Unequal ends: A systematic review comparing place of death in rural,coastal and urban areas for older people with dementia to cancer

Abstract

Background:

Despite the growing older population with increased chronic conditions in rural and coastal areas, it is currently unclear how location impacts where people die.

Aim:

To compare where people with dementia and people with cancer die across rural, coastal and urban areas, and examine associated factors.

Design:

A systematic review reported in accordance with PRISMA guidelines.

Data sources:

MEDLINE, PsycINFO, CINAHL, Embase and ASSIA databases were searched 2005–November 2024.

Results:

Twenty-nine studies were included. Fifteen studies compared rural and urban populations, eleven urban only, two coastal urban and one rural. No studies considered the coastal context when examining place of death. 6,988,050 cancer and 3,517,909 dementia decedents were included across seventeen cancer studies, nine dementia, and three both. All studies were rated high quality. Rural, dementia decedents were more likely to die in residential care than urban residents, who were more likely to die in hospital. Large studies of cancer populations found trends towards home deaths for rural residents and hospital for urban, but this was inconsistent across countries. Thirteen studies reported factors associated with place of death for people with cancer, compared to four dementia.

Discussion:

Hospital deaths appear more common in urban areas, with more home/care home deaths in rural areas. Coastal patterns are poorly described. Better understanding how these locations are associated with place of death, especially for people with dementia, is needed to guide more equitable, efficient service planning. Further work on associated factors will support a nuanced understanding of drivers of place of death.

Keywords

dementia neoplasms rural population urban population sea coast systematic review

What is already know about the topic?

Understanding place of death is vital for service planning and delivery.

People with dementia often experience less access to palliative care and other supportive services at the end of life, as compared to people with cancer.

The rural and coastal older populations are growing and predicted to grow further in the coming years alongside increases in chronic conditions, such as dementia and cancer.

What the paper adds?

This review found that hospital deaths are more likely for urban residents and home deaths are more likely for all rural residents.

A disproportionate amount of palliative and end of life care research focuses on urban populations, despite many older people living outside of urban areas. When rural populations are considered, this is often in comparison to urban populations. Coastal populations are little considered.

Factors associated with place of death in rural and coastal areas and for people with dementia remain underexplored.

Implications for practice, theory or policy

Alongside urban and rural classifications, coastal settings should be explicitly recorded and analysed to better understand and plan for variations in place of death.

The refinement of the conceptual model could inform the allocation of resource to support service expansion and delivery in rural and coastal areas, but further research is required.

It is recommended that future research focuses on where rural and coastal populations are likely to die and the factors that are associated with place of death in these areas, with a particular focus on service-level factors and preferences.

Introduction

Understanding where people die is vital to support the planning and delivery of health and social care services.¹ However, where people are dying is changing.^1–5 There are a multitude of reasons why, including expansion in care home bed availability, changes in governmental policy and ‘shifts’ in causes of death,^3,4 among others. It is not only the setting (i.e. hospital and home) in which people are dying that is changing¹ but the geographical location in which people are dying is changing too. Specifically, the number of deaths in rural and coastal areas is rising and is largely driven by increasingly older populations.^6–9 As people age, they tend to move out of urban areas into rural and coastal areas in retirement, while younger people tend to leave for education and employment opportunities in large cities. This results in fewer younger residents to support the older population and to fill roles in the health and social care workforce.^10,11 Adding to the population challenges, rural and coastal populations often experience issues accessing healthcare due to inadequate travel and transport infrastructures^12,13 to urban health service hubs. This is a particular disadvantage for the older population in coastal areas who experience an age- and sex-adjusted excess of chronic conditions, such as dementia and cancer, compared to their inland counterparts.¹¹ This is going to become an increasingly pressing issue for these communities as the number of people living with dementia is projected to more than double in 20 years¹⁴ and, alongside cancer, see the largest increases in deaths requiring palliative care support.¹⁵

The conditions people live with in their final years play a large contributing role in where they die, with people with cancer more likely to die at home^16,17 and people with dementia more likely to die in a care home or hospital.^3,17 Place of death is also often used as a marker of quality of care at the end of life^18,19 with home deaths seen as indicative of high-quality care that is aligned with patient and family preferences.²⁰ Home deaths also tend to be more likely for people with cancer due to improved access to palliative care services, and the opportunity to actively discuss their preferences with family.^16,21–24 Conversely, people with dementia often experience poorer access to specialist palliative care services^25,26 that might enable them to stay at home to die²⁷ and potentially less able to communicate wishes at the end of life.²⁸ Instead, many people with dementia die in a hospital,^3,29 which is indicative of aggressive care at the end of life¹⁸ and the preference of few.³⁰ As people with dementia also tend to be older than people with cancer, it may also mean that they are more likely to live in a rural area with reduced access to specialist palliative care, and other, services.

Geographical locations, such as rural, coastal and urban areas, have received little research attention thus far. Where reviews have examined health outcomes in varying locations, they more often focus on the accessibility and availability of care services in these areas,^13,31–33 and place of death is overlooked. Further, where there is existent examination of the evidence, it often focuses on rural and urban locations with coastal areas missing from the evidence base, despite the identified increased presence of chronic conditions in coastal areas.¹¹ Where place of death is considered, the focus of the review is often condition specific with rural/urban location considered as a factor associated with place of death.^22,34 Further, these reviews group associated factors around: the individual, such as age and sex, the illness, such as severity and function, the environmental, such as household set up and access to healthcare services, and services such as healthcare availability, but do not consider how these factors may vary by urban, rural and coastal locations.

Therefore, the primary aim of this systematic review was to examine the international evidence base on where older people with dementia and older people with cancer die in rural, coastal and urban areas. In addition, we aimed to identify any factors associated with place of death by location and condition.

Methods

The reporting of this systematic review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist (Supplemental Appendix 1). This review was not registered but the review protocol can be accessed via the corresponding author.

Search strategy

Five databases, MEDLINE, PsycINFO, CINAHL, Embase and ASSIA, were searched for papers published in English from January 2005 to 21st November 2024. The search strategy was developed with support from an information specialist and included terms related to place of death, condition and geographical location (Supplemental Appendix 2). Reference chaining and citation tracking were undertaken to complement the search strategy.

Eligibility criteria

Criteria for assessing the relevance of selected papers was outlined using the PICO-ST (Population, Intervention, Comparator, Outcome – Study design, Time) framework (Table 1).³⁵

Table 1.

Eligibility criteria according to PICO-ST framework.³⁵

PICO-ST criteria	Inclusion criteria	Exclusion criteria
Participants	All older adult decedents with any type of dementia or cancer (populations must >80% with dementia or cancer and over the age of 65 years or results stratified by age or, where age isn’t provided, type of cancer more typical in older age)	Accidental deaths Population <65 years old (<80% are over 65 years) Deaths of or with conditions other than dementia or cancer (<80% do not have cancer/dementia)
	All studies where place of death is stratified by named geographical city, town or village, or is defined as ‘rural’, ‘coastal’ or ‘urban’	Geographical location (i.e. name of city/town/village or rural/coastal/urban categorisation) of death is not reported
Interventions	Any	-
Comparators	Any	-
Outcomes	Place of death	Any other outcome including survival, mortalityAny studies examining the effects the COVID-19 pandemic
Study design	Any design reporting original quantitative data	Opinion pieces, conference abstracts, presentations, editorials, case reports, case-series, reviews, protocols, and qualitative designs.
Time	Studies conducted in the last 20 years (where longitudinal data is collected, only data from 2004 onwards is extracted)	Studies published or include data collected prior to 2004

Papers were included that detailed the rural, coastal and/or urban location and setting of death for people who died of any type of dementia or cancer, aged 65 years or older. Factors associated with place of death were extracted from studies where rural, coastal and/or urban location could be determined.

Study selection

Identified papers were managed in EndNote 20 reference management system. One researcher (ITJ) reviewed the title and abstracts of all identified papers for inclusion. The same researcher reviewed all full text papers for inclusion, with 20% double checked by a blind researcher (RLC). Any disagreements in included papers were resolved through discussion.

Quality appraisal

Quality appraisal was conducted using the QualSyst tool³⁶ for all included papers. QualSyst is a standardised 14-item tool developed for the assessment of quality of published quantitative studies. Quality appraisal was used in the interpretation of findings and therefore, no paper was excluded based on the quality assessment. Papers were graded as high (⩾0.8), medium (⩾0.6–0.79) and low (<0.6).^34,37 All papers were appraised by two researchers (ITJ and RLC), with disagreement or divergence in scores discussed and remedied.

Data extraction and synthesis

Data extraction was completed using a bespoke Excel template. The template was informed by the review aims and included lead author, date of publication, country of study, paper aims, design, condition of sample, setting (i.e. hospital, hospice) of death, findings related to rural, coastal and/or urban location and associated factors. Data was extracted by one researcher (ITJ) with 100% checked independently by another researcher (RLC).

The synthesis was guided by Gomes and Higginson’s model of factors associated with place of death.²² Factors associated with place of death by rural, coastal and/or urban location and condition were categorised by individual (i.e. demographics and preferences), illness (i.e. length or severity of illness and function), environmental (i.e. social support and heath care use) and service factors (i.e. service availability).

The heterogeneity of included studies resulted in a meta-analysis being inappropriate. Therefore a narrative synthesis was undertaken using Popay’s guidance.³⁸

Results

The searches identified 18,863 papers for review, and an additional 45 papers were identified from other methods (Figure 1). Thirty papers have been included in this review, detailing 29 individual studies (see Supplemental Appendix 3 for full details). Most papers were excluded as the geographical location was not, or could not be, categorised. Ten studies were conducted in the UK, four in Canada, three in Belgium, three in USA, two in each Japan, Australia, and Sweden and one study from each: Italy, China, South Korea. Sample sizes ranged from 32 to 2,778,592 (Supplemental Appendix 3). One experimental study design was included, but this was not randomised. Most studies were observational cohort studies.

Figure 1.

PRISMA flow diagram.

All studies were of high quality and graded 0.8–1. Studies were graded lower due to missed reporting on study design and sample size estimates, and lack of robust outcome measures.

Fourteen studies examined place of death in rural and urban populations^3,39–52, twelve studies focussed only on urban populations^24,53–63, two on costal urban populations^64,65 (both categorised based on named geographical location) and one study focussed only on a rural population.⁶⁶ No studies were identified looking at coastal rural areas and nor was the term ‘coastal’ used as a geographical area for examination by any study.

A total of 3,517,909 dementia decedents and 6,988,050 cancer decedents were included in the studies. Three studies^52,55,66 included both dementia and cancer populations, nine focussed on dementia^{3,41,48,51,53,58,61,63,65} and seventeen cancer^{24,39,40,42–47,49,50,54,56,57,59,60,62,64} (Figure 2).

Figure 2.

Studies included in the review by condition and geographical location.

Definition of geographical locations

Where provided, the definitions of urban and rural locations were heterogeneous. The most common definition of a rural area was a census area with less than 10,000 residents. This definition was used by three Canadian studies^39,48,50 and one UK study.³ One American study defined rural as an area with less than 50,000 residents⁴¹ and another as less than 2,500.⁴⁵ Most studies used definitions provided by local governing bodies.^{3,41,44,45,47,48,50} No study provided a definition for a coastal area.

Place of death by geographical location

Rural and urban studies

Fourteen studies examined place of death in rural and urban areas with four focussing on people with dementia^3,41,48,51, nine on people with cancer^{39,40,42–47,49,50} and one included both populations.⁵²

Studies of dementia decedents found that hospital deaths were more likely as the area got more urbanised, and that for rural residents, a care home or home death was more likely.^3,41,48,51 The sample sizes included in these studies ranged from 2,778,592 to 63,375 and all were very high quality.

In the largest two studies of cancer decedents (sample sizes n = 5,570,065 and 815,780),^40,49 an increase in home deaths for rural residents was found (55% in metro vs 85% in non-metro areas). Further, as a place got less urbanised, the chances of dying at home increased (e.g. England: average urbanisation OR 1.2, 95% CI 1.20–1.28, Rural: OR 1.4, 95% CI 1.28–1.55). However, this varied by country. Findings from Canada, USA, France and Sweden report increased home deaths in urban areas.^40,45,47,50 In China, being on a rural insurance plan, compared to an urban plan, increased the odds of dying in hospital for people with cancer (OR = 7.1, 95% CI 4.15–12.0, p < 0.001).⁴⁶

One study that included dementia and cancer decedents⁵² did not provide data on place of death prior to the hospice care intervention, therefore findings are reported under environmental factors.

Rural studies

One study examined all deaths in rural Scotland⁶⁶ with a large sample size (N = 19,697). A higher proportion of people with dementia died residential care (n = 545; 72%), compared to people with cancer (n = 3105), who mostly died in acute hospitals (52%), home (28%) and specialist palliative care units (27%).

Urban studies

Twelve studies examined place of death in urban areas only. Four included dementia decedents only^53,58,61,63, seven cancer^{24,54,56,57,59,60,62} and one both.⁵⁵

All studies of dementia decedents took place in the UK. They found that people with dementia living in urban areas of the UK mostly died in a care home (42%–81%) and only a small proportion died at home (11%–27%). The largest study, where preferences were documented, reported the smallest proportion of hospital deaths (12%) and the only study from outside of London reported the highest (47%). The largest two studies including cancer decedents only were also conducted in the UK. They found that 50%–54% died in hospital, 18%–20% died in hospice, and 19%–20% in their own home.^57,59 In smaller studies of cancer decedents, where participants were receiving palliative care, the majority died at home^60,62 or in a hospice⁵⁶

One study examined all deaths in Belgium⁵⁵ and found that 74% of people with Alzheimer’s died in residential care, whereas 74% of people with cancer died in a hospital.

Coastal urban studies

In Sweden, cancer decedents who received conventional care mostly (63%) died in hospital.⁶⁴ Similarly, approximately half (49%) or people with dementia died in hospital in coastal Australia.⁶⁵

Factors associated with place of death

Most studies that examined factors associated with place of death were undertaken in urban populations^{24,53–57,59,60,62,63} or in urban populations compared with rural populations.^{44–46,50,52} Only two coastal urban studies^64,65 and one rural study⁶⁶ examined factors. None of the identified associated factors were examined across rural, coastal and urban areas. Thirteen studies examined factors associated with place of death for people with cancer, only four included studies examined factors associated for people with dementia (Figure 3). For people with dementia, most factors examined were around the illness (n = 4), whereas for cancer, they were mostly around the individual (n = 11) and environment (n = 9) (see Figure 4).

Figure 3.

Factors associated with place of death identified within included studies.

Figure 4.

Factors associated with place of death for people with dementia and people with cancer. Factors associated with both dementia and cancer populations; dementia only; cancer only.

Individual factors

The most commonly examined factors associated with place of death were around individual factors. Fourteen studies examined individual factors, including age, socioeconomic position, country of birth, marital status and preferences.

Rural and urban studies

Both studies examining factors associated with place of death in rural and urban areas only examined socioeconomic factors in cancer populations.^46,50 At an area level, residents in the highest income urban neighbourhood were 69% more likely to die at home, compared to residents in the lowest income neighbourhood (OR 1.7, 95% CI 1.54–1.85).⁵⁰ Whereas, at an individual level, those with a lower socioeconomic status (indicated by insurance type) in urban areas had increased odds of dying in hospital (OR 28.0, 95% CI 16.8–46.6, p < 0.001).⁴⁶

Rural studies

In rural Scotland, home deaths were less likely with increasing age (OR 1.0, 95% CI 0.97–0.98).⁶⁶ However, compared to people with cancer, the odds of dying in residential care over a hospital increased with age for people with dementia (OR 20.3, 95% CI 14.51–28.29).

Urban studies

The most commonly examined individual factor was age. Large studies of cancer decedents found older age to be associated with home deaths, compared to hospital.^54,62 Smaller studies found no association.^56,60 Country of birth also appeared to have some association with place of death for cancer populations. A large UK study⁵⁷ found that compared to people born in the UK, hospital deaths were more likely for those born in Asia (PR 1.1 (1.08–1.15)) and Africa (PR 1.1 (1.07–1.16)). Deaths in own home were significantly less likely for those born in the Caribbean (PR 0.9 (0.85– 0.98)) and more likely for people born in Ireland (PR 1.1 (1.07–1.19)).

For both people with cancer and people with dementia, preference appears to be associated with place of death. Of people with dementia who stated a preference for place of death, 84% were able to achieve it, leading to the majority dying in a care home or at home (51% and 27% respectively).⁶³ Whereas, for people with cancer, home deaths were more likely when patients discussed their preferences with family (AOR, 3.4; 1.63–7.04; OR 16.5, 95% CI 3.30–82.73).^24,60

Coastal urban studies

In dementia populations, people without a listed spouse were more likely to die in hospital (63% vs 47%), and people with a listed spouses were more likely to die in other settings (53% vs 37%; p = 0.007).⁶⁵

Illness factors

Eight studies examined illness factors associated with where people die, such as severity, type of disease and comorbidities.

Rural and urban studies

The only study to examine illness factors in rural and urban areas⁴⁷ indicated that cancer type may have an impact on place of death, in addition to geographical location. Compared to urban areas, people with lung, brain, colorectal and prostate cancer in rural areas had a greater likelihood of dying at home.⁴⁷

Urban studies

Six studies examined illness factors in urban areas, mostly around primary diagnosis. Three small studies in cancer populations found no significant effect of primary diagnosis, including cancer type, on place of death.^56,60,62 Further, one study found that compared to people with dementia without a cancer co-morbidity, those with a primary diagnosis of cancer were less likely to achieve their preferred place of death (OR 0.5, 95% CI 0.28–0.97, p = 0.04).⁶³

For people with dementia, a small study found dementia severity to have an impact on place of death. A larger percentage of people with severe dementia or cognitive impairment died in care homes and a smaller proportion in hospital, compared to people with mild dementia or no cognitive impairment.⁵³ However, a higher proportion of those with no dementia/cognitive impairment died in a place that was not their usual address (79% vs 35%).

Coastal urban studies

For people with dementia, comorbidities have an impact of place of death. One study found a significantly greater proportion of people with diseases of the respiratory system died in hospital than in other places (p = 0.003).⁶⁵

Environmental factors

Twelve studies examined environmental factors including, access to hospice or specialist palliative care, other supportive healthcare, and living situation.

Rural and urban studies

Two studies included cancer populations only. One study found that significantly more people in large metropolitan areas accessed hospice services than those in rural areas⁴⁵ and of people who used hospice services, people in large metropolitan areas were less likely to die at home.⁴⁵ In addition, home based hospice services were found to increase home deaths, particularly for people with cancer compared to dementia and this was more pronounced in rural areas (exp (ß6) = 1.3, 95% CI, 1.1–1.56, p = 0.001).⁵² Place of death was not affected by referral time to palliative care for people with cancer.⁴⁴

Urban studies

Receipt of palliative care may influence where people with cancer died in urban areas. Compared to studies of populations who did not access palliative care, fewer hospital deaths were reported (24%–34% vs 50%–54%)^54,56,62 and an increase in home (32% and 56%)^54,62 and hospice deaths (39%)⁵⁶ were reported. Late referral, or no referral at all to palliative care was more common for those dying in hospital, compared to home.⁵⁴ Further, for people with cancer, where care was received facilitated their place of death. For example, those who spent less time in hospital and more time at home with support more often died at home.^24,60 Specifically, home deaths were facilitated by increased contact with the GP, support from a cancer nurse specialist (such as Marie Curie)²⁴ and visits from a specialised home care team.⁶⁰ Further, home deaths were facilitated when relatives knew about incurability more than a week before death and were able to take more time off work²⁴

One study identified contact with a healthcare professional as a facilitator to stating and, in turn, achieving preferred place of death for people with dementia⁶³

Coastal urban studies

As identified in urban cancer populations, hospital care was associated with dying in hospital (OR 7.0, 95% CI 3.7–13.1), p < 0.001) in a coastal urban area too.⁶⁴ However, advanced home care supported people to die at home.

For people with dementia living situation was associated with place of death. Those living at home alone or with family were significantly more likely to die in hospital, and those living in residential care more often remained there to die (p = 0.002).⁶⁵

Service factors

Urban studies

Only one study explored service factors associated with place of death. Madden et al.⁵⁹ identified hospices in primary care trusts in London, UK and explored the association with hospice deaths for cancer patients. They found that four of seven of areas with the highest hospice deaths had a hospice in the area, and only one of the eight areas with the lowest hospice deaths had a hospice in the area. However, this was not a statistically significant.

Discussion

This review is the first to examine the variation in place of death by rural, coastal and urban locations for people with dementia as compared to people with cancer. The evidence suggests that living in an urban area increases the likelihood of a person dying in hospital. This is aligned with existent evidence that includes deaths from all conditions.² This is potentially due to the proximity of hospital to a person’s usual place of care, with more rural residents dying at home due to transport challenges hindering their ability to access healthcare.³³ Further, some studies identified a dose-response relationship, with home, or care home, deaths becoming more likely the less urbanised the area got^40,41 and hospital deaths more likely with increasing urbanisation.⁵¹ However, this message is less consistent amongst the included studies of cancer populations and varies across countries. It is likely that the results differ by country due to variation in public health policies and/or the commissioning or availability of rural health services.⁵⁰ Factors were identified in the included studies that influenced these findings. Older age was found to decrease chances of dying at home for all rural residents,⁶⁶ but the opposite for people in urban areas.^54,62 Further, for urban residents the ability to communicate preferences enabled people to die where they wished to.^24,60,62,63 It is likely that access to health and social care professionals and family or friends allows for communication of preferences, and in turn, allow for wishes to be fulfilled, and this is more likely for those with cancer than dementia.^28,67 However, none of the associated factors were examined in all geographical locations, limiting comparisons.

In this review care home deaths were common for people with dementia, this may be due to the large proportion of studies being from the UK, reducing generalisability to all countries. In the UK, USA, Europe and other countries, people with dementia often move into care home in the last 1–2 years of life for 24-h care.^{29,41,68–70} In addition to the extended stay, ability to surround themselves with their own belongings and access to loved ones leads to residents feeling the care home is a substitute home environment for them when being at home may no longer be safe. This review has found that care home residents are less likely to be transferred to hospital at the end of life,⁷¹ may wish remain at the care home to die⁶³ and can be supported to do so. Therefore, it may appropriate for future research to consider care homes as comparable with home as place of death for people with dementia.

This review has identified multiple gaps in the understanding of geographical variation in place of death. Firstly, this review identified very few studies examining place of death in rural and coastal areas. Just one study⁶⁶ was identified that quantitatively examined place of death for people in rural areas alone and the associated factors. Much existent work focuses on the care received towards the end of life for people in rural areas.^13,33 This work routinely cites travel and transport issues as primary barriers to accessing health and social care services for this population, which may have an impact on where people die. Further, the coastal studies that were included in this review^64,65 did not consider the coastal context and the impact this may have on outcomes. In many countries, the older population living in rural and coastal areas has increased in recent years and is projected to continue to grow fastest in these areas^11,72–74 making it a priority to understand where people are likely to die, and the associated factors. Careful consideration needs to be given to the coastal and rural contexts where services (including specialist services) may not exist, or where they do exist do not meet the demands of the area or population or are not of the appropriate quality. Understanding the dynamics that are unique to rural and coastal areas is important to ensure equitable service planning and delivery.⁷⁵ This also includes consideration of cultural differences that exist between rural and urban residents, with rural residents often having strong cultural ties, through the environment or language, that are linked to a sense of self⁷⁶ and may need to be maintained to support a ‘good’ death.⁷⁷ This may mean that services or interventions developed in urban contexts may need to be adapted for the rural context.

The second gap identified within this review was the lack of a definition for coastal areas. The differences in health outcomes for coastal populations are emerging^11,78 and work to develop a coastal definition is in it’s infancy.^79,80 With the forementioned predicted growth of the older population and the increasing need for further research into these populations, a standardised definition of a coastal population would support identification and classification of population potentially at risk of poor health outcomes.^11,78 Finally, this review particularly highlights the paucity of research on where people with dementia die and the associated factors while considering the rural, coastal or urban location. This review identified twice as many cancer studies to dementia. This could be a consequence of the limited advancement in dementia research, as compared to cancer, to date.

Ultimately, future research should seek to understand where coastal and rural populations die, particularly those with dementia, and where they may prefer to die to support efficient and equitable service planning and delivery for the growing population. This should include further examination of factors associated with place of death, with a particular focus on service factors, such as how service availability and accessibility impact on place of death and preferred place of death. Existent evidence suggests that place of death is associated with distance to services, such as hospice and hospital,^6,81 but if and how this varies by condition remains unknown. Further, this review identifies a lack of understanding of how preferences may differ in urban, rural and coastal areas and across conditions. Geographical location should be considered more thoroughly in research into health outcomes.

What this study adds

For the first time, this review examines the evidence on the impact geographical location has on place of death and how associated factors may vary by rural, coastal and urban locations. In particular, it focuses on populations who tend to receive access to care at the end of life (cancer), and for those who experience the most difficulties in accessing care (dementia), to identify specific groups that may be particularly affected by a rural, coastal and urban location. Future directions for research are proposed based on findings and gaps in the evidence base and the positioning of geographical location as a primary contributor of place of death is advocated for (Box 1).

Box 1.

Implications for future research, policy and practice.

1. Coastal areas need to be defined and classified in the same way rural and urban locations are.2. There is a need for increased recognition of the impact a rural, coastal and urban location may have on place of death.3. Implications of living rurally for people with dementia need to be more widely considered.4. Future research and service planning needs to ensure consideration of preferences and service factors, including availability and access, when examining place of death and how this may vary by rural/urban and coastal locations.

Limitations

This review has limitations. There was large heterogeneity in the outcomes identified in the review which prevented the ability to undertake a meta-analysis and resulted in a largely descriptive review. In previous reviews, meta-analysis indicates factors such as age, marital status, and race have an association with place of death for people with dementia³⁴ and function, preferences and home support²² for people with cancer. These factors have been identified within this review, but to a lesser extent and without the body of evidence to support a meta-analysis.

The inclusion criteria for this review may have limited the findings. For example, this review only included quantitative studies to enable direct comparisons across place of death. However, this will likely have precluded some contextual, in depth, understanding around preferences and quality of care found in qualitative studies. Due to the inclusion only of quantitative studies and most included studies were observational in design, the results are therefore limited to associations and causation cannot be established. Further, the parameters around the proportion of the sample population with the relevant conditions or age may have excluded some potentially important studies. For example, one study was excluded as it fell just under the threshold of 80% cancer population. However, inclusion of this study would not have significantly changed the results of this review as it found that most people with cancer in urban and coastal urban areas died in hospital.⁸² One interesting finding from this study was that more people in the urban coastal area wished to die in a care home, compared to the urban location who preferred to die at home. The authors suggest this might be due to the younger age of the urban sample.

It is also important to note that this review is potentially impacted by the underreporting of dementia on death certificates^83–85 and its subsequent influence on research into place of death that relies heavily on death certificate data. This may have resulted in small sample sizes in the dementia studies included and the findings are cognisant of this.

Finally, we did not publish a protocol for this review. While this is important for reviews of clinical outcomes such as treatment effect estimations, this review was more exploratory of nature. Nevertheless, this is a limitation of the review.

Conclusions

The evidence suggests that urban residents are more likely to die in hospital and rural residents are more likely to die at home, or in a care home. For all rural residents, increasing age reduced likelihood of dying at home and for all urban residents, indicating a preference for home increased likelihood of a home death. However, the evidence was stronger for those with cancer than dementia. More research is required that puts location in the forefront as a primary contributor to place of death and more consideration of the factors associated with place of death and how they vary by rural, coastal and urban locations is required.

Supplemental Material

sj-docx-1-pmj-10.1177_02692163261426428 – Supplemental material for Unequal ends: A systematic review comparing place of death in rural, coastal and urban areas for older people with dementia to cancer

Supplemental material, sj-docx-1-pmj-10.1177_02692163261426428 for Unequal ends: A systematic review comparing place of death in rural, coastal and urban areas for older people with dementia to cancer by India Tunnard-Johnson, Rachel L. Chambers, Peter May, Frank Jackson-Hill and Irene J. Higginson in Palliative Medicine

Footnotes

Acknowledgements

The authors would like to acknowledge Adam Gartside, Senior Library Assistant, KCL for supporting the development of the search strategy.

ORCID iDs

India Tunnard-Johnson

Rachel L. Chambers

Peter May

Irene J. Higginson

Author contributions

ITJ, IJH, PM and FJH designed the review. ITJ and RLC undertook the data screening, extraction and quality assessment. ITJ wrote the manuscript, and all authors contributed to revisions and approved the final manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: India Tunnard-Johnson and Rachel L Chambers are funded by the BuildPall capacity building programme at the Cicely Saunders Institute, funded by Cicely Saunders International (charity reg. 1087195).

Irene J. Higginson is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King’s College Hospital National Health Service Foundation Trust.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Data extracted and data extraction template are available from the corresponding author upon request.*

Supplemental material

Supplemental material for this article is available online.

References

Bone

Gomes

Etkind

, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliat Med 2018; 32(2): 329–336.

Dasch

Blum

Gude

, et al. Place of death: trends over the course of a decade: a population-based study of death certificates from the years 2001 and 2011. Dtsch Ärztebl Int 2015; 112(29-30): 496–504.

Sleeman

Verne

, et al. Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neurol 2014; 14(1): 59.

Kalseth

Theisen

OM.

Trends in place of death: the role of demographic and epidemiological shifts in end-of-life care policy. Palliat Med 2017; 31(10): 964–974.

Gomes

Calanzani

Higginson

IJ.

Reversal of the British trends in place of death: time series analysis 2004-2010. Palliat Med 2012; 26(2): 102–107.

Chukwusa

Verne

Polato

, et al. Urban and rural differences in geographical accessibility to inpatient palliative and end-of-life (PEoLC) facilities and place of death: a national population-based study in England, UK. Int J Health Geogr 2019; 18(1): 11.

Centre for Better Ageing. State of ageing summary 2025. 2025. https://ageing-better.org.uk/our-ageing-population-state-ageing-2025

Smailes

Griffin

Argent

Demographic change, differential ageing, and public policy in rural and regional Australia: a three-state case study. Geogr Res 2014; 52(3): 229–249.

Davis

Bartlett

Healthy ageing in rural Australia: issues and challenges. Australas J Ageing 2008; 27(2): 56–60.

10.

World Health Organization. Increasing access to health workers in remote and rural areas through improved retention: global policy recommendations. World Health Organization, 2010.

11.

Whitty

Loveless

Chief medical officer’s annual report 2021: health in coastal communities. UK: Department of Health and Social Care, 2021.

12.

Elliot

Morgan

Kosteniuk

, et al. Palliative and end-of-life care for people living with dementia in rural areas: a scoping review. PLoS One 2021; 16(1): e0244976.

13.

Arsenault-Lapierre

Bui

Le Berre

, et al. Rural and urban differences in quality of dementia care of persons with dementia and caregivers across all domains: a systematic review. BMC Health Serv Res 2023; 23(1): 102.

14.

Wittenberg

Jagger

, et al. Projections of care for older people with dementia in England: 2015 to 2040. Age Ageing 2020; 49(2): 264–269.

15.

Etkind

Bone

Gomes

, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med 2017; 15(1): 102.

16.

Pedersen

Raunkiær

Graven

Barriers and facilitators for place of death: a scoping review. Palliat Support Care 2024; 22: 2207–2220.

17.

Mitchell

Teno

Miller

, et al. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005; 53(2): 299–305.

18.

Wright

Keating

Balboni

, et al. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol 2010; 28(29): 4457–4464.

19.

Sepulveda

JMG

Baid

Johnson

, et al. What is a good death? A choice experiment on care indicators for patients at end of life. J Pain Symptom Manag 2022; 63(4): 457–467.

20.

Gomes

Calanzani

Gysels

, et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013; 12: 7.

21.

De Roo

Miccinesi

Onwuteaka-Philipsen

, et al. Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators. PLoS One 2014; 9(4): e93762.

22.

Gomes

Higginson

IJ.

Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006; 332(7540): 515–521.

23.

Alonso-Babarro

Astray-Mochales

Domínguez-Berjón

, et al. The association between in-patient death, utilization of hospital resources and availability of palliative home care for cancer patients. Palliat Med 2013; 27(1): 68–75.

24.

Gomes

Calanzani

Koffman

, et al. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med 2015; 13(1): 235.

25.

Fürst

Strang

Hedman

, et al. Advanced cancer and concomitant dementia: access to specialized palliative care, emergency room, hospital care, and place of death. Acta Oncol 2022; 61(7): 874–880.

26.

Sampson

EL.

Palliative care for people with dementia. Br Med Bull 2010; 96(1): 159–174.

27.

Mogan

Lloyd-Williams

Harrison Dening

, et al. The facilitators and challenges of dying at home with dementia: a narrative synthesis. Palliat Med 2018; 32(6): 1042–1054.

28.

Dening

Jones

Sampson

EL.

Advance care planning for people with dementia: a review. Int Psychogeriatr 2011; 23(10): 1535–1551.

29.

Houttekier

Cohen

Bilsen

, et al. Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc 2010; 58(4): 751–756.

30.

Gomes

Higginson

Calanzani

, 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; 23(8): 2006–2015.

31.

Rainsford

MacLeod

Glasgow

NJ.

Place of death in rural palliative care: a systematic review. Palliat Med 2016; 30(8): 745–763.

32.

Giebel

Hanna

Watson

, et al. A systematic review on inequalities in accessing and using community-based social care in dementia. Int Psychogeriatr 2024; 36(7): 540–563.

33.

Giebel

Readman

Godfrey

, et al. Geographical inequalities in dementia diagnosis and care: a systematic review. Int Psychogeriatr 2025; 37: 100051.

34.

Tay

Tan

Lim

, et al. Factors associated with the place of death of persons with advanced dementia: a systematic review of international literature with meta-analysis. Palliat Med 2024; 38(9): 896–922.

35.

Sackett

Straus

Richardson

WS.

Evidence-based medicine: how to practice and teach EBM. Churchill Livingstone, 2000.

36.

Kmet

Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation for Medical Research Edmonton, 2004.

37.

Ellis-Smith

Tunnard

Dawkins

, et al. Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools. BMC Palliat Care 2021; 20: 168–241.

38.

Popay

Guidance on the conduct of narrative synthesis in systematic reviews. ESRC Methods Programme, 2006.

39.

Bainbridge

Seow

Sussman

, et al. Factors associated with acute care use among nursing home residents dying of cancer: a population-based study. Int J Palliat Nurs 2015; 21(7): 349–356.

40.

Cohen

Pivodic

Miccinesi

, et al. International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer 2015; 113(9): 1397–1404.

41.

Cross

Kaufman

Taylor Dh Jr , et al. Trends and factors associated with place of death for individuals with dementia in the United States. J Am Geriatr Soc 2020; 68(2): 250–255.

42.

Fukui

Fujita

Tsujimura

, et al. Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey. Int J Nurs Stud 2011; 48(11): 1393–1400.

43.

Fukui

Fujita

Tsujimura

, et al. Late referrals to home palliative care service affecting death at home in advanced cancer patients in Japan: a nationwide survey. Ann Oncol Off J Eur Soc -med Oncol 2011; 22(9): 2113–2120.

44.

Howat

Veitch

Cairns

A retrospective review of place of death of palliative care patients in regional north Queensland. Palliat Med 2007; 21(1): 41–47.

45.

Jarosek

Shippee

Virnig

BA.

Place of death of individuals with terminal cancer: new insights from medicare hospice place-of-service codes. J Am Geriatr Soc 2016; 64(9): 1815–1822.

46.

Jiang

, et al. Determinants of place of death for end-stage cancer patients: evidence from China. Int J Qual Health Care 2020; 32(1): 41–47.

47.

Nilsson

Axelsson

Holgersson

, et al. Geographical differences in likelihood of home death among palliative cancer patients: a national population-based register study. Anticancer Res 2020; 40(7): 3897–3903.

48.

Park

Milani

Tanuseputro

, et al. The association between rurality, places of care and the location of death of long-term care home residents with dementia: a population-based study. Health Rep 2024; 35(7): 3–13.

49.

Rashid

Khalil

Khan

MMM

, et al. Upper gastrointestinal cancers: trends and determinants of location of death in United States, 2024. Surgery 2025; 179: 108797.

50.

Raziee

Saskin

Barbera

Determinants of home death in patients with cancer: a population-based study in Ontario, Canada. J Palliat Care 2017; 32(1): 11–18.

51.

Reyniers

Deliens

Pasman

, et al. International variation in place of death of older people who died from dementia in 14 European and non-European countries. J Am Med Dir Assoc 2015; 16(2): 165–171.

52.

Yun

Jang

S-I

Park

E-C

, et al. Changes in the place of death of patients with cancer after the introduction of insurance-covered, home-based hospice care in Korea. JAMA network open 2023; 6(11): e2341422.

53.

Fleming

Calloway

Perrels

, et al. Dying comfortably in very old age with or without dementia in different care settings - a representative “older old” population study. BMC Geriatr 2017; 17(1): 222.

54.

Hales

Chiu

Husain

, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manag 2014; 48(5): 839–851.

55.

Houttekier

Cohen

Bilsen

, et al. Determinants of the place of death in the Brussels metropolitan region. J Pain Symptom Manag 2009; 37(6): 996–1005.

56.

Higginson

Daveson

Morrison

, et al. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries. BMC Geriatr 2017; 17(1): 271.

57.

Koffman

Davies

, et al. Does ethnicity affect where people with cancer die? A population-based 10 year study. PLoS One 2014; 9(4): e95052.

58.

Livingston

Lewis-Holmes

Pitfield

, et al. Improving the end-of-life for people with dementia living in a care home: an intervention study. Int Psychogeriatr 2013; 25(11): 1849–1858.

59.

Madden

Coupland

Møller

, et al. Using maps and funnel plots to explore variation in place of death from cancer within London, 2002-2007. Palliat Med 2011; 25(4): 323–332.

60.

Nakamura

Kuzuya

Funaki

, et al. Factors influencing death at home in terminally ill cancer patients. Geriatr Gerontol Int 2010; 10(2): 154–160.

61.

Sampson

Candy

Davis

, et al. Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliat Med 2018; 32(3): 668–681.

62.

Varani

Dall’Olio

Messana

, et al. Clinical and demographic factors associated to the place of death in advanced cancer patients assisted at home in Italy. Prog Palliat Care 2015; 23(2): 61–67.

63.

Wiggins

Droney

Mohammed

, et al. Understanding the factors associated with patients with dementia achieving their preferred place of death: a retrospective cohort study. Age Ageing 2019; 48(3): 433–439.

64.

Ahlner-Elmqvist

Jordhoy

Jannert

, et al. Place of death: hospital-based advanced home care versus conventional care. a prospective study in palliative cancer care. Palliat Med 2004; 18(7): 585–593.

65.

Triandafilidis

Carr

Davis

, et al. What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings. BMC Geriatr 2024; 24(1): 40.

66.

Black

Waugh

Munoz-Arroyo

, et al. Predictors of place of death in south west Scotland 2000-2010: retrospective cohort study. Palliat Med 2016; 30(8): 764–771.

67.

Gotanda

Nuckols

Lauzon

, et al. Comparison of advance care planning and end-of-life care intensity between dementia versus cancer patients. J Gen Intern Med 2022; 37(13): 3251–3257.

68.

British Geriatrics Society. End of life care in frailty: care homes 2020, https://www.bgs.org.uk/resources/end-of-life-care-in-frailty-care-homes (2020).

69.

Badrakalimuthu

Barclay

Do people with dementia die at their preferred location of death? A systematic literature review and narrative synthesis. Age Ageing 2014; 43(1): 13–19.

70.

Fletcher

Assessment of changes in place of death of older adults who died from dementia in the United States, 2000-2014: a time-series cross-sectional analysis. BMC Public Health 2020; 20: 765.

71.

Leniz

Higginson

Stewart

, et al. Understanding which people with dementia are at risk of inappropriate care and avoidable transitions to hospital near the end-of-life: a retrospective cohort study. Age Ageing 2019; 48(5): 672–679.

72.

Hauer

Saunders

Shtob

Research note: demographic change on the United States coast, 2020-2100. Demography 2022; 59(4): 1221–1232.

73.

Hugo

Population distribution, migration and climate change in Australia: an exploration. UMTSI 2012; 1–101.

74.

M c Guirk

Argent

. Population growth and change: implications for Australia’s cities and regions. Geogr Res 2011; 49(3): 317–335.

75.

Cohen

Greaney

ML.

Aging in rural communities. Curr Epidemiol Rep 2023; 10(1): 1–16.

76.

Mogan

Davies

Harrison-Dening

, et al. Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK. Age Ageing 2024; 53(8): afae169.

77.

Rainsford

MacLeod

Glasgow

, et al. Rural residents’ perspectives on the rural ‘good death’: a scoping review. Health Soc Care Community 2018; 26(3): 273–294.

78.

Asthana

Gibson

Averting a public health crisis in England’s coastal communities: a call for public health research and policy. J Public Health 2022; 44(3): 642–650.

79.

Hjorthen

Sund

Skalická

, et al. Understanding coastal public health: employment, behavioural and psychosocial factors associated with geographical inequalities. The HUNT study, Norway. Soc Sci Med 2020; 264: 113286.

80.

Welsh

Welham

Anderson

, et al. Can we empirically derive a geographic definition of ‘coastal’ for use in cancer data reporting? An ecological modelling study using England’s national cancer registry. BMJ Public Health 2024; 2(2): e001067.

81.

Kalseth

Halvorsen

Relationship of place of death with care capacity and accessibility: a multilevel population study of system effects on place of death in Norway. BMC Health Serv Res 2020; 20: 454.

82.

Saurman

Allingham

Draper

, et al. Preferred place of death—a study of 2 specialist community palliative care services in Australia. J Palliat Care 2022; 37(1): 26–33.

83.

Perera

Stewart

Higginson

, et al. Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study. Age Ageing 2016; 45(5): 668–673.

84.

Gao

Calloway

Zhao

, et al. Accuracy of death certification of dementia in population-based samples of older people: analysis over time. Age Ageing 2018; 47(4): 589–594.

85.

Romero

Benito-León

Louis

, et al. Under reporting of dementia deaths on death certificates: a systematic review of population-based cohort studies. J Alzheimers Dis 2014; 41(1): 213–221.

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