A study looking at quality of care for people in the last stages of life (QUALYCARE study)

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Cancer type:

All cancer types

Status:

Results

Phase:

Other

This study asked the opinions of close friends and relatives who were involved in the care of somebody who had died of cancer.

More about this trial

Many people say that they would prefer to be looked after at home and to die at home. But we don’t really know if people have better care at home. And we don’t know if friends and relatives cope any better when somebody dies at home.

Researchers in this study wanted to learn more about the experience of dying of cancer in different settings. For example, some relatives of those in this study died at home, while others died in hospital.

The aim of this study was to find out what family and friends thought about the care their relative had in the last few months of their life.

Researchers hope that the results will help develop ways to improve care and services for patients and families in the future.

Summary of results

The researchers compared the views of people whose loved ones died from cancer at home or in hospital. They particularly looked at experiences in the last week of life.

According to relatives and friends, they found that people who died at home or in hospital had similar levels of pain. But people who died at home were more at peace than those who died in hospital.

This study took place in 4 areas of London:

  • Bromley
  • Islington
  • Westminster
  • Sutton and Merton

The relatives or friends were identified from the records of death registrations. They were the relatives or friends who had registered a death of someone who died from cancer over the period of a year.

They were invited to take part in the study by a letter sent by the Office for National Statistics (ONS) on behalf of the researchers. The relatives or friends were asked to fill in a questionnaire in their own time. The questionnaire took about an hour to complete. It asked questions about:

  • the care and services their relative received in the last months of their life
  • whether or not they think their relative’s needs were met
  • how the death of their loved one may have affected them

596 people filled out the questionnaire. Their loved ones with cancer included:

  • 175 people who died at home
  • 177 people who died in hospital  
  • 199 people who died in a hospice
  • 45 people who died in a nursing home

Pain
The researchers wanted to find out about people’s experiences of pain during the last week of their life. They wanted to know whether this experience was different for people who died at home compared to people who died in hospital.

So the researchers asked friends and relatives whether their loved ones had pain and what the level of pain was. The study team found that:  

  • just over 6 out of 10 people (62%) at home had pain
  • just over 7 out of 10 of people (70%) in hospital had pain

Moderate or overwhelming pain was experienced by:

  • over 4 out of 10 people (44%) at home
  • over 5 out of every 10 of people (53%) in hospital

So the researchers found that these two groups had similar experiences of pain.

Peace
Relatives and friends were asked whether they thought the person with cancer was at peace in the last week of life. People who died at home were reported to feel peaceful more frequently than people who died in hospital.

Dying at home
The study team identified certain factors that meant a person was more likely to die at home. These included:

  • the patient said that they preferred to be at home
  • the relative or friend preferred their loved one to be at home
  • the patient had the support of palliative care Open a glossary item at home in the last 3 months of life
  • the patient had the support of district nurses or community nurses in the last 3 months of life

Grief
The researchers also looked at the grief felt by relatives and friends. They found that those with loved ones who died at home experienced less intense grief, compared to relatives whose loved ones had died in hospital.

The study team found that while most people prefer to die at home, this is not always achieved. The results also showed that some people who die at home do not have a peaceful death and are not free from pain. And some relatives and family are left with intense grief. So services for people at home need to improve.

Recommendations
To make sure that more people can die at home if they want, the researchers recommend that:

  • doctors discuss the wishes of patients and family carers 
  • GPs be proactive and make home visits to patients
  • policy makers (for example, clinical commissioning groups) provide good home care packages and develop ways to support family involvement in a person’s care

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) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. 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

Professor Irene Higginson

Supported by

Cicely Saunders International
Department of Health
King's College London
NIHR Clinical Research Network: Cancer

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

5271

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

Over 60,000 cancer patients enrolled on clinical trials in the UK last year.

Last reviewed:

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