Living with Dying

Finding information when you have a terminal illness

Uncertainty is common in medicine. People who have a serious illness sometimes wonder why they are not told how long they have to live, but others know that doctors cannot predict what will happen. Some people we talked to said they did not want to know specifically how long they had left to live.

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Apart from the prognosis, patients have many other information needs and use a wide range of information sources, including books, leaflets and newspapers, support groups, telephone help lines, cancer information centres, lectures, other patients, the local hospice, national associations concerned with a particular illness, and charities (see resources for more information).

Many people we talked to were keen to know as much as possible about their illness and the treatment options, to contact other patients, and to identify 'sensible questions' to ask their doctors. Several recommended preparing a list of questions before an appointment and taking a partner or friend to help them remember and interpret what the doctor had to say.

Although many excellent leaflets and booklets exist, people sometimes said that the stock had run out and they left the clinic empty-handed. Some people complained that their doctors had not given them enough information, or did not allow enough time. A man with a brain tumour thought that his doctors ought to have spent more time explaining what was wrong, and a man with prostate cancer said that he had to fight to get information, particularly about his prognosis.

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A woman who wanted to take an active part in her care said that she was satisfied with the information she found (via the internet), but thought that her medical team should have provided more. She said “information is power”.

Others pointed out that, contrary to some people's fears, finding more information often stops people from feeling frightened.

The internet was a great source of help. People described finding valuable information about symptoms, treatments, drug trials, complementary therapies, and support groups. After checking an internet site one woman realised that her husband had symptoms of mesothelioma (lung cancer caused by exposure to asbestos). Another identified a surgeon who could perform an operation she needed. One man even looked at a video, on a hospital website, of the procedure he was going to have.

People were wary of unreliable information, and had developed various tactics to avoid it. One man said that he often ended up throwing books away if they were 'rubbish' while others said they used 'common sense' to 'sift out' reliable information from 'sensational material'. Some avoided sites run by private doctors or drug companies, compared information from several sources to judge its reliability, discussed the information they found with their doctors and nurses, or asked them to recommend reliable internet sites.

A few people were reluctant to use the internet without guidance because they had previously been scared by what they had found, feared that they would find frightening information, or were worried about the cost of spending time on internet chat rooms. Some organisations such as Maggie centres will help with internet searches and interpretation of the information found. Some felt too ill to use the internet, or had not learned to use computers, although it was pointed out that it is easy to learn if you are shown. Friends and relatives often downloaded information on the person's behalf - one man described how his wife would 'filter' internet information before showing it to him.

Many people were pleased (and sometimes surprised) to discover that doctors seem to be getting better at dealing with questions - a development some attributed to patients becoming more informed. Some were impressed that they could pick up the phone any day and call the hospital for advice.

Information needs fluctuate in the course of an illness and cannot easily be predicted. One man suggested that there should be a named person who could deal with questions as they arise to 'keep the information flowing'.  He thought this was particularly important for those who can't use the internet or might not understand the medical terms that inevitably creep in. Since these interviews there has been an increase in the number of specialist nurses available for most health conditions and this helps to provide patients with a valuable link to information and the resources available.

Last reviewed July 2017

Last updated March 2012.


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