Susanne Fischer

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.

Intra-individual psychological and physiological responses to acute laboratory stressors of different intensity

OBJECTIVES The phenomenon of stress is understood as a multidimensional concept which can be captured by psychological and physiological measures. There are various laboratory stress protocols which enable stress to be investigated under controlled conditions. However, little is known about whether these protocols differ with regard to the induced psycho-physiological stress response pattern. METHODS In a within-subjects design, 20 healthy young men underwent four of the most common stress protocols (Stroop test [Stroop], cold pressor test [CPT], Trier Social Stress Test [TSST], and bicycle ergometer test [Ergometer]) and a no-stress control condition (rest) in a randomized order. For the multidimensional assessment of the stress response, perceived stress, endocrine and autonomic biomarkers (salivary cortisol, salivary alpha-amylase, and heart rate) were obtained during the experiments. RESULTS All stress protocols evoked increases in perceived stress levels, with the highest levels in the TSST, followed by Ergometer, Stroop, and CPT. The highest HPA axis response was found in the TSST, followed by Ergometer, CPT, and Stroop, whilst the highest autonomic response was found in the Ergometer, followed by TSST, Stroop, and CPT. CONCLUSIONS These findings suggest that different stress protocols differentially stimulate various aspects of the stress response. Physically demanding stress protocols such as the Ergometer test appear to be particularly suitable for evoking autonomic stress responses, whereas uncontrollable and social-evaluative threatening stressors (such as the TSST) are most likely to elicit HPA axis stress responses. The results of this study may help researchers in deciding which stress protocol to use, depending on the individual research question.

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.

Using drugs to end life without an explicit request of the patient

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patients death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion.

Stress exacerbates pain in the everyday lives of women with fibromyalgia syndrome—The role of cortisol and alpha-amylase

OBJECTIVE Although fibromyalgia syndrome (FMS) is a chronic condition, its cardinal symptom pain is known to fluctuate over the day. Stress has often been claimed to exacerbate pain; however, there is barely any evidence on whether or not this is true on a day-to-day basis (and, alternatively, on whether pain leads to increased stress levels). Using an ecologically valid measurement design, we tested whether and how stress and pain are intertwined in participants with FMS. We additionally examined the role of the two major stress-responsive systems, the hypothalamic-pituitary-adrenal axis and the autonomic nervous system, as potential mediators of this relationship. METHODS An ambulatory assessment study was conducted over the course of 14 days. On each day, 32 females with FMS provided six diary entries on momentary stress and pain levels. Saliva samples were collected at the same time points to determine cortisol and alpha-amylase as indicators of stress-responsive systems. RESULTS Higher stress at a given measurement time point was associated with higher reported pain levels at the subsequent time point (UC=1.47, p<0.001), but not vice versa (UC<0.01, p=0.179). The stress-pain relationship was neither mediated by momentary cortisol nor by alpha-amylase; however, momentary cortisol was independently associated with momentary pain (UC=0.27, p=0.009). CONCLUSION Stress seems to be a powerful exacerbating factor for pain as experienced by patients with FMS in their everyday lives. Cortisol may be involved in the diurnal fluctuation of pain levels in patients with FMS. Future studies should identify relevant daily stressors in persons with FMS and scrutinize the mechanisms underlying the cortisol-pain relationship.

Der Sterbeort: „Wo sterben die Menschen heute in der Schweiz?“

ZusammenfassungHintergrundAmtliche Informationen zum Sterbeort werden seit 1987 im Bundesamt für Statistik (BfS) nicht mehr erhoben. Somit können aus dieser Quelle für die Schweiz keine Aussagen über die Entwicklung des Sterbeortes gemacht werden.MethodenMittels eines Fragebogens wurden Ärztinnen und Ärzte aus der Deutsch-Schweiz, welche zwischen dem 1. Juni und dem 30. Oktober 2001 ein Todesfallformular unterzeichneten, zum konkreten Todesfall schriftlich befragt. Die Häufigkeitsverteilungen zum Sterbeort (zu Hause, im Spital, Alters-, Pflege- und Krankenheim, anderer Ort) werden mit den amtlichen Daten zum Sterbeort für die Jahre 1969 bis 1986 verglichen. Anhand logistischer Regressionen werden die Einflussgrößen für die Sterbeorte identifiziert.ErgebnisseDer Tod ereignete sich im Jahre 2001 in der Deutsch-Schweiz am häufigsten im Spital (37,2% der Todesfälle). Am zweit häufigsten fand der Tod im Alters-, Kranken- oder Pflegeheim statt (33,5%) und an dritter Stelle stand das Sterben zu Hause (22,7%). Determinanten für den Sterbeort waren die Todesursache, das Geschlecht, der Zivilstand und teilweise die Religion. Während sich zwischen 1969 und 1986 eine Entwicklung zum institutionellen Sterben abzeichnete, verlagerte sich zwischen 1986 und 2001 das Sterben innerhalb der Institutionen von den Spitälern weg in die Alters- und Pflegeheime.SchlussfolgerungDie Bedeutung der Alters- und Pflegeheime als Sterbeort dürfte in Zukunft noch stärker wachsen, da in der kommenden Zeit der Anteil von alten Menschen ansteigen wird. Um Personen zu ermöglichen, die Pflege- und Betreuungsaufgaben von Angehörigen zu Hause erfüllen zu können, müssten die ambulanten Hilfsdienste erhöht werden und Anreize geschaffen und Unterstützungen geboten werden.SummaryBackgroundOfficial information on the place of death has not been collected by the Swiss Federal Office of Statistics since 1987. Thus, no statements can be made for the developments in Switzerland.MethodsPhysicians from the German speaking part of Switzerland who had filled in a death certificate between June 1 and October 30, 2001 were sent a questionnaire about circumstances of the specific death case. The frequencies of the place of death (at home, in hospital, in home for elderly, in nursing home, other place) were compared with the official data of the years 1969 until 1986. Using logistic regressions predictors for the place of death were estimated.ResultsIn 2001 in the German speaking part of Switzerland death occurred most frequently in hospital (37.2% of all death cases) followed by a home for elderly (33.5%) and dying at home (22.7%). Relevant predictors for the place of death were cause of death, sex, marital status and partly religion. Whereas between 1969 and 1986 a development towards dying in institutions was found, between 1986 and 2001 the place of death shifted within the institutions from hospitals to homes for elderly.ConclusionThe relevance of the home for elderly as the place of death will further grow in the future. To allow people to fulfill the tasks of caring for their relatives at home the ambulant emergency services will have to be augmented and relatives have to be motivated and supported.

Place of death: "Where do people die in Switzerland nowadays?"

ZusammenfassungHintergrundAmtliche Informationen zum Sterbeort werden seit 1987 im Bundesamt für Statistik (BfS) nicht mehr erhoben. Somit können aus dieser Quelle für die Schweiz keine Aussagen über die Entwicklung des Sterbeortes gemacht werden.MethodenMittels eines Fragebogens wurden Ärztinnen und Ärzte aus der Deutsch-Schweiz, welche zwischen dem 1. Juni und dem 30. Oktober 2001 ein Todesfallformular unterzeichneten, zum konkreten Todesfall schriftlich befragt. Die Häufigkeitsverteilungen zum Sterbeort (zu Hause, im Spital, Alters-, Pflege- und Krankenheim, anderer Ort) werden mit den amtlichen Daten zum Sterbeort für die Jahre 1969 bis 1986 verglichen. Anhand logistischer Regressionen werden die Einflussgrößen für die Sterbeorte identifiziert.ErgebnisseDer Tod ereignete sich im Jahre 2001 in der Deutsch-Schweiz am häufigsten im Spital (37,2% der Todesfälle). Am zweit häufigsten fand der Tod im Alters-, Kranken- oder Pflegeheim statt (33,5%) und an dritter Stelle stand das Sterben zu Hause (22,7%). Determinanten für den Sterbeort waren die Todesursache, das Geschlecht, der Zivilstand und teilweise die Religion. Während sich zwischen 1969 und 1986 eine Entwicklung zum institutionellen Sterben abzeichnete, verlagerte sich zwischen 1986 und 2001 das Sterben innerhalb der Institutionen von den Spitälern weg in die Alters- und Pflegeheime.SchlussfolgerungDie Bedeutung der Alters- und Pflegeheime als Sterbeort dürfte in Zukunft noch stärker wachsen, da in der kommenden Zeit der Anteil von alten Menschen ansteigen wird. Um Personen zu ermöglichen, die Pflege- und Betreuungsaufgaben von Angehörigen zu Hause erfüllen zu können, müssten die ambulanten Hilfsdienste erhöht werden und Anreize geschaffen und Unterstützungen geboten werden.SummaryBackgroundOfficial information on the place of death has not been collected by the Swiss Federal Office of Statistics since 1987. Thus, no statements can be made for the developments in Switzerland.MethodsPhysicians from the German speaking part of Switzerland who had filled in a death certificate between June 1 and October 30, 2001 were sent a questionnaire about circumstances of the specific death case. The frequencies of the place of death (at home, in hospital, in home for elderly, in nursing home, other place) were compared with the official data of the years 1969 until 1986. Using logistic regressions predictors for the place of death were estimated.ResultsIn 2001 in the German speaking part of Switzerland death occurred most frequently in hospital (37.2% of all death cases) followed by a home for elderly (33.5%) and dying at home (22.7%). Relevant predictors for the place of death were cause of death, sex, marital status and partly religion. Whereas between 1969 and 1986 a development towards dying in institutions was found, between 1986 and 2001 the place of death shifted within the institutions from hospitals to homes for elderly.ConclusionThe relevance of the home for elderly as the place of death will further grow in the future. To allow people to fulfill the tasks of caring for their relatives at home the ambulant emergency services will have to be augmented and relatives have to be motivated and supported.

Sociodemographic, lifestyle, and psychosocial determinants of hair cortisol in a South London community sample

OBJECTIVE Hypothalamic-pituitary-adrenal (HPA) measures are crucial for research into stress and stress-related disorders. Most HPA measures fluctuate depending on diurnal rhythms and state confounders. Hair cortisol concentrations (HCC) are less susceptible to such fluctuations, but less is known about trait-like confounders. Using a community sample, we tested the relationship between HCC and a range of variables including demographic variables, hair treatment, and medication, as well as psychosocial variables, namely childhood trauma, critical life events, and depressive symptoms. METHODS Hair samples were collected from 144 individuals from the South East London Community Health (SELCoH) study. Childhood trauma, life events, and depressive symptoms were measured, together with age, sex, ethnicity, relationship status, educational attainment, employment status, occupational social class, hair washing frequency, hair treatments, season reflected in the hair sample, hazardous drinking, smoking, medication intake, and body mass index. Hair samples reflecting the past 3 months were collected and analysed using immunoassays. First, correlations (continuous variables) and simple linear regressions (dichotomous variables) were conducted to identify sociodemographic, hair-related, and lifestyle determinants of HCC. Next, multiple linear regressions were conducted to test the relationship between psychosocial variables and HCC when controlling for the identified confounders. RESULTS Age (r=-0.17, p=0.050), White British ethnicity (β=-0.19, p=0.023), heat-based treatments (β=-0.22, p=0.010), and winter season (β=-0.18, p=0.024) were associated with lower HCC, whereas summer season (β=0.24, p=0.024), painkillers (β=0.25, p=0.003), anxiolytics/antidepressants (β=0.21, p=0.014), and hormonal contraceptives (β=0.27, p=0.006) were associated with higher HCC. Controlling for these confounders, physical neglect during childhood (β=-0.17, p=0.057), war-related experiences (β=0.20, p=0.027), separation (β=0.18, p=0.054), and being the victim of a serious crime (β=-0.17, p=0.062) were linked with altered HCC. CONCLUSION Our findings suggest that variation in HCC occurs according to sociodemographic, hair-related, and lifestyle variables, and that certain associations between stress and altered HCC can only be revealed when accounting for these confounders.

The effects of music listening on pain and stress in the daily life of patients with fibromyalgia syndrome

Music listening is associated with both pain- and stress-reducing effects. However, the effects of music listening in daily life remain understudied, and the psycho-biological mechanisms underlying the health-beneficial effect of music listening remain unknown. We examined the effects of music listening on pain and stress in daily life in a sample of women with fibromyalgia syndrome (FMS; i.e., a condition characterized by chronic pain) and investigated whether a potentially pain-reducing effect of music listening was mediated by biological stress-responsive systems. Thirty women (mean age: 50.7 ± 9.9 years) with FMS were examined using an ecological momentary assessment design. Participants rated their current pain intensity, perceived control over pain, perceived stress level, and music listening behavior five times per day for 14 consecutive days. At each assessment, participants provided a saliva sample for the later analysis of cortisol and alpha-amylase as biomarkers of stress-responsive systems. Hierarchical linear modeling revealed that music listening increased perceived control over pain, especially when the music was positive in valence and when it was listened to for the reason of ‘activation’ or ‘relaxation’. In contrast, no effects on perceived pain intensity were observed. The effects of music listening on perceived control over pain were not mediated by biomarkers of stress-responsive systems. Music listening in daily life improved perceived control over pain in female FMS patients. Clinicians using music therapy should become aware of the potential adjuvant role of music listening in daily life, which has the potential to improve symptom control in chronic pain patients. In order to study the role of underlying biological mechanisms, it might be necessary to use more intensive engagement with music (i.e., collective singing or music-making) rather than mere music listening.

Norepinephrine and epinephrine responses to physiological and pharmacological stimulation in chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is characterized by fatigue lasting 6 months or longer. CFS has been associated with a disturbed (re-)activity of the autonomic nervous system. However, the sympathetic adrenomedulla (SAM) remains under-examined in CFS. To investigate SAM reactivity, we implemented a submaximal cycle ergometry (ERGO) and a pharmacological test (Insulin Tolerance Test, ITT) in 21 CFS patients and 20 age-, sex-, and BMI-matched controls. Plasma norepinephrine and epinephrine were collected once before and twice after the tests (+10/+20, and +30 min). Lower baseline levels and attenuated responses of epinephrine to the ERGO were found in CFS patients compared to controls, while the groups did not differ in their responses to the ITT. To conclude, we found evidence of altered sympathetic-neural and SAM reactivity in CFS. Exercise stress revealed a subtle catecholaminergic hyporeactivity in CFS patients. It is conceivable that inadequate catecholaminergic responses to physical exertion might contribute to CFS symptoms.