Martien T. Muller

Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001

Empirical data on the rate of euthanasia, physician-assisted suicide, and other end-of-life decisions have greatly contributed to the debate about the role of such practices in modern health care. In the Netherlands, the continuing debate about whether and when physician-assisted dying is acceptable seems to be resulting in a gradual stabilisation of end-of-life practices. We replicated interview and death-certificate studies done in 1990 and 1995 to investigate whether end-of-life practices had altered between 1995 and 2001. Since 1995, the demand for physician-assisted death has not risen among patients and physicians, who seem to have become somewhat more reluctant in their attitude towards this practice.

Spirituality at the End of Life: Conceptualization of Measurable Aspects—a Systematic Review

Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care.

Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families

After-death reporting by proxies on end-of-life outcomes is used in research and can also be used to target institutions directly to improve practice. We compared the scores of family caregivers and nurses on two End-of-Life in Dementia Scales (EOLD) scales: Symptom Management (SM; range 0–45) over the last 3 months of life and Comfort Assessment in Dying (CAD; range 14–42). Higher scores represent better outcomes. Four Dutch nursing homes retrospectively enrolled 48 decedents with dementia. Total mean scores for family caregivers and nurses were 28.7 (SD 9.6) versus 25.2 (SD 12.7) for the SM and 31.7 (SD 5.5) versus 32.8 (SD 8.2) for the CAD. Mean item scores also did not differ much. Concordance Correlation Coefficients were 0.42 (SM) and 0.04 (CAD). Mean evaluations of end of life with dementia corresponded reasonably well between family and professional caregivers, but correspondence of individual observations was poor to moderate, suggesting serious differences in individual ratings but little systematic difference.

Relatives' Perspective on the Terminally Ill Patients Who Died after Euthanasia or Physician-Assisted Suicide: A Retrospective Cross-Sectional Interview Study in the Netherlands

This study used retrospective interviews with 87 relatives to describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a later date. Hopeless suffering, loss of dignity, and no prospect of recovery were the most prevalent reasons for explicitly requesting EAS. According to the relative, in 92% of patients EAS had contributed favourably to the quality of the end of life, mainly by preventing or ending suffering.

Voluntary active euthanasia and doctor-assisted suicide: knowledge and attitudes of Dutch medical students

The objective of the study was to gain insight into the knowledge of and attitudes towards voluntary active euthanasia and doctor‐assisted suicide (EEDAS) of Dutch medical students, and to determine whether knowledge and attitudes change after a 1–day informative conference about EDAS.

Voluntary active euthanasia and physician-assisted suicide in Dutch nursing homes: requests and administration.

Objective: To learn how many requests for voluntary active euthanasia and/or physician‐assisted suicide (EAS) are made to Dutch nursing home physicians (NHPs) and how often these requests are honored.

Active Voluntary Euthanasia or Physician-Assisted Suicide?

OBJECTIVE: To find out why Dutch general practitioners (GPs) and nursing home physicians (NHPs), and patients (according to their physician) opt for active voluntary euthanasia rather than for physician‐assisted suicide, or vice‐versa.

Euthanasia and Assisted Suicide: Facts, Figures and Fancies with Special Regard to Old Age

The objective of this paper is to describe the ethics and incidence of euthanasia and physician-assisted suicide (EAS) with special regard to old age. It is based on an assumption that if and when a practice of euthanasia and EAS is allowed, several vulnerable groups, including the elderly, may become a ‘population at risk’.We describe some of these claims, and make an inventory of the arguments against a permissive policy concerning euthanasia and EAS which emphasise inherent dangers for the elderly. We then give an overview of the results of empirical studies about incidence of (request for) euthanasia and assisted suicide in the Netherlands, Australia, the UK, the US, Denmark and Norway. These results confirm that practitioners do receive requests for EAS and that EAS is performed in all these countries. However, there are large differences between these countries with regard to the numbers of requests and performances. Dutch findings concerning the age distribution of patients who received euthanasia or assisted suicide indicate that these procedures are rare in the elderly and in nursing homes.We conclude that, although euthanasia and assisted suicide are illegal, there is evidence that these practices occur in all countries studied. Most surveys on the incidence of euthanasia show lower figures than those in the Netherlands. Dutch studies do not provide any evidence for the elderly being in danger of becoming ‘victims’ of euthanasia or assisted suicide.

Zorg aan het levenseinde bij bewoners met dementie in antroposofische en reguliere verpleeghuizen. Een pilot studie

End-of-life with dementia in Dutch antroposofic and traditional nursing homesEvery year more than 20.000 people with dementia die in Dutch nursing homes and this number steadily increases. Therefore, the importance of good end-of-life care for these patients including physical, psychosocial and spiritual care is evident. Although the training standards for Dutch nursing home physicians and nurses share a common standard, the philosophy of a nursing home may affect end-of-life care strategies for the residents. We compared end of life of nursing home residents with dementia in two anthroposophic and two traditional nursing homes in a retrospective study using the most specific instrument available: the End-of-Life in Dementia scales (EOLD). Family caregivers completed the EOLD questionnaire. There was no difference in mean Satisfaction With Care scale scores between both types of nursing homes: 32.9 (SD 4.3) and 31.6 (SD 4.9), respectively. The anthroposophic nursing homes had significant higher scores on the ‘Symptom Management’ ((32.9 (SD 7.5) versus 26.9 (SD 9.5)), and ‘Comfort Assessment in Dying’ scales (34.0 (SD 3.9) versus 30.8 (SD 5.8)) and on its subscale Well Being (7.7 (SD 1.2) versus 6.7 (SD 2.1)). Our results suggest that death with dementia was more favourable in anthroposophic nursing homes than in regular homes. The results inform further prospective studies on nursing homes how this and other philosophies are translated into daily nursing home practice, including decision making in multi-disciplinary teams, family consultation, and complementary non-pharmacological therapies.SamenvattingJaarlijks overlijden er in Nederland meer dan 20.000 mensen met dementie in het verpleeghuis en dit aantal stijgt nog steeds. Het is belangrijk dat verpleeghuizen goede levenseindezorg leveren voor deze patiënten, wat inhoudt lichamelijke, psychosociale en spirituele zorg. Alhoewel verpleeghuisartsen en ziekenverzorgenden worden opgeleid volgens dezelfde opleidingseisen, heeft de signatuur van een verpleeghuis mogelijk invloed op accenten in de geboden zorg aan het levenseinde. Wij vergeleken het levenseinde van bewoners met dementie in twee reguliere en twee antroposofische verpleeghuizen in een retrospectieve studie met de “End-of-Life in Dementia scales (EOLD)”. Dit is het meest specifieke instrument voor deze patiëntenpopulatie, en wordt als vragenlijst door familieleden ingevuld. Wij vonden geen verschil in gemiddelde ‘Satisfaction with care’ scores tussen beide groepen: 32,4 (SD 4,3) respectievelijk 31,6 (SD 4,9). De antroposofische verpleeghuizen scoorden significant gunstiger op ‘Symptom Management’ in de laatste drie levensmaanden: 32,9 (SD 7,5) respectievelijk 26,9 (SD 9,5) en ‘Comfort Assessment in Dying: 34,0 (SD 3,9) respectievelijk 30,8 (SD 5,8). Ook was de score significant gunstiger op de subschaal ‘Welbevinden’ tijdens het stervensproces: 7,7 (SD 1,2) respectievelijk 6,7 (SD 2,1). Onze resultaten wijzen erop dat sterven met dementie in de antroposofische verpleeghuizen gunstiger verloopt. Er is nader prospectief onderzoek nodig naar de vraag met welke onderdelen van het zorgproces dit samenhangt, zoals besluitvorming in multidisciplinair overleg, familiegesprekken en aanvullende niet-medicamenteuze behandelingen.

The role of the social network in active euthanasia and physician-assisted suicide

OBJECTIVE To obtain insight into the involvement of a patients social network in the process leading to the administration of euthanasia and assisted suicide (EAS). DESIGN Descriptive, retrospective. METHOD Data were collected by means of anonymous questionnaires sent to a random sample of 521 general practitioners (GPs) in the Province of North Holland and 521 GPs from the rest of the Netherlands and all 713 Dutch nursing home physicians (NHPs). The data were collected over the period 1986 to June 1990 inclusive. RESULTS GPs and NHPs had discussions most often with the partner of the patient about the patients request for EAS, the doctors intention to administer EAS and the actual administering of EAS. According to both the GPs and the NHPs the social network practically always agreed with the doctors decision to administer EAS. The persons who were most often present at the patients bedside when EAS was administered were the patients partner and children (29%). Often, especially in the cases of GPs, the decision not to report EAS was determined by the desire of relatives and/or the physician not to involve the relatives in a judicial inquiry. CONCLUSION To a large extent the social network was involved in the patients request for EAS, the doctors intention to administer EAS and the actual administering of EAS. This seems to be important both for good decision-making with regard to EAS and for helping relatives to come to terms with the loss of a dear one.