Resurrecting treatment histories of dead patients
Available from: Oscar Zurriaga
- "By avoiding including patients that died suddenly and unexpectedly, we will be able to study care that was truly delivered in the context of a dying process. Additionally, while retrospective designs may have their limitations to resurrect certain aspects of the treatment histories of deceased patients , it is the most appropriate design to identify a representative sample of deaths and to make population-based estimates about who received palliative care [49,50]. Prospective follow-up studies cannot follow all patients until death hence leaving patients living the longest underrepresented [23,51]. "
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Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology.
Nationwide representative Networks of General Practitioners (GPs)--ie epidemiological surveillance systems representative of all GPs in a country or large region of a country--in Belgium, The Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009-2010).
A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in The Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries.
Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.
Available from: Doris Howell
- "Creating a decedent cohort to retrospectively evaluate services used in a time window prior to death has been criticized (Bach et al. 2004) and defended (Earle and Ayanian 2006; Teno and Mor 2005; Barnato and Lynn 2005) as a method to study end-of-life care. Both sides agree that this approach is reasonable to describe events very close to death (six months is close to death and two weeks is even closer), as used in the present study. "
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ABSTRACT: This study describes acute care hospital death, physician house calls and home care near the end of life among patients who died of cancer and the factors that are associated with these events and services. It is a population-based retrospective study that uses linked administrative healthcare data. The cohort includes all patients who died of cancer between 2000 and 2004 in Ontario, Canada.Fifty-five per cent of patients died in acute care hospital, 68% received home care in the last 6 months of life and 24% received at least one physician house call in the last 2 weeks of life. Increased age was associated with a decreased likelihood of each event or service. Women were less likely to die in acute care and more likely to receive home care. Residents in low-income neighbourhoods were less likely to receive house calls or home care. Patients who received home care or house calls were less likely to die in acute care.Our observations add to those in the literature, suggesting a need to increase the use of supportive care services at the end of life in hopes of decreasing the need for acute care. They also serve as a baseline for future comparison, which is of particular interest since new government policies directed at end-of-life care were recently introduced.
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ABSTRACT: To analyse the effect of GP home visits on the granting of a terminal declaration (TD) and on place of death.
A total of 2025 patients with cancer as the primary cause of death in the period 1997-1998, were investigated in a mortality follow-back design using the Danish Cancer Register and four administrative registers. The Danish TD can be issued by a physician for patients with an estimated prognosis of six months or less. The TD gives the right to economic benefits and increased care for the dying patient.
The island of Funen/Denmark.
Main outcome--hospital death. Intermediate outcome--TD.
A total of 38% of patients received a TD and 56% died in hospital. GP home visits in the week before TD (odds ratio (OR): 16.8; 95% CI: 8.2-34.4), as well as four weeks before TD (OR: 6.4; 95% CI: 4.5-9.2) were associated with an increased likelihood of receiving a TD. GP home visits in the group with TD (OR: 0.18; 95% CI: 0.11-0.29) and the group without TD (OR: 0.08; 95% CI: 0.05-0.13) was inversely associated with hospital death. A dose-response relationship was found in both groups.
Persistent involvement by the GP is associated with improved end-of-life care for cancer patients. Provided that temporal relations are taken into account, the mortality follow-back design can be a suitable and ethical research method to highlight and monitor end-of-life cancer care.
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