficult scenario for the palliative care patient. However, there are options. People could think about converting to nicotine patches.
Julie: Yes. And you can talk to your doctors about that. Or you can call Quitline 13 78 48, that’s 13 78 48, if you’d like some support with quitting smoking at any time in your life.
Jane: Yeah, totally.
Julie: So it is a good time to think about giving up smoking. So, let’s turn now to the role of the carer. If you’re a family member or friend, what can you do to prevent breathlessness happening or at least help the person cope with it?
Jane: I think the important thing is that we may not be able to stop the breathlessness, but what we need to do is make it manageable. So, I think often what happens is that people stop mobilising –
Julie: – so they stop moving?
Jane: Yes, stop moving. But the more we move around – and we know earlier on in advanced disease, if we actually have patients assessed by occupational therapists or physiotherapists and they have walking aids, that helps people keep mobile, helps keep those quads (the big muscles in your legs) active and strong, then in actual fact, that does help with breathlessness.
Julie: The truth is, moving, no matter what point in life, is a terribly good idea.
Jane: Totally good idea. And I think, you know, in palliative care, we do encourage our patients to be mobile. And that’s why if somebody suggests that you see a physiotherapist and/or an occupational therapist, it’s a really great suggestion, particularly if you are starting to have some symptoms of breathlessness. Because if we can actually keep you mobile, it will help your breathlessness, you have a better quality of life and, you know, you’ll be able to enjoy life much more.
Julie: And you mentioned earlier, you know, opening windows, having a small fan and perhaps even having smaller meals so that you’re not overloading your tummy and so on, even moving pillows around – all of those behaviours from a carer are demonstrating empathy and care, and that can be just be a reassuring and comforting thing?
Jane: Yes. And I think being with the person, as hard as it is to sit with someone who’s actually really quite breathless, to actually not feed into the anxiety, to be very, very calm and to be really, really reassuring. Often people have breathlessness rituals that actually help them sort of calm down.
Julie: Can you give me an example?
Jane: I know at the Breathlessness Clinic in the UK, they actually give people just a little sort of, almost like a positive affirmation to read, a card, so it’s something that they can have in their hand to think about how they can actually just relax those muscles.
Julie: And I guess you could ask to see a psychologist who can teach you relaxation exercises to help you manage your breathlessness. I think the sense I’m getting from you is that at any stage it can be worth getting in touch with your team, your multidisciplinary team, because allied health professionals and nurses often have extra ideas.
Jane: Yes, they do. And once again, it’s really about getting the intervention in place much earlier so that you have some control and you feel confident about using those strategies, and you have a belief within that you can actually manage your breathlessness.
Julie: So, if you’re the carer of someone with advanced cancer, and if that person does get very breathless and panicked, do you just ring 000?
Jane: Totally. Because I think sometimes, you know, there may be an acute underlying reason why they’re actually breathless. It may be that it’s just too distressing to keep that person at home. And, you know, it’s distressing for caregivers – having someone extremely breathless in front of you is actually very, very distressing.
Julie: Look, just before I let you go – ideally, if someone has advanced cancer, you’ve already established a relationship with a palliative care team and done some forward planning. But if that hasn’t occurred and you’re listening to this, where do you go for help? What’s the first knock on the door to get help for the person who’s breathless?
Jane: Well, I think I would be having a conversation with my treating team. And so your GP really needs to be kept in the loop, because I always think of the general practitioner as the conductor of the health care orchestra. And if you’re wanting to spend more days at home, then you absolutely need a doctor in the community, so you need your GP. So, I’d be reaching out to my GP. I would be phoning, you could phone the Cancer Council. You could actually speak to your cancer care team. And there’s also another website funded by the Australian Government, which is called CareSearch, which is the Palliative Care Knowledge Network, and it’s got some great patient information around specific symptoms, where to contact services and where the list of palliative care services are.
Julie: And we’ll put links to those great resources on our podcast page at cancercouncil.com.au/podcasts. Just click through to the “The Thing About Advanced Cancer” and then click through to this episode “Managing Breathlessness When Cancer is Advanced”.
And that’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Jane and Bryce for sharing their 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 episode, 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 delirium in advanced cancer. In that episode, I talk again to Professor Jane Phillips about how important it is to recognise the early signs of delirium.
Jane: If you are 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. So, you really need to get the attention of the health care team and say this is actually not normal behaviour.
Julie: You can find that episode “Avoiding Delirium when Cancer Is Advanced” on our website at cancercouncil.com.au/podcasts. Just click through to “The Thing About Advanced Cancer”.
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.
I’m Julie McCrossin, and you’ve been listening to “The Thing about Advanced Cancer”, a podcast from Cancer Council NSW.