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End of life care

Why did we do this research?

It is widely believed that most people would like to be cared for in their own home at the end of their life, if possible. However, many people with haematological malignancies die in hospital, much more so than they do if they have other cancers or illnesses. We explored the reasons for this in a number of studies.

What did we do?

We interviewed doctors and nurses and talked to the relatives of patients who had died about their experiences. We also analysed HMRN data, including hospital records, to look at whether patients discussed their end of life preferences with their medical team.

What did we find?

From what we were told in the interviews with patient’s families, many people chose to remain in hospital at the end of their life, as this was a familiar place to them and they knew and trusted the staff. Preferences to be cared for and die at home were said to change if symptoms became too difficult to manage at home, and this was often said to lead to urgent hospital re-admission. Many clinicians said that a lot of input was needed from nurses and GPs if patients nearing the end of life were to remain at home, but that this was not always available. They also highlighted that patients might not consider going to a hospice because they don’t know much about the care available there, or how to get a referral.

The hospital records showed that although many people discussed their end of life preferences (often more than once), some do not. These also confirmed that people change their mind over time, depending on who is involved in the discussion (patient and/or relative) and when this takes place. Home was the most common first preference, although this often changed closer to the end of life, and most people died in hospital.

To find out more about this research, please see our Publications.

Publications