NIHR DC Discover

NIHR Signal UK-wide study reveals a pattern of delay in referrals to specialist end-of-life care

Published on 14 August 2018

doi: 10.3310/signal-000635

Referrals to hospice-based specialist palliative care occur closer to death in older than in younger people and in those without cancer. Existing evidence shows that some people near the end of life have a better quality of life and symptom control if they receive specialist palliative care. This research highlights the need to better understand the reasons for any delay.

In this large NIHR-funded hospice study people aged under 50 years were referred to hospice specialist palliative care about a month before people over 75 years. People with dementia or stroke were referred about nine days before death compared to much earlier for those with other diseases. The majority of people in hospice specialist care had cancer.

It would be useful to understand why these variations exist and if there are ways that could improve appropriate referral.

Share your views on the research.

Why was this study needed?

Providing good end of life care is an NHS priority. It ensures that people can die with dignity, with access to appropriate specialist care and wherever possible in a setting of their choosing (e.g. in a hospice or at home). Studies have shown that relatives of deceased people report lower satisfaction rates with end of life care in hospitals than people whose relatives died at home with or without hospice support. Despite this, many people in the UK still die in hospital.

In the UK around 95% of inpatient beds for specialist palliative care are hospice-led (88% are charitable organisations, and 12% are NHS units). Hospice UK, the national charity for hospice care, supports over 200 hospices, which collectively provide care to 200,000 people with terminal or life-limiting illnesses and their families every year.

Around the UK, there is variation in the availability of hospice care, and the patterns of referrals to end of life services are poorly understood. This study sought to understand hospice use by collecting data on timings of referral for people who had died in 2015. Previous service research had relied on hospital episode statistics data, whereas this study aimed to survey all UK hospices directly.

What did this study do?

This was a retrospective review of data collected from clinical notes in 64 UK hospices. The study included 42,758 adults aged over 17 years who passed away in these facilities from January to December 2015. Participating hospices represented a third of UK hospices covering different geographical locations, sizes and both charity and NHS-managed sites.

Because the study relied on existing, routinely collected data, there were gaps in the information. In particular, data were missing on the ethnicity of patients. Data on some other sources of potential health inequality were also not routinely available, such as sexual orientation and homelessness status. The authors acknowledge these limitations and did not draw firm conclusions based on this data. This sort of study is best for understanding patterns within health services.

What did it find?

  • Forty-eight days was the average (median) time between referral for hospice specialist palliative care and death (interquartile range [IQR] 13 to 157 days).
  • About 40% of referrals (17,122 of 42,758 referrals) were made within 30 days of death. People living in Wales had the shortest time of just 17 days (IQR 6 to 49 days).
  • Older people aged 75 years or more and were referred later, 39 days before death (IQR 10 to 135 days) compared with 59 days for younger people aged 50 to 74 years (IQR 17 to 175 days) and 78 days for those aged under 50 years (IQR 21 to 225 days).
  • People with motor neurone disease were referred on average at 109 days before death, and among people with breast cancer, the average was 81 days. Average times for people with dementia or stroke was 9 days.
  • Most hospice patients in the UK had cancer (77%). London had the highest proportion of non-cancer patients (30.2% whereas Wales and Scotland has the lowest (10.3 and 10.0% respectively).

What does current guidance say on this issue?

International guidance on palliative care referral in cancer care (2018) recommends specialist palliative care referral within eight weeks of diagnosis of advanced disease for patients with cancer.

NICE guidelines on the last days of life (2015) recommend that the dying person’s preferred care setting is discussed and recorded as part of their individualised care plan. This care plan should then be shared with the person dying, the people who are important to them and their multidisciplinary care team. The care plan should also be reviewed and updated. If it is not possible to meet someone’s wishes in any way, this should be explained to them and the people important to them.

What are the implications?

This study is the first to provide detailed data on patterns of referrals to UK hospices. This highlights variations in referral patterns that depend on your age, disease and where you live.

This complements other research that shows lack of identification of palliative care need amongst patients in the acute hospital setting. It would be useful if future research could explore the reasons behind these variations. The data suggest that non-specialist staff may require additional support to recognise the signs of death sooner to enable earlier referral to specialist services if appropriate.

Citation and Funding

Allsop MJ, Ziegler LE, Mulvey MR, et al. Duration and determinants of hospice-based specialist palliative care: a national retrospective cohort study. Palliat Med. 2018; Jun 6. DOI: 10.1177/0269216318781417.

This project was funded by the National Institute for Health Research Programme Grants for Applied Research programme (project number RP-PG-0610-10114).

Bibliography

Gardiner C, Gott M, Ingleton C, et al. Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK. Palliat Med. 2013;27(1):76-83.

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

Osman H, Shrestha S, Temin S, Ali ZV, Cleary JF. Palliative care in the global setting: ASCO resource-stratified practice guideline summary. J Oncol Pract. 2018;14(7):431-36.

Why was this study needed?

Providing good end of life care is an NHS priority. It ensures that people can die with dignity, with access to appropriate specialist care and wherever possible in a setting of their choosing (e.g. in a hospice or at home). Studies have shown that relatives of deceased people report lower satisfaction rates with end of life care in hospitals than people whose relatives died at home with or without hospice support. Despite this, many people in the UK still die in hospital.

In the UK around 95% of inpatient beds for specialist palliative care are hospice-led (88% are charitable organisations, and 12% are NHS units). Hospice UK, the national charity for hospice care, supports over 200 hospices, which collectively provide care to 200,000 people with terminal or life-limiting illnesses and their families every year.

Around the UK, there is variation in the availability of hospice care, and the patterns of referrals to end of life services are poorly understood. This study sought to understand hospice use by collecting data on timings of referral for people who had died in 2015. Previous service research had relied on hospital episode statistics data, whereas this study aimed to survey all UK hospices directly.

What did this study do?

This was a retrospective review of data collected from clinical notes in 64 UK hospices. The study included 42,758 adults aged over 17 years who passed away in these facilities from January to December 2015. Participating hospices represented a third of UK hospices covering different geographical locations, sizes and both charity and NHS-managed sites.

Because the study relied on existing, routinely collected data, there were gaps in the information. In particular, data were missing on the ethnicity of patients. Data on some other sources of potential health inequality were also not routinely available, such as sexual orientation and homelessness status. The authors acknowledge these limitations and did not draw firm conclusions based on this data. This sort of study is best for understanding patterns within health services.

What did it find?

  • Forty-eight days was the average (median) time between referral for hospice specialist palliative care and death (interquartile range [IQR] 13 to 157 days).
  • About 40% of referrals (17,122 of 42,758 referrals) were made within 30 days of death. People living in Wales had the shortest time of just 17 days (IQR 6 to 49 days).
  • Older people aged 75 years or more and were referred later, 39 days before death (IQR 10 to 135 days) compared with 59 days for younger people aged 50 to 74 years (IQR 17 to 175 days) and 78 days for those aged under 50 years (IQR 21 to 225 days).
  • People with motor neurone disease were referred on average at 109 days before death, and among people with breast cancer, the average was 81 days. Average times for people with dementia or stroke was 9 days.
  • Most hospice patients in the UK had cancer (77%). London had the highest proportion of non-cancer patients (30.2% whereas Wales and Scotland has the lowest (10.3 and 10.0% respectively).

What does current guidance say on this issue?

International guidance on palliative care referral in cancer care (2018) recommends specialist palliative care referral within eight weeks of diagnosis of advanced disease for patients with cancer.

NICE guidelines on the last days of life (2015) recommend that the dying person’s preferred care setting is discussed and recorded as part of their individualised care plan. This care plan should then be shared with the person dying, the people who are important to them and their multidisciplinary care team. The care plan should also be reviewed and updated. If it is not possible to meet someone’s wishes in any way, this should be explained to them and the people important to them.

What are the implications?

This study is the first to provide detailed data on patterns of referrals to UK hospices. This highlights variations in referral patterns that depend on your age, disease and where you live.

This complements other research that shows lack of identification of palliative care need amongst patients in the acute hospital setting. It would be useful if future research could explore the reasons behind these variations. The data suggest that non-specialist staff may require additional support to recognise the signs of death sooner to enable earlier referral to specialist services if appropriate.

Citation and Funding

Allsop MJ, Ziegler LE, Mulvey MR, et al. Duration and determinants of hospice-based specialist palliative care: a national retrospective cohort study. Palliat Med. 2018; Jun 6. DOI: 10.1177/0269216318781417.

This project was funded by the National Institute for Health Research Programme Grants for Applied Research programme (project number RP-PG-0610-10114).

Bibliography

Gardiner C, Gott M, Ingleton C, et al. Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK. Palliat Med. 2013;27(1):76-83.

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

Osman H, Shrestha S, Temin S, Ali ZV, Cleary JF. Palliative care in the global setting: ASCO resource-stratified practice guideline summary. J Oncol Pract. 2018;14(7):431-36.

Duration and determinants of hospice-based specialist palliative care: A national retrospective cohort study

Published on 6 June 2018

M Allsop, L Ziegler, M Mulvey, S Russell, R Taylor, M Bennett

Palliative Medicine , 2018

Background: Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. Aim: To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. Design: This is a retrospective cohort study. Setting/participants: A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. Results: Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) (p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50–74 years (59 days), and 75 years and over (39 days) (p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis (p < 0.001). Conclusion: Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.

Expert commentary

The need for palliative care in England is rising, driven by an increase in the number of deaths that occur each year as a result of the ageing population. To understand how specialist services should respond to this future challenge it is necessary to understand current service provision.

This study found hospice care is introduced on average 48 days before death. Perhaps not surprisingly, younger people and those with cancer were more likely to receive hospice care early in their illness trajectory. For people with dementia, the average time spent under hospice care was just nine days.

This study adds to the body of evidence describing inequalities in care for people who are dying. Research into models of care is needed to understand the potential solutions.

Dr Katherine E Sleeman, NIHR Clinician Scientist & Honorary Consultant in Palliative Medicine, Kings College London

Expert commentary

This national cohort study provides, for the first time, comprehensive and detailed information about patterns of hospice use in the UK. It shows that UK hospices predominantly care for those with advanced illness only in the last few weeks of their life. Those with advanced illness, therefore, miss out on the considerable benefits of early referral. Those who are older or with non-cancer conditions miss out on care the most.

Hospice care is known to improve wellbeing, increase family support, and reduce adverse outcomes from bereavement. Patients, public and especially professionals need to understand these benefits and refer much earlier for palliative and hospice care to be able to fully deliver these benefits.

Dr Fliss Murtagh, Professor of Palliative Care, Hull York Medical School

Expert commentary

This first study of the duration of UK hospice care prior to death makes concerning reading.

Most people only receive last weeks of life hospice care: over half of referrals are within seven weeks of death, 40% within four weeks with later referrals for older people and in non-cancer illness. While not all will need specialist hospice services, as the population ages and increasingly approach the end of their lives with multiple comorbidities, there is a need for hospices services to adapt and re-orientate to address the population needs.

Better integration with primary and hospital services is to be encouraged as are increased resources to meet this need.

Dr Stephen Barclay, University Senior Lecturer in General Practice & Palliative Care, General Practitioner & Honorary Consultant Physician in Palliative Care, University of Cambridge