De dokter, het leven en de dood

De dood laat niet met zich sollen. Maar daar waar de dokter uit het sprookje van het begin zich moest behelpen met een kruidendrankje en de influisteringen van zijn bijzondere oom, stel ik vast dat onze dood inmiddels behoorlijk maakbaar en redelijk bespreekbaar is geworden. Dat is de basis voor voortgaande gedachtevorming, discussie, onderzoek en verbetering van de praktijk. Er zijn bijvoorbeeld duidelijke aanwijzingen dat er nog teveel bewuste en onbewuste onbekwaamheid en onhandigheid is bij zorgverleners, en dat er nog teveel onzekerheid en onvervulde behoeften zijn bij patiënten en hun familie. Bovendien is er nog onvoldoende kennis over de omvang, aard, oorzaken en gevolgen van passende en niet-passende zorg in de laatste levensfase. En het is een cliché, maar we gaan maar één keer dood, dus het kan niet over als het niet goed is gegaan. Onderzoek heeft al veel aanknopingspunten voor verbetering opgeleverd, zowel wat betreft adequate behandeling van symptomen als wat betreft methoden voor goede besluitvorming en communicatie. Onze eigen, veelal in samenwerking lopende projecten op het gebied van palliatieve sedatie, medicatiegebruik, zorg in het ziekenhuis en de bijdrage van consultatieteams, ook wat kostenbesparingen betreft, communicatie en besluitvorming, prognostiek, en zorg in de stervensfase zullen verder bijdragen aan onze kennis op dit gebied. We sluiten daarmee graag aan bij een van de strategische doelstellingen van het Erasmus MC, ‘zichtbaar betere zorg’, niet alleen door sterftecijfers zo laag mogelijk te houden en daardoor als ziekenhuis hoog op ranglijstjes terecht te komen, maar ook door passende zorg te bieden als het overlijden onvermijdelijk is geworden. Ook door de verdere ontwikkeling van onderwijs voor geneeskundestudenten en post-academisch onderwijs voor artsen en onderzoekers wil ik daar graag mijn bijdrage aan leveren

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in "vulnerable" groups

Journal ArticleIf physician-assisted suicide (PAS) and/or voluntary active euthanasia were legalised, would this disproportionately affect people in ‘‘vulnerable'' groups? Although principles of patient autonomy and the right to avoid suffering and pain may offer support for these practices, concerns about their impact on vulnerable populations speak against them. Warnings about potential abuse have been voiced by many task forces, courts and medical organisations in several countries where the issue is under debate. Box 1 presents some of these concerns

Pam Kaspers. End-of-life care and preferences for (non) treatment decisions in older people during the last 3 months of life

Review: Pam Kaspers beschrijft in haar proefschrift de resultaten van een onderzoek naar wensen rondom levenseindezorg en beslissingen omtrent het wel of niet ondergaan van medische behandelingen van ouderen. Bijzondere aandacht wordt besteed aan de rol van wilsverklaringen. Zij heeft voor haar onderzoek voornamelijk gebruik gemaakt van gegevens over overleden leden van het LASAouderencohort (Longitudinal Aging Study Amsterdam) en van een cohort van ouderen met een wilsverklaring. De resultaten van het onderzoek zijn beschreven in vijf hoofdstukken

Frequency of self-directed dying in the Netherlands:research protocol of a cross-sectional mixed-methods study

Introduction:In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician’s help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying. Methods and analysis:This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents’ experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software.Ethics and dissemination: The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. Results of the study will be disseminated through publications in scientific journals and conference presentations.</p

Medical decision making in scarcity situations

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians (oncologists, cardiologists, and nursing home physicians) and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld

Prevalence, Impact, and Treatment of Death Rattle

Context: Death rattle, or respiratory tract secretion in the dying patient, is a common and potentially distressing symptom in dying patients. Health care professionals often struggle with this symptom because of the uncertainty about management. Objectives: To give an overview of the current evidence on the prevalence of death rattle in dying patients, its impact on patients, relatives, and professional caregivers, and the effectiveness of interventions. Methods: We systematically searched the databases PubMed, EMBASE, CINAHL, PsychINFO, and Web of Science. English-language articles containing original data on the prevalence or impact of death rattle or on the effects of interventions were included. Results: We identified 39 articles, of which 29 reported on the prevalence of death rattle, eight on its impact, and 11 on the effectiveness of interventions. There is a wide variation in reported prevalence rates (12%-92%; weighted mean, 35%). Death rattle leads to distress in both relatives and professional caregivers, but its impact on patients is unclear. Different medication regimens have been studied, that is, scopolamine, glycopyrronium, hyoscine butylbromide, atropine, and/or octreotide. Only one study used a placebo group. There is no evidence that the use of any antimuscarinic drug is superior to no treatment. Conclusion: Death rattle is a rather common symptom in dying patients, but it is doubtful if patients suffer from this symptom. Current literature does not support the standard use of antimuscarinic drugs in the treatment of death rattle

Quality of collaboration and information handovers in palliative care: a survey study on the perspectives of nurses in the Southwest Region of the Netherlands

Background: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses. Methods: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test. Results: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics. Conclusion: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care

Intentionally hastening death by withholding or withdrawing treatment

Zusammenfassung: ZWECK: Diese Arbeit soll empirische Daten zur Absicht des Arztes beim Behandlungsverzicht und -abbruch liefern und deren mögliche Bedeutung für die ethische Debatte diskutieren. METHODIK: Die präsentierten Daten basieren auf EURELD, einem breit angelegten Forschungsprojekt zur Erfassung medizinischer Entscheidungen am Lebensende in sechs europäischen Ländern. Ausgehend von einer fortlaufenden Zufallsstichprobe von Todesfallformularen war der zuständige Arzt anonym schriftlich zu den am Lebensende des Verstorbenen getroffenen Entscheidungen befragt worden. ERGEBNISSE: In allen sechs Ländern zusammengenommen gaben die befragten Ärzte in 45% aller Fälle von Behandlungsverzicht oder -abbruch am Lebensende eine ausdrückliche Absicht zur Beschleunigung des Todeseintrittes an. Höher als der Durchschnitt war dieser Prozentsatz in der Schweiz und in Schweden (52% resp. 51%), tiefer in Dänemark und Belgien (36% resp. 38%), im Mittelfeld lagen Italien und Holland (42% resp. 45%). Insgesamt war der Entscheid zum Verzicht oder Abbruch einer Dialyse oder einer Beatmung besonders häufig mit einer ausdrücklichen Absicht zur Beschleunigung des Todeseintrittes verbunden (57% resp. 54%), der Verzicht oder Abbruch von Krebstherapien besonders selten (34%). SCHLUSSFOLGERUNGEN: Ärztliche Entscheidungen zum Behandlungsverzicht oder -abbruch am Lebensende erfolgen in fast der Hälfte der Fälle mit der ausdrücklichen Absicht einer Beschleunigung des Todeseintrittes. Es findet sich keine klare Assoziation zwischen der ausdrücklichen Absicht zur Beschleunigung des Todeseintrittes und objektiven Merkmalen des jeweiligen Behandlungsabbruches oder -verzichtes wie der Wahrscheinlichkeit resp. dem Ausmaß eines lebensverkürzenden Effekts, der Unmittelbarkeit des Todeseintritts oder der zu erwartenden Belastung durch die mögliche lebenserhaltende Maßnahme. Diese Resultate wecken Zweifel an der Brauchbarkeit des Kriteriums der ärztlichen Absicht bei der moralischen Beurteilung von Entscheidungen zum Behandlungsverzicht und -abbruc