Marike E. de Boer

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. Conclusion: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives

OBJECTIVES: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes.

Life-and-death decision-making in the acute phase after a severe stroke: Interviews with relatives

Background: Decision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient’s values and preferences. However, little is known about how the patients’ relatives experience the decision-making process. Aim: To elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions. Design: An exploratory qualitative interview approach guided by the principles of grounded theory. Settings/participants: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. Results: Four categories reflecting relatives’ experiences were identified: (1) making decisions under time pressure, (2) the feeling of ‘who am I’ to decide, (3) reluctance in saying ‘let her die’ and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process. Conclusion: A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.

Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members

Abstract Background Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives. Method Ten vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID. Results In taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members. Conclusions These results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care.

Het gevreesde lijden bij dementie

Het debat over het ‘lijden’ bij dementie wordt hoofdzakelijk gevoerd door gezonde ouderen die vrezen in de toekomst dementie te krijgen. Maar hoe kijken mensen met dementie zelf aan tegen hun leven? Is dat echt zo uitzichtloos en ondraaglijk als het vaak wordt voorgesteld?

Fysiotherapie in verpleeghuizen

SamenvattingIn deze studie is geïnventariseerd hoeveel verpleeghuisbewoners fysiotherapie ontvangen, en welke factoren een rol spelen bij het inzetten van een behandeling. Van een aselecte steekproef van 600 verpleeghuisbewoners uit 15 verpleeghuizen,opgenomen voor revalidatie of langdurige zorg,werden gegevens verzameld door middel van interviews met verpleeghuisartsen en fysiotherapeuten. Gemiddeld kreeg 69% van de bewoners fysiotherapie, maar dit percentage verschilde tussen verpleeghuizen. Dit verschil werd vooral verklaard door het beschikbare aantal fysiotherapeuten. Bewoners opgenomen voor revalidatie en bewoners van een somatische afdeling hebben de meeste kans op fysiotherapie. Dit suggereert een potentieel ondergebruik van fysiotherapie voor bewoners met cognitieve problemen die langdurige zorg nodig hebben.SummaryIn this study,we investigated how many nursing home residents receive physiotherapy and which factors relate to the provision of treatment.Data were collected from a random sample of 600 residents admitted for rehabilitation or long-term care, through interviews with nursing home physicians and physiotherapists. On average 69% of the residents received PT, however, this percentage differed significantly across nursing homes. Especially the number of physiotherapists available explained this difference. Residents admitted to a somatic ward for rehabilitation were most likely to receive physiotherapy. This suggests a potential under-use of PT for long-term residents with cognitive problems.

Alleen maar passieve slachtoffers

SamenvattingIs dementie een niet te verwerken psychotrauma zoals sommige psychologen beweren? Moet je er zo bang voor zijn dat je maar beter vast een wilsverklaring kunt opstellen waarin je om euthanasie vraagt – voor het geval dát? Niet als je hun er zelf naar vraagt, zo blijkt uit onderzoek naar wat mensen met dementie zelf van hun situatie vinden. ‘De verhalen van mensen met dementie lijken het overwegend negatieve beeld van dementie niet te bevestigen.’

Euthanasie bij dementie: een reële optie?

SummaryNursing home physicians are bound to be confronted more often with patients that have an advance directive concerning a request for euthanasia in the case of dementia. Despite the fact that in the Netherlands euthanasia in dementia, under certain conditions, is justified when a written request is present, these requests are rarely carried out.This article provides insight into the medical ethical problems that physicians may encounter when treating a patient with dementia in the posession of a written request for euthanasia. Dilemmas with respect to the patients (in)competence, personal identity and unbearable suffering, are adressed successively. It appears that insight into the way that physicians in daily practice deal with these dilemmas is limited. More research into the issues around advance directives in dementia is recommended.SamenvattingVerpleeghuisartsen zullen in toenemende mate worden geconfronteerd met patiënten die in het bezit zijn van een schriftelijke, tot euthanasie strekkende wilsverklaring in het geval van dementie. Ondanks het feit dat euthanasie bij dementie op basis van een euthanasieverklaring, onder voorwaarden formeel is toegestaan,komt het maar zelden tot uitvoering van een dergelijk verzoek. Dit artikel geeft inzicht in de medisch ethische problemen waarmee artsen te maken kunnen krijgen wanneer zij een demente patiënt onder behandeling krijgen die in het bezit is van een euthanasieverklaring. Achtereenvolgens komen de dilemmas rondom wils(on)bekwaamheid, persoonlijke identiteit en ondraaglijk lijden aan de orde. Inzicht in de wijze waarop artsen hier in de praktijk mee omgaan blijkt summier. Er wordt gepleit voor meer onderzoek naar de problematiek van schriftelijke wilsverklaringen bij dementie.

De stilte doorbreken

SamenvattingWelke impact heeft dementie op mensen die aan deze ziekte lijden en op hun mantelzorgers? En wat betekent het dat mensen met dementie door hun aandoening minder in staat zijn om zichzelf te uiten en hun rechten te verdedigen? Deze thema’s speelden een belangrijke rol op de zeventiende conferentie van Alzheimer Europe, eerder dit jaar in het Portugese Estoril.