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Living with dying

Hospital care for people with a terminal illness

Hospitals vary greatly, from large teaching hospitals to cottage hospitals, which may offer minor surgery or respite care.

People with terminal illness need good palliative care, which places special emphasis on pain and symptom control. Palliative care teams include many different specialists in pain control, nursing, social work, psychology and counselling and can be based in hospitals or in the community. Despite the development of such services, the medical, emotional and spiritual needs of people who need terminal care have sometimes been neglected.

To improve services the Leadership Alliance for the Care of Dying People has published ‘One Chance to Get it Right: how health and care organisations should care for people in the last days of their life’ June 2014*. It sets out the approach that should be taken in caring for all dying people in England, focusing on achieving five priorities for care.

  • The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
  • Sensitive communication takes place between staff and the person who is dying and those important to them.
  • The dying person, and those identified as important to them, are involved in decisions about treatment and care.
  • The people important to the dying person are listened to and their needs are respected.
  • Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised

Many people we talked to recalled their experiences in hospital. Some talked about their treatment, such as chemotherapy or surgery (discussed more fully in the relevant sections of other Healthtalkonline collections on cancers and heart diseases, etc.), others spoke about palliative care or respite care.

We heard about many good experiences in hospital. For example, a woman who had breast cancer went into hospital for a week, partly to have a blood transfusion because she was anaemic, and partly to have her pain controlled. She thought she was lucky to have a single room, and said she quite enjoyed her time in hospital. A man who thought he might not survive his operation was struck by the kindness and humanity of the hospital porters who took him to the operating theatre.

 

She enjoyed her week in hospital where her pain was controlled and where she was given blood for...

She enjoyed her week in hospital where her pain was controlled and where she was given blood for...

Age at interview: 50
Sex: Female
Age at diagnosis: 42
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And as I say I had some radiotherapy on my spine. I had a week in hospital which was actually quite nice, because I was in so much pain which wasn't controlled and I was very anaemic. 

They gave me a blood transfusion, got my pain under control and I just had a lovely holiday in the hospital. Cos I had a single room, the sun was shining, I had some sewing to do and I had lots of books and I just had a really nice time. I didn't want to come home; I was quite enjoying it there. But now that's why I feel better, because they've sort of sorted everything out. 
 

Others were keen to praise the National Health Service, especially if they had been critical of it in the past. For example, a woman who had been treated for cancer with interferon said that she was grateful for all the expensive treatment she had received. A man who had had private care was so impressed at his happy and efficient NHS ward that he decided to stay there rather than return to the private hospital. Another man commented that he did not believe private care could have matched the specialist care he received.

 

She felt fortunate that she could benefit from expensive treatment.

She felt fortunate that she could benefit from expensive treatment.

Age at interview: 58
Sex: Female
Age at diagnosis: 56
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Before I forget I must say as far as I am concerned, don't knock the National Health Service because I do feel tremendously fortunate to be having what I understand is a very expensive treatment. 

And even more fortunate I suppose that I have responded well to it. Some of that might be to being prepared to put up with some quite unpleasant side effects but over time those have diminished and I do feel lucky because I think that they don't use the treatment for elderly people because I suppose, frankly it's not cost effective to pour huge amounts of money into somebody whose life expectancy is not very good anyway. Or who hasn't perhaps the strength, to cope with the treatment.
 

Good nursing care is just as important as high-tech medical treatment, particularly towards the end of life. Many patients were reluctant to criticise staff, who were obviously overworked, but others had not formally complained in hospital because they did not want to be branded an 'awkward patient'. Staff shortages, or staff inexperience, were usual problems: a man with colon cancer said that staff “were run off their feet”, and that patients often had to wait too long for a simple thing like a bed pan.

 

A shortage of nurses led to insufficient care at times.

A shortage of nurses led to insufficient care at times.

Age at interview: 58
Sex: Male
Age at diagnosis: 56
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Now whether it's numbers [of staff] I don't know, but I've found that the waiting period for some innocuous things like a bed pan or something like that people have got themselves in such a state about a simple thing like that because they were bedridden and things like that. 

And I don't know, I think it needs doing, it needs to be geed up somehow, the treatment of the nursing staff and the general staff to the patient like you know, but obviously you get, you get the exception to the rule and you get some wonderful, wonderful nurses that are running around doing above and beyond their duty but I find generally speaking that there all stretched. There's no question about that like.

Some patients had stayed in different hospitals or on several different wards and noticed how the culture varied. While some wards were described as happy, efficient, warm and friendly, others had inexperienced and uncommunicative doctors and nurses and poor standards of hygiene and care. This woman contracted MRSA in hospital and said that she rarely saw staff on her ward wash their hands.

 

Describes the different cultures on the wards she was in and suggests that the 'tender loving...

Describes the different cultures on the wards she was in and suggests that the 'tender loving...

Age at interview: 75
Sex: Female
Age at diagnosis: 74
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I think from being in this large teaching hospital where the nurses did, I think the first year they did it at university, I felt they were probably taught how to give injections and do blood pressures, but they were not taught that patients are very vulnerable. Everything they say goes straight to your heart so when they say things like, 'the cancer's spread', you get very, very upset, so I think they really should be taught that patients are very vulnerable and they need to be very careful in what they say, and that we need a lot of affection and we need tender loving care almost as much as we need the drugs. 

And I think this is something. Instead of the nurses coming and talking; one ward, they were wonderful, they were angels. They would come and talk to us but the last ward I was in when they weren't busy they were all just sitting round at the desk chatting, but they didn't come and talk to us. They didn't treat us as patients. I used to say I'm just bed number six, and they didn't, even the surgeon didn't sit down beside me. If only somebody had sat beside me and explained what was happening or even held my hand. There's no contact at all, there's very little, even eye contact. 

A whole group came round the bed and they didn't even say who they were so you had about half a dozen or more, standing round while they discussed you and you were just bed number six, you weren't a person, so I think the human side of medicine is lacking.

Another thing, I think cleanliness is appalling. I got the MRSA, which was... I wasn't at all surprised because they didn't wash their hands very often. They would put rubber gloves on now and again but even the doctors would come and feel my tummy with the MRSA in the wound, they'd go and do the same thing to the next patient.
 

In some hospitals the staff delivering food and drinks seemed to pay no attention to whether the patient could eat or drink unaided, simply collecting the trays of cold, untouched food. The daughter of a man with motor neurone disease said that staff were too busy to feed her father or the other patients in the ward who couldn't feed themselves. However, she remarked that for every 'dire' member of staff there was another who was 'wonderful'.

 

Patients who needed help to eat were not always given necessary help due to lack of staff.

Patients who needed help to eat were not always given necessary help due to lack of staff.

Age at interview: 49
Sex: Female
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Do you want to comment in general about the medical and nursing care?

Well nursing care is fine within, they do what they're told to do. I don't happen to think it's the right thing. And stroke patients get left. If you have a relative to come in that's fine but what if you don't.  

Is this because of shortage of staff or - ?

Yeah.

So were you having to do things for your father that might not have been done at all if you hadn't been there that you felt should have been done?

Well of course he was, they did bath him and they did sort it out so that he could use a bed pan and I dare say they would have fed him if I hadn't been there. I always was there or my stepmother was there. And in practice what happens is the food gets left and left and left until it's stone cold and then about three in the afternoon they spoon-feed it into somebody, and how nice is that?

Hmm.

But then if they've only got two of them [staff] on what else can they do.
 

A man with prostate cancer, who originally came from India, experienced three different hospitals. Two had been 'very good', but in one hospital the nurses were too busy to attend to his needs, and he particularly missed his usual diet.

 

Discussed how hospitals vary. He particularly misses being able to eat properly when staying in...

Discussed how hospitals vary. He particularly misses being able to eat properly when staying in...

Age at interview: 66
Sex: Male
Age at diagnosis: 63
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I've been in three different hospitals, because I've worked abroad. I've worked out of the country...

What about in this country?

In this country again, different hospitals. They do vary quite a lot. Maybe it is their size or whatever. I've found, of the three, a couple of them were very good, but the third one was a little bit overrun. They could not attend to you enough.

Overrun?

Overrun, over worked. When you said you would like to get something done they will say, "Yes, we'll get it done", but nothing happens. In other places, they actually understand what you are saying and they would go out of their way to put you right.

Now, you say you come from India. Do you have any particular needs when you are in hospital, from the point of view of your background, and how are they catered for?

I particularly miss my food. And part of the reason why I dislike, or I think I didn't gain enough in hospital, was the food. There was one hospital where there was an attempt made to get different types of food. That was nice, that helped. But not being able to eat properly in hospital and surrounded by patients, also with the same sort of disease, was not the best, was not the best thing.

A woman with chronic obstructive lung disease sometimes spent short periods in her local cottage hospital for respite care. However, she found that staff didn't seem to understand her health problems and she didn't get much rest. She would have liked to have had a bed in a hospice, in her area, but there weren't any for people with lung disease (see 'Insufficient hospice care').

 

Her visit to the cottage hospital for respite care was not at all restful.

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Her visit to the cottage hospital for respite care was not at all restful.

Age at interview: 41
Sex: Female
Age at diagnosis: 24
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So, have you been to respite at the cottage hospital much?

I've been 3 times. My third time I had to cut short because there were problems at home with my son and he became very distressed.  

Plus, I had to share a room with another patient who was quite demanding, although her condition was similar to mine she was only early stages, but was of an attitude of, 'I'm just going to lay here and die', instead of fighting and I couldn't cope with that.  And I had no peace at all; I was constantly asked to, 'Can you pour me a drink?'  "Oh, can you just pull the curtain back?'  'Can you help me to the toilet?'  I wasn't a nurse; I was there for a rest so I actually cut short.  



* The Leadership Alliance for the care of Dying People was made up of 21 national organisations it was formed so it could respond to the recommendations set out in More Care, Less Pathway (July 2013), the independent review of the Liverpool Care Pathway (LCP). The LCP was an approach to the care of dying people developed during the 1990s, based on practice in hospices. Its aim was to transfer best practice to other settings, including hospitals and social care. The LCP provided guidance on a range of different aspects of care, including: comfort measures; anticipatory prescribing of medicines; discontinuation of interventions that were no longer necessary or in a patient’s best interests; psychological and spiritual care; and care of the family. Following concerns about the use of the LCP, particularly from families, the Minister for Care and Support commissioned an independent review. The review panel found evidence of both good and poor care delivered through use of the LCP and concluded that in some cases, the LCP had come to be regarded as a generic protocol and used as a tick box exercise. The report made 44 recommendations. One of the key recommendations was that the LCP should be phased out. This recommendation was accepted by the Minister for care and Support. Use of the LCP was not mandatory and not all organisations that cared for dying people used it. However its use was widespread and there was considerable concern that it needed to be replaced by something else. 

Last reviewed July 2017.

Last updated July 2017.

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