End-of-Life Decisions for Children: Empirical Studies on Physicians’ Practices and Attitudes

This thesis describes the practice of end-of-life decision-making in neonates and older children, the attitudes of paediatricians and other physicians towards physician-assisted dying and their opinion about the Euthanasia Act. The following research questions are formulated: 1. How often are end-of-life decisions made and what are the characteristics of end-of-life decision-making in neonates and infants? 2. How did the Dutch practice develop over time, and is it different from Belgium? 3. How often are end-of-life decisions made in older children and what are the characteristics of the decision-making process? 4. What are the attitudes of paediatricians and other physicians towards assisted death in children and what are their opinions about the Euthanasia Act? The first conclusion is that the practice of end-of-life decision-making in neonates seems stable. The frequency of end-of-life decisions has not risen significantly and decisions are in the large majority discussed with parents and physicians. Further, the practice is virtually similar to the Belgian practice. The frequency of end-of-life decisions for older children is lower than the frequency among deceased infants and is slightly lower than the frequency among adults. Decision-making takes place with parents, colleague-physicians and nurses in the majority of cases. About half of all physicians supported the Euthanasia Act and thinks it can contribute to the transparency and carefulness of the decision-making

Medical decision making in scarcity situations

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians (oncologists, cardiologists, and nursing home physicians) and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld

Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands

BACKGROUND: Terminal sedation in patients nearing death is an important issue related to end-of-life care. OBJECTIVE: To describe the practice of terminal sedation in the Netherlands. DESIGN: Face-to-face interviews. SETTING: The Netherlands. PARTICIPANTS: Nationwide stratified sample of 482 physicians; 410 responded and 211 of these reported characteristics of their most recent terminal sedation case. MEASUREMENTS: Physician reports of frequency of terminal sedation (defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration), characteristics of the decision-making process, drugs used, the estimated life-shortening effect, and frequency of euthanasia discussions. RESULTS: Of respondents, 52% (95% CI, 48% to 57%) had ever used terminal sedation. Of the 211 most recent cases, physicians used terminal sedation to alleviate severe pain in 51% of patients (CI, 44% to 58%), agitation in 38% (CI, 32% to 45%), and dyspnea in 38% (CI, 32% to 45%). Physicians reported discussing with patients th

Terminal sedation and euthanasia: A comparison of clinical practices

Background: An important issue in the debate about terminal sedation is the extent to which it differs from euthanasia. We studied clinical differences and similarities between both practices in the Netherlands. Methods: Personal interviews were held with a nationwide stratified sample of 410 physicians (response rate, 85%) about the most recent cases in which they used terminal sedation, defined as administering drugs to keep the patient continuously in deep sedation or coma until death without giving artificial nutrition or hydration (n=211), or performed euthanasia, defined as administering a lethal drug at the request of a patient with the explicit intention to hasten death (n=123). We compared characteristics of the patients, the decision-making process, and medical care of both practices. Results: Terminal sedation and euthanasia both mostly concerned patients with cancer. Patients receiving terminal sedation were more often anxious (37%) and confused (24%) than patients receiving euthanasia (15% and 2%, respectively). Euthanasia requests were typically related to loss of dignity and a sense of suffering without improving, whereas requesti