Michael Norup

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

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 20480. 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.

The Use of Placebo Interventions in Medical Practice—A National Questionnaire Survey of Danish Clinicians:

The authors sent a questionnaire to 772 randomly selected Danish clinicians and asked them about their use of placebo interventions. Sixty-five percent responded. Among the general practitioners, 86% (95% confidence interval 81-91) reported to have used placebo interventions at least once, and 48% (41-55) to have used placebo interventions more than ten times, within the last year. Hospital-based doctors and private specialists reported to have used placebo interventions less frequently (p <.001). The most important reason for the use of placebo interventions was to avoid a confrontation with the patient. Typical placebos were antibiotics for viral infections. Approximately 30% (28-36) of the clinicians believed in an effect of placebo interventions on objective outcomes, and 46% (42-50) found clinical placebo interventions generally ethically acceptable.

Experimental Pain in Human Temporal Muscle Induced by Hypertonic Saline, Potassium and Acidity

The study was aimed at developing a reference model for experimental pain and tenderness in the human temporal muscle by the local injection of hypertonic saline, potassium chloride and acidic phosphate buffer, using isotonic saline as control. The design was randomized and double-blind. Twenty healthy subjects had 0.2 ml test solution injected into one temporal muscle and saline into the other. Following each injection, pain was rated on a 10-point ordinal scale and pressure-pain thresholds were measured every minute for 10 min by a pressure algometer. Hypertonic saline (n = 11) and potassium chloride (n = 12) induced significantly more pain than isotonic saline (ANOVA, p < 0.0001). Compared to control injections, hypertonic saline and potassium chloride induced a significant reduction in pressure-pain threshold (ANOVA, p < 0.0001 and p < 0.05). Forty-eight percent of the injections led to the referral of pain most often to the jaws. A positive correlation between the relative occurrence of referred pain and pain intensity was observed (p < 0.001) as was a negative correlation between the decrease in pressure-pain threshold and pain intensity (p < 0.05).

Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia

BackgroundIn this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs.MethodsAn anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland.ResultsThe response rate differed between countries (39–68%). The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%.ConclusionThere are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude.

Influence of physicians’ life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries

Aim: To examine how physicians’ life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient’s death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.

End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference?

Objective: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. Design: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient’s death. Setting: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part). Main outcome measures: The incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions. Results: Response rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3–5.1%); non-treatment decisions generally occurred more often in hospitals (22.4–41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes. Conclusion: The results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.

Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses

BackgroundSystematic and reliable epidemiological information at population level, preferably cross-national, is needed for an adequate planning of (end-of-life) health care policies, e.g. concerning place of death, but is currently lacking. This study illustrates opportunities and weaknesses of death certificate data to provide such information on place of death and associated factors in nine European countries (seven entire countries and five regions).MethodsWe investigated the possibility and modality of all partners in this international comparative study (BE, DK, IT, NL, NO, SE, UK) to negotiate a dataset containing all deaths of one year with their national/regional administration of mortality statistics, and analysed the availability of information about place of death as well as a number of clinical, socio-demographic, residential and healthcare system factors.ResultsAll countries negotiated a dataset, but rules, procedures, and cost price to get the data varied strongly between countries. In total, about 1.1 million deaths were included. For four of the nine countries not all desired categories for place of death were available. Most desired clinical and socio-demographic information was available, be it sometimes via linkages with other population databases. Healthcare system factors could be made available by linking existing healthcare statistics to the residence of the deceased.ConclusionDeath certificate data provide information on place of death and on possibly associated factors and confounders in all studied countries. Hence, death certificate data provide a unique opportunity for cross-national studying and monitoring of place of death. However, modifications of certain aspects of death certificate registration and rules of data-protection are perhaps required to make international monitoring of place of death more feasible and accurate.

Do-not-resuscitate decisions in six European countries

Objective:To study and compare the incidence and main background characteristics of do-not-resuscitate (DNR) decision making in six European countries. Design:Retrospective. Setting:We studied DNR decisions simultaneously in Belgium (Flanders), Denmark, Italy (four regions), the Netherlands, Sweden, and Switzerland (German-speaking part). In each country, random samples of death certificates were drawn from death registries to which all deaths are reported. The deaths occurred between June 2001 and February 2002. Participants:Reporting physicians received a mailed questionnaire about the medical decision making that had preceded death. The response percentage was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. The total number of deaths studied was 20,480. Interventions:None. Measurements and Main Results:Measurements were fre-quency of DNR decisions, both individual and institutional, and patient involvement. Before death, an individual DNR decision was made in about 50–60% of all nonsudden deaths (Switzerland 73%, Italy 16%). The frequency of institutional decisions was highest in Sweden (22%) and Italy (17%) and lowest in Belgium (5%). DNR decisions are discussed with competent patients in 10–84% of cases. In the Netherlands patient involvement rose from 53% in 1990 to 84% in 2001. In case of incompetent patients, physicians bypassed relatives in 5–37% of cases. Conclusions:Except in Italy, DNR decisions are a common phenomenon in these six countries. Most of these decisions are individual, but institutional decisions occur frequently as well. In most countries, the involvement of patients in DNR decision making can be improved.

Attitudes towards abortion among physicians working at obstetrical and paediatric departments in Denmark.

The purpose of this study was to describe the attitudes among physicians working in perinatal medicine towards abortion for social reasons or because of abnormal prenatal diagnostic results. A questionnaire was sent to all physicians registered as employed at obstetrical or paediatric departments in Danish hospitals with a neonatal function. Of 994 questionnaires, 687 (69 per cent) were completed and returned. There was strong consensus among all participants that abortion is acceptable until week 21 in the case of trisomy 13 and at least until week 19 in the case of cystic fibrosis. Furthermore, there was strong consensus that abortion in the first trimester is acceptable in the case of an unwanted pregnancy in a 16‐year‐old girl and in the case of Down syndrome. Major controversy was found in connection with abortion in the case of Turner syndrome until week 21, abortion in week 13 in the case of polycystic kidney disease, abortion in week 24 in the case of Down syndrome, and abortion for social reasons in week 21.

Responders and non-responders in a study on medical end-of-life decisions in Denmark, the Netherlands, Sweden and Switzerland.

Summary.Objectives: To determine the direction and magnitude of participation bias in end-of-life research. Methods: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5 403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards “end-of-life decisions”. The reasons for non-participation to the study were analyzed. Results: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was “lack of time”. Conclusion: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responders.Zusammenfassung.Antwortende und Nicht-Antwortende in einer Studie zu medizinischen Entscheidungen am Lebensende in Dänemark, Holland, Schweden und der SchweizFragestellung: Richtung und Ausmaß von Teilnahmeverzerrungen in der Sterbehilfeforschung sollen bestimmt werden. Methoden: Im Rahmen eines europäischen Forschungsprojektes zu medizinischen Entscheidungen am Lebensende wurde bei ärztinnen und ärzten in Dänemark, Holland, Schweden und in der Schweiz eine Non-response Studie durchgeführt. Die Personen wurden nach ihren Einstellungen zu und Erfahrungen mit medizinischen Entscheidungen am Lebensende befragt. Der Rücklauf reichte von 12.8% in Holland bis zu 39.4% in der Schweiz. Antwortende (n = 5 403) und Nichtantwortende (n = 866) wurden hinsichtlich soziodemographischer Merkmale, Erfahrungen mit sterbenden Patientinnen und Patienten und der Zustimmung zu Einstellungen gegenüber Entscheidungen am Lebensende verglichen. Im Weiteren wurden die Gründe für die Nicht-Teilnahme an der Hauptbefragung untersucht. Ergebnisse: Nicht-Teilnahme führt zu keinen soziodemographischen Verzerrungen, jedoch betreuten die Nichtantwortenden in Holland, der Schweiz und allen vier Ländern zusammen signifikant weniger sterbende Patientinnen und Patienten als die Antwortenden. Die Zustimmung zu den Statements über aktive Sterbehilfe und über passive Sterbehilfe wie auch zum Statement zur Lebenserhaltung unter allen Umständen fiel unter den Antwortenden signifikant höher aus als unter den Nichtantwortenden. Hinsichtlich der Lebenserhaltung unter allen Umständen sowie der aktiven Sterbehilfe waren neutrale Antworten unter den Nichtantwortenden signifikant häufiger als bei den Antwortenden. Als häufigster Grund für die Nicht-Teilnahme wurde “Zeitmangel” genannt. Schlussfolgerung: Die Nicht-Teilnahme führt zu einer überrepräsentation der Befürwortenden sowohl von lebensverkürzenden als auch von lebenserhaltenden Entscheidungen. Nichtantwortende haben häufiger unklare Einstellungen gegenüber Entscheidungen am Lebensende als Antwortende.Résumé.Répondants et non-répondants dans une étude sur les décisions médicales en fin de vie au Danemark, aux Pays-Bas, en Suède et en SuisseObjectifs: Déterminer la nature et l’importance de biais de participation dans la recherche sur l’euthanasie. Méthode: Dans le cadre d’une recherche européenne sur les décisions médicales euthanasiques, une étude des non-réponses a été réalisée auprès de médecins au Danemark, aux Pays-bas, en Suède et en Suisse. Les questions abordaient les attitudes et l’expérience des médecins face à des décisions euthanasiques. Les taux de réponses varient de 12.8 (Pays-Bas) à 39.4% (Suisse). Les répondants (n = 5 403) et les non-répondants (n = 866) ont été comparés selon leurs caractéristiques socio-démographiques, leurs expériences avec des patients en phase terminale et leurs attitudes face à l’euthanasie. Les raisons d’une non-participation à l’étude ont été analysées. Résultats: Les non-réponses n’ont pas causé de déformation socio-démographique, cependant la catégorie des non-répondants compte de manière statistiquement significative moins de patients en phase terminale que la catégorie des répondants aux Pay-bas, en Suisse et dans l’ensemble des quatre pays. Le taux d’approbation d’affirmations sur le thème de l’euthanasie active et passive et du maintien de la vie était significativement plus élevé parmi les répondants que parmi les non-répondants. Les réponses neutres sur le thème du maintien de la vie et de l’euthanasie étaient plus souvent apportées par les non-répondants. Le «manque de temps» a été la cause de non-participation la plus souvent invoquée. Conclusion: La non-participation induit une surestimation des partisans de l’euthanasie, aussi bien que des partisans du maintien de la vie. Plus souvent que les répondants, les nonrépondants ont des points de vue ambigus envers les décisions d’euthanasie.