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Caring for someone with a terminal illness

Thoughts about the place of death

Research shows that most people would like to die at home if they had a terminal illness, with a sizeable minority opting for hospice care. However, more than half of deaths still occur in hospital, the place people say they would least like to be. People in modern society are less familiar with death and dying than in the past and it is widely considered to be a taboo subject. Health professionals may have therefore found it difficult to initiate discussions with dying people and their families about the end of life.
 
Nowadays more professionals are giving patients the opportunity to take part in Advance Care Planning - a voluntary process of discussion and review to help an individual, who has capacity, to anticipate how their condition may affect them in future and, if they wish, to set on record, choices about their care and treatment (see Planning for deterioration and death). As part of this process, terminally ill people and their carers should be asked about preferred place of death. This can be a very personal decision which will impact on the memories of the event for those left behind. Death doesn’t always occur in the preferred or expected location because, for instance, it may happen sooner than expected, there are no beds available in a hospice, or the patient has medical needs that can only be met in hospital.
 

Una hopes that her husband Bill will be able to die at home with support from the hospice but...

Una hopes that her husband Bill will be able to die at home with support from the hospice but...

Age at interview: 62
Sex: Female
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Yes okay, and have you talked about what kind of care Bill would want in the months in, in the future?

About when he dies?

He’d like to die at home, preferably. And we’re sort of geared up for that. The hospice are trialling respite at home and we’re going to see how that works out for us next month. So basically they’re all geared up for, for care at home but I think really it’ll come down to, you know, when the time is right what really, what really does shape up.

Oh and that’s another thing because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn’t want to be taken to or die. I mean we hope we have it, you know, everything, you can’t anticipate too much can you? What will come down, but we hope it will be here and if not here then the hospice where he dies, yes.
 

Many carers we spoke to said that the person they were caring for had achieved their wish to die at home. Cassie and her dad never considered hospice care; they always expected that he would die at home. Just before Roger (Interview 32)’s wife died a community nurse checked with him that he wanted Luise to stay at home and not have hospital care. Simon’s wife was adamant that she did not want to go to hospital or to a hospice but wanted to stay at home no matter what happened.

Although caring for her at home was hard on the family, Simon would never wish to change it as it seemed natural to have her at home. He had been scared of death himself and realised how much more frightening Karen’s death would be for their 4 year old daughter, particularly if she was excluded from it. He felt the more his daughter knew, the more she would be able to understand and cope, so it was a great comfort to him and Karen that they were able to arrange for Karen to die at home with him and the children there. Dick’s wife went to a hospice one day a week and also had two, weeklong stays there; she was uncomfortable most of the time and Dick feels it was better that she was at home to die.
 
A home death can allow family and friends to spend more time with the body after death than might happen in a hospital. If a patient dies at home during the night there is no need to notify a doctor until the morning.
 
Although a patient may be receiving care in a hospital or hospice, it is possible to press medical staff to allow the patient to go home to die with support from community health and/or social care professionals. Some patients left the hospital or hospice so they could be at home. Keith felt daunted by the prospect of caring for his wife when her condition deteriorated, but she seemed to feel uplifted as soon as she came home and Keith is sure it made a difference to her; knowing that he enabled her to die at home is a great comfort to him now. Poppy felt that hospital was not the place for her dad to die, so she took him to stay with her in a friend’s cottage. He had a room overlooking the garden; he called it his ‘paradise before paradise’. Sarah’s mum had always put her ‘best face forward’ for the doctors, nurses and visitors in hospital, so when she came home she was able to let go and be herself.
 

When Pat said she wanted to come home Keith didn’t hesitate. Pat was a home bird and coming home...

When Pat said she wanted to come home Keith didn’t hesitate. Pat was a home bird and coming home...

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Similarly, how did you feel about her decision to die at home?

Oh, I fully, I mean Pat, Pat really I mean you get this expression again, don’t you, a home bird and that but she was in all respects. I mean no, no different from millions of other mothers and, and wives. I mean she, she really was, I mean this environment, wherever we were, I mean we never talked about houses and values. It was, wherever, whatever your accommodation, that’s your home and that you, it don’t matter whether it’s a hovel or whether it’s a mansion. It’s what you make of that in terms of, and we’ve been together all that time and so I felt, when she said to me, “I want to come home.” There was no doubt in my mind.

So you had to be here to expl..., realise what it meant to her when she when, when she came through that door. It was extraordinary and the, as I say the, no, in any way, no implied criticism of the facilities, the hospice or anything else. It, she was she was morally uplifted as soon as she came through that door and you can just you could see it in her. You could feel it in her and it, it was the remarkable increase, again, in her spirits and that’s all I can say. So, no, I had no hesitancy in agreeing, well, it wasn’t agreeing, in saying, “Yeah, you come home.” And, as it turned out, it was a it was a wonderful development and I’m sure, although you can you can never be completely knowing in terms of what that individual feels, but I’m sure it made a great difference to her. And, when I say difference, a feeling of, of great comfort. So no, I had no doubt.
 

Some people we spoke to had expected their friend or relative to die at home but in the event this wasn’t an option. Sue’s father was moved into residential care when his needs couldn’t be met at home. She feels that the care home had been the best place for her father to die although her mother may have expected him to die at home. Sue thinks it might have been difficult for her mother to continue living in the house and for the family to visit if he had died there. Although David’s father would have liked to die at home, he died in a palliative care unit at the hospital. David feels it was probably the best place for the care he needed at the end, and like Sue, he feels it is probably easier for his mother to continue living in the home.
 
Some patients decided that they did not want to die at home. Lynne had thought about possible home care for her mother, but her mother did not want to be at home because she knew the family would have to live in the house after her death.
 

Janet’s partner Chris decided she wanted to stay in the hospice and not to go home and take her...

Janet’s partner Chris decided she wanted to stay in the hospice and not to go home and take her...

Age at interview: 59
Sex: Female
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Yes, I mean she was really from, from well, I mean I’ve already explained when, when she went into the hospice, it was almost two months that she spent in the hospice and really the level of care that she had at the hospice was very, very good indeed and I felt it was an appropriate kind of care that she was receiving. I felt it was totally appropriate that she was at the hospice and, and that she was allowed to be there for all that period.

Now, if you reflect back to that, do you feel that has, was a good decision for coming back here, you know, you still live here?

Yes.

And so the last time she was here she was not….

That ill.

that unwell?

Exactly, yes. I think it was a really good decision that she, she suggested that she didn’t come home but she did say to me, “Look, I’ve decided I really want to stay in the hospice. I don’t want to come home and the reason I want it is because I don’t want to take my condition, my sickness, home for you to have to feel it in the house.” She said, “I think it’s much better for me to be here. Do you agree?” And I thought about it, really quite briefly, and said, “Yes, I do agree. If you’re happy with that, I agree that it will help me to cope with being in that house.” And, and I’m sure it was the right decision and I was happy about it. I didn’t feel that I really wanted her to be at home with me. I wanted her to be with me, of course, but not feeling the way she did. I didn’t want her to feel sick and be with me.
 

Earlier in Jane’s husband’s illness she had been adamant that he would die at home, but as his condition deteriorated she struggled to juggle ‘the needs of three children and a dying husband’. After a very difficult week the doctor suggested George should be admitted to hospital. Jane resisted that and arranged for him to go into a hospice instead. In hindsight she feels the hospice had been the right decision as his condition had been well controlled and it gave them more time together. David and Fiona always planned for her to go to a hospice once her condition worsened. Fiona had been in hospital a couple of times and it was becoming difficult to manage her care at home, so they decided that it was time for her to go to the hospice. On reflection David feels this had been absolutely the right decision.
 

Saba’s mother chose to go to a hospice where she had received good care before. Saba was relieved...

Saba’s mother chose to go to a hospice where she had received good care before. Saba was relieved...

Age at interview: 45
Sex: Female
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They just sort of said that, you know, she sort of said to me, I really, you know, feel and she … you need, we need to get her out of hospital now. And they said that the hospice had offered to take her back this week, which I was so relieved at because I knew that one place. And we, they said, “You know it’s up to you, do you want her to go to the hospice or do you want her to go home, you have to make that decision now”. And I knew at that stage that this was it. And I said, “I need to speak to my mother”. I didn’t say… at no stage did we say to my mother that this is it, this is it, this is the final stage.

And I said to my mum, “That they’re going to let you out of hospital, you know, you can either go to the hospice or you can come home”. We didn’t tell her that she was going to die at this stage. And my mother said to me, “You know, I want to go to the hospice”. And I felt relieved and I felt that she felt relieved that she felt like she was going home, for her, because I think she knew at that stage that the amount of care that was going to get, she would get it from the hospice. And she could see the struggles that we’d been under, though at no point do we ever make it feel to her that she was a burden to us. And you could just sort of see the relief on her face that she felt.
 

Jacqui always thought that her husband would die at home as he didn’t like hospitals. However the decision was ‘taken out of her hands’ when he was admitted to hospital where he died. Julie’s partner died in a hospice. Julie would not have taken him to the hospice if she had known he was about to die, because he wanted to die at home. John (Interview 10) would have liked his wife to be nursed at home but it was not until the night before she died in hospital that he was told that her death was imminent. Although she had good care, John feels that with better preparation she could have been transferred to a hospice. Val wanted her husband to die peacefully at home and had obtained all the necessary equipment, but unfortunately he died on a busy ward in hospital on the day he was due to come home (see The death itself).
 

Theadora’s mother wanted to die in a hospice, but her illness deteriorated in hospital and she...

Theadora’s mother wanted to die in a hospice, but her illness deteriorated in hospital and she...

Age at interview: 45
Sex: Female
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And then the night before she died was the, at about 11 o’clock at night. Well I should say, there was a, she’d already looked at hospice care, and her desire was to die in a hospice. Not to die at home. And not to die in a hospital. And she had looked at a particular hospice which she had, she felt was where she wanted to die. And so my sister and my father had visited, I hadn’t actually visited it.

And when we realised that she was significantly unwell during this three week stay, we talked to the palliative care team about the transfer to the hospice. But her care, her illness deteriorated at that point so quickly that they were making plans to move her, but the concern was that the move in an ambulance, which would have been at least an hour and a half in ambulance from where she was, would’ve been really, really disruptive.

As I said we were lucky enough that she was in a private room, she wasn’t on a ward. If she’d have been on a ward I think we’d have said, “Bung her in a, we’ll take her to the hospice, it doesn’t matter.” But she was in a private room that was quiet; it was very good nursing care. We could stay there, so we didn’t feel an enormous need. If she’d have been in a ward we would have done.
 

 

Heather had always wanted her husband to die in a hospice or at home but it happened in a nursing...

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Heather had always wanted her husband to die in a hospice or at home but it happened in a nursing...

Age at interview: 66
Sex: Female
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For the last two weeks of his life he was in a nursing home and I feel, had I known it was going to happen, I might have kept him at home but you don’t know do you. I think he was afraid to die here because he knew it would upset me.

But he went in and he was only in there two weeks and he died and I’ve often thought that had had I known it was only going to be two weeks I would have kept him at home because he loved his home. And then I thought he just went in there and gave up. Then I thought he went in there and I broke his heart taking him away from his home and then I also thought maybe he went in there and thought, “Well, this is it. I can give up now and go because she’s not going to come down one morning and find me gone.”

When you think about Bill’s death would you say that it was how it should be?

No, I wanted him to be in the hospice and he wasn’t. He was in the nursing home. I’d have had, right from the time that we started having help from the hospice I think we both said that we would want him to die there. My mum died in the hospice and it was it was made so, not easy, but less traumatic then I’d say. I mean it wasn’t traumatic in the nursing home but I was disappointed that he wasn’t where we had wanted him to be. But you can’t always, as I’ve been told, [laughs] you can’t always choose. You can’t always choose it. Some people don’t want to go in the hospice and they do.
 




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Last reviewed December 2017.
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