A-Z

Caring for someone with a terminal illness

Care in hospitals, hospices and care homes


Hospital care
 
Following a diagnosis of terminal illness many people found that they had most of their care in the community rather than in hospital. Some people talked about attending hospital for palliative treatment for cancer or to discuss their condition with specialists. Whilst some found it helpful to still see their consultant, others felt it was no longer useful or relevant.
 

Una felt that there was little point making the long drive to see the consultant particularly...

Una felt that there was little point making the long drive to see the consultant particularly...

Age at interview: 62
Sex: Female
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Because all these other consultants actually, the neurologist for example, there’s nothing they can do. You trail twenty miles to the hospital, you see the effort of telling all the things that’ve happened since the last visit, back you go. You kind of have a vague hope it’s a two way street, that somehow you’re contributing to some pool of knowledge, you know, that’s made it worth your while, but actually there’s nothing coming back to be honest. The respiratory people in the other hospital, it’s terrible because you don’t see the same, you don’t see the same doctor, you don’t see the consultant and I think with MND people actually it might be worth looking at something like that. You see a new doctor who isn’t familiar with the file, and you see your partner wasting all that energy, telling that same story all over again and you think ‘what is this about?’, you know?

And you give them the eyes though, you know, that’s what I’m thinking, I’m telling you what I’m thinking, you know
 

People said that the care their friend or relative had received in hospital had varied. While they were full of praise for some hospital staff, care and sensitivity had been lacking from others at times. Brian said, “I can’t fault the people we’re dealing with at the moment”. Maggie said, “Sometimes some of the nurses were lovely”. Janet said that her partner Chris had greatly respected one of her oncologists but not another. John (Interview 12) said that “Most of the nurses showed care and concern” for him and his wife as carers. Georgina said, “Some of the registrars and sort of various under doctors, they were lovely people; they did care when they spoke to me, they were just difficult to get hold of”, and that one of the nurses had been “hard working, kind, [had a] sense of humour and treated my mother with respect and dignity”.
 
Sometimes carers felt that the type of care being offered in hospital was inappropriate because it was focussed on prolonging life rather than understanding terminal illness and people’s wishes to let death take its natural course. 
 

Janet felt the hospital care was too focussed on achieving a good medical outcome rather than...

Janet felt the hospital care was too focussed on achieving a good medical outcome rather than...

Age at interview: 59
Sex: Female
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The care that she had from the, the replacement consultant on the oncology unit, not, not the consultant who’d originally gone against her wishes, but the, the new one was very, very good and Chris was always very complimentary about the way she was treated by that consultant and the way she was spoken to, the conversations they had, the information that she was given, the help she was given. She had very, very high respect for that.

She was then put in touch with the staff at the other hospital and again, she didn’t have an issue with the care but she felt that it was a little bit focussed on, “We want to make you better come what may.” Or, “We want to treat you the best way we know how regardless of how you may be reacting to it.” The, “Regardless of the actual palliative care that maybe we should be beginning to address.” They were more concerned with the medical outcome rather than the actual care that she was experiencing and I was aware of that because I met with the consultant there as well with Chris and I got the feeling that it was, although she was very nice and, you know, we could understand each other on an intellectual level, I felt that it was just slightly focussed on something that that didn’t seem appropriate to Chris.
 

 

Maggie’s husband Donald wanted treatment to stop and Maggie was frustrated with a nurse who tried...

Maggie’s husband Donald wanted treatment to stop and Maggie was frustrated with a nurse who tried...

Age at interview: 57
Sex: Female
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I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said... I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should he should think positively. He should he might be able to go home.” It wasn’t a bad diagnosis. And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So but before we could do this, because the surgical staff were still hanging on to him and weren’t ready to give him up and wanted him to have radiotherapy and they had to ask, Donald had to agree that he didn’t want it. They came and all sat round his bed and asked him the question and the first time they didn’t get the answer they wanted, because he was confused sometimes. So they tried again and this time he was very, very definite he, he said he wanted to finish it and, and so it was agreed that he could be moved to a local hospice but, because once again it was Friday, they couldn’t do anything over the weekend. So they got all the paperwork in place and he was going to go in Monday morning. Then there was a hiccup because one of the oncologists at the hospice had said that Donald didn’t sound as if he was ill enough.

So our neurologist re-presented the case. It was agreed that he would go. Saturday, he was fairly, he was fairly quiet because the palliative, no, palliative care hadn’t taken him on because he was going to go to the hospice, that’s right. But he could have, they were advising about his medication so they’d got the medication a bit better and he, he was fairly quiet and reasonably peaceful, wouldn’t eat or anything. And we had the odd raving, when he was cross with us and he couldn’t understand why he was still there and why weren’t we helping him.

And then Sunday, he wasn’t too bad either. In fact, he was he fell asleep on Sunday and so I left early because he was he was asleep and they were going to give him sleeping tablets so he’d go through the night and then the phone went at about ten to twelve. I was in bed and one of the nurses said that his breathing, he was having difficulty with his breathing and his condition was deteriorating and I said, “Do you want me to come in?” And she said, “Well, I can’t, I can’t say that.” So I said, “Well, okay then. I’ll be in a little while.” So I rang my stepchildren to say that, “I will go myself.” And I was getting ready and at first, the stepson rang me and said, “No, stay there I’m coming to get you.” And then my stepdaughter rang and said she would meet us at the hospital. So we got there and we sat with him all night and his breathing was really label laboured but he did rally round and he got through the night.

Come Monday morning, we were still there. The neurologist’s registrar, new registrar, came to see us and they’d said that he was too ill to move. They could move him but it would be very traumatic so I said, “No, no, let’s not. Let’s just leave him where he is.” So they moved him into a side-ward. Palliative care were alerted. They came to see us. They were really lovely. They put him on something called the Liverpool package, which meant they would stop all unnecessary treatm

Sometimes people with a terminal illness were admitted as an emergency or attended hospital for treatment to alleviate worsening symptoms. Carers often felt heightened levels of concern and anxiety in emergency situations because they are aware of the possibility that their friend or relative may die during this time. When a patient is near to death health care professionals should follow an end of life care plan; a set of guidelines for best practice. 

At the time when these interviews were done the Liverpool Care Pathway (LCP) was recommended as a model of best practice by the Department of Health and was used in many UK hospitals and other healthcare settings but it was phased out in 2014 following an independent review.  A new set of five priorities for the care of dying people was published in ‘One Chance to Get it Right' June 2014 by the Leadership Alliance for the Care of Dying People. The priorites are:
 
"1. When it is thought that a person may die within the next few days or hours, this possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
2. Sensitive communication takes place between staff and the dying person, and those identified as important to them.
3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.”
 
 
 

Even though Jacqui’s husband did not like hospitals, when the time came she decided to call an...

Even though Jacqui’s husband did not like hospitals, when the time came she decided to call an...

Age at interview: 60
Sex: Female
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Going to, and Terry had this fear he didn’t want to go into hospital. So whenever the doctors came out and they’d say, you know, “You should be going to hospital.” He’d go, “No way.” So like he was always at home. But the, this last night, I’d been watching for a couple of days, phoned the doctor said, “He’s not good. Something’s changing.” And because I’d seen it happen a few times with lack of oxygen to the brain it, it’d happened a few times over the last year. That he didn’t know where he was or he’d be talking about things and like and like you’d, you’d when, when a person’s that, you get to know these sort of changes but this particular night I said to [my son], I went, “Daddy’s not good.” I said, like, “I’ve just got this bad feeling. We need to get an ambulance.” I’d come in here to phone the doctor. [My son] had gone into the bedroom and he was going, and [my son] was trying to get him and just sort of keep him alert and awake till the ambulance came. They was really quick and I don’t regret him going into hospital. I always thought that I wanted Terry to pass away here. I’m glad it was taken out of my hands. I am. Because he didn’t like hospitals. He never wanted to go in and I always respected that I knew that I could do whatever I could but when it came to the end, I don’t know. It’s hard to explain. They came and they took Terry in. I stayed there all the time. I never came home and they were so nice to him. They couldn’t have done any more than what they done and part of me was glad that it was the hospital and oh, I don’t know. It’s hard to explain. The decision was taken out of my hands and it wasn’t here. I don’t know if that makes sense. 

Emergency admissions had often been quite traumatic, with people encountering long waiting times, poor communication, poor treatment and personal care. People sometimes found staff seemed rude and abrupt in acute wards because they were busy and short staffed. This abrupt approach often clashed with the sensitivity that people expected from end of life care, and they felt annoyed that they had not received the level of care, or the approach to care, that was needed. Some people opted to take on the personal care needs of their relative but this was not always welcomed by the hospital staff (see Other caring roles).
Keeping their relative comfortable and pain free was vital and some carers said they had to be quite forceful when requesting that personal care needs were dealt with and that the appropriate pain relief was given. Saba found it difficult to get appropriate pain relief for her mother in hospital; sometimes they would give her too much morphine, which would knock her out against her wishes, and at other times when her mum needed pain relief the staff were slow to respond.
 

Mary’s husband was still on a hospital trolley in wet clothes the day after he went in as an...

Mary’s husband was still on a hospital trolley in wet clothes the day after he went in as an...

Age at interview: 68
Sex: Female
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Well, the first person to get to my husband, because I was away in France, was my daughter, our, our younger daughter, and she found that he had been admitted on a Friday and here she was on Saturday morning and he was on a trolley. He wasn’t on a ward and he was wearing the clothes that he had been admitted in and, at that point, when he was admitted, he had a urinary infection, so he was actually lying in wet clothes, wet and dirty clothes.

And he had tried to get up and go to the toilet and he wasn’t able to co-ordinate, at this stage, or walk properly, so he had fallen and he’d broken his glasses and gashed his eye, and then that had been put together with a couple of butterfly stitches. And there was food and drink lying about. It had been brought to him but he had been unable to feed himself and so it was taken away again or just left there. And so finally my daughter started to agitate for things to be done and she said, “When, I’m going to take his glasses round the town to get them repaired and when I come back I want to see him on a ward in a bed.” And that’s what happened.
 

Maintaining a good diet was also quite challenging in the hospital and many felt their relative had lost weight because no one noticed or asked why they were not eating. Some carers took food in from home.
 

Lesley’s husband was not helped to eat in hospital and lost a lot of weight. She got him home and...

Lesley’s husband was not helped to eat in hospital and lost a lot of weight. She got him home and...

Age at interview: 66
Sex: Female
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He was there for nearly three weeks, by which time he’d lost four stone in weight, because the food went to the end of the bed and if he didn’t eat it, it was taken away and nobody asked him why he wasn’t eating or drinking. But as he had permanent diarrhoea he couldn’t do either. He was on a drip a lot of the time, he was having platelet infusions and anti-biotic infusions and quite honestly, the even the consultant said he didn’t know what to do. He didn’t know what to do. He didn’t know how to cope with where he was and what he was, symptoms he was giving off.

So, eventually, after talking to the consultant, I suggested that he came home because he was getting no further then. He was losing weight. The weight was just falling off his, although his myeloma had ostensibly, according to his blood test, gone. We, we know that it’s treatable but not curable so, obviously, it was hiding somewhere and we later discovered it hides in the bone marrow and it’s very difficult to detect. So you can’t detect with a blood, just a blood test, which is what he has having. He really should have had a bone marrow aspirate but he didn’t get one of them.

So he came home. He’d only been home a few days and he actually, fell out of bed and calling in the doctor, he suggested he went back to hospital, which David refused, point blank, would not go back to hospital under any circumstances at all. Our own GP came in the next day and said, “Will you go to the cottage hospital?” Because we have a local cottage hospital, which the people round here fought to keep, and he said he would and in ten days they’d put nearly two stone back on him and looked after him the way, I felt, he should have been looked after all, all along, and got him back on his feet and able to cope with himself and what he needed to do, dress himself, feed himself, look after himself.
 

While some hospital staff were very good and recognised the needs of people with terminal illness, and had gone out of their way to accommodate relatives and friends, other people felt that there was a poor understanding of terminal illness. Hospital visiting policies were sometimes seen as inflexible although some carers had been able to arrange visits out of normal hours, particularly at the end of life.
 

Fiona felt that the acute hospital ward her mother was on had been unsuitable for someone with a...

Fiona felt that the acute hospital ward her mother was on had been unsuitable for someone with a...

Age at interview: 55
Sex: Female
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And I think you do need to be very clear with the hospital and I think you have to be much more proactive with hospital staff because it seems to me they’ve got a lot more distractions. And the understanding I felt on an acute ward about terminal illness was, was lacking I felt. They didn’t really understand, because we had limited visiting and under no circumstances would they relax that. So that’s why I was quite pleased to get her home because it, you know, I didn’t want that to carry on for too long. Yeah, I, I just feel that nobody seemed to appreciate that that, you know, that how ill she was and, and what she was going to need.  

 

The surgeon gave Henry permission to visit Jane on the high dependency unit out of visiting hours...

The surgeon gave Henry permission to visit Jane on the high dependency unit out of visiting hours...

Age at interview: 63
Sex: Male
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 My first bad experience that I suffered at that point, was that the surgeon, who was a female surgeon and very, very nice and very sympathetic to us, had said that I and two of Jane’s children, her sons who had both grown up, could go and see Jane in the in the, now, which ward was it? It wasn’t intensive care but it was something similar to intensive care, and although it was two in the morning, she said, the surgeon rang through to the this ward and said that arranged for us to go down and see Jane. We got there and it was quite clear that the young doctor there did not welcome our presence at all. By the way, we were now in an NHS hospital. I should explain that. We’d gone from private, second, second operation was done privately. The third operation, because they’d had a different surgeon, was done in a, in [Town] in an NHS hospital. The young doctor made us all feel terribly uncomfortable. He clearly didn’t think we should be there and he was very hostile and it was very, very upsetting. And I’ve never mentioned that to anyone before but I did feel that, I almost wrote to the hospital and said, you know, “This is not the way to treat people who’ve not gone through what the patient’s gone through but who the nevertheless are going through absolute hell and who’s, who need to keep their strength and their spirits up in order to be able to help the patient.” So that was my first bad experience with a doctor.

Some felt that their relative’s treatment was compromised because it did not fit in with normal ward protocols, or because of poor communication at shift changes.
 

Roger said that the consultant and physiotherapist exchanged notes about Teresa’s treatment on a...

Roger said that the consultant and physiotherapist exchanged notes about Teresa’s treatment on a...

Age at interview: 59
Sex: Male
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The, typical breakdown in communications in our experience was actually to do, where we saw it the most starkly was actually to do with oxygen administration that we….The consultant with a physiotherapist examined Teresa and came up with a treatment regime. We actually got a white board put up and the physiotherapist actually wrote what they had agreed on the white board. So if she came back later and wanted to alter it the consultant could see it and the consultant if he wanted to do the same, the physiotherapist could see it. Because the notes weren’t always available. And we had incidences of ward sisters wiping the white board clean because it didn’t fit in with her protocols, but I’d written it down.

Sometimes the treatment regime had to change fairly swiftly. And sometimes changes indicated were not carried out because we had a shift change and it was not communicated. It wasn’t in the notes and, or the notes weren’t read by the, the second shift and it wasn’t picked up on.
 

Hospice care
Some patients went into a hospice to provide respite for the carer. Patients might stay in a hospice for a period of days or weeks or just attend the hospice day centre. Some people made the decision to move into a hospice indefinitely. To many carers this came as a relief and some people described how this gave them the chance to re-kindle their previous role in the relationship rather than just be their carer.
 

Jane’s husband spent the last few weeks of his life in a hospice; she explains how this allowed...

Jane’s husband spent the last few weeks of his life in a hospice; she explains how this allowed...

Age at interview: 44
Sex: Female
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He was admitted and had to be taken in a in by ambulance up to up to the hospice, which is only a mile away. And that was a that was a, that was a relief because it just felt so out of control and I did need somebody, at that point, to step in and say, “Okay. I’m taking over now. You know, you’re his wife, just you be his wife.” And I think the three weeks that we had with him in the hospice gave that back to us, in some way. It kind of gave, you know, even though it was, you know, there were lots of people around us and everything, it actually did give me back time, permission to be his wife and not his carer. 

Hospices were generally held in high regard by the people we interviewed. They found that the care provided in hospices was focused on making the patient comfortable and understanding their specific needs. Carers were impressed by the attentiveness of staff, the homely, relaxed atmosphere and the activities and alternative therapies that were available. Saba was particularly impressed with how understanding the hospice staff were about her mother’s need for cleanliness because of her Muslim beliefs.
 

Georgina was very impressed with the hospice that her mother attended for respite visits because...

Georgina was very impressed with the hospice that her mother attended for respite visits because...

Age at interview: 47
Sex: Female
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Once we got to the hospice, it was another world. I can’t praise, I cannot praise [the Hospice] highly enough.

Can you talk a little bit about that? Why, why do you feel they deserve so much praise? Can you?

Well they’re a small ward but they are dedicated to end of life care so it’s something they completely understand. Nobody else is calling for attention except those people there with those needs. Having said that, it is extremely busy because everyone has different needs and there’s an awful lot of buzzer pushing.

And my mother had this added complication of dementia. She couldn’t push a buzzer for herself. If she needed to go to the loo she, unlike patients who have a good mind, can’t ring the bell for the nurse to come and assist them and sometimes she would try and get up and go on her own and she’d fall.

And the rooms and the bays all had huge windows with, they’re French doors. You could get a whole bed out. So if someone’s bedridden but still wants to go outside onto the patio in the sunshine, you can push them out.

We had tea parties outside with this other lady. We she had dogs and they were allowed to bring the, brought the dogs in to see her and we had pat dogs coming round. It’s extraordinary. The level of care is absolutely incredible. Also, they’ve got alternative therapies like art therapy, music therapy, reflexology. There’s a lady who’d massage Mum’s feet at night, which helped relax her for going to sleep.
 

 

David described the hospice that his wife Fiona went into for respite as more like a hotel than a...

David described the hospice that his wife Fiona went into for respite as more like a hotel than a...

Age at interview: 43
Sex: Male
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Talk about the hospice because some people don’t know what a hospice is like.

Yeah well. I, you, I think I probably had a view that it would be a bit like a hospital but with more flowers. So it’s still very medical kind of minded. It wasn’t anything like that actually. It’s a rather nice building, really quite modern. The décor was nice. The décor was like, like the, like it was people for as opposed to functionality and pushing through, pushing kind of people through a medical process. So you go… it was homely. It’s not going to be exactly what you have home but, there was space. Food was good. For those who aren’t effectively the patient, the food was good as well.

And you can be there for much of the time, most of the time. So it’s not like a hospital and you’re chased away and things like. The boys joined us.

The boys were…now the boys had been good throughout. I say they’ve been good, they…they, it sounds a bit daft but to have travelled this journey they had done remarkably well. So it was, to Fiona and myself, it was obvious that boys are going come to the hospice. There was no kind of, oh perhaps they shouldn’t go.

And at the hospice we could stay the night. The room she was in was a family room. So one night all four of us were there.
 

Although many carers found the hospice visits useful for getting temporary respite from their caring responsibilities, a few found that it had not always suited their sick friend or relative. Some felt that the sick person was more comfortable at home or found that the travelling to the hospice was more trouble than it was worth. Roger (Interview 32) said that when his wife Luise lost her voice she did not like being in the hospice because she was unable to communicate properly, so she stopped attending. They also worried that the hospice did not keep her as mobile as she was at home.
 

Heather's husband attended a hospice to give her a break but on one occasion he became upset by...

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Heather's husband attended a hospice to give her a break but on one occasion he became upset by...

Age at interview: 66
Sex: Female
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Can you tell me a little bit about respite care? We haven’t talked about that.

Respite care. Because Bill was terminally ill, we were able to avail ourselves of the local hospice and Macmillan nurse. Lots of people think it’s just cancer but, of course, it isn’t. It’s anyone that’s terminally ill. He started to go to the hospice to the day centre again to give me a break. He didn’t like it. He didn’t like going anywhere apart from at being at home. And the nurse in charge of the day centre, after he’d been going there a couple of months, took us both aside and said to Bill, “How would you feel about coming in here for a week to give Heather a rest, because look at her, she’s exhausted?” And he was quite happy. He said yes, he would and he went in and he was fine. In fact, he had a side room that particular time he went in. And he used to go in there one every three months or so, but one time we had to bring him home because he was in a ward and there was a guy at the end of his life and it upset Bill a lot, so he was really distressed so we had to bring him home. And then I think the demands on the hospice became rather heavy because there was an awful lot of people that that needed respite. They suggested we try to get him into a nursing home in between times.
 

Care homes
Choosing to move a relative to a care home or nursing home was a difficult decision which people struggled to make and sometimes found difficult to discuss with their relative. Using short respite visits sometimes helped people get used to the idea. Carers were adamant that moving their relative into a care home should not be something that was forced on them or used as an alternative to setting up a care at home package. Anne and her husband Jim decided together that he would be better off in a care home.
 

Heather worried about discussing a care home with her husband Bill; the Macmillan nurse was going...

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Heather worried about discussing a care home with her husband Bill; the Macmillan nurse was going...

Age at interview: 66
Sex: Female
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Well, I had to make a decision really whether or not Bill went into a nursing home and it was our Macmillan nurse really that, and the doctors at the hospice that said, you know, “I really think it’s time that he went into a nursing home. He’s getting beyond you being able to care for him.” And we found a nursing home quite close to home and I was afraid to ask Bill because I, anytime he’d been for respite he, he didn’t like it. He hated it and he couldn’t wait to come home. My son went and looked at the nursing home and he was very impressed but I couldn’t imagine trying to ask Bill whether he was happy to go or not so the Macmillan nurse said she would come along one afternoon and help me broach the subject. And then I thought, that morning, “It’s not right. It should be me that is speaking to Bill about the nursing home.” So I said to him that how did he feel about going into a nursing home and I was really surprised because he said, “Well, why didn’t this happen before? Why have you had to do all this caring if that option was available.” And I said, “Well, it wanted really because they were, any ones that were available were too far away.” And I wanted him to be close to home and, anyway, I wanted to look after him for as long as I could. But I was really surprised that he was quite happy to go there, but I wonder if it was actually because he could see that I was at the end of my tether.  

In the UK, although local authorities do provide some care homes, many are owned or managed by independent organisations. Carers are often very aware that the quality of care homes and the level of fees vary widely. This sometimes causes concern when choosing a care home for their friend or relative. Tricia visited various care homes which she described as “awful places that smelt of urine” before she found one that she felt was good enough for her mother to go to.


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Last reviewed December 2017.
Last updated December 2017.
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