Elsevier

The Lancet

Volume 362, Issue 9381, 2 August 2003, Pages 345-350
The Lancet

Articles
End-of-life decision-making in six European countries: descriptive study

https://doi.org/10.1016/S0140-6736(03)14019-6Get rights and content

Summary

Background

Empirical data about end-of-life decision-making practices are scarce. We aimed to investigate frequency and characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland.

Methods

In all participating countries, deaths reported to death registries were stratified for cause (apart from in Switzerland), and samples were drawn from every stratum. Reporting doctors received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. The data-collection procedure precluded identification of any of the doctors or patients. All deaths arose between June, 2001, and February, 2002. We weighted data to correct for stratification and to make results representative for all deaths: results were presented as weighted percentages.

Findings

The questionnaire response rate was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. Total number of deaths studied was 20 480. Death happened suddenly and unexpectedly in about a third of cases in all countries. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland). Administration of drugs with the explicit intention of hastening death varied between countries: about 1% or less in Denmark, Italy, Sweden, and Switzerland, 1·82% in Belgium, and 3·40% in the Netherlands. Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers.

Interpretation

Medical end-of-life decisions frequently precede dying in all participating countries. Patients and relatives are generally involved in decision-making in countries in which the frequency of making these decisions is high.

Published online June 17, 2003 http://image.thelancet.com/extras/03art3298web.pdf

Introduction

In most Western countries, about 1% of the population dies every year. During the past century, a shift has arisen in cause of death: acute death due to infectious disease has, to a great extent, been replaced by diseases that generally entail a more protracted dying process, such as cancer and cardiovascular disease.1 Advances in medicine have greatly improved possibilities to treat seriously ill patients and to prolong life. However, there is increasing recognition that extension of life might not always be an appropriate goal of medicine and other goals have to guide medical decision-making at the end of life, such as improvement of quality of life of patients and their families by prevention and relief of suffering.2 In some cases, hastening of death can be an accepted or—by some people—appreciated result of end-of-life care.

Medical decision-making for patients with life-threatening diseases increasingly entails a balanced consideration of medical, ethical, psychosocial, and societal aspects. These considerations and the legal background in each country could modify end-of-life decision-making practices and attitudes of doctors, patients and other people involved. Medical end-of-life decisions, in principle, include: whether to withhold or withdraw potentially life-prolonging treatment—eg, mechanical ventilation, tube-feeding, and dialysis; whether to alleviate pain or other symptoms with, for example, opioids, benzodiazepines, or barbiturates in doses large enough to hasten death as a possible or certain side effect; and whether to consider euthanasia or doctor-assisted suicide, which can be defined as the administration, prescription, or supply of drugs to end life at the patient's explicit request. Medical end-of-life decisions can take place in any setting at which patients die—that is, in hospitals, nursing homes, hospices, and at home.

Results of comprehensive studies of medical practices in this area have thus far only been done in the Netherlands, Belgium, and Australia.3, 4, 5, 6 Non-treatment decisions and alleviation of pain or other symptoms with large doses of opioids, in these countries, were most typical, whereas the prevalence of euthanasia, doctor-assisted suicide, and ending of life without an explicit request from the patient was much lower. The practice of non-treatment decision-making has been studied extensively in the USA, showing that, in this country, many patients die after forgoing treatment.7, 8

Studies of attitudes of medical professionals towards end-of-life decision-making have been undertaken in many countries, such as Denmark, Germany, Italy, the Netherlands, Norway, Sweden, Switzerland, the UK, and the USA.9, 10, 11, 12, 13, 14, 15, 16, 17 However, to compare results of such surveys between countries is difficult because of differences in study designs and the ideas and definitions used. Internationally comparative studies are scarce, and have been focused on specific groups of patients, such as newborn babies or patients in intensive-care units.18, 19 Therefore, to what extent practices in the area of medical end-of-life decision-making vary in Europe is unknown.

We aimed to study end-of-life decision-making in six European countries: Belgium (Flanders), Denmark, Italy (four areas), the Netherlands, Sweden, and Switzerland (German-speaking part). Legal regulations about euthanasia and assisted suicide differ in these countries: both practices are prohibited in Sweden, Denmark, and Italy. In Switzerland, assisted suicide is allowed if it is done without any self-interest, for doctors and other citizens, whereas euthanasia is forbidden. In the Netherlands, euthanasia and assisted suicide were both prohibited at the time of our study, but doctors were not prosecuted if they acted in accordance with an officially enacted notification procedure that included several guidelines for prudent practice. Euthanasia was also prohibited in Belgium at the time of our study, but a new law that allowed euthanasia under certain conditions had already been discussed; the legal status of doctor-assisted suicide was (and is) uncertain.

Our study design was identical to that of previous Dutch and Belgian studies.3, 4, 5 We assessed the number of deaths in every country that were preceded by an end-of-life decision, what the end-of-life decisions were, and some key characteristics of patients and the decision-making.

Section snippets

Methods

In every participating country or region, we obtained random samples of death certificates of people aged 1 year or older from death registries to which all deaths are reported. The sampling period varied between 3 and 6 months, but all deaths that we included arose between June, 2001, and February, 2002. In Italy, only deaths of people aged 18 years or older were included because of practical limitations attributable to decentralised registration and because studying end-of-life

Results

The total number of deaths studied was 20 480. In all countries, about half of people who died were aged 80 years or older; this proportion was highest in Italy and Sweden, whereas the proportion of people who died who were younger than age 65 years was low in these countries (table 1). Cardiovascular and malignant diseases were the most frequent causes of death in all countries. Death in hospital was most frequent in Belgium (49%) and Italy (50%).

In all countries, about a third of deaths

Discussion

Our results show that medical end-of-life decisions frequently precede dying in all participating countries. In all studied countries, death comes suddenly and unexpectedly in about a third of all cases. For the remaining two-thirds of deaths, end-of-life decision-making seems to be an important issue.

During the preparatory phase of our study, much effort was put into creating situations that would enhance the credibility and validity of the study. Where possible, professional medical

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