Kenneth Chambaere

Medical End-of-Life Practices under the Euthanasia Law in Belgium

The legalization of physician-assisted death for terminally ill patients is a controversial medical and societal issue. These authors investigated differences in the frequency and characteristics of these practices before and after the enactment of a law in Belgium, where euthanasia was legalized in 2002.

Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey

Background: Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an explicit request from the patient, in Flanders, Belgium, where euthanasia is legal. Methods: We mailed a questionnaire regarding the use of life-ending drugs with or without explicit patient request to physicians who certified a representative sample (n = 6927) of death certificates of patients who died in Flanders between June and November 2007. Results: The response rate was 58.4%. Overall, 208 deaths involving the use of life-ending drugs were reported: 142 (weighted prevalence 2.0%) were with an explicit patient request (euthanasia or assisted suicide) and 66 (weighted prevalence 1.8%) were without an explicit request. Euthanasia and assisted suicide mostly involved patients less than 80 years of age, those with cancer and those dying at home. Use of life-ending drugs without an explicit request mostly involved patients 80 years of older, those with a disease other than cancer and those in hospital. Of the deaths without an explicit request, the decision was not discussed with the patient in 77.9% of cases. Compared with assisted deaths with the patient’s explicit request, those without an explicit request were more likely to have a shorter length of treatment of the terminal illness, to have cure as a goal of treatment in the last week, to have a shorter estimated time by which life was shortened and to involve the administration of opioids. Interpretation: Physician-assisted deaths with an explicit patient request (euthanasia and assisted suicide) and without an explicit request occurred in different patient groups and under different circumstances. Cases without an explicit request often involved patients whose diseases had unpredictable end-of-life trajectories. Although opioids were used in most of these cases, misconceptions seem to persist about their actual life-shortening effects.

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

BackgroundReliable 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 designReliable 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.DiscussionThe 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.

Trends in medical end-of-life decision making in Flanders, Belgium 1998-2001-2007.

In 2002, Belgium saw the enactment of 3 laws concerning euthanasia, palliative care, and patient rights that are likely to affect end-of-life decision making. This report examines trends in the occurrence and decision-making process of end-of-life practices in different patient groups since these legal changes. A large-scale retrospective survey in Flanders, Belgium, previously conducted in 1998 and 2001, was repeated in 2007. Questionnaires regarding end-of-life practices and the preceding decision-making process were mailed to physicians who certified a representative sample (N = 6927) of death certificates. The 2007 response rate was 58.4%. In patient groups in which the prevalence of life-ending drug use without explicit patient request has dropped, performance of euthanasia and assisted suicide has increased. The consistent increase in intensified pain and symptom alleviation was found in all patient groups except cancer patients. In 2007, competent patients were slightly more often involved in the discussion of end-of-life practices than in previous years. Over the years, involvement of the patient in decision making was consistently more likely among younger patients, cancer patients, and those dying at home. Physicians consulted their colleagues more often than in previous years for euthanasia and nontreatment decisions. The euthanasia law and emerging palliative care culture have substantially affected the occurrence and decision making for end-of-life practices in Belgium. Efforts are still needed to encourage shared end-of-life decision making, as some patients would benefit from advance care planning.

A Study of the First Year of the End-of-Life Clinic for Physician-Assisted Dying in the Netherlands

IMPORTANCE Right to Die NL, an organization in the Netherlands that advocates for the option of euthanasia, founded the End-of-Life Clinic in 2012 to provide euthanasia or physician-assisted suicide for patients who meet all legal requirements but whose regular physicians rejected their request. Many patients whose requests are rejected have less common situations, such as a psychiatric or psychological condition, dementia, or being tired of living. OBJECTIVE To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with granting or rejecting requests. DESIGN Analysis of application forms and registration files from March 1, 2012, to March 1, 2013, the clinics first year of operation, for 645 patients who applied to the clinic with a request for euthanasia or physician-assisted suicide and whose cases were concluded during the study period. MAIN OUTCOMES AND MEASURES A request could be granted, rejected, or withdrawn or the patient could have died before a final decision was reached. We analyzed bivariate and multivariate associations with medical conditions, type of suffering, and sociodemographic variables. RESULTS Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their requests. Patients with a somatic condition (113 of 344 [32.8%]) or with cognitive decline (21 of 56 [37.5%]) had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living. CONCLUSIONS AND RELEVANCE Physicians in the Netherlands have more reservations about less common reasons that patients request euthanasia and physician-assisted suicide, such as psychological conditions and being tired of living, than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.

Medical End-of-Life Decisions in Children in Flanders, Belgium: A Population-Based Postmortem Survey

OBJECTIVES To estimate the prevalence of end-of-life decisions and to describe their characteristics and the preceding decision-making process in minors in Belgium. DESIGN Population-based postmortem anonymous physician survey. SETTING Flanders, Belgium. PARTICIPANTS All physicians signing the death certificates of all patients (N = 250) aged 1 to 17 years who died between June 2007 and November 2008 in Flanders, Belgium. OUTCOME MEASURES Prevalence and characteristics of end-of-life decisions and the preceding decision-making process. RESULTS For 165 of the 250 deaths, a physician questionnaire was returned (70.5%). In 36.4%, death was preceded by an end-of-life decision. Drugs were administered to alleviate pain and symptoms with a possible life-shortening effect in 18.2% of all deaths, nontreatment decisions were made in 10.3%, and lethal drugs without the patients explicit request were used in 7.9%. No cases of euthanasia, ie, the use of drugs with the explicit intention to hasten death at the patients explicit request, were reported. Poor clinical prospects (84.6%) and low quality of life expectations (61.5%) were important reasons for the physicians to engage in end-of-life decisions. Parents were involved in decision making in 85.2% of these decisions, patients in 15.4%. CONCLUSIONS Medical end-of-life decisions are frequent in minors in Flanders, Belgium. Whereas parents were involved in most end-of-life decisions, the patients themselves were involved much less frequently, even when the ending of their lives was intended. At the time of decision making, patients were often comatose or the physicians deemed them incompetent or too young to be involved.

Trends in Continuous Deep Sedation until Death between 2007 and 2013: A Repeated Nationwide Survey

Background Continuous deep sedation until death is a highly debated medical practice, particularly regarding its potential to hasten death and its proper use in end-of-life care. A thorough analysis of important trends in this practice is needed to identify potentially problematic developments. This study aims to examine trends in the prevalence and practice characteristics of continuous deep sedation until death in Flanders, Belgium between 2007 and 2013, and to study variation on physicians’ degree of palliative training. Methods Population-based death certificate study in 2007 and 2013 in Flanders, Belgium. Reporting physicians received questionnaires about medical practices preceding the patient’s death. Patient characteristics, clinical characteristics (drugs used, duration, artificial nutrition/hydration, intention and consent), and palliative care training of attending physician were recorded. We posed the following question regarding continuous deep sedation: ‘Was the patient continuously and deeply sedated or kept in a coma until death by the use of one or more drugs’. Results After the initial rise of continuous deep sedation to 14.5% in 2007 (95%CI 13.1%-15.9%), its use decreased to 12.0% in 2013 (95%CI 10.9%-13.2%). Compared with 2007, in 2013 opioids were less often used as sole drug and the decision to use continuous deep sedation was more often preceded by patient request. Compared to non-experts, palliative care experts more often used benzodiazepines and less often opioids, withheld artificial nutrition/hydration more often and performed sedation more often after a request from or with the consent of the patient or family. Conclusion Worldwide, this study is the first to show a decrease in the prevalence of continuous deep sedation. Despite positive changes in performance and decision-making towards more compliance with due care requirements, there is still room for improvement in the use of recommended drugs and in the involvement of patients and relatives in the decision-making process.

What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

Background Many people who might benefit from specialist palliative care services are not using them. Aim We examined the use of these services and the reasons for not using them in a population in potential need of palliative care. Methods We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium. Results Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer). Conclusions Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority.

End‐of‐Life Decisions in Individuals Dying with Dementia in Belgium

To describe the prevalence and characteristics of end‐of‐life decisions in individuals dying with dementia in Belgium.

Labelling of end-of-life decisions by physicians

Objectives Potentially life-shortening medical end-of-life practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the presence of an explicit patient request and the self-estimated degree of life shortening) they label as euthanasia or sedation. Methods We conducted a large stratified random sample of death certificates from 2007 (N=6927). The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response rate was 58.4%. Results In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24 h in 51% and an explicit patient request was absent in 79.7%. Discussion Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians.