Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in Ireland from 2016 to 2046.
Methods: Static modelling of secondary data. First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness.
Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland's relatively young population. People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.
BACKGROUND: End-of-life experience is a subject of significant policy interest. National longitudinal studies offer valuable opportunities to examine individual-level experiences. Ireland is an international leader in palliative and end-of-life care rankings. We aimed to describe the prevalence of modifiable problems (pain, falls, depression) in Ireland, and to evaluate associations with place of death, healthcare utilisation, and formal and informal costs in the last year of life.
METHODS: The Irish Longitudinal Study on Ageing (TILDA) is a nationally representative sample of over-50-year-olds, recruited in Wave 1 (2009-2010) and participating in biannual assessment. In the event of a participant's death, TILDA approaches a close relative or friend to complete a voluntary interview on end-of-life experience. We evaluated associations using multinomial logistic regression for place of death, ordinary least squares for utilisation, and generalised linear models for costs. We identified 14 independent variables for regressions from a rich set of potential predictors. Of 516 confirmed deaths between Waves 1 and 3, the analytic sample contained 375 (73%) decedents for whom proxies completed an interview.
RESULTS: There was high prevalence of modifiable problems pain (50%), depression (45%) and falls (41%). Those with a cancer diagnosis were more likely to die at home (relative risk ratio: 2.5; 95% CI: 1.3-4.8) or in an inpatient hospice (10.2; 2.7-39.2) than those without. Place of death and patterns of health care use were determined not only by clinical need, but other factors including age and household structure. Unpaid care accounted for 37% of all care received but access to this care, as well as place of death, may be adversely affected by living alone or in a rural area. Deficits in unpaid care are not balanced by higher formal care use.
CONCLUSIONS: Despite Ireland's well-established palliative care services, clinical need is not the sole determinant of end-of-life experience. Cancer diagnosis and access to family supports were additional key determinants. Future policy reforms should revisit persistent inequities by diagnosis, which may be mitigated through comprehensive geriatric assessment in hospitals. Further consideration of policies to support unpaid carers is also warranted.
Following the introduction of do-not-resuscitate (DNR) orders in the 1970s, there was widespread misinterpretation of the term among healthcare professionals. In this brief report, we present findings from a survey of healthcare professionals. Our aim was to examine current understanding of the term do-not-attempt-resuscitate (DNAR), decision-making surrounding DNAR and awareness of current guidelines. The survey was distributed to doctors and nurses in a university teaching hospital and affiliated primary care physicians in Dublin via email and by hard copy at educational meetings from July to December 2014. A total of 519 completed the survey. The response rate in the hospital doctors group was 35.5% (187/527), 19.8% (292/1477) in the nurses group but 68.8% (150/218) in the specialist nurses group and 40% (40/100) in the primary care physician group. Alarmingly, our results demonstrate that 26.8% of staff nurses and 30% of primary care physicians surveyed believed that a patient with a DNAR order could not receive any/at least one of a list of simple treatments including antibiotics, physiotherapy, intravenous fluids, pain relief, oxygen, nasogastric feeding or airway suctioning, which were higher percentages compared to the other hospital doctors and experienced nurses groups with statistically significant differences (p<0.001). Furthermore, a higher percentage of staff nurses (26.8%) and primary care physicians (22.5%) believed that a patient with a DNAR order could not be referred to hospital from home/a nursing home, when compared with other healthcare groups (p<0.001). Our findings highlight continued misunderstanding and over-interpretation of DNAR orders. Further collaboration and information is required for meaningful Advance Care Plans.