Research project TA/00/34 (Research action TA)
Background
Due to the aging of the population, the increasing prevalence of chronically illnesses, and the medical (life-supporting) technological developments, physicians and patients are ever more confronted with decisions with a potential or certain life-shortening effect. Important social differences in all stages of life have been described in the literature. Hence, social inequality may also be expected with regard to end-of-life decisions (ELDs). However, little is known about this relatively new development that confronts caregivers and policy makers.
End-of-life medicine includes medical care at the end of life, e.g. palliative care, but also decisions on medical interventions that, intended or unintended, may hasten the moment of dying. Incidence of medical end-of-life decisions has been estimated at about 40% of all deaths, in Flanders as well as in other European countries. In the past years, studies were conducted in Belgium (and in the Netherlands, where there is more experience and knowledge on ELDs) that can give an insight in social inequalities in ELDs and can identify vulnerable groups risking not to die in the best possible circumstances. Factors that might play a role are socio-economical status, education, sex, ethnicity, familial status, region, etc. However, these studies are fragmented, focused on certain patient populations (e.g. cancer patients), on one type of ELD, and/or using different designs. Hence, from these data, it is not evident to draw policy-making conclusions. Furthermore, concerning ELDs, the South of Belgium, Wallonia, is scientifically spoken terra incognito. Most studies in the past have been done in the North, in Flanders.
Themes
A. Social differences in the prevalence and characteristics of ELDs in Flanders, Brussels, Wallonia, and the Netherlands.
1. What is the prevalence of ELDs?
2. What are the characteristics of the decision-making process?
3. Identification of groups at risk for suboptimal information and involvement in the decision-making process
B. Policy implications
4. Which initiatives (e.g. education, training, guidelines, organisation of care) can improve the quality of ELDs?
5. Which policy initiatives can improve the quality of ELDs in groups at risk?
Aims
The purpose of the project is to conduct a synthesis of existing information concerning social inequality in ELD’s, i.e.:
1. A systematic literature review of social inequalities in End-of-Life Decisions (ELDs)
2. A secondary analysis of existing databases about ELDs.
3. The identification of groups risking suboptimal information and involvement in ELDs.
4. A policy study of the needs and barriers with regard to social inequality in ELDs
The generated knowledge will serve as a fundamental basis for the development of further policy concerning public health at the end of life, and empower the (future) patients with instruments that could improve the patient autonomy at the end of life.
The study also aims at the development of guidelines concerning rights of caretakers (patients, relatives) and the development of professional guidelines for the caregivers involved (physicians, nurses, etc). Further, this study aims at generating recommendations concerning improving the quality of ELDs, especially for socially vulnerable groups who are at risk to receive suboptimal medical end-of-life decision-making.
Methods
In this project, a systematic literature review will be combined with an analysis of quantitative and qualitative data to get in-depth insight in social differences in end-of-life decision-making. The data that will be used in this study are collected in studies with high response rates. Some of the databases are weighted so that the results are representative of the whole population.
We will use existing databases in Belgium and the Netherlands, that include the perspectives of physicians, nurses and patients. Most of these databases are already accessible to the researchers. Other databases are currently being developed in our ongoing projects. We will use the following databases:
1. Death certificate studies with retrospective surveys regarding ELDs sent to physicians attending deaths (databases from 1998, 2001, and 2007 – Flanders; sample N=5000 for each year).
2. Questionnaire study among general practitioners on the basis of registrations of deaths in Belgium and the Netherlands through networks of general practitioners (SENTI-MELC study) and interviews (only in Belgium) with general practitioners
3. Reported euthanasia cases (Federal Committee Euthanasia)
4. Perception of patients and relatives, caregivers and experts regarding end-of-life care (interviews and focus group studies)
5. Longitudinal interviews with patients who have lung cancer (bimonthly interviews as from the initial diagnosis until death)
Based on a synthesis of these results, a first draft report with recommendations will be delivered. Through the Delphi method and expert groups, opinions of experts will be used to draft realistic recommendations aimed at decreasing social inequalities in end-of-life decision-making.
Expected results and products
The project will deliver a report including:
• A systematic literature review based on empirical evidence
• An empirical analysis of ELDs based on the different databases
• A comparative analysis between the regions (Flanders, Brussels, Wallonia, Netherlands)
• Recommendations and information relevant for policy making (e.g. identification of vulnerable groups and related problems, needs, barriers and suggestions for improvement)
• Recommendations supported by experts for caregivers, the general public and health care organisations regarding optimal end-of-life communication and how to improve the involvement of patients).
Medische beslissingen rond het levenseinde: implicaties voor een public health beleid : synthese
Brussel : Federaal Wetenschapsbeleid, 2011 (SP2285)
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Décisions médicales et fin de vie : implications pour une politique de santé publique : résumé
Bruxelles : Politique scientifique fédérale, 2011 (SP2286)
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Medical end-of-life decisions: implications for public health policy : summary
Brussels : Belgian Science Policy, 2011 (SP2287)
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