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

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

Effective communication in palliative care from the perspectives of patients and relatives:A systematic review

Objectives:In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. Methods:A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. Results:In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. Significance of results:Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.</p

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

Involvement of supportive care professionals in patient care in the last month of life

Background: In the last month of life, many patients suffer from multiple symptoms and problems. Professional supportive care involvement may help to alleviate patients’ suffering and provide them with an optimal last phase of life. Purpose: We investigated how often palliative care consultants, pain specialists, psychological experts and spiritual caregivers are involved in caring for patients in the last month of life, and which factors are associated with their involvement. Methods: Questionnaires were mailed to physicians who had attended the death of a patient from a stratified sample of 8496 deaths that had occurred in 2010 in the Netherlands. The response rate was 74 % (n = 6263). Results: A palliative care team or consultant had been involved in the last month of life in 12 % of all patients for whom death was expected; this percentage was 3 % for pain specialists, 6 % for psychologists or psychiatrists and 13 % for spiritual caregivers. Involvement of palliative care or pain specialists was most common in younger patients, in patients with cancer and in patients who died at home. Involvement of psychological or spiritual caregivers was most common in older patients, in females, in patients with dementia and in patients who died in a nursing home. Involvement of supportive caregivers was also associated with the use of morphine and end-of-life decisions. Conclusion: Supportive care professionals are involved in end-of-life care in about a quarter of all non-suddenly dying patients. Their involvement is related to the setting where patients die, to the patient’s characteristics and to complex ethical decision-making

Palliative care in Dutch hospitals: A rapid increase in the number of expert teams, a limited number of referrals

Background: Palliative care expert teams in hospitals have positive effects on the quality of life and satisfaction with care of patients with advanced disease. Involvement of these teams in medical care is also associated with substantial cost savings. In the Netherlands, professional standards state that each hospital should have a palliative care team by 2017. We studied the number of hospitals that have a palliative care team and the characteristics of these teams. Methods: In April 2015, questionnaires were mailed to key palliative care professionals in all general, teaching and academic hospitals in the Netherlands. Out of 92 hospitals, 74 responded (80 %). Results: Seventy-seven percent of all participating hospitals had a palliative care team. Other services, such as outpatient clinics (22 %), palliative care inpatient units (7 %), and palliative day care facilities (4 %) were relatively scarce. The mean number of disciplines that were represented in the teams was 6,5. The most common disciplines were nurses (72 %) and nurse practitioners (54 %), physicians specialized in internal medicine (90 %) or anaesthesiology (75 %), and spiritual caregivers (65 %). In most cases, the physicians did not have labeled hours available for their work as palliative care consultant, whereas nurses and nurse practitioners did. Most teams (77 %) were only available during office hours. Twenty-six percent of the teams could not only be consulted by healthcare professionals but also by patients or relatives. The annual number of consultations for inpatients per year ranged from 2 to 680 (median: 77). On average, teams were consulted for 0.6 % of all patients admitted to the hospitals. Conclusion: The number of Dutch hospitals with a palliative care team is rapidly increasing. There are substantial differences between teams regarding the disciplines represented in the teams, the procedures and the number of consultations. The development of quality standards and adequate staffing of the teams could improve the quality and effectiveness of the teams