A study looking at factors affecting where people with blood cancers are cared for at the end of life

Cancer type:

Acute leukaemia
Blood cancers
Chronic leukaemia
Hodgkin lymphoma
Leukaemia
Lymphoma
Myeloma
Non-Hodgkin lymphoma

Status:

Results

Phase:

Other

This study looked at the factors that affected where people with blood cancers were cared for at the end of life. It was open to people with:

More about this trial

Being able to choose where you are cared for and die is a sign of quality end of life care. Most people would prefer to be cared for and die at home. 

Studies showed that people with blood cancers are more likely to die in hospital than people with other types of cancer. The researchers wanted to find out why.

The researchers gathered information from: 

  • people with blood cancers
  • relatives and carers
  • doctors and nurses

They hoped this information could change things so that people with blood cancers could be cared for and die in the place they preferred.

Summary of results

The study team found that the idea of preferred place to die was complex with many related factors.

The team interviewed 56 people:

  • 23 doctors
  • 23 nurses
  • 10 relatives of people who died from a blood cancer

The researchers also looked at the medical records of 886 people who had died from a blood cancer. 

The team found that there were differences in how people viewed a hospital death, and that some people wanted to die in hospital. 

There were also differences between what doctors thought about place of death. Some doctors questioned the idea that ‘the only good death is a home death’. While others believed that dying at home was preferable. 

Blood cancers can be unpredictable and patients can become ill very quickly. The treatments for blood cancers are often very long with many serious side effects. 

Reasons why people with blood cancers went into hospital and died there were:

  • a sudden worsening of their condition
  • distressing symptoms
  • unrealistic expectation of home death and what support was available

Everyone also recognised that people’s preferences do change.  

The researchers collected information about any talks that had taken place about dying and particularly: 

  • where patients wanted to die  
  • who was involved in the talks
  • how the decision was made about where they wanted to die

They found evidence that 52 out of every 100 people (52%) had talked about where they preferred to die. For most of these people this subject had been talked about many times, although not all had come to a final decision. 

The team found that the preferred place of death changed as the cancer got worse. The first time it was discussed the number of people who preferred to die:

  • in hospital was 11 out of every 100 people (11.1%)
  • at home was 51 out of every 100 people (51.4%)
  • in a care home was 10 out of every 100 people (10.9%)
  • in a hospice was 12 out of every 100 people (12.4%)
  • were undecided was 14 out of every 100 people (14.2%)

As the disease became worse preferred placed of death changed and the number of people who wanted to die in hospital increased. The final time it was discussed the number of people who preferred to die:

  • in hospital was 19 out of every 100 people (19.3%)
  • at home was 42 out of every 100 people (42.3%)
  • in a care home was 13 out of every 100 people (13.9%)
  • in a hospice was 15 out of every 100 people (15.6%)
  • were undecided was 8 out of every 100 people (8.9%)

The team found that number of people who actually died:

  • in hospital was 57 out of every 100 people (57.7%) 
  • at home was 20 out of every 100 people (20.1%)
  • in a care home was 12 out of every 100 people (12.1%)
  • in a hospice was 10 out of every 100 people (10.1%)

study diagram

The team found there were many factors involved in deciding on the preferred place to die. These included:

  • when the talk about preferred place to die took place
  • who was asked (the patients or their relatives)

Hospital was preferred more often when the talk was closest to death and when it only involved relatives and not the dying person. 

As a person’s preferred place can change over time, this should be discussed and reassessed regularly. 

For people to make meaningful choices there needs to be enough nurses to provide adequate care for those whose desire is to die at home. There also needs to be enough beds at short notice for those wanting to die in a hospice.

Many doctors said that if people nearing the end of their life are to remain at home, GPs and nurses need to know about this as soon as possible, as a lot of help may be needed and this can take time to set up. 

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item) but may not have been published in a medical journal.  The figures we quote above were provided by the research team. We have not analysed the data ourselves.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Dr Debra Howell

Supported by

Marie Curie Cancer Care
NIHR Clinical Research Network: Cancer
University of York
Yorkshire and Humberside Haematology Network

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

9041

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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