Limits...
A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol.

Chambaere K, Bilsen J, Cohen J, Pousset G, Onwuteaka-Philipsen B, Mortier F, Deliens L - BMC Public Health (2008)

Bottom Line: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue.The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions.There are however also some limitations to the study design.

View Article: PubMed Central - HTML - PubMed

Affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel, Belgium. kchambae@vub.ac.be

ABSTRACT

Background: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates.

Study design: Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response.

Discussion: The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design.

Show MeSH
Schematic overview of the mailing and anonymity procedure.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
getmorefigures.php?uid=PMC2533325&req=5

Figure 2: Schematic overview of the mailing and anonymity procedure.

Mentions: Safeguarding the anonymity of physicians and patients is not only necessary for obvious ethical reasons but also for judicial reasons. Some life-ending acts can be deemed unacceptable by the Belgian criminal law and if anonymity were not guaranteed physicians could risk criminal prosecution for end-of-life decisions reported in this study. Moreover, the response rate to the questionnaire as well as the reliability of the answers will only improve if physicians feel safe enough to answer. Therefore a rigorous procedure was implemented to guarantee that no completed questionnaire could be linked to a particular patient or physician and that both patients and physicians remained anonymous. This procedure has been used in past studies on ELDs, and has proved effective [9,10,13,14,20]. To meet the requirement of anonymity, the different stages of the survey i.e. the sampling and mailing, receiving and processing of the questionnaires are spatially separated. Each stage is performed by different persons. Four parties are involved in the survey, each with specific functions. For a schematic overview of the procedure, see Figure 2.


A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol.

Chambaere K, Bilsen J, Cohen J, Pousset G, Onwuteaka-Philipsen B, Mortier F, Deliens L - BMC Public Health (2008)

Schematic overview of the mailing and anonymity procedure.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC2533325&req=5

Figure 2: Schematic overview of the mailing and anonymity procedure.
Mentions: Safeguarding the anonymity of physicians and patients is not only necessary for obvious ethical reasons but also for judicial reasons. Some life-ending acts can be deemed unacceptable by the Belgian criminal law and if anonymity were not guaranteed physicians could risk criminal prosecution for end-of-life decisions reported in this study. Moreover, the response rate to the questionnaire as well as the reliability of the answers will only improve if physicians feel safe enough to answer. Therefore a rigorous procedure was implemented to guarantee that no completed questionnaire could be linked to a particular patient or physician and that both patients and physicians remained anonymous. This procedure has been used in past studies on ELDs, and has proved effective [9,10,13,14,20]. To meet the requirement of anonymity, the different stages of the survey i.e. the sampling and mailing, receiving and processing of the questionnaires are spatially separated. Each stage is performed by different persons. Four parties are involved in the survey, each with specific functions. For a schematic overview of the procedure, see Figure 2.

Bottom Line: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue.The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions.There are however also some limitations to the study design.

View Article: PubMed Central - HTML - PubMed

Affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel, Belgium. kchambae@vub.ac.be

ABSTRACT

Background: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates.

Study design: Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response.

Discussion: The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design.

Show MeSH