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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.

One-year survival of extremely preterm infants after active perinatal care in sweden

CONTEXT Up-to-date information on infant survival after extremely preterm birth is needed for assessing perinatal care services, clinical guidelines, and parental counseling. OBJECTIVE To determine the 1-year survival in all infants born before 27 gestational weeks in Sweden during 2004-2007. DESIGN, SETTING, AND PATIENTS Population-based prospective observational study of extremely preterm infants (707 live-born and 304 stillbirths) born to 887 mothers in 904 deliveries (102 multiple births) in all obstetric and neonatal units in Sweden from April 1, 2004, to March 31, 2007. MAIN OUTCOME MEASURES Infant survival to 365 days and survival without major neonatal morbidity (intraventricular hemorrhage grade >2, retinopathy of prematurity stage >2, periventricular leukomalacia, necrotizing enterocolitis, severe bronchopulmonary dysplasia). Associations between perinatal interventions and survival. RESULTS The incidence of extreme prematurity was 3.3 per 1000 infants. Overall perinatal mortality was 45% (from 93% at 22 weeks to 24% at 26 weeks), with 30% stillbirths, including 6.5% intrapartum deaths. Of live-born infants, 91% were admitted to neonatal intensive care and 70% survived to 1 year of age (95% confidence interval [CI], 67%-73%). The Kaplan-Meier survival estimates for 22, 23, 24, 25, and 26 weeks were 9.8% (95% CI, 4%-23%), 53% (95% CI, 44%-63%), 67% (95% CI, 59%-75%), 82% (95% CI, 76%-87%), and 85% (95% CI, 81%-90%), respectively. Lower risk of infant death was associated with tocolytic treatment (adjusted for gestational age odds ratio [OR], 0.43; 95% CI, 0.36-0.52), antenatal corticosteroids (OR, 0.44; 95% CI, 0.24-0.81), surfactant treatment within 2 hours after birth (OR, 0.47; 95% CI, 0.32-0.71), and birth at a level III hospital (OR, 0.49; 95% CI, 0.32-0.75). Among 1-year survivors, 45% had no major neonatal morbidity. CONCLUSION During 2004 to 2007, 1-year survival of infants born alive at 22 to 26 weeks of gestation in Sweden was 70% and ranged from 9.8% at 22 weeks to 85% at 26 weeks.

Incidence of and risk factors for neonatal morbidity after active perinatal care : extremely preterm infants study in Sweden (EXPRESS)

Aims:  The aim of this study was to determine the incidence of neonatal morbidity in extremely preterm infants and to identify associated risk factors.

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.

Patients with ischemic heart disease: Quality of life predicts long-term mortality

Objective We have investigated whether perceived quality of life has an impact on long-term survival after a cardiac event. Design Male (n=316) and female (n=97) patients were assessed by means of a self-administered quality of life questionnaire 1 year after either acute myocardial infarction (n=296), coronary artery bypass grafting surgery (n=99) or percutaneous coronary intervention (n=18). Inclusion period was 1989–1991. Ten years after the last patient answered the 1-year questionnaire, mortality (status factor) up to census date was analysed using nine dimensions of quality of life as covariates (Cox regression). Results At 1-year assessment, subjective general health (RR=3.15), perceived arrhythmia (RR=1.72), experience of sex life (RR=1.55), perceived breathlessness (RR=1.50) and experience of self-esteem (RR=1.48) were all significantly related to death within the period up to census date. Conclusion The findings highlight that the patients’ own experience of his or her quality of life, has a prognostic importance for long-term mortality after a cardiac event. Clinicians should be aware that a careful monitoring of perceived quality of life is an important part of good patient care.

Human Dignity in Paediatrics: The Effects of Health Care

Human dignity is grounded in basic human attributes such as life and self-respect. When people cannot stand up for themselves they may lose their dignity towards themselves and others. The aim of this study was to elucidate if dignity remains intact for family members during care procedures in a children’s hospital. A qualitative approach was adopted, using open non-participation observation. The findings indicate that dignity remains intact in family-centred care where all concerned parties encourage each other in a collaborative relationship. Dignity is shattered when practitioners care from their own perspective without seeing the individual in front of them. When there is a break in care, family members can restore their dignity because the interruption helps them to master their emotions. Family members’ dignity is shattered and remains damaged when they are emotionally overwhelmed; they surrender themselves to practitioners’ care, losing their self-esteem and self-respect.

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.

Neonatal end-of-life care in Sweden: the views of Muslim women.

Objective: To explore Muslim womens views of neonatal end-of-life-care in Sweden. Methods: Interviews using a standardized questionnaire with open-ended questions about care before birth, directly after birth, and during and after the death of the infant. Content analysis was performed on the data. Participants: Eleven immigrant women of Muslim background living in Sweden. Results: The categories identified were information both useful and threatening, priority of medical facts, maternal feelings, roles of significant others, predetermined lifetime, protection of the dying infant, staffs role, memories aggravate the grief, special tradition, life after death and belief in the future. Conclusions: The women provided suggestions for improvement of care including being given sufficient information of and the need for culturally sensitive care. In providing care for Muslim women it is imperative that care take into account the womans religion and ethnicity as well as individual preferences.

Screening for postpartum depression with the Edinburgh Postnatal Depression Scale (EPDS): An ethical analysis:

Aims: To assess the Edinburgh Postnatal Depression Scale (EPDS), a self-administered questionnaire created to screen for symptoms of postpartum depression in the community, from an epidemiological and ethical perspective. Screening, as the practice of investigating apparently healthy individuals to detect unrecognised disease or its precursors, has interpretation problems and is complicated by deliberations on probabilities for something to occur, on which the scientific community is unanimous. Methods: Our ethical analysis is made using a framework with two different dimensions, the ethical principles autonomy and beneficence and the affected persons. To balance the ethical costs and the ethical benefits of EPDS an analogy with the assessment of pharmaceutics is used. Results: In this article we argue that routine EPDS screening of Swedish postpartum women would lead to considerable ethical problems due to the weak scientific foundation of the screening instrument. Despite a multitude of published studies, the side-effects in terms of misclassifications have not been considered carefully. The EPDS does not function very well as a routine screening instrument. The dualism created is too reductive and fails to recognize the plurality of difference that exists in the social word. Conclusions: Public health authorities should not advocate screening of unproved value. Screening is not just a medical issue but also an ethical one.

Family Presence during CPR — The Experiences and Attitudes of Code Team Members

Family presence during CPR The experiences and attitudes of code team members Internationally, but hardly in Scandinavia, the presence of family members during cardiopulmonary resuscitation (CPR) has been discussed. With reference to such situations, the aim of this study was to survey the experiences and attitudes of Swedish code team members. A questionnaire was distributed to 107 nurses and 107 physicians in the departments of anaesthesiology, cardiology, and accident and emergency. The response rate was 82%. A small minority had heard family members ask permission to be present during CPR. More than half of the respondents were of the opinion that some family members want to be present, while one fourth believed that none of them wants it. If family members express a wish to be present, less than half of the respondents answered that the wish 〈Always〉 or 〈Often〉 should be respected. The nurses were a little more permissive than the physicians were. Many, but not all respondents thought that the family members would perceive presence as a disagreeable experience. With such differences in attitudes, general recommendations are difficult to justify. More empirical knowledge about the experiences and attitudes of family members, who have been present during CPR, as well as potential CPR patients, is also needed.