Caring for someone with a terminal illness

Finding information

Most of the people we interviewed knew little or nothing about the disease or what would be needed in terms of caring. Carers wanted information at different stages of the illness, about the illness itself and what to expect, and about what help might be available to them. While some felt they had been given sufficient information, many felt they needed more and sought it out for themselves from a variety of sources. (see ‘Hearing the diagnosis and coming to terms with the prognosis’).Where it took a long time to get a diagnosis, this ‘not knowing’ could be quite frightening and some carers looked for information to try to understand what was happening. Some searched the internet or medical books, others asked advice of health professionals they worked with or knew socially.


At the time of diagnosis some patients and carers were given leaflets about the condition while others were not. Some hadn’t understood all the terminology used by the doctors so looked up words on the internet.

Once the diagnosis was established some felt they had sufficient information from their hospital doctors or their GP and did not look for more. Carers often picked up information when they attended hospital or GP appointments with the patient. While some felt included in the consultation and were happy to ask questions, others felt they were bystanders and there was no time for them to ask questions. Several carers felt they did not have sufficient knowledge to know what questions to ask.

Many carers felt they had not been given enough information, particularly about what to expect as the illness progressed. They therefore tried to find out more for themselves from a variety of sources. These included GPs or other health professionals who visited the sick person, friends or colleagues who were health professionals, other carers they met through joining support organisations or committees, picking up leaflets at hospital support centres or day centres, or searching the internet. One person attended a talk at the hospital.

Many of those who used the internet found useful websites about treatments and support organisations. For some the internet became a regular source of information as the disease progressed and different drugs and treatments were administered. A few carers sought information about clinical trials or complementary therapies that might assist the patient. But others struggled to find out what they wanted to know, in particular about how the disease would affect their friend or relative, saying that the information was not specific enough to their situation. Looking on the internet can be daunting as there is so much information, not all of which is reliable, and some information can be frightening.

People vary in how much information they feel they need, and in our interviews there was sometimes a mismatch between how much the patient wanted to know and the carer’s information needs. While some carers sought out as much information as possible to gain a sense of control over their situation or to help them to cope, others felt that they should be guided by what the patient they were caring for wanted to know; and that it was important to let the patient be in charge of the information. Some patients wanted lots of information and became experts in their condition, whereas others wanted little or no information, which could mean the carer putting their own needs to one side. Dick wanted only the basic information about his wife’s illness in order to maintain their normal relationship and avoid regarding her as a patient. David (Interview 08) helped his mother to care for his sick father, but he felt his parents withheld information to protect him from the full knowledge of his father’s condition. He and others learned things later that they hadn’t known at the time.

Information about the illness was not the only kind of information that carers wanted. Information about what practical and financial help or support was available to carers and how they could access it was important to many. Some people said they had been told enough about this by their health professionals or a social worker, while others said they had been told nothing or had not been told about a specific kind of help that would have been useful to them. Several asked friends or colleagues for advice; Maggie said she had searched the internet. Sarah suggested that one could never have enough of this kind of information.

Some people wanted to know what would happen to the person they were caring for towards the end of their life. Information about this was rarely offered and carers often said that they felt unprepared for the emotional experience and the practicalities. Some carers asked the specialist nurse or palliative care team for advice; Fiona said she found the Marie Curie Cancer Care website, which gives information on this topic. Simon was given a leaflet about this by his GP – he said it was hard reading but that knowing what to expect reduced his fear.

Simon was also recommended a website about how to deal with the children when a parent dies, which he said was the thing he had been most unsure about.

​Last reviewed July 2014.

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