Objectives Referral to, and usage of, specialist palliative care (SPC) services are not equitable and social deprivation may be a contributory factor in this. Deprivation may also affect the place of death of patients with cancer. No study, however, has investigated whether inequalities persist following referral to SPC services. This study investigates whether place of death varies by deprivation for patients known to SPC services.
Methods Place of death and postcode were obtained for 485 consecutive patients known to SPC services within NHS Lothian who died in 2014–2015. From this information, deprivation quintile (DQ) was derived using the Scottish Index of Multiple Deprivation (SIMD) database and place of death compared between DQs and analysed statistically.
Results Across all DQs, patients known to SPC services were more likely to die in the hospice than at home or in hospital. There was, however, a small but statistically significant difference in the ratio of hospital deaths compared to hospice deaths between the DQs, with higher death rates in hospital for the most deprived compared to the least deprived and higher death rates in the hospice for the least deprived compared to the most deprived.
Conclusions This study suggests that even after referral to specialist palliative care services variation in place of death by deprivation persists. Greater deprivation is associated with increased likelihood of dying in hospital and decreased likelihood of dying in a hospice, although no difference was noted for home deaths.
- Home care
- Hospice care
- Hospital care
- Service evaluation
- Terminal care
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Many studies have suggested that referral to, and usage of, palliative care services around the globe is inequitable.1–3 This is also true within the UK,4–7 despite equitable access to palliative care being a key tenet of the Scottish Government's Strategic Framework for Action on Palliative and End of Life Care.8 Many potential factors have been hypothesised including variability in services, lack of understanding of palliative care (from patients and healthcare professionals), resistance to shared care, age, gender, ethnicity, diagnosis and deprivation.1 ,2
These studies have been heterogeneous in their design and sample populations and have often used all cancer deaths as a proxy indicator of palliative care need. It has, however, been suggested that patients with cancer from more deprived backgrounds within the UK are less likely to access community palliative care services,9 ,10 less likely to die in a hospice5 and less likely to die at home6 ,7 when compared to patients from higher socioeconomic groups.
It is important to assess not only whether referral and access to SPC is equitable, but also whether SPC services are equitable in their delivery of care. This study aims to investigate whether place of death varies by deprivation for patients known to SPC services in NHS Lothian and is the first such study to use a sample population exclusively of patients known to SPC services. Place of death is one of four indicators of good quality palliative and end of life care measured by Healthcare Improvement Scotland, who suggest that fewer people dying in an acute hospital is a proxy measure of whether people's preference for place of death is achieved.11
Population and local services
There are two hospices which provide SPC inpatient services to the population of NHS Lothian, three day service units (DSU) and four community services.14 All DSUs and community teams have strong links with the two hospices, and records are kept of all patients who receive SPC within NHS Lothian.
Scottish Index of Multiple Deprivation
The Scottish Government uses the Scottish Index of Multiple Deprivation (SIMD) to identify those areas which suffer as a result of a lack of resources or opportunities. SIMD uses seven key domains (employment, income, health, crime, housing, geographic access to services and education, skills and training)13 to measure deprivation and ranks geographical areas (identifiable by postcode) accordingly. These areas are then grouped into quintiles (1, most deprived to 5, least deprived) and deprivation quintile (DQ) for an area can be obtained by entering the postcode into the SIMD database. The most recent database available is for 2012.
Requests for anonymised data on place of death and home postcode were sent to the two organisations governing SPC services in NHS Lothian for the last 250 consecutive patients who had died and who were known to all branches (inpatient unit, community services and day services) of each organisation. These produced data on 500 consecutive patients known to SPC services within Edinburgh, Midlothian, West Lothian and East Lothian who had died, covering a timeframe of 5 August 2014 to 25 February 2015.
Records were excluded from further analysis if place of death was documented as a care home as this would likely also have been the patient's home address and postcode on record and may not accurately represent the SIMD quintile to which the patient had belonged before moving to the care home. Records were also excluded if it was not possible to obtain a DQ from the postcode. This was usually because postcodes were from new houses built after production of the SIMD 2012.
The home postcode of each patient was entered into the SIMD 2012 database producing a DQ for each individual and analysis performed to assess whether the place of death of patients known to specialist palliative care services differed between DQs.
DQ is an ordinal variable. For modelling the association of deprivation with place of death, a logistic regression model was fitted with place as a three-level factor and deprivation treated as a linear regressor. The significance of differences between the quintiles was tested by a likelihood ratio test of the interaction between place of death and deprivation when the interaction term was included in the model. Contrasts between individual pairs of slopes were assessed with Wald tests. For simplicity of presentation of figure 1, since death rates are low, the death rates rather than their logistic transforms have been plotted as linear functions of deprivation.
Of the 500 consecutive deaths known to specialist palliative care services within NHS Lothian, 9 records were excluded because place of death was a care home and a further 6 were excluded because it was not possible to identify their DQ. This means that a total of 485 records were examined.
Table 1 shows the numbers of patients from each DQ and their place of death. Of the total number of patients who died known to SPC services over the timeframe investigated, 10% belonged to DQ 1, 18% to DQ2, 16% to DQ3, 22% to DQ4 and 34% to DQ5. This is very similar to overall population trends within the health board. Within NHS Lothian 11% of the general population belong to DQ1, 19% to DQ2, 19% to DQ3, 19% to DQ4 and 32% to DQ5.
In total, 56% (270/485) of patients known to SPC died in a hospice, 26% (127/485) died at home and 18% (88/485) died in hospital. Only 45% (22/49) of those in DQ1 died in a hospice, however, compared to 60% (97/163) in DQ5 while 28.5% (14/49) of patients in DQ1 died in hospital compared to 12% (20/163) in DQ5.
Fitting straight lines to the graphs of death rates against DQ for each place of death gives the plot shown in figure 1. Although there are more hospice deaths than deaths at home or in hospital overall, it is the slopes of the lines that are of interest. Statistical analysis shows that there is no significant difference between the slopes of the lines for hospice and home deaths, but that there is a significant difference between the slope of the line for hospital deaths and that for hospice deaths (p=0.01), suggesting that the ratio of hospital deaths to hospice deaths is greater for the more deprived social groups when compared to the least deprived.
This study suggests that even after referral to SPC services, statistically significant variation exists in place of death between patients from the most and least deprived areas. The most deprived are more likely to die in hospital compared to the least deprived and the least deprived are more likely to die in the hospice than the most deprived.
There are limitations to using SIMD data to measure deprivation as there will always be individuals within a postcode area who do not fit the general trend of the area. SIMD does, however, use several aspects of deprivation which makes it more reliable than traditional measures such as occupation and income.
This work is preliminary in nature, and further multivariate analysis is required to assess whether patient age, preferences, gender, diagnosis, length of time known to SPC, branch of service to which the patient was known, ethnicity, symptom burden and presence of informal carer impact on place of death following referral to SPC. Such analysis was not possible within the constraints of this short report but nonetheless it highlights a potentially important inequitable distribution of SPC services that requires further evaluation.
If multivariate analysis confirmed deprivation as an independent factor which affects place of death for patients known to SPC services, then further research should focus on why such a discrepancy may exist and what can be carried out to address this. It may be that it is more challenging to engage patients from more deprived backgrounds in anticipatory care planning2 ,3 or that they are less willing to request hospice admission.1 ,5 Alternatively reduced healthcare literacy in more deprived patients may reduce their understanding of palliative care and increase anxiety when hospice is discussed.2 ,3 Another possible explanation is that local transport links may make it difficult for relatives and carers to attend the hospice.3 Qualitative methods could be employed to gain a better understanding of why this variation in place of death exists and to elicit recommendations on how this could be tackled. Further research should also assess whether the results of this study are reproducible generally within palliative care on a larger population, over a wider geographical area.
The authors express their gratitude to Mr G Cohen for his invaluable assistance with statistical analysis and also to Marie Curie Hospice, Edinburgh, and St Columba's Hospice, Edinburgh, for providing access to their records.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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