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Living with dying

Where people want to die

People often say that they would like to die at home, as long as they are not a burden on the family.

“70% of people would prefer to die at home” - Dying Matters March 2017.

However, the possibility of a home death depends on various factors, such as the progression of the illness, the need for symptom control, whether there are complications, the family support available, access to community based palliative care services, and whether necessary equipment and other services are available.

 

He would prefer to die at home but wouldn't like to be a burden on the family and would consider...

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Age at interview: 72
Sex: Male
Age at diagnosis: 71
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Have you got any thoughts for yourself about what would be the best kind of care you could have as time goes on?

The best type of care I could have I suppose as times goes on, if it becomes necessary, would be permanent nursing care in some establishment that was particularly set up for that. Having said that, there is a trend today of nursing people in their own home providing I could cope with that I would be happy for that to happen to me.  

I don't want to be a burden to my family, that is something that's definitely out of order as far I'm concerned. I've seen other families that have endeavoured to cope with situations of that type when they couldn't and it practically destroyed the family, therefore I... well.... no that's not for me. Yeah, with the help that's given to people in their own homes by social services and by local medical profession I think to a degree one can cope with it in those circumstances. 

I go back to my wife who died from cancer. One of the things she said to me was, 'I know I'm dying but I want to die in my own home'. And my response was, 'If we can manage to bring that wish to fulfilment we will do that'. And with the help of my 2 daughters and the local community nurses and the doctor, we managed to achieve that. It was hard work. It was very emotional but we managed to carry out her last wish, so yeah I see the element of nursing at home is important if it can be coped with without too much strain.

Do you know much about the kind of care that's available in nursing homes and hospices?

Our local hospice is mainly used as a sort of, how can I put this... to give carers some relief. They go in for perhaps a week or two, the patient, and then they come back out again and they probably spend their last few days there. Yes, I mean, if it becomes necessary for me yes, I will be quite happy in that...

People recognised that circumstances might change. One woman, for example, had decided to stay at home as long as possible, but knew that her mental or physical state might change, making it impossible for her to stay at home until she died.

 

She decided to stay at home as long as possible.

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Age at interview: 82
Sex: Female
Age at diagnosis: 64
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What kind of care do you think you'll be given in the immediate future?

Well, I've been told that, if I need it, they will keep me here [at home] as long as they can, or as long as I want to stay. And unless I become, oh impossible one way or another, mentally or physically, I intend to stay here.  

And then, if there's room in a cancer place, they'll put me there and otherwise they'll put me in a ward in a hospital until there is room, so they'll find something, somewhere to put me.

And how do you feel about those kind of arrangements?

Well, I think they're the best one could expect in the circumstances. That's OK.

Yes.Yes. And your daughters, how do they feel about them?

Well, that's OK too and I will make the decisions as long as I'm capable and if I'm not, they will. 
 

A man with testicular cancer and kidney failure wanted to die at home with his things around him, but he anticipated a 'messy' death, which might need intervention. Like many other people we talked to he didn't want to inconvenience those he loved. 

Others worried about possible strain on the family. A woman with bowel cancer feared she would lack of control over her 'bodily functions'. Even though she would like to stay at home as long as possible, she was quite prepared to go into a hospice.

 
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She would not want to be a burden on the family if she were desperately ill.

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Age at interview: 50
Sex: Female
Age at diagnosis: 48
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When you've talked to your husband, what sort of things have you spelled out?

Well I mean, it's sort of things that in fact I'm sure we've talked about before, but I suppose we'll just put them in more... in more concrete terms and my husband did help a friend of ours look after his wife who died of cancer, and she was very ill at the end and had no quality of life whatsoever. It was, you know, a dreadful strain on all the family and I would never ever want that for us and... ultimately if I'm desperately ill and can't be cared for here, then I'd be happy to be in hospice care and he must think of other things as well as me, our daughter and family life. 

We know, because we nursed my mother here, that it can be an incredible strain, an incredible strain. No matter how much you love somebody I think it's such a terrible strain. And I suppose that's the only thing, deep down that will sometimes wake me up or make me fearful. I don't want to be; I mean everybody says they don't want to be, that dreadful burden. I'm prepared... prefer to say goodbye in a much more loving, rational situation and when you've got more control over your bodily functions, or more or less your mind.

Many other factors influenced people's thoughts about place of death. A young man with a brain tumour favoured a home death because he wanted to have friends and family around him. He thought that in hospital visiting times might be restricted, and parking would be easier in front of his own house.

 

He wants to die at home because it will be easier for family and friends to visit.

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Age at interview: 32
Sex: Male
Age at diagnosis: 31
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So we've just had another break and we were talking about what your preferences are for care when you need more looking after.

Palliative care.

Yes, more palliative care. Whether you would like to stay at home or go into hospital or some other place?

Home. Home's... I think home is the best place. You know, it's where you know. It's where you belong and at the end of the day, it's home, isn't it?

You were saying it would be easier for people to visit you.

Oh yeah. It's like, I don't like homes and hospitals, they are restricted. You can only go in at this day and you can only go in at that time, and you can only do this or that. People are then restricted how they get in and get out whereas here, at home, they can stay, they can park out the front, it doesn't matter what they do. You know? And it makes life so much easier for them and I want my friends and family round me. I don't want to be dying in a hospital or in a home where nobody can see me because at the end of the day it's what I want, I hope, you know.  Hopefully it's not going to be much of a burden on somebody, me being at home dying you know.

Have you got any idea how the end bit might be, you said that it would be just like, almost like a turning the light off?

Yes, from what I understand it will just be like switching the lights off. I won't know nothing about it. I probably won't even get that much weaker, I might get weak but I don't know how far weak I'll get but it will be a case of just like shutting, shutting my eyes and that's it, I'm gone you know.  

Home was not always ideal. One woman said that her husband was not very practical when it came to looking after an ill person and some people had thought about moving to a more convenient location, or to a house with a bathroom next to the bedroom. A woman with breast cancer liked the idea of building an extension on her daughter's house.

Other people too, wanted to die in the comfort of their own homes, in familiar surroundings. A man with prostate cancer worried about pain, but had been told that pain could be controlled even if he decided to stay at home.

Another man who favoured a home death said that he didn't want to be 'messed around with', implying that that he didn't want to go into hospital to have any more medical interventions.

 

He wants to die at home in the peace and comfort of his own surroundings.

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Age at interview: 59
Sex: Male
Age at diagnosis: 57
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You talked to your wife. When you get to need more care she's saying, and you're saying you'd like to stay at home and she will look after you as much as she can?

Yes.

That's good. So if... do you think there could come a point though where you might need to go into some sort of nursing care?

I don't know. Again I don't know from the doctors what is likely to happen apart from they say I will just get weaker and weaker and as more pain occurs in the bones then I will be given more painkiller. Eventually that painkiller I suspect will be Diamorphine and from 2 milligrams, you get to 4 milligrams, from 4 milligrams you get to 6 milligrams, from 6 milligrams to 8 milligrams and whatever it is to take, keep me out of pain.

But I don't see why that can't be administered within the comfort of my own surroundings. I don't know that there is anything else that they would want to do to me. If they start wanting to do things to me, no I don't want to be messed around with.  

If I am feeling enfeebled and sick and uninterested I am not interested in being messed around with either

No-one we talked to said that they wanted to die in a hospital - one man said that 'hospitals are for the sick, not the dying' and another said they were too sprawling and impersonal. A woman with motor neurone disease wanted to stay at home as long as possible but was adamant that she would not consider going into a hospital or nursing home because in her experience they were short staffed and provided poor care.

The daughter of a man with motor neurone disease said that her father found the hospital very noisy. He hoped to move to a hospice, but no hospice beds were available.

An elderly man with multiple sclerosis was adamant that he would only stay at home if his wife remained well and if she accepted help. He was quite prepared to go into a nursing home if necessary. A woman in her early sixties, with breast cancer, did not want to go into a nursing home where everyone would be much older.

Those who have had the chance to become familiar with a hospice often feel that they would be content to end their days there. A study in 2004 of 41 terminally ill cancer patients and their carers in north-west England found that they were overwhelmingly in favour of either a home or a hospice death (see ‘Place of death: preferences among cancer patients and their carers’).

One woman, who had been admitted to a hospice for a period of symptom control, said that the hospice gave excellent care and was full of love and laughter. A woman with breast cancer said she would prefer to die in a hospice because she worried about pain, didn't want to be a burden on the family, and didn't want her family to think of death when they visited the family home, a place they had all loved.

 

She would prefer to die in the hospice, where she had experienced good care, love, and laughter.

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Age at interview: 76
Sex: Female
Age at diagnosis: 74
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If you had a choice between going into hospital, going into the bedded unit at the hospice or staying at home and being looked after at home, what would you like best?

Well I think I'd like to go to the hospice really. Yes. I think that would be more convenient for everybody and myself. They're so good there.. They don't fuss you lots, but they see to everything you need. And  we all have so much laughing and you know that's, that's half of the battle isn't it?

Yes oh it is yes.

Yes we all have a laugh and I mean we're all in the same boat and we always find something to laugh about..

It sounds like a lovely atmosphere.

Yes it is a lovely atmosphere, nobody can describe, nobody can describe it until they've been there.

 

She would prefer to die in a hospice for a number of reasons.

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Age at interview: 68
Sex: Female
Age at diagnosis: 57
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Have you thought about whether you'd like to stay at home or go in a nursing home?  

Yes.

I think about them, myself.

I think if the cancer got bad I would like to go to a hospice. My husband is not terribly practical when it comes to looking after someone who is very ill and I think that I would like, if it came to it, I think I'd like to be in a hospice where they control the pain for you, look after you.  

My biggest problem with thinking about death is not the actual dying because I can envisage that as going to sleep and not knowing anything about it like you go in for surgery. You have the anaesthetic and you're gone and you know nothing about it and you just don't wake up. I think of death like that.

What worries me is what's going to happen before, particularly with cancer because you hear so much about the pain. I've experienced pain, I've had the pain in this breast so I have experienced pain and that side of it does worry me in wondering how I would cope with it. So for that reason I think I would like to be in a hospice.  

I don't think I would want to come home to die. I think I would like to stay where I am because I think it would be very difficult for my family to come to my home, or for my husband to visualise what had happened. So I think I would rather... I don't think I would like to be in hospital. I would like to be in a hospice and I would like to be in a caring environment.

So are you thinking a lot about how it would affect your family? Where you'd be. You're saying you wouldn't want to be at home because of how they would feel?  

Yes. I think a) the demands of caring and b) thinking about my family afterwards. I think it would be very difficult for them to come to the house if my husband was here on his own, and they had seen me die here. Especially because we loved it so much I think I would want to be elsewhere.
 

Some people we talked to hadn't decided where they would like to die, or discussed it with their partners. A woman with ovarian cancer was pleased that her Macmillan nurse had raised the subject, but said that it was a very sensitive topic and needed to be approached carefully.

A large percentage of people in the UK still die in hospital 47%, 23% of people die at home. Only 6% of people die in a hospice (The National End of Life Care Intelligence Network - Variations in Place of Death in England December 2016).

It is now NHS policy that everyone with a life-threatening illness should have access to appropriate palliative care services, the current government strategy is to support more people dying at home.

For information on Advanced Decisions, Advanced Statements and Advanced Care Planning see ‘Information - Advance  Decision and advance statements

Last reviewed July 2017.
Last updated July 2017.

 

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