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NIHR Signal An end of life strategy probably improved choice of where to die for people with severe respiratory disease

Published on 20 June 2017

doi: 10.3310/signal-000427

Most people prefer not to die in hospital, but the majority of patients with long-term diseases other than cancer end up dying there. In England, an NIHR study based on routine collected national data showed that roll-out of the End of Life Care strategy in 2004 was linked to a reduction in deaths in hospital. The number of deaths here fell by 6% for people with chronic obstructive pulmonary disease (COPD), and 3% for people with interstitial lung diseases. However, hospital deaths did not fall for respiratory patients with other conditions, like heart failure.

The strategy aimed to allow people to die where they chose. It prioritised home care over hospital care, and addressing the needs and preferences of patients and carers.

The fall in the number of hospital deaths is probably the result of the strategy. The results are similar to those observed in cancer care, and the reduction in hospital deaths clearly emerged after the strategy was introduced, and increased after an intensified roll-out in 2008.

To improve impact, early and integrated palliative care approaches are needed, targeting those at highest risk. Particular focus should be on patients with comorbidities and people living in more deprived areas, where place of death has remained unchanged.

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Why was this study needed?

COPD and IPD such as pulmonary fibrosis are progressive respiratory diseases that place a high burden on hospital services. The cost of hospitalisation for IPD alone in the UK in 2010 was £16.2 million. Much of this cost comes from treating those in the advanced stages of their disease, and while many people with progressive disease would prefer to die at home, most die in hospital.

In an attempt to reduce the number of hospital deaths, an End of Life Care strategy was published in the UK in 2004, with an intensification of roll-out in 2008. The strategy emphasised a whole-systems approach and prioritised factors such as care at home, identifying patient preferences, better co-ordination of care, and support for carers.

The aim of the study was to investigate whether the strategy had reduced hospital deaths for patients with these respiratory diseases.

What did this study do?

Data on all deaths from COPD or IPD in England between 2001 and 2014, including place of death, was collected from the Office for National Statistics. Records were linked with the Index of Multiple Deprivation, which takes account of factors such as income, employment and education.

Age- and sex-standardised trends in place of death were then assessed before and after introduction of the End of Life Care strategy.

The study design means it cannot prove whether changes were due to the strategy or other factors. Also, it is not possible to determine if the place of death in individual cases was appropriate or not. However, the strategy’s aim was to reduce the number of hospital deaths, so it is a reasonable outcome measure.

What did it find?

  • Between 2001 and 2014, 380,232 deaths were recorded: 334,520 from COPD and 45,712 from IPD. Annual death rates from both conditions increased over the period, up by 0.9% each year for COPD and 9.2% for IPD.
  • Hospital was the most common place of death (67% in COPD and 70% in IPD), while around one in five died at home. Dying in hospice was rare (0.9% and 2.9%, respectively).
  • The peak number of hospital deaths was around the time of introduction of the programme, between 2003 and 2005. After this, hospital deaths fell by 6% (67% to 61%) for people with COPD and 3% (71% to 68%) for IPD. The falls were derived from a regression model in which the differences in adjusted rates/proportions over the years were statistically significant.
  • However, hospital deaths did not fall for people with additional illnesses – specifically, two or more comorbidities in COPD, or any comorbidity in IPD.
  • Living in a deprived area increased the chances of dying in hospital, while living in a rural area or outside of London decreased chance of hospital death.

What does current guidance say on this issue?

The 2004 End of Life Care strategy (with intensified roll-out in 2008) was developed by the Department of Health to improve care in the last year of life in England. It uses a care pathway approach both for commissioning services and for delivering integrated care. The care pathway involves the steps below:

  • Identifying people approaching the end of life and initiating discussions about preferences for end of life care.
  • Care planning: assessing needs and preferences, agreeing a care plan, and reviewing regularly.
  • Coordination of care.
  • Delivery of high quality services in all locations.
  • Managing the last days of life.
  • Care after death.
  • Support for carers, both during a person’s illness and after their death.

More recently, in 2015, a framework was published for commissioners and others in England to drive improvements in care, including greater equity in access to specialist   palliative care and place of death.

In Wales, a strategic national end of care delivery plan was released in March 2017.

What are the implications?

Future strategies for end of life and palliative care need to address the needs of patients with comorbidity. As well as improving patient experience, this may spare resources. A recent study found the cost-savings of palliative care were largest among patients with comorbidity.

More integrated approaches of earlier palliative care may help, targeting those at highest risk, such as patients with comorbidity and those living in deprived areas and cities. It is important to also consider the different demographic factors associated with COPD and interstitial pulmonary disease.

A review of NIHR funded research on end of life care, Better Endings, including more details of this study, can be downloaded at the NIHR DC website.

Citation and Funding

Higginson IJ, Reilly CC, Bajwah S, et al; GUIDE_Care project. Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors. BMC Med. 2017;15(1):19.

This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (Project number 09/2000/58). Additional support came from the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, part of the National Institute for Health Research (NIHR), and a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust and the charity Cicely Saunders International’s Breathlessness Programme.

Bibliography

Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020 [website].

Department of Health. Long Term Conditions Compendium of Information. London: Department of Health; 2012.

Department of Health. National End of Life Care Strategy. London: Department of Health; 2008.

Gao W, Ho YK, Verne J, et al. Changing patterns in place of cancer death in England: a population-based study. PLoS Med. 2013;10(3):e1001410.

Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012 Aug;23(8):2006-15.

May P, Garrido MM, Cassel JB, et al. Palliative Care Teams' Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities. Health Aff (Millwood). 2016;35(1):44-53.

Navaratnam V, Fogarty AW, Glendening R, et al. The increasing secondary care burden of idiopathic pulmonary fibrosis: hospital admission trends in England from 1998 to 2010. Chest. 2013;143(4):1078–84.

NHS Wales. Palliative and End of Life Care Delivery Plan. Cardiff: Welsh Government; 2017

NICE. Improving Supportive and Palliative Care for Adults with Cancer: The Manual. London: National Institute for Clinical Excellence; 2004.

Why was this study needed?

COPD and IPD such as pulmonary fibrosis are progressive respiratory diseases that place a high burden on hospital services. The cost of hospitalisation for IPD alone in the UK in 2010 was £16.2 million. Much of this cost comes from treating those in the advanced stages of their disease, and while many people with progressive disease would prefer to die at home, most die in hospital.

In an attempt to reduce the number of hospital deaths, an End of Life Care strategy was published in the UK in 2004, with an intensification of roll-out in 2008. The strategy emphasised a whole-systems approach and prioritised factors such as care at home, identifying patient preferences, better co-ordination of care, and support for carers.

The aim of the study was to investigate whether the strategy had reduced hospital deaths for patients with these respiratory diseases.

What did this study do?

Data on all deaths from COPD or IPD in England between 2001 and 2014, including place of death, was collected from the Office for National Statistics. Records were linked with the Index of Multiple Deprivation, which takes account of factors such as income, employment and education.

Age- and sex-standardised trends in place of death were then assessed before and after introduction of the End of Life Care strategy.

The study design means it cannot prove whether changes were due to the strategy or other factors. Also, it is not possible to determine if the place of death in individual cases was appropriate or not. However, the strategy’s aim was to reduce the number of hospital deaths, so it is a reasonable outcome measure.

What did it find?

  • Between 2001 and 2014, 380,232 deaths were recorded: 334,520 from COPD and 45,712 from IPD. Annual death rates from both conditions increased over the period, up by 0.9% each year for COPD and 9.2% for IPD.
  • Hospital was the most common place of death (67% in COPD and 70% in IPD), while around one in five died at home. Dying in hospice was rare (0.9% and 2.9%, respectively).
  • The peak number of hospital deaths was around the time of introduction of the programme, between 2003 and 2005. After this, hospital deaths fell by 6% (67% to 61%) for people with COPD and 3% (71% to 68%) for IPD. The falls were derived from a regression model in which the differences in adjusted rates/proportions over the years were statistically significant.
  • However, hospital deaths did not fall for people with additional illnesses – specifically, two or more comorbidities in COPD, or any comorbidity in IPD.
  • Living in a deprived area increased the chances of dying in hospital, while living in a rural area or outside of London decreased chance of hospital death.

What does current guidance say on this issue?

The 2004 End of Life Care strategy (with intensified roll-out in 2008) was developed by the Department of Health to improve care in the last year of life in England. It uses a care pathway approach both for commissioning services and for delivering integrated care. The care pathway involves the steps below:

  • Identifying people approaching the end of life and initiating discussions about preferences for end of life care.
  • Care planning: assessing needs and preferences, agreeing a care plan, and reviewing regularly.
  • Coordination of care.
  • Delivery of high quality services in all locations.
  • Managing the last days of life.
  • Care after death.
  • Support for carers, both during a person’s illness and after their death.

More recently, in 2015, a framework was published for commissioners and others in England to drive improvements in care, including greater equity in access to specialist   palliative care and place of death.

In Wales, a strategic national end of care delivery plan was released in March 2017.

What are the implications?

Future strategies for end of life and palliative care need to address the needs of patients with comorbidity. As well as improving patient experience, this may spare resources. A recent study found the cost-savings of palliative care were largest among patients with comorbidity.

More integrated approaches of earlier palliative care may help, targeting those at highest risk, such as patients with comorbidity and those living in deprived areas and cities. It is important to also consider the different demographic factors associated with COPD and interstitial pulmonary disease.

A review of NIHR funded research on end of life care, Better Endings, including more details of this study, can be downloaded at the NIHR DC website.

Citation and Funding

Higginson IJ, Reilly CC, Bajwah S, et al; GUIDE_Care project. Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors. BMC Med. 2017;15(1):19.

This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (Project number 09/2000/58). Additional support came from the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, part of the National Institute for Health Research (NIHR), and a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust and the charity Cicely Saunders International’s Breathlessness Programme.

Bibliography

Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020 [website].

Department of Health. Long Term Conditions Compendium of Information. London: Department of Health; 2012.

Department of Health. National End of Life Care Strategy. London: Department of Health; 2008.

Gao W, Ho YK, Verne J, et al. Changing patterns in place of cancer death in England: a population-based study. PLoS Med. 2013;10(3):e1001410.

Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012 Aug;23(8):2006-15.

May P, Garrido MM, Cassel JB, et al. Palliative Care Teams' Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities. Health Aff (Millwood). 2016;35(1):44-53.

Navaratnam V, Fogarty AW, Glendening R, et al. The increasing secondary care burden of idiopathic pulmonary fibrosis: hospital admission trends in England from 1998 to 2010. Chest. 2013;143(4):1078–84.

NHS Wales. Palliative and End of Life Care Delivery Plan. Cardiff: Welsh Government; 2017

NICE. Improving Supportive and Palliative Care for Adults with Cancer: The Manual. London: National Institute for Clinical Excellence; 2004.

Which patients with advanced respiratory disease die in hospital: a 14 year population based study of trends and associated factors?

Published on 1 February 2017

Higginson,IJ; Reilly, C; Bajwah, S; Maddocks M; Gao, W.

BMC Medicine , 2017

Background Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital. Methods This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001–2004), first strategy phase (2004–2008), and strategy intensification (2009–2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs). Results Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004–2005, hospital deaths fell (PRs 0.92–0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01–1.55) than COPD (PRs 1.01–1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94–0.94) or outside London (PRs, 0.89–0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65–74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89–1.04); in COPD, hospital death was associated with being married. Conclusions The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD.

The End of Life Care strategy was developed over a one-year period by an advisory board and six working groups and consultation with over 300 stakeholders. Research evidence was used to inform development of the strategy along with practical experience from:

  • Voluntary hospices, many of which have reflected best practice in end of life care since the foundation of the modern hospice movement by Dame Cicely Saunders at St Christopher’s Hospice in 1967.
  • The NHS End of Life Care Programme (2004–2007), which contributed significantly to the rollout of programmes such as the Gold Standards Framework (GSF), Liverpool Care Pathway for the Dying Patient (LCP) and the Preferred Priorities for Care (PPC).
  • The Delivering Choice Programme currently being run by Marie Curie Cancer Care. This has highlighted the benefits of taking a whole systems approach to the delivery of end of life care.
  • Other examples of innovative practice, which were provided during consultation on the strategy.

From this process a consistent message emerged that a whole systems approach was required and that care pathways were needed both for the commissioning of services and for delivering integrated care for individuals.

Expert commentary

For people with chronic obstructive pulmonary disease (COPD) and interstitial pulmonary disease (IPD), important outcomes include control of symptoms, maintaining quality of life, survival time, and the manner and place of death. 

Whilst the End of Life Care strategy probably had an impact on allowing more COPD and IPD patients to die outside hospital, there was little change for those with multi-morbidity and socio-economic disadvantages. 

We need to change our focus from what is easily measurable, place of death, to providing appropriate levels of care at all stages of illness, especially for those with more complex needs.

Sam H Ahmedzai, Emeritus Professor, University of Sheffield