[Why regulation of active life termination in children remains problematic]. / Waarom een regeling levensbeëindiging bij kinderen problematisch blijft.

The case description regards a nine-years old patient who, as a consequence of a very serious epilepsy syndrome, several forms of comorbidity, severe developmental impairments, and the absence of meaningful contact with relatives, is felt to be in very serious suffering. Parents and physicians decide to end the child's life by withholding nutrition and hydration. Based on this case description and on the parents' experiences, its authors argue in favour of a stately regulated procedure for active life termination. In this comment I argue that the regulation of life termination without a patient request should remain a no-go area. If we allow life termination in children, there is no reason why we should not also allow such requests on behalf of incompetent patients such as handicapped adults and elderly patients with advanced dementia who have not issued an advance directive. Let the very rare cases in which a doctor sees no other option than to terminate an infant's life, remain in the realm of the non-regulated.

Challenges in pastoral care practice in euthanasia: A concept mapping study among Dutch protestant pastors.

This study explores the various difficulties that protestant pastors experience in the context of care for parishioners with a wish for euthanasia. In a reproducible and non-subjective way, using the concept mapping method, we cluster and rank-order 600 elements that pastors had mentioned as "difficult in caring for parishioners with a death wish" in an earlier survey study. The three clusters of items ranked as most difficult are connected with inappropriate care, doubts whether euthanasia in specific circumstances is justified, and disagreements between pastor and parishioner, including the emotional burden arising from those disagreements.

Euthanasia in the Netherlands: a claims data cross-sectional study of geographical variation.

BACKGROUND: The annual incidence of euthanasia in the Netherlands as a percentage of all deaths rose from 1.9% in 1990 to 4.4% in 2017. Scarce literature on regional patterns calls for more detailed insight into the geographical variation in euthanasia and its possible explanations. OBJECTIVES: This paper (1) shows the geographical variation in the incidence of euthanasia over time (2013-2017); (2) identifies the associations with demographic, socioeconomic, preferential and health-related factors; and (3) shows the remaining variation after adjustment and discusses its meaning. DESIGN, SETTING AND METHODS: This cross-sectional study used national claims data, covering all healthcare claims during 12 months preceding the death of Dutch insured inhabitants who died between 2013 and 2017. From these claims all euthanasia procedures by general practitioners were selected (85% of all euthanasia cases). Rates were calculated and compared at three levels: 90 regions, 388 municipalities and 196 districts in the three largest Dutch cities. Data on possibly associated variables were retrieved from national data sets. Negative binomial regression analysis was performed to identify factors associated with geographical variation in euthanasia. RESULTS: There is considerable variation in euthanasia ratio. Throughout the years (2013-2017) the ratio in the three municipalities with the highest incidence was 25 times higher than in the three municipalities with the lowest incidence. Associated factors are age, church attendance, political orientation, income, self-experienced health and availability of voluntary workers. After adjustment for these characteristics a considerable amount of geographical variation remains (factor score of 7), which calls for further exploration. CONCLUSION: The Netherlands, with 28 years of legal euthanasia, experiences large-scale unexplained geographical variation in the incidence of euthanasia. Other countries that have legalised physician-assisted dying or are in the process of doing so may encounter similar patterns. The unexplained part of the variation may include the possibility that part of the euthanasia practice may have to be understood in terms of underuse, overuse or misuse.

Advance care planning conversations with palliative patients: looking through the GP's eyes.

BACKGROUND: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. METHODS: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. RESULTS: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. CONCLUSIONS: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.

[The fringes of the euthanasia law]. / De rafelranden van de euthanasiewet.

A survey published in the Dutch Journal of Medicine (NTvG) shows that doctors asked to assess the suffering of patients making a request for euthanasia may give very different opinions. In this paper, I argue that this stems from the subjective character of the term 'unbearable' and that differences are bound to occur even more frequently in 'borderline' cases, such as those presented here. In my opinion, such differences do not justify a plea to abandon the assessment of unbearable suffering altogether. Rather, differences in assessment may serve as indications that the boundaries of the Dutch law on euthanasia and physician-assisted suicide are within sight. Moreover, it is argued that advance directives can only be seen as euthanasia requests in a legal sense if, at the time of issue of the directive, the patient was informed about his or her diagnosis and had discussed different treatment options with the physician. Such a directive may never serve as a generic request which is valid under hypothetical conditions.

After the slippery slope: Dutch experiences on regulating active euthanasia.

"When a country legalizes active euthanasia, it puts itself on a slippery slope from where it may well go further downward." If true, this is a forceful argument in the battle of those who try to prevent euthanasia from becoming legal. The force of any slippery slope argument, however, is by definition limited by its reference to future developments which cannot empirically be sustained. Experience in the Netherlands--where a law regulating active euthanasia was accepted in April 2001--may shed light on the strengths as well as the weaknesses of the slippery slope argument in the context of the euthanasia debate. This paper consists of three parts. First, it clarifies the Dutch legislation on euthanasia and explains the cultural context in which it originated. Second, it looks at the argument of the slippery slope. A logical and an empirical version are distinguished, and the latter, though philosophically less interesting, proves to be most relevant in the discussion on euthanasia. Thirdly, it addresses the question whether Dutch experiences in the process of legalizing euthanasia justify the fear of the slippery slope. The conclusion is that Dutch experiences justify some caution.