Skip to main content
Download PDF
  • Research article
  • Open access
  • Published:

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

BMC Health Services Research volume 16, Article number: 539 (2016) Cite this article

Abstract

Background

End-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.

Methods

We 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.

Results

Among 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.

Conclusion

The 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.

Peer Review reports

Background

End-of-life policies are hotly debated in many countries, with international evidence used to support or oppose legal reforms [1–3]. For example, recent policy proposals on the legalization of “medical aid in dying”, “physician-assisted suicide” and “euthanasia” in Canada, the United Kingdom, and France have made frequent references to empirical research from other countries [4, 5].

A scoping review highlighted the need to take a comprehensive look at international end-of-life practice variations, because existing reviews tended to focus on specific practices or selected countries [6]. More specifically, trends in patterns of “euthanasia” and “assisted suicide” are most frequently discussed, with less attention being put on treatment withdrawal and the use of drugs for symptom management [7–11]. This could be problematic as it limits the ability to study the effects of public policies on the full range of end-of-life practices. Also, changes in a single jurisdiction might reflect global trends in end-of-life practices, rather than domestic patterns.

Objective

The goal of this research was to systematically review international time trends in end-of-life practices.

Methods

Design

We conducted a systematic review of empirical studies on medical end-of-life practices (see Fig. 1 for the flowchart).

Fig. 1
figure 1

Flowchart of study inclusion and exclusion

Full size image

Definitions and classification of end-of-life practices

Definitions and labelling of medical end-of-life practices vary and no consensus exists on terminology at the international level. For example, definitions of “euthanasia” have evolved over time and across jurisdictions [12, 13]. For these reasons, we developed a descriptive classification of medical end-of-life practices. The classification is based on observable medical behaviors that can be studied empirically, and distinguishes practices with different legal status across jurisdictions, including:

  1. 1.

    Withdrawing or withholding of treatments that have the potential to prolong life;

  2. 2.

    Use of drugs for symptom management even if an unintended side-effect may be to shorten life;

  3. 3.

    Intentional use of a lethal drug.

The classification further distinguishes whether end-of-life practices are carried out: a) with a voluntary and informed request made by the patient; b) with a voluntary advanced directive made by a previously competent patient, c) with a substitute request by the proxy decision-maker of an incompetent patient; or d) without a patient or substitute request. We also distinguish whether lethal drugs are administered by patients or by someone else.

Testing of this classification in a scoping review allowed for the translation of different end-of-life practice definitions into comparable categories, despite variations in labeling and definitions used in the original studies [6].

Inclusion criteria

To be included, articles written in English or French needed to: 1) report on physicians’ actual end-of-life practices (rather than their opinions and attitudes); 2) include data on treatment withholding/withdrawal, use of drugs for symptom management, and the intentional use of lethal drugs; 3) allow estimates of annual practice frequency at the jurisdictional level. We excluded articles limited to specific populations (e.g. neonates) or practice settings (e.g. nursing homes). We also excluded articles using physicians’ self-reporting of end-of-life practices to public regulatory authorities (e.g. euthanasia review committees) as this data source would not allow comparisons across jurisdictions with different legislative frameworks and would not provide information on some categories of practices included in our classification (e.g. intentional use of lethal drugs without patient request).

Search strategy

The literature databases searched were: MEDLINE, Embase, PsycInfo, Web of Science (SCI, SSCI), Sociological Abstracts, EMBASE, PAIS International, Worldwide Political Science Abstracts, International Bibliography of the Social Sciences and CINAHL. Search terms are listed in Appendix 1. The literature was searched in April 2014 and were pooled with articles identified in a previous scoping review that also included grey literature and online publications [6].

Data screening and extraction

Two reviewers separately screened each article and any discrepancies regarding the inclusion or exclusion of articles were resolved in team meetings. The information and statistics on these articles were extracted by one of two assistants and two review authors, verified by one of the review authors (GG or YSC), and entered in a FileMaker Pro v. 13 database developed with an information technology specialist. The items extracted from articles included year of publication, authors, title, abstract, source database, the types of end-of-life practice studied, funding sources, types of study (qualitative, quantitative or mixed), characteristics of study participants, and affiliations of first authors. When the same survey was reported in multiple articles, an index article was used to extract information on data collection methods (including duration, population groups and region of study), response rates, selective reporting for outcomes, details in statistical procedures, total numbers of deaths and summary percentages of end-of-life practices in each jurisdiction.

Comparability of study methods and risk of bias

The objectives for assessing the risk of bias were to 1) identify the risk of bias in estimated frequencies; 2) understand the heterogeneity of study methods to identify a subset of comparable studies using similar reference populations and outcome measures. We used quality appraisal criteria designed for systematic reviews [14, 15] and observational studies [16, 17]. The assessment criteria were: background information (population coverage, number of studied deaths, total number of deaths in the jurisdiction) [18]; basic survey information (article types, study design, author affiliations) [16]; design-specific assessment (statistical, conflict of interest, response rate, frequency of measurement, sample sizes, methods to adjust for selection bias) [19–21]; and practice-related assessment (methods for measuring outcome variables and selective outcome reporting) [22]. After reviewing the included surveys, the comparability of study design and statistical methods were assessed in the team meetings. Surveys using comparable methods (population characteristics, questionnaire types, statistical methods, and reporting methods) were retained for regression analysis.

Data analysis

The main outcome measure was the annual frequency of end-of-life practices as a percentage (%) of all deaths [7]. We further collected the 95 % confidence intervals (CIs) of the weighted frequencies or the nominators and denominators of the reported frequencies.

The extracted data were analyzed with R programming languange and RStudio (version 0.98.1091, RStudio Inc.). The surveys that adopted multiple-stage sampling usually provided the mean percentages of end-of-life practice with 95 % CIs. The comparisons of the percentages of end-of-life practices across jurisdictions were carried out using Chi-squared tests. If Chi-squared tests were not appropriate, simulation was used [23].

The relationships between the frequencies of end-of-life practices and time (year of data collection) were assumed to be linear and were analyzed with logit regression. The null hypotheses were that there were no associations between the frequencies and time (regression coefficients of time equal to zero). Jurisdictions or survey types that were found to be significantly associated with different levels of end-of-life practice frequencies [7] were adjusted in models that included all eligible surveys. Due to the variability originating from stratified sampling and adjustment for non-response, the 95 % CIs of reported frequencies were taken into account using simulations. The mean percentages were used to draw the regression lines in the graphs. The magnitudes of change in end-of-life practices from all included surveys were estimated with the differences in the predicted frequencies of the Dutch death certificate surveys from 1990 (or 2001 for use of sedatives for symptom management) to 2010 based on the regression models that included all surveys, since the Dutch surveys were the only ones to have been implemented throughout the period. The Dutch and Belgian surveys were also analyzed with separate regression models.

Results

Among 8183 references, 39 jurisdiction-wide surveys were identified. Of those, 22 surveys used sufficiently similar research methods to allow further statistical analysis and comparisons (Appendix 2). Response rates ranged from 40.0 to 84.0 % (median: 65.9 %). The 22 included surveys adopted or modified questionnaires that were developed in the Netherlands in the early 1990s [24] and used similar definitions of end-of-life practices, survey methods, and statistical analysis. Two main sampling strategies were used to identify responding physicians: random sampling of death certificates, and the use of physician registries. In these surveys, physicians were either interviewed individually or responded to self-administered questionnaires.

Figures 2, 3, 4, 5, 6 and 7 present end-of-life practice frequencies by year. The original studies did not allow to fully distinguishing end-of-life practices according to their legal status, as per our descriptive classification (Table 1). For example, original studies did not distinguish treatment withdrawal with or without voluntary patient request. Also, the use of opiates and sedatives did not distinguish whether these drugs were adjusted to symptom management or used with the intention to cause death.

Fig. 2
figure 2

Withholding or withdrawal of treatment with the potential to prolong life. Note: CI = confidence interval; United Kingdom = UK. X2 = 36833 (null hypothesis: all frequencies the same); p < 0.001. The coefficient of year = −0.002, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite. The coefficient of year = −0.0045, p < 0.001 among Dutch surveys only. The coefficient of year = 0.0161, p < 0.001 among Belgian surveys only. See Appendix 3 for regression coefficients

Full size image
Fig. 3
figure 3

Use of opiates with possible life-shortening effects. Note: See Fig. 2 for abbreviations. X2 = 37199 (null hypothesis: all frequencies the same), p < 0.001. Thecoefficient of year = 0.0440, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite). The coefficient of year = 0.0454, p < 0.001 among Dutch surveys. The coefficient of year = 0.0513, p < 0.001 among Belgian surveys. See Appendix 3 for regression coefficients

Full size image
Fig. 4
figure 4

Use of sedatives with possible life-shortening effects. Note: See Fig. 2 for abbreviations. X2 = 19410 (null hypothesis: all frequencies the same), p < 0.001. The coefficient of year = 0.1006, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite. The coefficient of year = 0.0974, p < 0.001 among Dutch surveys. The coefficient of year = 0.1162, p < 0.001 among Belgian surveys. See Appendix 3 for regression coefficients

Full size image
Fig. 5
figure 5

Intentional use of lethal drugs self-administered by patients. Note: See Fig. 2 for abbreviations. X2 = 1716 (null hypothesis: all freqiuencies the same), p < 0.001. The coefficient of year = −0.0492, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite. The coefficient of year = −0.0442, p < 0.001 among Dutch surveys. The coefficient of year = − 0.2291, p < 0.001 among Belgian surveys. See Appendix 3 for regression coefficients

Full size image
Fig. 6
figure 6

Intentional use of lethal drugs administered by professionals with patient request. Note: See Fig. 2 for abbreviations. X2 = 8678 (null hypothesis: all frequencies the same), p < 0.001 (simulated). The coefficient of year = 0.0159, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite). The coefficient of year = 0.0142, p < 0.001 among Dutch surveys. The coefficient of year = 0.0730, p < 0.001 among Belgian surveys. See Appendix 3 for regression coefficients

Full size image
Fig. 7
figure 7

Intentional use of lethal drugs administered by professionals without patient request. Note: See Fig. 2 for abbreviations. X2 = 17372 (null hypothesis: all frequencies the same), p < 0.001 (simulated). The coefficient of year = −0.0574, p < 0.001 among all surveys; greater than zero suggesting positive changes from 1990 to 2010, lower suggesting the opposite). The coefficient of year = −0.0496, p < 0.001 among Dutch surveys. The coefficient of year = −0.0924, p < 0.001 among Belgian surveys. See Appendix 3 for regression coefficients

Full size image
Table 1 Relationship between systematic review classification and original studies
Full size table

Treatment withholding/withdrawal and the use of drugs for symptom management were the most frequent end-of-life practices. The intentional use of lethal drugs was less frequent, with frequency consistently below 5 % of all deaths.

The total predicted percentages of death in which physicians reported having made an end-of-life decision increased from 38.0 to 64.9 % between 1990 and 2010. Significant changes were found in the frequency of all end-of-life practices over time (p < 0.001 for all). The magnitude of change in the predicted frequencies of end-of-life practices was greater for the use of opioids (+15.27 % in annual practice frequency between 1990 to 2010) and for the use of sedatives with possible life-shortening effects (+6.78 %). Changes in frequencies were smaller for treatment withholding or withdrawal (−0.73 %), and for the intentional use of lethal drugs self-administered by patients (−0.17 %), administered by professionals with patient request (+0.71 %), or administered by professionals without patient request (−0.65 %). Changes in opioid use were significantly correlated with changes in: the use of sedatives, in the intentional use of lethal drugs administered by patients, and in the intentional use of lethal drugs without patient request (p < 0.05). Time trends estimated from Dutch or Belgian data showed the same directions of change as those predicted from all jurisdictions, except for withholding or withdrawal of treatment (p < 0.001).

Discussion

Key findings

To the best of our knowledge, this is the first systematic review to take a comprehensive look at international variations in end-of-life practices over time from 1990 to 2010. This review showed an increase in the frequency of cases where physicians reported having made a decision that may have influenced the timing of death, which is consistent with previous findings [11]. A unique contribution of this review is its documentation of a significant increase in the use of opiates and sedatives over time, as opposed to other end-of-life practices.

The way opiate and sedative use is categorized in the original studies makes it difficult to interpret these time trends, because study questionnaires do not clearly distinguish the use of opiates and sedatives with or without the intention to hasten death [24]. For example, practices labeled in original studies as “intensification of symptom alleviation” include the use of drugs with a partial intention to hasten death [25–27]. Accordingly, the observed increase in the use of opiates and sedatives could mean that physicians are becoming more prone to use these drugs for symptom management. It may also reflect increasingly using opiates and sedatives with the intention of hastening patients’ death among physicians. The observation that the use of opiates with possible life-shortening effects is negatively correlated with the intentional use of lethal drugs could support the hypothesis of a “substitution effect” between different end-of-life practices. This suggests that drugs clearly associated with an intention to hasten death (e.g. neuromuscular blockers) are being replaced by opiates and sedatives in situations where the use of lethal drug is more difficult to justify in legal terms. Alternatively, these trends could simply reflect more professional willingness and patients’ expectations to treat pain and symptoms at the end-of-life. Use of these drugs could have become more strongly embedded in clinical and social practices as more information becomes available about the beneficial use of opiates and sedatives for symptom management [28].

Policy and research implications

This review highlights the importance of exploring the potential effects of public policies on all end-of-life practices, rather than focusing exclusively on those targeted in policy documents. For example, a number of studies have explored the relationship between “euthanasia” legalization in the Netherlands and Belgium and the use of lethal drugs with the explicit intention to hasten death [29, 30]. However, the review shows that the magnitude of predicted changes in intentional use of lethal drugs is much less than the use of opioids or sedatives with possible life-shortening effects. Focusing on small changes in the frequencies of intentional use of lethal drugs risks overlooking the greater potential impact on the use of opiates and sedatives in end-of-life care.

This review also highlights the need for better articulation between end-of-life research and policy. The current confusion in empirical research between the use of opiates and sedatives with or without the intention to hasten death makes it difficult to interpret changing patterns in the use of these drugs because practices with different legal status are grouped together [6]. Better alignment between end-of-life practice classification in policy documents and empirical research would facilitate testing of policy-relevant hypotheses about the potential impacts of different policies on end-of-life practices. Our findings also underscore the importance of international research collaborations to harmonize study methods. Such collaborations have emerged in Europe (e.g. the EURELD consortium [31]), but are less developed in North America and elsewhere, which limits the potential for international comparisons.

Strengths and limitations

A strength of this review is the exhaustive efforts made to synthesize international evidence on a range of end-of-life practices. This approach offers a complementary perspective to previous reviews that focused on a single practice or a specific jurisdiction [7, 10, 29, 32]. The use of a descriptive classification of end-of-life practices is a novel approach to systematically review evidence on end-of-life practice, and helped deal with international variations in labeling and definitions. This descriptive classification also clarifies areas of potential confusion when practices with different legal status were grouped together in original studies. Variations due to sampling and weighting procedures were also taken into account in the statistical analysis of end-of-life practice frequency. This is an improvement upon previous reviews that did not conduct statistical tests at all, or neglected the sampling variability of reported frequencies [7].

There are several limitations in this review. We only search for studies published in English and French. The increase in opioid use may result from both the intent to manage symptoms and to hasten death and we do not have evidence to assess this relationship. We found that comparative international evidence is limited by differences in study methods, end-of-life practice definitions, data collection approaches, sampling strategies, response rates, and target patient and professional groups. A limited number of surveys used similar methods allowing comparisons across jurisdictions and over time. Nonetheless, some degree of heterogeneity remains in the included surveys. For example, the two United Kingdom studies included surveyed different physician groups and used different versions of the same questionnaire [33, 34]. Other European surveys also excluded children under one years old [31] or drew their sample from a specific region (e.g. Flanders in Belgium) [35]. As a result, some of the observed international variations may still reflect differences in study methods rather than actual differences in practice frequency. Also, only a limited number of European jurisdictions have conducted repeated surveys over time. Accordingly, regression models are largely driven by data from the Netherlands and Belgium, and observed time trends may be less generalizable to other jurisdictions. The lack of studies in other jurisdictions, such as the United States and Canada may also limit the generalizability of ther results.

Conclusions

The use of opiates and sedatives with possible life-shortening effects appears to have significantly increased over time from 1990 to 2010. Treatment withholding/withdrawal and the use of drugs for symptom management are the most frequent end-of-life practices. The intentional use of lethal drugs is less frequent, with frequency consistently below 5 % of all deaths. 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 changing the end-of-life practice patterns, rather than focus on a limited range of practices.

Abbreviations

CI:

Confidence interval

CINAHL:

Cumulative index to nursing and allied health literature

EMBASE:

Excerpta Medica dataBASE

EURELD:

European End-of-life Decisions Consortium

MEDLINE:

Medical literature analysis and retrieval system online

PAIS:

Public affairs information service

SCI:

Science citation index

SSCI:

Social sciences citation index

References

  1. Downar J, Boisvert M, Smith D. Data to support assisted dying. BMJ. 2014;349(349):g4966.

    Article  PubMed  Google Scholar 

  2. McIlroy GE. Some data on assisted dying from Oregon are worrying. BMJ. 2014;349(349):g4961.

    Article  PubMed  Google Scholar 

  3. Suarez-Almazor ME, Belzile M, Bruera E. Euthanasia and physician-assisted suicide: a comparative survey of physicians, terminally ill cancer patients, and the general population. J Clin Oncol. 1997;15(2):418–27.

    CAS  PubMed  Google Scholar 

  4. Delamothe T, Snow R, Godlee F. Why the Assisted Dying Bill should become law in England and Wales. BMJ. 2014;349(349):g4349.

    Article  PubMed  Google Scholar 

  5. Nicol J, Tiedemann M, Valiquet D. Euthanasia and Assisted Suicide: International Experiences, Parliamentary Information and Research Service, Editor. Ottawa: Library of Parliament; 2013.

    Google Scholar 

  6. Boivin A, et al. Comparing end-of-life practices in different policy contexts: a scoping review. J Health Serv Res Pol. 2015;20(2):115–23.

    Article  Google Scholar 

  7. Steck N, et al. Euthanasia and assisted suicide in selected European countries and US states: systematic literature review. Med Care. 2013;51(10):938–44.

    Article  PubMed  Google Scholar 

  8. Battin MP, et al. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups. J Med Ethics. 2007;33(10):591–7.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Rietjens JA, et al. Medical end-of-life decisions: does its use differ in vulnerable patient groups? A systematic review and meta-analysis. Soc Sci Med. 2012;74(8):1282–7.

    Article  PubMed  Google Scholar 

  10. Rietjens JA, et al. Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain? J Bioeth Inq. 2009;6(3):271–83.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Onwuteaka-Philipsen BD, et al. Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet. 2012;380(9845):908–15.

    Article  PubMed  Google Scholar 

  12. Griffiths J, Weyers H, Adams M. Euthanasia and law in Europe. Oxford: Hart Publishing; 2008.

    Google Scholar 

  13. Marcoux I. Euthanasia: A Confounding and Intricate Issue, Euthanasia - The “Good Death” Controversy in Humans and Animals, Prof. Josef Kuře (Ed.), InTech; 2011. doi:10.5772/20184. Available from: http://www.intechopen.com/books/euthanasia-the-good-death-controversy-in-humans-and-animals/euthanasia-a-confounding-and-intricate-issue.

  14. Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of Interventions. In: Higgins JPT, Green S, editors. The Cochrane Collaboration. Chichester: Wiley; 2009.

    Google Scholar 

  15. Moher D, et al. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med. 2009;6(7):e1000097.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Morestin F, et al. Method for Synthesizing Knowledge About Public Policies. Québec: National Collaborating Centre for Healthy Public Policy; 2010.

    Google Scholar 

  17. Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Serv Res Policy. 2005;10 Suppl 1:6–20.

    Article  PubMed  Google Scholar 

  18. von Elm E, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Bull World Health Organ. 2007;85(11):867–72.

    Article  Google Scholar 

  19. Sanderson S, Tatt ID, Higgins JP. Tools for assessing quality and susceptibility to bias in observational studies in epidemiology: a systematic review and annotated bibliography. Int J Epidemiol. 2007;36(3):666–76.

    Article  PubMed  Google Scholar 

  20. Freedman VA, Martin LG, Schoeni RF. Recent trends in disability and functioning among older adults in the United States: a systematic review. Jama. 2002;288(24):3137–46.

    Article  PubMed  Google Scholar 

  21. Helfand M, Balshem H. AHRQ series paper 2: principles for developing guidance: AHRQ and the effective health-care program. J Clin Epidemiol. 2010;63(5):484–90.

    Article  PubMed  Google Scholar 

  22. Higgins JPT, Altman DG, Sterne JAC. (editors). Chapter 8: Assessing risk of bias in included studies, in Cochrane Handbook for Systematic Reviews of Intervention. In: Higgins JPT, Green S, editors. 2011.

  23. Beh EJ, Lombardo R. Correspondence Analysis: Theory, Practice and New Strategies, in Wiley Series in Probability and Statistics. Hoboken: Wiley; 2014.

    Book  Google Scholar 

  24. Van Der Maas PJ, et al. Euthanasia and other medical decisions concerning the end of life. Lancet. 1991;338(8768):669–74.

    Article  Google Scholar 

  25. Bilsen J, et al. Drugs used to alleviate symptoms with life shortening as a possible side effect: end-of-life care in six European countries. J Pain Symptom Manage. 2006;31(2):111–21.

    Article  CAS  PubMed  Google Scholar 

  26. Miccinesi G, et al. Continuous deep sedation: physicians' experiences in six European countries. J Pain Symptom Manage. 2006;31(2):122–9.

    Article  PubMed  Google Scholar 

  27. Rietjens JA, et al. Terminal sedation and euthanasia: a comparison of clinical practices. Arch Intern Med. 2006;166(7):749–53.

    Article  PubMed  Google Scholar 

  28. Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncol. 2003;4(5):312–8.

    Article  PubMed  Google Scholar 

  29. Onwuteaka-Philipsen BD, et al. Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet. 2012;380:908–15.

    Article  PubMed  Google Scholar 

  30. Chambaere K, et al. Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey. CMAJ. 2010;182(9):895–901.

    Article  PubMed  PubMed Central  Google Scholar 

  31. van der Heide A, et al. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003;362(9381):345–50.

    Article  PubMed  Google Scholar 

  32. Emanuel EJ. Euthanasia and physician-assisted suicide: a review of the empirical data from the United States. Arch Intern Med. 2002;162(2):142–52.

    Article  PubMed  Google Scholar 

  33. Seale C. National survey of end-of-life decisions made by UK medical practitioners. Palliat Med. 2006;20(1):3–10.

    Article  PubMed  Google Scholar 

  34. Seale C. End-of-life decisions in the UK involving medical practitioners. Palliat Med. 2009;23(3):198–204.

    Article  CAS  PubMed  Google Scholar 

  35. Deliens L, et al. End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet. 2000;356(9244):1806–11.

    Article  CAS  PubMed  Google Scholar 

  36. van der Heide A, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007;356(19):1957–65.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Amel Zertal contributed to the study coordination and data extraction. Stéphane Ratté developed the search strategy. Fin Finaud Consultats developed the FileMaker application for data management, with assistance from Richard Boivin. Geneviève Champagne and Pierre-Luc Pichette contributed to study identification and data extraction. Djamal Berbiche was consulted for analytical methods.

Participants in the Advisory Committee meetings included Jeff Blackmer (Canadian Medical Association); Marie-Dominique Beaulieu and Bill Sullivan (College of Family Physicians of Canada); Pierre Deschamps, Bernard Grenier, Ann Soden, and Robert Delorme (Canadian Bar Association); Jean Rodrigue, Jeanine Auger, and Louis Dufresne (Ministère de la santé et des services sociaux du Québec); Justine Farley and Danielle Drouin (Réseau des soins palliatifs du Québec); Ghislaine de Langavant (Commissaire à la santé et au bien-être du Québec). Some members of the advisory committee requested that their contribution remains anonymous. Researchers listed as authors remain sole responsible for the scientific integrity of the review and study conclusions, which do not necessarily reflect the position of the individuals and organizations represented on the Advisory Committee.

Funding

This project was funded by the Canadian Institutes of Health Research (grant number: 201304KRS-305414-KRS-CFDA-176304). AB is supported by a Canada Research Chair in Patient and Public Partnership, Canadian Institutes of Health Research clinician-scientist award and a Quebec Ministry of Health Family Medicine Research award. YSC was funded by a TD fellowship and the Centre de recherche – Hôpital Charles-Le Moyne (CR-HCLM). GG was sponsored by a scholarship from the CR-HCLM. PL holds a Canada Research Chair in Health Innovations.

Availability of data and materials

The data supporting the conclusions of this article are from the studies listed in Appendix 2.

Authors’ contribution

Protocol design: AB, IM, NM, PL, MCP, RP. Development of assessment criteria and extraction items: GG, YSC, AB; Execution of search strategy & screening: YSC, GG, AB. Risk of bias assessment & acquisition of data: YSC, GG, AB. Analysis of data and simulations: YSC. Interpretation of data: YSC, AB, IM. Manuscript preparation: YSC, AB. All authors have provided critical comments, read and approved the final manuscript. AB and IM acted as co-principal investigators on the project. AB is the guarantor. All authors have read and approved the final version of the manuscript.

Competing interests

All authors declared that they have no competing interests.

Ethics approval and consent to participate

The ethics committee of Universié de Sherbrooke Hospital Centre approved this study (project number: 14–066). No individual consent required for systematic review.

Consent for publication

Not applicable.

Integrated knowledge translation

An international advisory committee group of Canadian decision-makers provided input on the framing of the review question and classification of end-of-life practices, in order to increase the policy relevance of the review. The authors remain ultimately responsible for the scientific interpretation and conclusions.

Author information

Authors and Affiliations

  1. University of Montreal Hospital Centre Research Centre (CRCHUM), Montreal, Canada

    Yi-Sheng Chao & Antoine Boivin

  2. Institut de recherche en santé publique de l’Université de Montréal, Montréal, Canada

    Antoine Boivin

  3. Interdisciplinary School of Health Science, University of Ottawa, Ottawa, Canada

    Isabelle Marcoux

  4. Université de Sherbrooke, Sherbrooke, Canada

    Geneviève Garnon

  5. Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK

    Nicholas Mays

  6. Département d’administration de la santé, Université de Montréal, Montreal, Canada

    Pascale Lehoux

  7. École nationale d’administration publique, Montreal, Canada

    Marie-Claude Prémont

  8. Scientific Institute for Quality of Healthcare, Radboud University Nijmegen, Nijmegen, The Netherlands

    Evert van Leeuwen

  9. Département de santé publique de Montréal, Institut National de Santé Publique du Québec, Montreal, Canada

    Raynald Pineault

Authors
  1. Yi-Sheng Chao
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Antoine Boivin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Isabelle Marcoux
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Geneviève Garnon
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Nicholas Mays
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Pascale Lehoux
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Marie-Claude Prémont
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Evert van Leeuwen
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Raynald Pineault
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Jeff Blackmer
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Marie-Dominique Beaulieu
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Bill Sullivan
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Pierre Deschamps
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Bernard Grenier
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Ann Soden
    View author publications

    You can also search for this author in PubMed Google Scholar

  16. Robert Delorme
    View author publications

    You can also search for this author in PubMed Google Scholar

  17. Jean Rodrigue
    View author publications

    You can also search for this author in PubMed Google Scholar

  18. Jeanine Auger
    View author publications

    You can also search for this author in PubMed Google Scholar

  19. Louis Dufresne
    View author publications

    You can also search for this author in PubMed Google Scholar

  20. Justine Farley
    View author publications

    You can also search for this author in PubMed Google Scholar

  21. Danielle Drouin
    View author publications

    You can also search for this author in PubMed Google Scholar

  22. Ghislaine de Langavant
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Antoine Boivin.

Appendix 1

Table 2 The search terms for each academic database
Full size table

Appendix 2

Table 3 Variations in study methods for 39 jurisdiction-wide surveys and 22 included in analysis of practice variation
Full size table

Appendix 3

Table 4 Coefficients of logit regression models for the frequencies of end-of-life practices
Full size table

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Chao, YS., Boivin, A., Marcoux, I. et al. International changes in end-of-life practices over time: a systematic review. BMC Health Serv Res 16, 539 (2016). https://doi.org/10.1186/s12913-016-1749-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1186/s12913-016-1749-z

Keywords

BMC Health Services Research

ISSN: 1472-6963

Contact us