School of Nursing and Midwifery, Queen’s University Belfast, University Rd, Belfast BT7 1NN, UKUnited Kingdom
Marie Curie Hospice, 1A Kensington Rd, Belfast BT5 6NF, UKUnited Kingdom
Also available as PDF (figures and tables appear in the PDF).
Background There are global challenges in relation to an increasingly older population, rising numbers of deaths and the resulting need for end-of-life care. It is imperative for Health and Social Care to examine where people die and forward plan. Aim To establish the place where people have died 2004-2018 and project future place of death care setting by 2040. Materials and Methods Population-based trend analysis of place of death for people that died in Northern Ireland (2004-2018 from Northern Ireland Statistics and Research Agency) and projections using linear modelling (2019-2040 projections by Office of National Statistics). Results Deaths are projected to increase by 45.9%, from 15,922 in 2018 (of which 36.3% will be aged 85+ years) to 23,231 deaths in 2040 (39.8% aged 85+ years). Between 2004 and 2018, proportions of home and care home (defined as nursing and residential beds) deaths increased (24.5-27% and 16.3-19.4% respectively), while the proportion of hospital deaths declined (51.9-47.6%). If cur-rent trends continue, by 2040, deaths within the community (home and care home) will account for between 46.7-55.2% of all deaths. However, if care home capacity is limited at current levels (as of 2018), hospital deaths are projected to account for the largest proportion of deaths by 2040 (51.7%). Discussion Death at an increasing age has implications for end-of-life care provision. This study demonstrates an increasing need for end-of-life care over the next 20-years, particularly within community settings. Projections highlight the need for comprehensive planning to ensure service provision within the community meets the needs of the population.
Keywords: Trend analysis; Place of death; Community palliative care
There are global challenges in relation to an increasingly older population, rising numbers of deaths and the resulting need for end-of-life care. It is imperative for Health and Social Care to examine where people die and forward plan.
To establish the place where people have died 2004-2018 and project future place of death care setting by 2040.
Population-based trend analysis of place of death for people that died in Northern Ireland (2004-2018 from Northern Ireland Statistics and Research Agency) and projections using linear modelling (2019-2040 projections by Office of National Statistics).
Deaths are projected to increase by 45.9%, from 15,922 in 2018 (of which 36.3% will be aged 85+ years) to 23,231 deaths in 2040 (39.8% aged 85+ years). Between 2004 and 2018, proportions of home and care home (defined as nursing and residential beds) deaths increased (24.5-27% and 16.3-19.4% respectively), while the proportion of hospital deaths declined (51.9-47.6%). If current trends continue, by 2040, deaths within the community (home and care home) will account for between 46.7-55.2% of all deaths. However, if care home capacity is limited at current levels (as of 2018), hospital deaths are projected to account for the largest proportion of deaths by 2040 (51.7%).
Death at an increasing age has implications for end-of-life care provision. This study demonstrates an increasing need for end-oflife care over the next 20-years, particularly within community settings. Projections highlight the need for comprehensive planning to ensure service provision within the community meets the needs of the population.
Trend analysis; Place of death; Community palliative care.
uring the last three decades, the age at which people die has changed significantly. Of note, in 1990 nearly one- quarter D of deaths were in children (<5-years). Yet, by 2017 the over-70s percentage of deaths have increased from a third to half of all deaths.1 This is representative of the world’s aging population which continues to grow at an unprecedented rate.2 By 2043, the overall population growth rate in Northern Ireland is projected to be just over half of that in England, however, the pension age population will grow at a faster rate than anywhere else in the
cc Copyright 2021 by Reid J. This is an open-access article distributed under Creative Commons Attribution 4.0 International License (CC BY 4.0), which allows United Kingdom (UK).3 Indeed, the Northern Ireland Statistics and Research Agency (NISRA) have estimated that by 2043 the number of people aged 85+ will grow by 106.4% and the number of people aged 65+ is projected to increase by 56.2%, representing 24.2% of the total population. A consequence of living longer is that older people are surviving with complicated health and social care needs. It is estimated that one in four people in the UK are living with multimorbidity, increasing to at least two-thirds of those aged 65+. Ultimately, the expected rise in the number of older people living with multimorbidity will mean increased pressure on services and the need for greater resourcing of these services, as
well as workforce planning, infrastructure, investment and reconfiguration.5 The increase in our aging population presents several public health challenges that we need to prepare for, not least an increased demand on health and social services but also quality end-of-life care.
Approximately 14% of people in need of palliative care will receive such care.6 The reasons that some people miss out include, but are not limited to, workforce pressures (e.g. excess professional demands on current staff; need for informal carers 7 8 to remain in the workforce)7 funding distribution,8 disconnected 9,10 11 infrastructure, barriers to care as a result of diagnosis, issues in identifying palliative care need as well as social and culture taboos around dying and death.12 Without addressing these issues collectively as research priorities, clinical practice cannot be transformed and therefore quality of life will not be improved. With the growing annual death rate, across the UK and Ireland, this also implies growing numbers of people involved in caring for the dying and who are bereaved. However, limited evidence also pertains to those with pivotal roles in palliative and end-of-life care as patients and families remain ‘voiceless’. Few prospective studies have examined basic questions such as preferences of place of death for those living and dying in Northern Ireland which is fundamental to identifying end-of-life care needs.
Although dying at home is a common preference for in- 15,16 dividuals with a terminal illness when confronted with the consequences of a terminal illness, dying at home may not be viable.17 A Northern Ireland Public Health Agency18 survey of bereaved carers reported a greater proportion of carers did not know if the place of death was aligned with their loved one’s preferences (37%) and when the preferred place of death was known, over one third (35%) reported their loved one’s death did not take place in their preferred place of death. A study by Bannon and colleagues also reported 53.4% of patients who wanted to die at home achieved their preference, however, this was dependent upon certain factors including living in an affluent area, access to good district nursing care, previous conversations about place of death with health professionals, and the caregiver’s preference for their loved one to die at home.16 Increasing awareness about palliative care continues to be limited due to a reluctance to discuss death and dying and a lack of experiences with health services.12
Achieving preferred place of death matters to the patient and their immediate family and carers and is also considered a good quality marker for end-of-life care by service providers. In addition, such fulfilment helps with the bereavement process. However, it is not clear if these needs are being met within current palliative care provision in Northern Ireland. By conducting a trend analysis, we can provide the context by which to understand current and projected place of deaths in Northern Ireland to explicate service requirements for those at the end-of-life to meet the expected rising number of deaths from the growing elderly population.
Population-based trend analysis was conducted using simple linear
modelling. Explicit assumptions to project where people will die in Northern Ireland, based on recent death registration data (2004- 2018) were applied. Methodology was replicated and built upon 2 20 from Bone et al2 and Finucane et al.20
The Northern Ireland Statistics and Research Agency provided the dataset. This included all registered deaths by place of occurrence between 2004 and 2018 categorised by sex, age (0-4 years, 5-14, 15- 44, 45-64, 65-74, 75-84, 85 and over) and place of death (‘hospital’, ‘care home’, ‘own home’, ‘hospice’, and ‘all other places’). Data was used to project future deaths and place of death in Northern Ireland (2019-2040).
Projections by the Office of National Statistics (ONS) ‘2018-based national principal population projections’ were used for all deaths in Northern Ireland up to 2040 (using age and gender specific proportions) with the observed place of death from 2004 to 2018 from NISRA. We applied estimated age and gender-specific proportions of deaths for place of death to the projected death, based .2,20 on established methodology We modelled three scenarios:
• Scenario 1 assumed no change in the age and gender specific proportions of deaths observed in 2018 in each place of death. • Scenario 2 assumed that the mean yearly change in age and gender specific proportions of deaths in each place of death that occurred between 2004 and 2018 continues to 2040.
• Scenario 3 assumed that the yearly change in age and gender specific proportions of deaths in each place of death that occurred between 2004 and 2018 continues to 2040, but that care home deaths do not increase above the number observed in 2018, with any additional deaths instead occurring in hospital.
No ethical review was required as data was publicly available via the ONS and NISRA.
Figure 1 shows the number of deaths per year in Northern Ireland between 2004 (n=14,354) and 2018 (n=15,922).
In Northern Ireland in 2018, more men died in their own home (30.0% vs. 24.1%), in hospital (49.6% vs. 45.7%) and ‘All 19 other places’ (3.7% vs. 1.8%) compared to women. More women died in care homes (25.1% vs. 13.5) and hospices (3.4% vs. 3.1%) compared to men (Figure 2). See supplement files for data.
Figure 3 shows the most common place of death between 2004 and 2018. Hospital is the most common care setting however by 2018, deaths in hospital, hospice and ‘all other places’ decreases whereas deaths at home and care home increase.
Table 1 demonstrates between 2004 (14,354) and 2018 (15,922) deaths increased by 10.9% in Northern Ireland. There will be a (based on ONS projected deaths) 45.9% increase in the number of deaths in Northern Ireland by 2040. ONS projected deaths suggest deaths in Northern Ireland will increase from 15,922 in
Figure 1. Based on NISRA Total Number of Deaths between 2004 and 2018
In addition, those aged 75 and above will account for 71.7% of all deaths by 2040.
Table 1. Percentage of Observed Deaths (2004, 2018) and Projected Deaths by Age (2040)
0-4 144 1.0% 107 0.7% 97 0.4% 5-14 29 0.2% 22 0.1% 22 0.1% 15-44 612 4.3% 556 3.5% 574 2.5% 45-64 2150 15.0% 2204 13.8% 2174 9.4% 65-74 2697 18.8% 2717 17.1% 3733 16.1% 75-84 4813 33.5% 4544 28.5% 7385 31.8% 85 + 3909 27.2% 5772 36.3% 9247 39.8% Total (% 14354 - 15922 (+10.9%) 23231 (+45.9%) increase) * ONS projections
By 2040, the majority of age groups show a decline in proportional percentage of deaths (0-4, 5-14, 15-44, 45-64 and 65- 74). However, those aged 75-84 and those aged 85+ have a projected increase in deaths (3.3% and 3.5% respectively) (Figure 4).
Figure 4. Age Specific ONS Projections for Death Trends for Northern Ireland by 2018 - 2040
Table 2 provides summary data for scenario-based calculations.
Figure 5 (Scenario 1) shows that, if the proportional percentage of deaths in all care settings stay the same as of 2018 (adjusted for projected changes in age and sex), hospital continues to be the largest setting where deaths occur by 2040 (n=11,175). This is followed by deaths at home (n=6044), care home (n=4798), hospices (n=692) and other places (n=521).
Figure 5 (Scenario 2) shows that, if the mean annual proportional percentage change trend continues between 2004 and 2018 at the same pace through to 2040, there will be a greater increase in home (+14.8%) and care home (+24.7%) deaths. Hospital deaths will experience a declining trajectory resulting in a reduction in the proportional percentage (-14.3%). Hospice (-6.1%) and ‘other places’ (-66.6%) will also see a decrease in deaths. By 2040, over 50% of deaths will occur in the community setting, however hospitals will continue to have the single greatest percentage of deaths.
Figure 5 (Scenario 3) shows that, if capacity of care homes was capped at 2018 level (n=3092), the additional people would die in hospital. Hospital deaths would account for an in-
11175 48.1% 9474 40.8% 12013 51.7% 4798 20.7% 5631 24.2% 3092 13.3% 6044 26.0% 7192 31.0% 7192 31.0% 692 3.0% 716 3.1% 716 3.1% 521 2.2% 218 0.9% 218 0.9% 14354 100.0% 15922 100.0% 23231 100.0% 23231 100.0% 23231 100.0%
Figure 5. Proportional Percentage of Deaths in All Care Settings Remain the Same as of 2018 creased proportion of deaths by 2040 (51.7%; +2539 deaths). See supplement file for data.
The current analysis suggests that if Northern Ireland trends continue, the need for end-of-life care will increase over the next 20-years, particularly within community settings. By 2040, deaths within the community could account for over 50% of all deaths (combined home and care home deaths across all projected scenarios; 46.7%-55.2%). Additional and effective provision of community capacity could decrease hospital deaths to 40.8%. However, with the continuing lack of sustainable social care resourcing, hospital deaths are likely to increase, accounting for approximately 51.7% of deaths. These findings for Northern Ireland align with death projections across Scotland,20 England and Wales,2 which reported a significant increase in people dying outside hospital by 2040. In addition, such forecasts are aligned with other ageing countries.21 Collectively, these studies draw attention to the urgent need for a shift of care and resources into care within the community across the United Kingdom.
However, despite an integrated structure for Health and Social Care in Northern Ireland, services for those at the end-oflife face a number of significant challenges. Issues with identification of palliative care needs and other barriers, such as challenges eliciting advance care planning discussions, mean that not every patient who could benefit from a palliative approach to their care in Northern Ireland receives it. This is evident, for instance, in the low number of people on the Northern Ireland Palliative Care Register relative to rates of chronic and incurable illness.
The underfunding of community services and other issues, including the care workforce, are significant problems in Northern Ireland22 and it has been recognized that ‘radical’ reform is needed to Northern Ireland’s adult social care system in order to deliver higher-quality, sustainable services and an experienced and skilled workforce which is properly valued.23 While community care, specifically the care home setting, will become increasingly important for end-of-life care–particularly in the context of the growing prevalence of dementia–the social care resourcing settlement in Northern Ireland has not kept pace with the growth in demand arising from demographic changes. For example, the number of nursing home beds in Northern Ireland increased by 10% between 2008 and 2018, but this is less than half the percentage growth of the 65+ population.11 The issue is also evident from the significant number of delayed hospital bed days attributable to shortages of domiciliary care packages and care home beds. In 2017/18, lack of domiciliary care packages was the single biggest cause of delayed bed days across Northern Ireland, accounting for 12,940 delayed bed days, with the shortage of care home beds accounting for a further 7,775 delayed bed days.24 In the context of the issues outlined above, it will be a concern that the delivery of social care reform proposals, as set out under the Power to People report, has been assigned an amber risk warning in terms of potential delay due to the coronavirus disease-2019 (COVID-19) outbreak.23
Moreover, an ever-growing number of people are becoming carers in Northern Ireland, with an estimated 22% of adults now providing unpaid care.25 This carries a significant additional burden for carers and families including mental illness and worsened physical health as a result of caring26–particularly for those carers who themselves are aged 65+ and may also be coping with their own health complaints. Despite this impact, Northern Ireland is lagging behind the rest of the UK in terms of updated strategies and legislation to support informal carers; unlike Scotland and England, which have taken measures including granting new rights to carers and introduced additional financial supports.
The current COVID-19 pandemic has further underlined the pre-existing problems facing community care, particularly st within the care home setting. NIRSA reported, as of 21 August 20 2 2020, care home deaths accounted for 40.3% (n=351) of COV- ID-19 related deaths. In addition, deaths of care home residents during the pandemic accounted for 49.5% of all COVID-19 related deaths in Northern Ireland (81.4% occurring in care homes and 18.6% in hospital). A similar trend was reported showing dying in care homes trebled during the first 10-weeks of the COVID-19 pandemic in England and Wales.
Notwithstanding the COVID-19 pandemic, healthy life expectancy has increased, but not as much as life expectancy overall. This means more people are dying older and spending more years in poor health. To meet the increased population palliative care needs, Finucane et al identified opening a realistic debate on death, dying and bereavement within society, which previous policies have precluded to, as a key priority. However, despite efforts from the Department of Health, Public Health Agency and other stakeholders, Northern Ireland has made limited progress in this area.
Overall, this Northern Ireland research identified key priorities similar to the Scottish place of death trends research : (i) action to ensure health and social care services for those at the end-of-life are fully resourced and sustainable, in order to meet patient needs across care settings, (ii) focus on building supports and resilience for informal carers, and (iii) opening a realistic debate on death, dying and bereavement within society, which previous policies have precluded to. However, as previously discussed, Northern Ireland has additional challenges at policy, commissioning and service delivery levels which require urgent attention in order to meet these priorities. Palliative and end-of-life care research in Northern Ireland also lags behind the rest of the UK, with a lack of outcome-based studies. Palliative care research across Ireland has consisted of mostly needs-based and small-scale studies, with a lack of literature on minority groups such as those living in transitional housing, with mental health problems, pre-existing disabilities, homeless people and those who identify as LGBTQ+. As research is vital for informing policy and decision-making, funding for community-based palliative and end-of-life care research also needs to be a key priority going forward.
This study highlights the increasing need for end-of-life care over
the next 20-years, particularly within community settings across the UK. Death at an increasing age has serious implications for end-of-life care provision, and it is unclear at present whether health and social care services in Northern Ireland, as they are currently constituted and resourced, will be sufficient to meet future demand. This study’s place of death projections, current policy and research evidence further demonstrate that Northern Ireland requires urgent prioritization for community care resourcing, and increased research capacity to ensure community settings can meet the fundamental care and specialist support needs of those at the end-of-life.
The authors declare that they have no conflicts of interest.