Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses

Cohen, Joachim; Bilsen, Johan; Miccinesi, Guido; Löfmark, Rurik; Addington‐Hall, Julia; Kaasa, Stein; Norup, Michael; Wal, Gerrit van der; Deliens, Luc

doi:10.1186/1471-2458-7-283

Cited by 62 publications

(79 citation statements)

References 47 publications

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“…The mortality statistics generated from death certificates inform clinical practice and policy. 5,12 A strength of using mortality data is the potential to include the whole population and the use of internationally agreed methods of death classification and coding, thereby allowing national and international comparisons. 12 Furthermore, use of historical mortality data allows analysis of the changing pattern of place of death over time, which is essential for future projections, to assess historical policy initiatives and to guide appropriate health policy decisions.…”

Section: Introductionmentioning

confidence: 99%

Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study

Sleeman

Verne³

et al. 2013

Palliat Med

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Background:Little is known about place of death in chronic neurological diseases. Mortality statistics are ideal for examining trends in place of death, but analyses are limited by coding rule changes. Aim: To examine the relationship between place of death and underlying cause of death in Parkinson's disease, multiple sclerosis and motor neurone disease and the impact of coding rule changes on analysis of place of death. Design: Population-based study. Proportion ratios for death in hospice, home, care home and hospital were calculated according to underlying cause of death, using multivariable Poisson regression. Participants: Deaths in England (1993 with any mention of Parkinson's disease, multiple sclerosis or motor neurone disease as a cause of death, identified from national mortality data. Results: In this study, 125,242 patients with Parkinson's disease, 23,501 with multiple sclerosis, and 27,030 with motor neurone disease were included. Home deaths ranged from 9.7% (Parkinson's disease) to 27.1% (motor neurone disease), hospice deaths ranged from 0.6% (Parkinson's disease) to 11.2% (motor neurone disease) and hospital deaths ranged from 43.4% (Parkinson's disease) to 55.8% (multiple sclerosis). In Parkinson's disease and multiple sclerosis, cancer as underlying cause of death increased likelihood of hospice death (proportion ratio (PR): 18.8, 95% confidence interval (CI) = 16.1-22.0; 8.88, 95% CI = 7.49-10.5) and home death (PR: 1.91, 95% CI = 1.80-2.04; 1.71, 95% CI = 1.56-1.88). Dementia as underlying cause of death increased likelihood of care home death in Parkinson's disease (PR: 1.25, 95% CI = 1.19-1.32), multiple sclerosis (PR: 1.73, 95% CI = 1.22-2.45) and motor neurone disease (PR: 2.36, 95% CI = 1.31-4.27). Conclusions: Underlying cause of death has a marked effect on place of death. The effects of coding rule changes are an essential consideration for all research using underlying cause of death to study place of death.

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Section: Introductionmentioning

confidence: 99%

Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study

Sleeman

Verne³

et al. 2013

Palliat Med

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“…Death certificates, despite acknowledged limitations, are a valuable tool for examining place of death, 20,21 but 'usual address' data are less frequently used and, to the authors' knowledge, less validated. In the study sample, study personnel were familiar with circumstances of the recently deceased, so noticed inconsistencies, for example a former private address was given by the next-of-kin as the usual residence despite the participant's permanent move into care.…”

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confidence: 99%

Place of death for the ‘oldest old’: ≥85-year-olds in the CC75C population-based cohort

Fleming

Zhao²,

Farquhar³

et al. 2010

Br J Gen Pract

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Deaths are rising fastest among the oldest old but data on their transitions in place of care at the end of life are scarce. AimTo examine the place of residence or care of ≥85 yearolds less than a year before death, and their place of death, and to map individual changes between the two. Design of studyPopulation-based cohort study. SettingCambridge City over-75s Cohort (CC75C) study, UK. MethodRetrospective analysis of prospective data from males and females aged ≥85 years at death who died within a year of taking part in any CC75C survey (n = 320); death certificate linkage. ResultsOnly 7% changed their address in their last year of life, yet 52% died somewhere other than their usual address at the time of death. Over two-thirds were living in the community when interviewed <1 year before death, but less than one-third who had lived at home died there (less than one-fifth in sheltered housing). Care homes were the usual address of most people dying there (77% in residential homes, 87% in nursing homes) but 15% of deaths in acute hospital came from care homes. ConclusionMore than half the study sample of individuals of advanced old age had a change in their place of residence or care in their last year of life. These findings add weight to calls for improved end-of-life care in all settings, regardless of age, to avoid unnecessary transfers. The study data provide a baseline that can help plan and monitor initiatives to promote choice in location of care at the end of life for the very old. Keywords aged; aged 80 or over; aging in place; frail elderly; terminal care. INTRODUCTIONEnd-of-life care for older people is now an acknowledged priority.1 Recent UK policy initiatives and reports recognise the increasing number of people who will be dying in very old age.2-5 Emphasis on a care pathway approach highlights the importance of the place of care, place of death, and transitions between them.6-8 The NHS End of Life Care Programme's aims include reducing emergency admissions and transfers from care homes to hospital in the last week of life, alongside providing the support needed to enable people to die where they choose. 9 The policy drive to facilitate 'good deaths' at home envisages savings on costly acute care, enhancing value for money at the same time as choice, quality, and equality. 2,10,11 In many developed countries, deaths, including inhospital deaths, are rising fastest among ≥85-year olds. 1,12,13 Data are scarce on older people's place of care trajectories before death,

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“…Nonetheless, some limitations remain in terms of the availability and quality of sociodemographic information recorded on death certificates (Houttekier et al, 2009). This applies to Belgium as well as to other European countries (Cohen et al, 2007). More information is available for the BCR, the Flemish Region and Italy than in other countries (Cohen et al, 2007) because the municipal administration provides the sociodemographic information for the death certificates.…”

Section: Death Certificatesmentioning

confidence: 99%

“…This applies to Belgium as well as to other European countries (Cohen et al, 2007). More information is available for the BCR, the Flemish Region and Italy than in other countries (Cohen et al, 2007) because the municipal administration provides the sociodemographic information for the death certificates. Still, this information is mostly either out of date (e.g.…”

Section: Death Certificatesmentioning

confidence: 99%

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Data inventory of health inequalities among adolescents and young adults in the Brussels-Capital Region

Grande¹,

Vandenheede²,

Deboosere³

2014

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Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses

Cited by 62 publications

References 47 publications

Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study

Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study

Place of death for the ‘oldest old’: ≥85-year-olds in the CC75C population-based cohort

Data inventory of health inequalities among adolescents and young adults in the Brussels-Capital Region

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