Julia, senior staff nurse at St Helena Hospice:

I’m one of the nurses at St Helena Hospice and I also work in the community, so see patients in their own homes.

We thought it would be a good idea to produce this video so that family members can have some sort of idea what to expect as a loved one approaches the end of life.

It can be a very difficult time and there are some changes that occur, and to be informed about those changes before they happen might just help someone be ready with what to expect.

So this video will go through different things that can be expected to happen.

But also just to say it doesn't replace any advice given by your healthcare professional, whoever that may be.

Choices

One of the first things that we consider when someone has a life limiting illness is what their wishes may be at the end of life. One of the things that  we try to encourage is that people plan.

We have various life events and we learn by experience it's always better to plan, whether it be a wedding or moving house or anything like that. It's actually the same with health care and you can have some measure of control over what happens when someone is dying.

What usually happens is there's a conversation with your healthcare professional and that conversation is a little bit along the lines of wishes. So where someone who has a life limiting illness where they might want to be cared for as they get less well, where they would want to die as that time approaches. 

And there are certain things that can be put into place as a result of that planning. So we tend to use certain documentation. So this is a booklet that you might come across called My Care Choices and it very much is your document, the patient, family, friends etc, and we encourage people to write down their wishes, what's important to them, you know, is there a pet? Are family or friends important? Being in their home important? And also things like what they wouldn't want to happen, you know, might they be worried about going to hospital etc.

We very much encourage wishes to be written down and they go on a special register that we can have access to.

And also thinking about things like resuscitation, because that's quite an important conversation, it's a difficult conversation, but it is an important conversation so that there's no unnecessary intervention if there doesn't need to be.

One of the reasons that we feel this sort of thing is important is that so that families and friends can understand what a certain person's wishes may be and to enable those conversations because sometimes those conversations just don't happen and no one really knows, what a particular patient might want as they get towards the end of life. So that is why we encourage those conversations to be had.

Where end of life care can happen

When we're thinking about someone's wishes, there are some options regarding where someone might be want to be cared for towards the end of life. So there's options:

The hospital, sometimes if a particular person has had a positive experience in hospital, then it might be that they don't mind being cared for in hospital, but that is not the norm.

Mostly people say that they would like to come into the hospice and be cared for at the hospice. That's very much bed dependent so although it's on someone's care plan, it might not be achievable, it depends how things are at the time, but if it's on someone's care plan, then obviously we will try and facilitate that as far as we possibly can.

If not, we might consider a care home facility there are care homes that are very good at the palliative care side of things. So that can be another option.

And of course, some people choose to remain at home and where this is becoming more and more common. So therefore we would put plans into effect to put equipment in and stuff like that so that that can be facilitated at home and think about care packages, which I'll speak further about shortly.

Recognising end of life

When we know someone to be in the last phase of illness and approaching the dying process, there are certain signs that we can recognise that occur.

So those are a patient might become weaker. Mobility might be more difficult. They might be sleeping more, spending more time in bed. They might not want to eat or drink as much as they used to. They might even become confused, which can be quite difficult. So any changes like that can be discussed with your healthcare professional but I'm going to go through them one at a time, just so you have more detail on each one.

Getting weaker

One thing we would notice is that a person is getting weaker. So it might be that they're no longer able to walk as well as they could. They might not even be able to get to the toilet. They might not even be able to get in and out of bed very easily and may be spending more time in bed, sleeping more, sleeping for longer periods.
o there's a very noticeable change concerning the functionality of a particular individual.

Equipment

So it's at this point that we would think about some sort of assistive equipment. So that might be if toileting is a problem, that might be a commode. One of the things that would be needed is something along the lines of the hospital bed, we call it a profiling bed, and it just helps people because it goes up and down and the head rest comes up as well just helps people to get in and out of bed or if they're in bed and need care, then that helps the carers as well.

We use things like sliding sheets that help with the movement on the bed. We would want to be concerned about someone's pressure area so they don't get a pressure sore, so we would use a special mattress. If they're still getting to the chair, we'd use a special mattress on the chair as well. And it just helps with that pressure relieving aid. We might also think about simple things like bottles in the bed if that's going to help toileting.

Care support

Now, one of the things that you might want to have had a conversation about and have considered is whether or not you feel that you would need support with care. So an assessment could be done regarding someone's care needs, and a care package put in place. So that generally means one or two carers coming into the property assisting with the care and any other needs around care, around personal hygiene. And it can just take the pressure off you so that you can just be with your loved one rather than having to worry about being part of that care.

You might want to do the caring self but if that's becoming a struggle, then that's something that we can look at. Sometimes it's means tested, but generally if we're thinking about the very last phase of illness very much towards the end of life, the last weeks, then that can be funded. But that is a conversation to be had with your healthcare professional.

Sometimes if things do really get difficult, it's very difficult to manage at home that we could consider 24 hour care, but that's not so common. Again, it's a conversation with your healthcare professional to see what's best for you in your particular situation. But never be afraid to ask those questions.

Food and drink

One of the things that we notice is that the desire for food and drink can lessen. So appetite starts to reduce even the desire for fluids start to reduce. And the reason for that is the body really is no longer able to cope as well with those sorts of things so there's a sort of gradual decline of wanting to take anything drinking wise or eating wise.

What can help is thinking about smaller meals, little snacks, things that the person will enjoy. Maybe even just something as simple, because it needs to be moist foods because they're easier to take by mouth, something as simple as ice cream lovely flavoured ice cream or yoghurts or even ice lollies can be very refreshing for the mouth. So thinking more along those lines not so much worrying about the volume as the quality of the food and that what is being given is enjoyed.

And then we might also notice that people's desire for drink lessens as well. So it might just be sort of taking sips of fluid to moisten the mouth more than anything else. Maybe sort of considering sort of more on the lines of just mouth care. 

It will get to the point where someone no longer even feels like they want to drink anything. And of course, the mouth can become very dry when that happens. So we generally say sort of get a baby's toothbrush, something like that, and just get a little plain water or flavoured water and just gently moisten the mouth and that can be very refreshing and very helpful. And it's something that you can do and feel that you're doing to help your loved one.

What can happen is actually the swallow or the ability to swallow is decreasing. One of the things we don't really want to happen in that instance is for people to be forced to have something to eat or forced to have something to drink when their body actually just can't cope with it because it can lead to more problems.

lways seek advice for your healthcare professional if you're unsure, but generally we would say just have the sort of little toothbrush the mouth moisten but don't worry so much about the lack of swallowing.

Medication

One of the concerns when a patient is no longer able to swallow, is what do we do about medications? So it's at that point that we would introduce injectable medications. They’re medications that can be given for what we call symptom management as a patient is approaching the end of life. We would have someone prescribe these medications and medications would be kept in the house and they'll also be a prescription that goes with them and that prescription will be kept in a yellow folder, which would also be in the property. And the medications will be given by a healthcare professional.

We always have four. We have something for pain. We have something for nausea. We have something for something called agitation. And we also have something for secretions that can build up in the throat.

And how they're given is when we have a little a little port that goes just under the skin and so that means that we don't have to keep injecting we just use a little port and that's more comfortable for patients.

And then, if more symptom control is required, then we use something called a syringe pump. So this is something that delivers medications over a 24 hour period in a constant steady flow to keep someone comfortable. And this will be reviewed on a daily basis. So if a patient has needed more top ups of medications through their port, we would then adjust the medications in the syringe driver. The aim is to keep a patient as comfortable as possible and to enable as peaceful a death as possible.

So that's why it's so important to always keep us informed if there are any changes, so we can make sure that that's dealt with. 

Continence

Another thing that we find is because it can be more difficult for a patient to get to the toilet, that we then get issues with continence. And a patient might lose control of bladder or bowels so we would be assessing and addressing those issues. Sometimes it involves equipment and like I said before, a commode, urinary bottles, things like that are all very helpful.

But sometimes it may get to the point where we actually have to pass a little tube into the bladder, and that's called a catheter. And that drains, it's painless, and it just drains into a bag and that just helps sort of deal with that issue.

Sometimes if there's a problem with bowels and that we manage with some sort of bowel care programme for that particular person.

So those sorts of things are things that we would expect to happen and again, we would assess, as we know that these sorts of things are occurring and support with that.

Signs of last days of life

Now, as your loved one might be entering the last what we call days of life, there are some physical signs also with that. Now, these signs can be quite distressing so I'm going to just go through each and every one what to expect. They don't always happen, but it will just give you an indication of what might happen, what you might see and therefore you can be prepared of what to expect. Always liaise with your healthcare professional if you're unsure but there are certain things that we usually see happening as a patient reaches that final phase or final day of their life.

Urine

So having just mentioned continence issues, one of the things that you might experience is someone goes to the toilet less. If someone's got a catheter in you might notice that the urine is much, much darker and there seems to be a lot less of it. That's because as the body reaches a sort of dying phase, a lot of the organs just don't cope as well anymore. So we would expect the kidneys to be sort of tapering off and therefore urine is not produced as much as it would otherwise be.

Skin

You may also notice some changes to your loved ones skin. So you might notice the hands and the feet look paler. They might even look sort of bluish. The skin in general might look a bit mottled, sometimes even puffy. And that's all to do with the sort of circulatory issues that just aren't working quite so well as they did. Again, the kidneys, so the puffiness can be because fluid doesn't get drained out of the body quite as well as it as it used to.

And all those sorts of things are what we would expect to see as someone is in the last days of life.

Agitation

Another thing that we sometimes see is, as death approaches, the patient can become a bit more confused and muddled and can also become restless and agitated. This can be quite difficult for relatives and carers to see and it's something that we would want to give some medications for. But there are a number of reasons why this happens. 

Sometimes it's purely due to chemical changes in the body in which case the medications that we give something to relax the patient can help sort of those sort of reactions to the chemical changes.

Sometimes it can be because maybe someone is uncomfortable, in which case we give some pain medication.

Sometimes it's just a patient might be experiencing some sort of distress and therefore family around, reassuring words, sort of gentle massage and things like that if the patient can tolerate that can often help.

Familiar sounds in the background, you know, they used to like the sound of birdsong or did they like the television on or the radio on, or just hearing your voices? All those sorts of things can really help.

Again, always seek advice if someone seems to be in an agitated state, seek advice because we would want to assess, we would want to give those medications. And particularly if someone hasn't got a catheter, let's say, and they're not able to pass the urine that can be something very easily dealt with by passing a catheter. If it's because someone's uncomfortable in the bed and we can just sort of help to, we'll get someone along to help to move that patient and just make things a little bit more comfortable. 

So there are various things that we can do. But it can be, that can be one of the more difficult signs that we see as death approaches.

Breathing

Lastly, usually in the in the last day of life, maybe the final hours, we would notice changes to the breathing. So what you might notice where breathing has been quite regular, you might notice there are more gaps in the breathing here it seems to stop and then start again and things like that.

You might also notice that the breathing has become more rattly. And that's because, secretions can build up in the throat because a person is no longer able to swallow we would give medications for that so that's something we would need to know about. But we would expect the breathing to slowly decline. And you might notice that those gaps get longer. And of course, the breathing would eventually stop altogether.

Sometimes it can be difficult to actually ascertain exactly when someone's died because even though we think that the breathing has stopped, sometimes there can be a couple more breaths that come in, and it's kind of, it can be a quite a quick process. Sometimes it's a slower process. It's always difficult to tell. And we generally say if there's been no breathing for about 15, 20 minutes, then we generally say that that person has died.
What happens when death has occurred

So when death has occurred, obviously that is a very difficult time. And it can be very distressing for families when their loved one has finally died. Always contact your healthcare professional because one of the things that we need to do is verify that death has occurred.

Verification

It’s ok to move your loved one if you want to but what needs to stay in are the devices or any catheters or tubes or anything like that until the healthcare professional has managed to verify the death. Now, sometimes this can take a little bit of time. So just so that you're warned, because if a patient is at home then it’s going to take a little bit of time to get a healthcare professional out to you, usually this is the GP. 

Sometimes it can be even a few hours, which can be quite difficult, but it can be a positive time because it's time to spend still with your with your loved one. It's time to liaise with family and friends and have those conversations if they've not already been had about what funeral director and some of those wishes, you know, a loved one and family have around the funeral and so on and so forth. So use that time constructively.

Do get support because it's a really, really difficult time. If you haven't got family around you already get family round, get friends around, make sure there's someone that you can talk to, they just help you with that process. 

But do be warned, it can take a little bit of time to get that verification done. And this is a legal requirement, so a death cannot be registered until that verification process has been done.

Once that is done, all the devices and everything can be removed and a funeral director can be contacted to actually take your loved one to the funeral directors. So the syringe pump and port and catheter and those sorts of devices are removed by the healthcare professional who's attended to verify the death. So that's not something that you need to worry about.

So just to be aware of those little things sort of need to happen. And it's the sort of process that needs to be gone through. Just to say that verification itself takes about five minutes and involves checks to make sure the heart is no longer beating, there's no breathing, there's no other neurological signs that might indicate that someone perhaps hasn't died. Generally we can tell, but it's just that legal requirement that needs to be addressed.

Who to contact

If you're wondering who you can contact, who you can phone these are your options.
There is the GP practice, you can phone them directly to let them know that the loved one has died.
You can phone SinglePoint and hopefully you've got the number for that - 01206 890 360.

You also might have a community nurse who's been very involved, probably less so, but a community nurse might have been very involved and you might want to give that community nurse a phone call as well.
You could do all three. Just as long as someone has been informed and know to come and verify your loved one.

Further information

I hope you found this video helpful. We do have written information that is available. So you can ask your hospice nurse or the SinglePoint team if you would like these leaflets. And they're these ones of ‘what to expect when someone is dying at home’ and also ‘why won't they eat?’ And this gives a little bit more information about what to expect when a loved one is entering the last phase of their illness on our website, which is www.sthelena.org.uk