Isabelle Marcoux

Comparing end-of-life practices in different policy contexts: a scoping review

Objectives End-of-life policy reforms are being debated in many countries. Research evidence is used to support different assumptions about the effects of public policies on end-of-life practices. It is however unclear whether reliable international practice comparisons can be conducted between different policy contexts. Our aim was to assess the feasibility of comparing similar end-of-life practices in different policy contexts. Methods This is a scoping review of empirical studies on medical end-of-life practices. We developed a descriptive classification of end-of-life practices that distinguishes practices according to their legal status. We focused on the intentional use of lethal drugs by physicians because of international variations in the legal status of this practice. Bibliographic database searches were supplemented by expert consultation and hand searching of reference lists. The sensitivity of the search strategy was tested using a set of 77 articles meeting our inclusion criteria. Two researchers extracted end-of-life practice definitions, study methods and available comparisons across policy contexts. Canadian decision-makers were involved to increase the policy relevance of the review. Results In sum, 329 empirical studies on the intentional use of lethal drugs by doctors were identified, including studies from 19 countries. The bibliographic search captured 98.7% of studies initially identified as meeting the inclusion criteria. Studies on the intentional use of lethal drugs were conducted in jurisdictions with permissive (62%) and restrictive policies (43%). The most common study objectives related to the frequency of end-of-life practices, determinants of practices, and doctors’ adherence to regulatory standards. Large variations in definitions and research methods were noted across studies. The use of a descriptive classification was useful to translate end-of-life practice definitions across countries. A few studies compared end-of-life practice in countries with different policies, using consistent research methods. We identified no comprehensive review of end-of-life practices across different policy contexts. Conclusions It is feasible to compare end-of-life practices in different policy contexts. A systematic review of international evidence is needed to inform public deliberations on end-of-life policies and practice.

Euthanasia: A Confounding and Intricate Issue

Euthanasia is a term that often sparks heated debate, regardless of whether people are “for” or “against”. It is one of the most-debated ethical issues in recent decades as revealed by the considerable number of scientific publications, media coverage of specific cases, but also proposed bills in many countries. Despite its popularity and the fact that public opinion polls indicate increasing support, euthanasia is still illegal in most countries. Nevertheless, one of the most significant challenge in order to have an informed debate on this issue is to determine what euthanasia essentially is. In popular discourse, for example, euthanasia is often associated with expressions such as “wanting to die with dignity”, “not wanting to be kept alive against one’s wishes”, “not wanting to suffer”, and “wanting to die rather than live in a certain condition”. But, logically, if in most countries euthanasia is illegal, does this mean that these wishes run counter to current practices, or even that dying with dignity be against the law? Of course not, but in the context of the debate on the legalisation of euthanasia, it is legitimate to wonder about the meaning of this loaded term. Among members of the public and even health care practitioners, the term euthanasia is apparently used to refer to situations ranging from the last injection allowing a person to pass from life to death in a context of incurable illness, through withholding treatment that would do more harm than good (futile treatment) and withdrawing life support that keeps the person alive (mechanical ventilation, feeding and hydration tubes), to relieving the pain and other symptoms of persons at the end of life whose next breath may well be their last. The use of adjectives “passive” and “active” with the term euthanasia, to describe legal and illegal practices, is undoubtedly associated with this common clustering of concepts. Given this situation, the objectives of this chapter are to delineate exactly what is meant by the term euthanasia, and to see how the variable interpretations of this term can lead to confusion and misunderstanding that often render debate pointless. Part 2 describes what euthanasia is now considered to consist in, and puts it in perspectives with other types of end-of-life decisions that characteristically arise in medical practice. Part 3 lists studies that have attempted to clarify people’s understandings of euthanasia and particularly in relation to other end-of-life practices. Part 4 discusses the interpersonal, societal and political issues raised by these varied understandings of euthanasia according to various groups.

International changes in end-of-life practices over time: a systematic review

BackgroundEnd-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices.MethodsWe conducted a systematic review of empirical studies on medical end-of-life practices, including treatment withdrawal, the use of drugs for symptom management, and the intentional use of lethal drugs. A search strategy was conducted in MEDLINE, EMBASE, Web of Science, Sociological Abstracts, PAIS International, Worldwide Political Science Abstracts, International Bibliography of the Social Sciences and CINAHL. We included studies that described physicians’ actual practices and estimated annual frequency at the jurisdictional level. End-of-life practice frequencies were analyzed for variations over time, using logit regression.ResultsAmong 8183 references, 39 jurisdiction-wide surveys conducted between 1990 and 2010 were identified. Of those, 22 surveys used sufficiently similar research methods to allow further statistical analysis. Significant differences were found across surveys in the frequency of treatment withdrawal, use of opiates or sedatives and the intentional use of lethal drugs (X2 > 1000, p < 0.001 for all). Regression analyses showed increased use of opiates and sedatives over time (p < 0.001), which could reflect more intense symptom management at the end of life, or increase in these drugs to intentionally cause patients’ death.ConclusionThe use of opiates and sedatives appears to have significantly increased over time between 1990 and 2010. Better distinction between practices with different legal status is required to properly interpret the policy significance of these changes. Research on the effects of public policies should take a comprehensive look at trends in end-of-life practice patterns and their associations with policy changes.

Independent research needed to inform end-of-life policy choices

In their CMAJ editorial, Flegel and Fletcher[1][1] call for a national dialogue on end-of-life care, arguing that policy change should not be the result of a single court decision.[1][1] In Canada, different medical end-of-life practices, such as treatment withdrawal, use of medication justified by

Medical end-of-life practices among Canadian physicians: a pilot study

BACKGROUND Medical end-of-life practices are hotly debated in Canada, and data from other countries are used to support arguments. The objective of this pilot study was twofold: to adapt and validate a questionnaire designed to measure the prevalence of these practices in Canada and the underlying decision-making process, and to assess the feasibility of a nationally representative study. METHODS In phase 1, questionnaires from previous studies were adapted to the Canadian context through consultations with a multidisciplinary committee and based on a scoping review. The modified questionnaire was validated through cognitive interviews with 14 physicians from medical specialties associated with a higher probability of being involved with dying patients recruited by means of snowball sampling. In phase 2, we selected a stratified random sample of 300 Canadian physicians in active practice from a national medical directory and used the modified tailored method design for mail and Web surveys. There were 4 criteria for success: modified questions are clearly understood; response patterns for sensitive questions are similar to those for other questions; respondents are comparable to the overall sampling frame; and mean questionnaire completion time is less than 20 minutes. RESULTS Phase 1: main modifications to the questionnaire were related to documentation of all other medical practices (including practices intended to prolong life) and a question on the proportionality of drugs used. The final questionnaire contained 45 questions in a booklet style. Phase 2: of the 280 physicians with valid addresses, 87 (31.1%) returned the questionnaire; 11 of the 87 declined to participate, for a response rate of 27.1% (n = 76). Most respondents (64 [84%]) completed the mail questionnaire. All the criteria for success were met. INTERPRETATION It is feasible to study medical end-of-life practices, even for practices that are currently illegal, including the intentional use of lethal drugs. Results from this pilot study support conducting a large national study, but additional strategies would be necessary to improve the response rate.