Ep 11 - Breathlessness

Often patients will experience breathlessness; we give you tips and techniques for dealing with breathlessness, so you are prepared.
An interview with Christina Bowen, an Occupational Therapist and Palliative Care Coordinator with a wealth of experience in managing breathlessness. 

Written resources to support this podcast can be found here 

Find out more about Otago Community Hospice via our website, facebook or instagram 

Email us:  endinglifewell@otagohospice.co.nz 

Transcript

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 Ep 11: Breathlessness

 Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a  loved family member or friend in their last days, weeks or months of life. 

 Our episode today is Breathlessness

 Denise
Hi, I’m Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today I'll be talking with Christina Bowen, an Occupational Therapist and Palliative Care Coordinator with a lot of experience in managing breathlessness. Hi Christina.

Christina
Hi, Denise.

Denise
Hey, it's nice to have you join us today, Christina. We're going to talk a bit about breathlessness. This is something that really affects lots of people towards the end of life, those who've got lung conditions, but also other people as well. Can you perhaps expand that a little bit?

Christina
It's obviously very, very common for people with a respiratory illness like a COPD illness, and also people with lung cancers. But in general, with all our patients who become increasingly fatigued as their illnesses progress, they also find with that with increasing fatigue, they become more and more breathless. Because their bodies are getting so much more tired, it takes more effort to do the smallest of things such as breathing.

Denise
Actually, that's a really good description, isn't it, because we think of breathlessness as being one as a problem with the lungs. But as you say, when the energy is depleted, all of that energy is used for so many other things, isn't it?

Christina
Yeah, and your body's just working so much harder than it used to when it was well. 

Denise
So is this breathlessness similar? Or are they a little bit different?

Christina
Very similar for both people. For people that have had a respiratory illness, obviously, they've been having to manage and deal with their breathlessness for a far longer period of time. And it's probably one of the most frightening and distressing symptoms that palliative care workers need to support and help people learn to manage. 

 Denise
I meet a lady the other day, Christina, who said to me ‘People wonder why I get anxious about being short of breath’. She said ‘They just don't understand’. And I said ‘Get them to breathe through a straw for a couple of minutes and see how they feel then’. She liked that idea and she thought she might give it a try.

Christina
Yeah, very effective, especially if you get them to sit and stand, sit and stand, and after a minute of that, they'll really understand where she's coming from.

Denise
Yeah. We take breathing for granted, don't we?

Christina
We do – it's an automatic response, like blinking, and it's only when it's an issue for us that we then think about it. And so for somebody who struggles with getting good quality breaths, it's all they can think about because it is so frightening. And it's really frightening for the person experiencing it, but also very distressing and frightening for family carers or friends or whomever is around supporting you to also watch because that sort of feeling of helplessness. And what do I do? How do I help somebody who's struggling like they are? 

Denise
Yeah. So we're going to talk about some of the tricks or tips for managing that, Christina, and so some of those are for the carers as well aren't they, not just the patients. 

So starting with the patients, and maybe let's start with the people who've had a long standing condition. Where do you start if you're going in to talk with them about their breathlessness? Where do start with somebody who's already had a condition that they've been working with?

Christina
If they're a patient that's gone through the respiratory department, I always see what they already know, because I think I don't want to ever tell anyone how to suck eggs – and it's really good to see where people's strengths lie with how they've already been managing their breathlessness. And then from there, it's around sort of fine tuning and tweaking what they may already know. And then for other people I think it's always a good starting point is ‘What do you already know?’ and then we can just build on it. 

Denise
So often for those people, they're already using a mixture perhaps of medications and other sorts of practical hands-on techniques as well. If somebody hasn't been to the respiratory clinic, if this is due to their body failing, where do you start with those people?

Christina
Still the same place Denise, because we’re clever adaptors, and so a lot of people would have nutted out a few kinds of things that work for them such as positioning, and knowing that if they open a window that they do feel more comfortable having air come across their face – things like that. 

So always check out, no matter what, but then it’s working through all those things that you just mentioned before Denise, around what medications that somebody's on, and then just reviewing how they are using those medications, because some people may not be using them the best way possible to have good effects from what they've been prescribed. And that could be whether it's bronchial dilators, which a lot of people would have heard of, like the blue inhalers and things like that, and making sure that people are using spacers and making sure they're using them effectively, that they Christina cont… keep them clean – all those sorts of things right through to the use of opioid medicines. And seeing how they're using those whether they're using them pre-emptively before doing activities that will trigger off their breathlessness, and then for recovery with exacerbation of breathlessness. Benzodiazepines are another common one as well and making sure they're using those effectively to manage the anxiety associated with that sense of air hunger.

Denise
So Christina, it would be really good talking about some of the non-drug methods, for managing breathlessness and there's quite a few tips and tricks, isn't there? 

Christina
I think the first thing to think about is somebody who has been struggling with their breathing for a long period of time. We can actually form quite habitual behaviours around our breathing and so it becomes more of a habit. And so we need to retrain ourselves how to get control back over our breathing, so it is something that doesn't come naturally – and we do need the practice controlled breathing. And so it's something to do when you're in a good space, you're feeling good, and it's something that you'll need to practise a couple of times a day, just so then, in the future, when you do have an exacerbation, you're able to access it, have confidence in how to go about it, and use it when you need to. 

And so the best thing that anyone can do in regards to getting control back over their breathing, is to try and relax their neck muscles and their shoulder muscles by sitting in a comfortable supportive seat, having your feet flat on the floor, putting your hand on your belly, and just relaxing, flopping as best you can. And either breathe through your mouth or through your nose, preferably through your nose, if that's comfortable for you, and breathing in through your nose and really focusing on slowing that breath out. Because what is happening when you're breathless, is that you're making quite shallow quick breaths in so you're filling your lungs up with air, which makes it then really hard to actually get any good quality air in and you're tensing your shoulders and your neck muscles, making them really tired. 

So we need to just relax, relax, and then focus on that slow breath out, that's the crucial breath. In through the nose and gently pursed lip breathing like you're blowing out a candle on a birthday cake. Slow breath out. A nice image to have is like with the modern TVs people have in their lounges and things now but is the rectangle, so in on the small side, out along the long side, in on the little side, out along the long side. And just keep repeating that until you’re just slowing your breath down and getting back into control of your breathing. 

I'd recommend three times a day making just time out for yourself, for five minutes, and just practise, practise the breathing, so when you need it, you've got a lot of confidence in using it and how to go about it.

Denise
It's like anything isn’t it – the more you practise when you do use it, it's now familiar. And that rectangle’s such a good idea – they’re everywhere, the television, your tablet, your phone, the door frame – there's always a rectangle to look at.

Christina
Exactly. Just look around and find one just to help you focus on your breathing.

 Denise
We do have resources on our website and those details will be at the end of the podcast. And some of those resources will help guide you through this and there are some links to videos to see these images as well. 

What other techniques do you use Christina, for people trying to get or take control of their breathing?

Christina
Another distressing thing for people is coughing, and that can be absolutely exhausting and crippling. The breathing itself has been already exhausting, but when somebody has a cough, and they just can't shift what's in their chest, it's just triggers the breathlessness off even more. So there are strategies to help you manage your breathing by just doing a good couple of sniffs in and then a good cough out. If you can't manage that, or your chest feels like the fluid and mucus and things inside are just too sticky to shift, then I would recommend a referral to a physiotherapist to help you get good chest clearance. And the physiotherapists are very skilled at helping tap the chest and tap your back and get your fluid moving and to help you move it out of your body. 

Denise
Yeah, it's always good to use all of the team isn’t it? There's a lot around.

Christina
They're fab at the chest clearance. Yeah.

Denise
Positioning can be quite important can’t it – what position you're sitting in, lying in. 

Christina
Yeah, definitely. And a lot of people have just naturally figured this out. At night in bed lying flat on your back is just very uncomfortable, it really affects your breathing so having good pillows, raising up your head and your chest just helps you get better air in while you're sleeping. 

Things like at the supermarket and just leaning on your trolley, taking your time. No-one knows that you're just focusing on your breathing as you go around and get whatever you need from the supermarket – but just that leaning forward, resting. 

Equipment, like a walking frame can be really helpful, especially the ones with wee seats on them, because then you can stop, have a seat, get your breath under control again, and then keep on going with wherever you're needing and wanting to be. 

Something really useful, if you're finding anything is getting harder to do because you're triggering your breathlessness and affecting your energy, is to get a referral to the community occupational therapists and they'll come and do a home assessment and go through all the things that are getting trickier for you to do, whether that's getting in and out of bed, having a shower, getting up and off your furniture, or your toilet, all these things. And they'll provide you with equipment so you can keep being as independent as possible, but not be triggered off from doing these sort of routine daily activities. 

Denise
So the other thing that can help Christina, is there's a range of medications that can be beneficial too isn't there? You've talked about the inhalers, the bronchodilators, so that's commonly known as Ventolin or Salbutamol, and that's best used with a spacer you were mentioning, because it nebulises that to a finer particle and gets it further into the lungs. Is that right?

 Christina
Yeah. So therefore, more effective, you're actually going to be getting the dose of medicine.

Denise
Okay, so if somebody is not using a spacer, that's a good step. 

Christina
Oh definitely. Yeah, I'd highly recommend it. 

Denise
Are there other inhalers, or is that really the prime one that we've been looking at?

Christina
There's actually more and more coming into the market, so people have a lot of preventer inhalers as well, that they use once a day, where the Ventolin and your blue inhalers you can use sort of throughout the day. And so the doctors, your GP or specialists, will always be making sure that you're getting the most beneficial inhaler for your situation.

Denise
And who can help them understand if they're using them the right way, Christina? If they don't have access to yourself, who is somebody else that they could approach to check that they're using these the right way?

Christina
Another quiet and forgotten sometimes, health professional out there is your pharmacist and they are able to hook you up with a spacer and work through how to best effectively use it and clean it and care for it. Also, the practice nurses within your practice maybe are also able to assist you. 

Denise
The next medications that you mentioned, I think were opioids.

Christina
The most common one that is used is morphine. A lot of people associate morphine with pain management, which it is very effective for, but morphine is also a fantastic medicine in small doses to help open and expand the lungs. Usually that will be in a liquid form and you measure it up and squirt it in. Not everyone likes the taste of it, but most people tolerate it really well. And it takes about half an hour to actually be effective. 

So with the morphine, using it pre-emptively is a really helpful way to use it, so half an hour before you do something taxing like a shower, or if you know you're going to be going out on an outing, having it. Try and plan ahead and use it in that way. 

Denise
Now, there was another group of medications, you talked about Christina – benzodiazepines. Can you tell us a bit about those? 

Christina
Yeah, the probably the most common one that people may be offered is a called a Midazolam spray. It works really effectively alongside the morphine, where the morphine is there to help you get better air into your lungs, where the Midazolam spray, which is a nasal spray, is there to help calm down the anxiety that you may be feeling because of that sense of not getting air – and so that's to help you relax, especially your shoulders and your neck muscles and things like that. And just the thinking that can sit alongside the scariness of not being able to get breath and just to help you relax yourself down, Christina cont… so you're able to focus more on getting control of your breathing while you're waiting for the morphine or your huffers to work.

Denise
So using a mixture of those, and working out the pattern that works best for you, is a good way to go, isn’t it?

Christina
What I would recommend for people to do, and that's whether that's with your GP or your practice nurse or with your hospice staff support, whomever it may be, but looking at doing a bit of what we’d call an acute action plan, where you are looking at having a really clear plan around breathing techniques that are really useful for you to help calm you down – things those around you can do to support you because not everyone likes being touched when they're having an exacerbation of breathlessness. Some people just need space and so people to know that around them, that just ‘Let me be, I'll be okay. Maybe put the telly on for me or something to help distract me from what's going on’ – whatever it is for you, where other people may like having their shoulder rubbed and just say, ‘You'll get through this’, and just some relaxing, supportive words and things like that, whatever's right for you. 

And then have very clear instructions around use of your medications in an exacerbation. So knowing ‘What is my first port of call with what I've been prescribed? What is my then backup? How much time should I give it between having to repeat any doses that I have?’ Just so you are really confident that you know that you're safely and effectively using your medicines the best way possible. And then how long to give it? How long should it take for it to work? And then if I have done everything in my plan, then where's my next port of call for support if things aren't settling down?

Denise
So that's a really good plan to be thinking about and putting in, in advance, when you're not having an exacerbation.

Christina
That's exactly right, and so when you do have an exacerbation, you'll know what you're doing. You feel confident and you know you will get through it.

Denise
So we've looked at some of those things around some of the techniques in managing the breathlessness. We've looked at some of the medications, but one of the big things that's really hard for people is this anxiety about being breathless Christina, isn't it? 

Christina
Very much Denise. It is absolutely frightening and scary. I had one gentleman who was a war correspondent in the Vietnam War and he was telling me how he was caught and they initially thought he was American, so they were lining him up in front of the firing squad to execute him. And then they were going through his personal property and found his passport and it was a New Zealand passport, but they thought he was British, and they went ‘Oh, there you go’ and they released him. And he was a man with COPD, and he said, as frightening as that was facing that firing squad, living with COPD and the fear and anxiety in that sense of ‘Am I breathing my last?’ with the exacerbations he experienced, was more frightening. 

That really stuck with me to really put myself in his shoes to know how scary this disease is. And so with the anxiety and the fear around their air hunger, a lot of people I've met do have that automatic negative thinking that will pop into their heads around that – ‘I'm dying, my lungs are on fire’. You know, it’s frightening – all these negative thoughts going through their head. 

And so what can be really useful is talking to people that you care about, whether that's family or people that that you find you gain a lot of support from, your GP, your practice nurse, your hospice support people, whoever, to talk through that, and look at ways of getting strategies to help you get on top of those negative thoughts, because that negative thinking will just exacerbate your breathing and make your anxiety go higher, which will make you more breathless. It’s a vicious cycle. 

And so talking through things and looking at ways to help you relax, and about having more positive thoughts in your head that ‘I can get through this’, and ‘I will get through it’ will make a big difference to helping you use the strategies that you've got to help you get good air. 

Denise
It reminds me Christina, that in one of our other topics, we've talked about the fact that you've survived 100% of everything life's thrown at you so far. Maybe this is a time to remember that you've survived every breathless attack so far.

Christina
And there's always support around and if you're finding you're needing more specialist support to manage the frustrations and anxiety that you're feeling, then reach out and get some help, whether, you need counselling or whatever, there is specialist support there to help people.

Denise
I have spoken to a number of people over my years of nursing and said that in all my years of nursing, I've never seen somebody with a lung condition die fighting for breath. They have often felt like they're about to, as you've just said, but actually when the time comes, usually as bodies have wound down, actually that desperate air hunger also winds down. So it's very unusual for somebody in one of those situations for that to be their end moment.

Christina
Yeah. 

Denise
Christina, some of the other things that we've talked about in the past is about managing your everyday activity, pacing yourself. Why is this so important?

Christina
It all comes down to listening to your body and conserving your energy for those things that are most important to you, so that the take home message in regards to that Denise, is the three P's – and that’s Prioritising what's important to you; Planning those activities; and then Pacing those activities. In that way, you're going to get the most enjoyment out of those things that are most important to you. 

And it's easier said than done because we're people. Our head is willing and we want to keep doing things how we have always done them, but unfortunately our bodies are going to revolt and say ‘nope’ and so we need to think ‘Okay, I need to listen to my body, I need to change how I'm doing what's important to me’. 

And you know, if you need support with that – because it's easier said than done, it truly is – it actually takes a lot of focused thinking about ‘How am I going to do those things that are important to me?’ because it can be really hard, especially when we're frustrated at the losses we're incurring. 

 Denise
It's admitting that actually it’s something I can't do anymore – that is a big step. It's kind of a retaking of control, isn’t it, because if I make these decisions, then I'm controlling it. And I'm choosing what are the things I'm going to do, and what are the things that I'm going to pass off to someone else, so that I'm choosing this, rather than allowing it to be chosen for me.

Christina
It's really important to keep doing what you can do. Keep moving your body because breathlessness is full of cycles, really it spirals down. And so when we struggle to breathe, we do less, so therefore, we get less fit and weaker, and so therefore we get more breathless with activity, because we're losing our strength – and so the more we can do, the better.

Denise
It’s a great reminder. Yeah. So when we're talking about pacing yourself, Christina, what are some of the tips that you would have around how to pace yourself safely.

Christina
In regards to the breathlessness piece, it's around pacing your breathing and so a really good titbit there, is to breathe out on exertion. So for example, if you're walking up steps, breathe out as you’re pushing up through the step. Anything that is requiring more effort, that's the point when you need to breathe out. 

And pacing yourself by just taking your time really – no running up those stairs, or holding your breath –  a really common thing that people can do, because it feels like if I just hold my breath, and just quickly go do whatever this task may be, it feels like that’ll be the right thing to do. But unfortunately, it'll just make you so breathless and you'll regret it. 

Another key point that I'm sure people would have noticed in themselves is that bending at your waist can really take your breath away. So when you're bending, breathe out as you're bending down. And it may be, at that point, a time to think about getting support in if needed to help you with any of the lower body actions, you know, dressing, drying, washing and things like that, because that will in time become quite hard work, so reach out for help.

Denise
And that's where you OT can help too, isn’t it – your occupational therapist, around equipment for getting shoes and socks on.

Christina
Exactly right 

Denise
To keep that independence as long as you can. 

Christina
Exactly right. 

Denise
And I get about the breathing, you know, it seems instinctively we hold our breath. But the moment you talk about it, it's clearly illogical.

 Christina
But it's really, really common to hold your breath and go.

 Denise
Hey Christina, thank you very much. It's been really interesting talking with you about the breathlessness topic today. 

Christina
You're welcome, Denise.

Denise

And thank you for joining us today. This podcast was brought to you by Otago Community Hospice, with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education