NIHR DC Discover

NIHR Signal A person’s preferred place to die often goes unrecorded in their notes

Published on 16 August 2016

doi: 10.3310/signal-000279

Most people say they do not want to die in hospital, but most people do die there. Where wishes are recorded, care is usually better. The preference was not thought to have been recorded for over 80% of people towards the end of life, in this study.

People whose family knew they had a preferred place of death recorded by healthcare staff in England were more likely to avoid dying in hospital. They also had better home care support, quality of life and pain relief during the last three months of their lives.

A recorded preferred place of death meant patients were over six times more likely to die in their own home than in hospital. Those living in a care home were more than twice as likely to die there if their wishes were recorded.

Despite these benefits, only 10 to 15% of this nationally representative group had a preferred place of death recorded, suggesting end of life care planning in England is incomplete for most.

National policy supports and recommends advanced end of life care planning, including documenting a person’s preferred place of death. This NIHR-funded study suggests implementation is falling short.

Share your views on the research.

Why was this study needed?

More people prefer to die at home than in hospital as long as high quality care can be assured and they do not place too great a burden on their families or carers.

The proportion of deaths at home (in someone’s own home or in a care home) in England is rising slowly, from 38% in 2008 to 45% in 2015, but remains less than half.

Dying at home is an important quality indicator of end of life care and part of this, as emphasised in England’s 2008 End of Life Strategy, involves advance care planning. The person should discuss with healthcare staff their preferences for future care, covering issues such as pain control and where they would prefer to be cared for and to die.

This study investigated whether people expressing a preference for place of death were any more likely to die at home, although this study found a very low rate of recording of their wishes.

What did this study do?

This cross-sectional study analysed data from 49,607 relatives of recently deceased adults as part of the English National Survey of Bereaved People in 2013.

The study looked for links between patients expressing a preference of place of death (assumed to be home) and the place of death on their death certificate. Dying at home was split into those in their own home and those living in a care home.

For patients to be categorised as expressing a preferred place of death, their bereaved relatives had to indicate on the survey that healthcare staff had recorded their preference. This raises some doubts as to the accuracy of the study findings, as it does not take into account cases where healthcare staff knew the preference but the family either were unaware or did not respond to the survey. The survey also included relatives of adults of any age over 18 with sudden, unexpected deaths for whom a preferred place of death would not have been expected to be recorded by a healthcare professional.

What did it find?

  • Most people died at home: 20% in their own home, 32% in a care home and 48% in hospital.
  • Only a minority seemed to have received advance care planning. In total, 10% of those living in a care home and 15% of those living in their own home had a preferred place of death recorded by healthcare staff.
  • Those with a recorded preferred place of death were 6.25 times more likely to die in their own home than in hospital (odds ratio [OR] 6.25, 99% confidence interval [CI] 5.56 to 7.14). The effect was smaller for those living in a care home (OR 2.70 99%CI 2.33 to 3.13).
  • Relatives of those with a recorded preferred place of death were more likely to have received sufficient support to care for the dying person at home. They were also more likely to report the person’s quality of life in the last three months as “outstanding” or “excellent”, and that they had complete pain relief all of the time, compared with those without a recorded preference.

What does current guidance say on this issue?

The 2015 NICE Guideline For Care Of Dying Adults In The Last Days Of Life (NG31) recommends developing, if not done previously, an individualised care plan for the dying person, including their preferred care setting.

Similarly, 2013 NICE Quality Standards on End of Life Care for Adults, and the 2008 Department of Health End of Life Strategy, support seeking and recording a person’s preferred place of care as part of wider advance care planning.

What are the implications?

More people need to have their preferred place of death recorded as it improves their chance of dying where they wish, and was linked to better end of life care. This information must be shared with family members.

The proportion of people whose family knew they had a recorded preferred place of death in the study was low, at just 10 to 15%. This measure was designed as a signal of comprehensive end of life advance care planning more generally, and suggests large scope for improvement in England.

Further research is needed to understand why so few preferences are expressed or recorded, despite national policy supporting this aim since 2008.

Citation and Funding

Dixon J, King D, Knapp M. Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People. BMJ Support Palliat Care. 2016. [Epub ahead of print].

This project was funded by the National Institute for Health Research School for Social Care Research project number T976/EM/LSE6.

Bibliography

DH. End of life care strategy: promoting high-quality care for all adults at the end of life. London: Department of Health; 2008.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

NICE. End of life care for adults. QS13. London: National Institute for Health and Care Excellence; 2011.

Why was this study needed?

More people prefer to die at home than in hospital as long as high quality care can be assured and they do not place too great a burden on their families or carers.

The proportion of deaths at home (in someone’s own home or in a care home) in England is rising slowly, from 38% in 2008 to 45% in 2015, but remains less than half.

Dying at home is an important quality indicator of end of life care and part of this, as emphasised in England’s 2008 End of Life Strategy, involves advance care planning. The person should discuss with healthcare staff their preferences for future care, covering issues such as pain control and where they would prefer to be cared for and to die.

This study investigated whether people expressing a preference for place of death were any more likely to die at home, although this study found a very low rate of recording of their wishes.

What did this study do?

This cross-sectional study analysed data from 49,607 relatives of recently deceased adults as part of the English National Survey of Bereaved People in 2013.

The study looked for links between patients expressing a preference of place of death (assumed to be home) and the place of death on their death certificate. Dying at home was split into those in their own home and those living in a care home.

For patients to be categorised as expressing a preferred place of death, their bereaved relatives had to indicate on the survey that healthcare staff had recorded their preference. This raises some doubts as to the accuracy of the study findings, as it does not take into account cases where healthcare staff knew the preference but the family either were unaware or did not respond to the survey. The survey also included relatives of adults of any age over 18 with sudden, unexpected deaths for whom a preferred place of death would not have been expected to be recorded by a healthcare professional.

What did it find?

  • Most people died at home: 20% in their own home, 32% in a care home and 48% in hospital.
  • Only a minority seemed to have received advance care planning. In total, 10% of those living in a care home and 15% of those living in their own home had a preferred place of death recorded by healthcare staff.
  • Those with a recorded preferred place of death were 6.25 times more likely to die in their own home than in hospital (odds ratio [OR] 6.25, 99% confidence interval [CI] 5.56 to 7.14). The effect was smaller for those living in a care home (OR 2.70 99%CI 2.33 to 3.13).
  • Relatives of those with a recorded preferred place of death were more likely to have received sufficient support to care for the dying person at home. They were also more likely to report the person’s quality of life in the last three months as “outstanding” or “excellent”, and that they had complete pain relief all of the time, compared with those without a recorded preference.

What does current guidance say on this issue?

The 2015 NICE Guideline For Care Of Dying Adults In The Last Days Of Life (NG31) recommends developing, if not done previously, an individualised care plan for the dying person, including their preferred care setting.

Similarly, 2013 NICE Quality Standards on End of Life Care for Adults, and the 2008 Department of Health End of Life Strategy, support seeking and recording a person’s preferred place of care as part of wider advance care planning.

What are the implications?

More people need to have their preferred place of death recorded as it improves their chance of dying where they wish, and was linked to better end of life care. This information must be shared with family members.

The proportion of people whose family knew they had a recorded preferred place of death in the study was low, at just 10 to 15%. This measure was designed as a signal of comprehensive end of life advance care planning more generally, and suggests large scope for improvement in England.

Further research is needed to understand why so few preferences are expressed or recorded, despite national policy supporting this aim since 2008.

Citation and Funding

Dixon J, King D, Knapp M. Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People. BMJ Support Palliat Care. 2016. [Epub ahead of print].

This project was funded by the National Institute for Health Research School for Social Care Research project number T976/EM/LSE6.

Bibliography

DH. End of life care strategy: promoting high-quality care for all adults at the end of life. London: Department of Health; 2008.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

NICE. End of life care for adults. QS13. London: National Institute for Health and Care Excellence; 2011.

Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

Published on 1 June 2016

J Dixon, D King and M Knapp

BMJ Supportive and Palliative Care , 2016

Objectives To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management. Methods We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models. Results Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving ‘outstanding’ or ‘excellent’ care, and of having pain relieved ‘completely, all the time’ while being cared for at home. Conclusions Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships.

An advanced care planning discussion might include:

  • the individual’s concerns and wishes
  • their important values or personal goals for care
  • their understanding about their illness and prognosis
  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.
  • discussion with, and information for, family members.

Expert commentary

This secondary analysis of data from the National Survey of Bereaved People shows that patients who had a recorded preference for dying at home, or in a care home, were more likely to have these preferences fulfilled. This is helpful evidence which supports the role of the advance care planning process in helping to elicit and document these preferences so that they can be acted upon wherever possible. However, it is noteworthy that advance care planning should not be narrowly focused on preferred place of death alone; moreover other studies have demonstrated that factors such as symptom control, not being a burden to their family, etc. are much higher priorities for dying people than the location of death.

Professor Bee Wee, Consultant in Palliative Medicine, Oxford University Hospitals NHS Foundation Trust, and National Clinical Director for End of Life Care, NHS England