In Death's Waiting Room: Living and Dying with Dementia in a Multicultural Society

In Death's Waiting Room is a penetrating story about people suffering from dementia in a multi-cultural society, relevant to us all. Anne-Mei The carried out two years of ethnographic research in a nursing home in the Netherlands revealing what usually remains hidden from the public: the decision to stop treatment, the cultural and social gap between the Dutch occupants and the black Caribbean nursing staff, the communication problems with relatives, the tensions and aggression. But she also shares with us the touching and funny moments and experiences with the elderly occupants. This book also unravels "the Blauwborgje case" - which was the focus of much media attention in the Netherlands in the late 1990s - in which a nursing home refused to re-hydrate a man with extreme dementia because they considered his condition to be terminal, whilst his family disagreed and pressed charges for attempted murder. Anne-Mei The gives an account of the events that took place and also explores the wider relevance of the case

In Death's Waiting Room

In Death's Waiting Room is a penetrating story about people suffering from dementia in a multi-cultural society, relevant to us all. Anne-Mei The carried out two years of ethnographic research in a nursing home in the Netherlands revealing what usually remains hidden from the public: the decision to stop treatment, the cultural and social gap between the Dutch occupants and the black Caribbean nursing staff, the communication problems with relatives, the tensions and aggression. But she also shares with us the touching and funny moments and experiences with the elderly occupants. This book also unravels "the Blauwborgje case" - which was the focus of much media attention in the Netherlands in the late 1990s - in which a nursing home refused to re-hydrate a man with extreme dementia because they considered his condition to be terminal, whilst his family disagreed and pressed charges for attempted murder. Anne-Mei The gives an account of the events that took place and also explores the wider relevance of the case.Nederland telt op dit moment 250.000 dementerenden en hun aantal neemt toe. Ooit treft wellicht onze ouders, onze geliefden of onszelf dit lot. Anne-Mei The werkte als onderzoeker twee jaar in een verpleeghuis. Zij onthult wat meestal verborgen blijft: de beslissing om te stoppen met behandelen. De armoede en voodoo-rituelen van de gekleurde verzorgenden. Problemen die kunnen optreden met de familie. Spanningen, agressie en seks op de afdeling. Maar ze maakt ons ook deelgenoot van ontroerende en hilarische taferelen. Daarnaast ontrafelt The 'de zaak 't Blauwbörgje' die in de jaren negentig in het nieuws kwam. De familie van een diep demente man beschuldigde het verpleeghuis van poging tot moord.Wat ging er mis? En kan zoiets weer gebeuren? Het boek leest als een roman en zet eenieder aan het denken over de invulling van zijn of haar eigen levenseinde in het geval van dementie

In Death's Waiting Room

In Death's Waiting Room is a penetrating story about people suffering from dementia in a multi-cultural society, relevant to us all. Anne-Mei The carried out two years of ethnographic research in a nursing home in the Netherlands revealing what usually remains hidden from the public: the decision to stop treatment, the cultural and social gap between the Dutch occupants and the black Caribbean nursing staff, the communication problems with relatives, the tensions and aggression. But she also shares with us the touching and funny moments and experiences with the elderly occupants. This book also unravels "the Blauwborgje case" - which was the focus of much media attention in the Netherlands in the late 1990s - in which a nursing home refused to re-hydrate a man with extreme dementia because they considered his condition to be terminal, whilst his family disagreed and pressed charges for attempted murder. Anne-Mei The gives an account of the events that took place and also explores the wider relevance of the case

Listen to their answers! Response behaviour in the measurement of physical and role functioning

Background: Quality of life (QoL) is considered to be an indispensable outcome measure of curative and palliative treatment. However, QoL research often yields findings that raise questions about what QoL measurement instruments actually assess and how the scores should be interpreted. Objective: To investigate how patients interpret and respond to questions on the EORTC-QLQ-C30 over time and to find explanations to account for counterintuitive findings in QoL measurement. Methods: Qualitative investigation was made of the response behaviour of small-cell lung cancer patients (n = 23) in the measurement of QoL with the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30). Focus was on physical functioning (PF, items 1 to 5), role functioning (RF, items 6 and 7), global health and QoL rating (GH/QOL, items 29 and 30). Interviews were held at four points: at the start of the chemotherapy, 4 weeks later, at the end, and 6 weeks after the end of chemotherapy. Patients were asked to 'think aloud' when filling in the questionnaire. Results: Patients used various response strategies when answering questions about problems and limitations in functioning, which impacted the accuracy of the scale. Patients had scores suggesting they were less limited than they actually were by taking the wording of questions literally, by guessing their functioning in activities that they did not perform, and by ignoring or excluding certain activities that they could not perform. Conclusion: Terminally ill patients evaluate their functioning in terms of what they perceive to be normal under the circumstances. Their answers can be interpreted in terms of change in the appraisal process (Rapkin and Schwartz 2004; Health and Quality of Life Outcomes, 2, 14). More care should be taken in assessing the quality of a set of questions about physical and role functioning. © 2008 The Author(s)

Small-cell lung cancer patients are just ‘a little bit’ tired: response shift and self-presentation in the measurement of fatigue

Background: Response shift has gained increasing attention in the measurement of health-related quality of life (QoL) as it may explain counter-intuitive findings as a result of adaptation to deteriorating health. Objective: To search for response shift type explanations to account for counter-intuitive findings in QoL measurement. Methods: Qualitative investigation of the response behaviour of small-cell lung cancer (SCLC) patients (n = 23) in the measurement of fatigue with The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) question 'were you tired'. Interviews were conducted at four points during 1st line chemotherapy: at the start of chemotherapy, 4 weeks later, at the end of chemotherapy, and 6 weeks later. Patients were asked to 'think aloud' when filling in the questionnaire. Results: Fifteen patients showed discrepancies between their answer to the EORTC question 'were you tired' and their level of fatigue spontaneously reported during the interview. These patients chose the response options 'not at all' or 'a little' and explained their answers in various ways. In patients with and without discrepancies, we found indications of recalibration response shift (e.g. using a different comparison standard over time) and of change in perspective (e.g. change towards a more optimistic perspective). Patients in the discrepancy group reported spontaneously how they dealt with diagnosis and treatment, i.e. by adopting protective and assertive behaviour and by fighting the stigma. They distanced themselves from the image of the stereotypical cancer patient and presented themselves as not suffering and accepting fatigue as consequence of treatment. Conclusion: In addition to response shift, this study suggests that 'self-presentation' might be an important mechanism affecting QoL measurement, particularly during phases when a new equilibrium needs to be found

Change in what matters to palliative patients: Eliciting information about adaptation with SEIQoL-DW

This study was carried out to investigate the usefulness of the SEIQoL-DW to elicit information about response shifts in palliative patients. The instrument measures individual quality of life and allows respondents to choose, rate and weight important areas of life (cues). We explored patients' reconceptualizations (ie, change in cues) and their value change (ie, change of cues weights). Results of 21 patients showed what mattered to these patients and how they had adjusted to deteriorating health. There is a risk that repeated measurements do not provide all the information that is potentially present and relevant to explore response shifts. But clear instructions to interviewers, such as careful listening, probing self-evident cues such as health and family, and accurate recording of cues on the forms may overcome this risk. Future research is recommended to explore the possibilities of regular assessments to facilitate better adjustment of patients

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia