Ep 7 - What To Expect At The End Of Life

What does dying look like? And what do I need to do at the time of death?
An interview with Louisa Ingham, a Nurse Practitioner in palliative care. 

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Transcript

 Ep 7: What to Expect at the End of Life

 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 “What to Expect in the Last Days of Life”.

Denise
Hi, I'm Denise van Aalst a palliative care nurse at Otago Community Hospice and today I'll be talking with Louisa, nurse practitioner in palliative care. Hi Louisa. 

Louisa
Hi Denise. 

Denise
Really what does dying look like? You know, what is it that families need to know, the things to look for, and what they can be doing at this really special time? 

Louisa
Every person obviously is a little bit different in how they begin to present when they may be approaching the end of their life, but usually, one of the first things that we see is fatigue.  People's energy tends to start to go down and things they could have done before, they're struggling to do now. So initially, it might be things like, they might be used to walking out to the mailbox every day, and then they're finding they can't do that anymore. And then even simple things like having a shower and getting dressed can become a real challenge for people. And those can be signs that we're seeing that somebody may be starting to head towards that final stage of their disease.

Denise
 And you're right, you're seeing people who have showered every day. That's been their habit, and then it's every other day, and now it's a couple of times a week. I guess it's good for them and their family to know that's okay. 

Louisa
Yeah, and normalising that, because obviously, for a lot of families that can be quite anxiety provoking when they see that change in someone. 

Denise
I like to express to people to save the energy for the things that matter the most. And for somebody getting up to have a shower is really important – for someone else a wash in bed will be fine. 

Louisa
And I often say to people, it's a bit like a bank account, and you've only got so much energy in your day, and it's best to save it for those things that really matter to you – and that might be the kids or the grandkids or whatever it is that matters to that person. But wasting that energy on something like having a shower, if they're not going to have it later in the day for those more important things helps them guide what they're going to use that energy for. 

Denise
Sometimes that fatigue is a bit of a response too, isn't it, and it's a little bit chicken and egg because they're eating less and drinking less so they're not burning up the energy to get the appetite. But then if they're not eating and drinking, do you find that that's a concern for people? 

Louisa
Yeah, I think it's especially a concern often for the loved ones. So often we associate food, and eating and drinking, with such an essential element of being human really – isn’t it, that socialisation aspect of it. So when that starts to wane, it can provoke a lot of anxiety and that's probably one of the biggest frustrations I see within families, where the family become very fixated on the eating and the drinking. And that can be quite distressing sometimes for the patient who just doesn't feel like eating anymore, and that's okay. So I often explain to families that it's the disease. The disease is changing how they're going to process that food, and they're just not needing it the way that they used to.

I say to people, eat what you feel like in the moment and don't worry about whether it's healthy or unhealthy. If you feel like eating chocolate or chips or whatever, go for it – a calorie is a calorie at the end of the day. But they eventually even get past that point, where food is just often overwhelming. And you're right, it then goes to the fluids which obviously we try to keep up for as long as we can, but even then there comes a time where people can't manage that anymore either.  

Denise
And then there are options available for helping to clean people's mouths and swabs that we can offer, or the District Nurses have for cleaning their mouths or just giving them the taste of some fluids and I like to say to families ‘What do they like to drink?’ Let that be what you're rinsing their mouth with. You know, mouthwash a couple of times a day, absolutely, but it shouldn't be the last thing somebody tastes is mouthwash.

Louisa
We’ve seen some hilarious ones, with people having mouth swabs with gin and tonic or a nice Pinot!  

Denise
And that's great – that’s as it should be, tasting those things that they've enjoyed.

One of the other changes that I’m aware of is around circulation and that they feel cold to the touch even though they don't feel cold themselves. Can you tell us a bit about that? 

Louisa
Often when people are going into the final short days to hours, the body becomes very focused on keeping the essential organs alive, the heart and the brain, so it pulls a lot of the blood back into the core really and that’s why we see that cooling start to happen. Sometimes the skin can go a dark blue or dusky red colour, and it can be quite worrying for families – and they do worry about them feeling cold, and you'll see copious amounts of blankets, and wheat bags, and all those kinds of things that people are using to try and keep them warm. 

So it's a lot about education at that point, that this is what's happening, and this is why it's happening. And whilst they might feel cold for us to touch, we don't think that the person is necessarily feeling that as a negative thing. So that’s reassurance to families that this is part of the natural dying process. 

Denise
For many people, they've not perhaps been near somebody dying so all of this can feel really new and quite scary. 

 Louisa
For a long time, death was really medicalised, and it happened in hospitals and in these places where other people tended to it. And I think we've had a movement back into families being more comfortable with being the carers in doing the death at home with the family member. But obviously, that brings a lot of anxiety because people haven't necessarily ever seen somebody die – and certainly not up close, and actively involved in their care. So I think education really is key for families that are going to take on this process.

Denise
And then adding to that, of course this might be the first time they’ve experienced death up close, and it’s somebody they love and care for. It just adds another whole level, but families do such wonderful work in caring for their loved ones.

Louisa
They really do. And you know, a lot of people feedback afterwards that it was such an honour and they felt a real sense of achievement in being able to give that last gift really, to their loved one – that they were able to be in their own home, with their pets, with their stuff around them. 

Denise
And actually, that brings us to something else – pets and children. I know at the hospice, we allow children in, we allow pets to come in and visit, but it's even easier at someone's own home. You know, if the cat’s always slept on the bed, to sleep on the bed; for children to be able to run in and out, see granddad, run away, and go play again. It's a lovely way of being. 

Louisa
Absolutely and you know, kids live so in the moment, and I think people often want to shield them from death and dying. But kids have an amazing way of accepting it, and so often you'll see a younger kid, primary school age or below come in, and they're very pragmatic about it. They'll say ‘Is grandad dying?’, and people say ‘Yes’, and they'll go ‘Oh, okay’, and then they're back outside kicking the ball around. So they have a real, amazing, almost mindfulness about them, that they can really stay in the moment. Obviously, with teenagers, it's a little bit harder, because they do have more of an understanding, I think, of the permanency of death.

Denise
They will take the cue from adults, and they will grieve. But that's okay too, that’s part of the learning for them. 

Louisa
It is and I think the more open and honest the adults can be, the easier that kids are going to adapt to that process happening in the home. 

Denise
I agree, that honesty and openness as much as possible. And one of the things that I might recommend for somebody is if you're struggling yourself, perhaps there's another key support person that the children know well, that can also be around to give the kids some extra support, but it's better than them being taken away and having it shrouded in mystery, because children have wonderfully inventive minds, and can make up stories that are far worse than the reality. 

 Louisa
Absolutely. I talked to a lady once years ago, and she said that she was looking after her husband who was dying. And she said her only experience of death had been when she had been about 12 and her mother died and she was sent to stay with her auntie, and came home and her mother was dead and buried – and she really immensely struggled with death and those emotions were still there, 40 years later when she was dealing with this with her husband. 

One of the things, after getting more fatigued – one of the more obvious things I start to see is that some people begin to withdraw from the world around them and I tend to think of it as a turning inwards, where the focus becomes quite back in on themselves, and they really don't have the energy or ability to be concerned any more about what's going on around them. I don't really know what causes that but I always think of it, that the energy is starting to run out, and they've really only got energy for themselves now. And when you see that, I feel like you're in the last week of life, usually.  

Denise
I would agree, and perhaps they’re still with us, still conscious, but just acquiring and listening to conversations, but it requires too much energy to actually contribute to the conversation. 

Louisa
Yes. And then usually, from there, we began to see people becoming quite sleepy, markedly sleepy, where they're sleeping, often more than they're awake anymore – usually still rouseable. If you call out to them or give them a wee tap, they'll open their eyes, but as the days go on, that becomes less and less, to the point where when we're into the last few days, they're often not able to be roused anymore and they really are unconscious now. 

Denise
But despite that, they’re still hearing what is going on around them. You know, I'm often really clear that even though somebody is unconscious, they're still hearing what's being said. 

Louisa
Yeah, and that's a different scenario obviously, but for people who've been in a coma, there have been some reports and people that have woken up have said that they could hear a lot and they remember conversations that happened around them, because it is one of the last senses often to switch off. So that continuing to talk, to have the normal sounds of life going on around somebody can be quite comforting, that normality of it. 

So I always really encourage people – they don't have to creep around like they're in a library when somebody is dying. They can talk, and laugh, and have humour, and have music, and all the things that they would usually have happening in their family. And I know often for people that can feel quite hard, so I often tend to try and do things, like if I come in and a house is quite quiet, I'll try and initiate some conversation. Often if somebody is in the bedroom, older people tend to have their wedding photo in their bedroom, commenting on that and saying ‘Gosh, wasn't Jim a handsome looking man when he was younger’ – you know, you can get the story starting to flow.

Denise
When my mother-in-law was dying, we had her at home, and she had quite a number of children, and they're all sitting in the lounge around her, and I have to say the atmosphere was not pleasant. Everybody was talking in hushed whispers, nobody wanted to make any noise, there was certainly no laughter. And I thought this is not right, so I dragged my husband to the kitchen and said ‘Get out there and start telling stories about your mother’. ‘I don't remember anything’. And I said ‘Talk about the time that you were teaching your sister how to smoke and your other sister was supposed to be on guard duty and she failed, and your mum caught you, and you got in trouble’. 

And so he went back into the lounge where she was, and the family were, and he told that story. And there were some laughs and that triggered another story and another story – and the whole atmosphere in the room changed and there was light, and there was laughter in the room. And although Pat at that point was actually unconscious and had been pretty much non-responsive, there was a sound came from her at one point, that I still to this day believe, was her laughing at the story that had just been told. You know, it really was so much nicer for her, as well as for the family, to be surrounded by those stories, by the laughter, by the memories, than that terrible silence.

Louisa
It’s very cathartic isn’t it, for families I think – that time, if they can use it in that way. And you often hear people say down the track actually how special that time was, when they look back – just how special that was, to have that time where it was just the most important people to that person with them, and being able to share that laughter and love.  

Denise
And that's a really good point, having just the people who are most important. This is not the time for the extraneous visitors, the nosy neighbour six houses down, coming and knocking on the door. They stay away. This is the time for just family, isn’t it?

Louisa
And I think it's okay. I'll often say to families, it's okay to be selfish right now. This is about you guys, it's not about everybody else. And giving them that courage that they can actually say ‘No, I'm sorry, not today’. 

Denise
And let me be clear, family is who you say family is. It’s not always about blood relations. We've all got that auntie, who's no relation whatsoever, but they’re more family than family so it’s who you want around you. 

Louisa, sometimes people get a little bit restless or confused. Do you see that very often? 

Louisa
Yeah, unfortunately you do. You can never predict who it's going to happen with. But one of the biggest things I find is building that environment like we were just talking about, of comfort and familiarity around the person, will really help. And talking to them, providing reassurance, sometimes re-orientating them – ‘Remember, you're at home, I'm here with you, you're safe’. All those things can help somebody immensely with settling. 

If it becomes an ongoing issue though, there are medications that we can and do use for people to help calm them if it's becoming a problem. But often, I really like to try the non-pharmacological interventions first, because families can do those, and they can do them really well. And also, you know, for the from the nursing side of things, there's a lot of things that we need to roll out first before going to medications as well. 

So, that's thinking about when did they last pass urine? You know, they might be in urine retention. Are they constipated? When was the last time they were turned? Are the sheets straight underneath them? – because if you've been lying six hours solid on a wrinkle, most of us will get uncomfortable. Those are things that the nurses will be thinking about – the families don't need to be so worried about that. If they're telling the nurse when she comes in that they're a bit restless, these are the things the nurses will be guiding families on, so it's not something that they need to stress about, but it's just be mindful of. 

 Denise
Louisa, breathing is something that often starts to change, when somebody's really in the final hours, perhaps the last couple of days? 

Louisa
Yeah, so often you'll start to see a few things happening. One of the things we sometimes notice is that the breathing becomes irregular. Most of us just breathe without thinking, we don't even think about it, it just happens, but as the body starts to shut down, the breathing pattern can become irregular. So they might be breathing faster or slower, or having big gaps in between their breathing, and this is normal, but it can be quite scary for families – and especially towards the end, when we're into the final hours, those gaps between the breathing can become very extended sometimes, which can be quite stressful for families. 

The other thing we see is a wet breathing pattern. This is where, when somebody’s swallow starts to fail, where you and I would be swallowing our own saliva all the time, people at the end of life can’t, so that saliva is still being created, and it starts to pool in the back of the throat. And then as they breathe, you get like that breeze over water sensation and you get a bubbling sound happening – and again, it can be really traumatic for families hearing that if they're not prepared and know what it is. So it's one of the things I always talk to families about in advance, because forewarned is forearmed, and it helps them recognise that, and they'll say, ‘Oh, that's what Louisa was talking about when she said about the wet breathing’. 

I actually had a family recently, and their family person who was dying was doing this breathing pattern, and the spouse said to me that once they started to hear it, they decided it was a bit like a cat purring and that made it much easier for them to accept, because it was much less scary when they thought of it as a purr rather than a gurgling – which I thought was really sweet.

Denise
That’s a great analogy. I think the big thing with it is that it's not troubling the person making the noise. A doctor once said to me that it's like snoring – that it's really problematic for the people who have to listen to the sound, but not problematic at all for the person making the sound. You can see that, because their faces are very much at peace, even while they're making what can sound a horrible sound. 

Louisa
And it's one of those things, there's no easy solution to getting rid of it. There are some medications out there, but research has shown they don't really work. So it tends to be more that normalising it, and positional changes sometimes can help a little bit with draining some of that, so moving somebody slightly onto their side for a couple of hours can sometimes help a bit with it. 

Denise
But I always try to encourage people at this point to be planning ahead a little bit – thinking are things changing if we are heading into a night, heading into a weekend? You know, the last thing that anybody wants at this point is a trip to ED, or calling an ambulance for a trip because something's not quite fallen into place. 

Louisa
Yeah. And I think, before somebody gets to end of life, it can be really scary as a family to talk about the fact that they're going to die and what that might look like and what their wishes are. But I really encourage families to try and talk about that – address the elephant in the room, so to speak, because it makes it much less stressful for families, if they know, this was mum's wish, we know that she wanted x, y, and z, and we can work towards that for them. And you know, if you're involved…

Louisa cont… with the hospice service, your hospice care coordinator is going to be checking in with you frequently, in those final weeks, and making sure that ‘Is this still where we're heading, is this what we're doing?’ so that nothing ends up happening, that you're not expecting or anticipating. 

Denise
And of course, anybody on the hospice programme in New Zealand anyway, usually has 24 hour access to advice. You might not be able to see somebody but you can certainly talk to someone on the phone. 

Louisa
Absolutely. Most hospices offer a phone number that families can call and be able to speak, usually to a registered nurse, who can give them advice over the phone. 

Denise
Probably one of the things that we're thinking about as saying goodbye, who is it that you want there, what opportunity you're going to take, ensuring that people have a little bit of time, perhaps each on their own with somebody. 

Louisa
And I think often the death of somebody you love – you know, their life is over, but that memory of that death lives on in the people that they loved, and has repercussions and echoes throughout that person's life. So it's really important, I think, that they get the opportunity to have that closure around the death – sometimes give them permission, that they're going to be okay, that they're going to survive without them, and that the person can die.  

But in saying that, I've also seen so many times where the family has held an absolute bedside vigil for hours and hours and hours, and then somebody gets up to go to the toilet and the person dies while they're out of the room. So I always prepare families for the fact that the person is going to go when they're ready to go, and if they wanted to be on their own, that's probably what they're going to choose to do. So never to feel distressed, if they've missed that last moment with someone. 

Denise
I agree completely Louisa. In all my years of nursing and being with people at the end of life, I have seen so many people wait, against all odds it would seem, for somebody to arrive. And equally those people who, as you say have had family around the clock 24 hours a day, and in the two minutes that nobody is in the room, they've slipped away. And I’ve sometimes wondered if they’re simply too tethered when there are people who love them with them, for some people. I'm not sure – none of us know those reasons, but I would absolutely say that people choose their final moment. And they will choose to either be on their own, or they will choose who they need to be there. 

Louisa
I completely agree. 

Denise
COVID, of course, has had a bit of an impact on that with people now having to take somewhat longer to get there. But I've seen comfort using Zoom or phone calls to still make those final connections. 

Louisa
Yeah, and we've really encouraged families, especially when the families are overseas and haven't been able to get back to New Zealand, to use technology, to zoom, and I think zooming really helps the family that are overseas see that decline in the person too, because they can actually visually see them whereas a phone call, people tend to be able to put on a good face – whereas Zoom does tend to show the physical changes that are happening to the person, which can make it easier for the family that can't be there, to accept that they really have gone.

Denise
So then, I think probably one of the key things, Louisa – how do we know death’s occurred?

Louisa
It's interesting, isn't it, because I think so often people have maybe only seen death on TV, and it's quite dramatic and obvious and that's just not the case in real life, especially if you're getting that spaced out breathing that we were talking about earlier. You know, you can have 30, 40 seconds between breaths so people tend to be on the edge of the chair. Is another breath going to come or is it not? 

So there's not often an obvious moment of death, but what we tend to see is, the breathing does stop, and obviously, the heart stops. And often we can see that in people who are dying, because you'll be able to see their pulse often bounding in their neck, and we'll see that stop. Quite quickly when somebody dies, their pallor changes because the blood’s not being pumped under the skin. So we'll notice the skin go quite ashen, and if we looked at their eyes, we'll see that their pupils have become dilated, and aren't responding any more. 

Denise
That's really helpful. There's a few key things there, and it's probably important to note what you just said, that often, we don't know the exact moment and that’s okay. Again, in the movies, there’s a code called and the time is documented – actually, it doesn't need to be that specific. 

Louisa
And also, the other important thing for families to remember is, there is no rush around somebody dying, when they do pass away. Every family is different in what they want, but for a lot of families, they still want to spend some time with the body. They may choose that they want to dress them in some clothes to be taken away in, and they can do whatever feels right for their family. But there's no urgency around anything, there's no need to rush to call anybody to come. If they want to, that's absolutely fine, too. 

But just a couple of things for people to remember, they need to notify their doctor or nurse practitioner, who'll be able to certify that death and complete the death documentation. And they'll need to contact whoever is going to be completing the after death care, so usually a funeral director, to organise the process around that. 

Denise
But that doesn't have to happen straight away, does it? As you said, they can just simply take time right now to just be, because often things have been so busy, there's been so much happening, there's been people. Now's the time to actually just be, have a cup of tea, maybe get some sleep. If somebody has died, especially late evening or overnight, then everything can just wait. 

Louisa
And no problem, somebody staying, you know, 6, 12 hours – that's fine. As long as the family are comfortable with that, there’s no problem. And I think, there's no right or wrong with this, either. Every family will have their level of comfort, and that's okay. Some families want their person at home for a long time and other people would rather have them taken by the funeral director and that's fine, too.

Denise
It's like everything else isn't it? It's what feels right for you. You know, you've been through a lot. It’s probably one of the toughest things you have to deal with as a family. So now, just to keep trusting your instincts and do what feels right for you as a family. 

 Louisa
Yeah, absolutely. 

Denise
Thank you, Louisa and thanks to our listeners 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