End of life care and decision making: Opinions and experiences of the general public, bereaved relatives, and professionals

End-of-life care aims to improve quality of life of patients and their relatives facing problems associated with life-threatening illness in the last days of life. End-of-life decision-making is an important aspect of end-of-life care that can have a significant impact on the process of dying and dying patients’ comfort in the last days of life. Moreover, end-of-life decisions are known to occur in 23-51% of all deaths in Europe and are subject to societal debate. Better understanding of current public opinion on end-of-life decisions can strengthen the societal debate in the Netherlands. End-of-life decision-making regarding artificial nutrition and hydration at the end of life is internationally shared to be important and better understanding can contribute to better end-of-life care. The aim of this thesis was to contribute to better understanding of end-of-life decision-making practices. One of the findings is that there is ample support for the Dutch Euthanasia Act, both among the general public and healthcare professionals, especially in the presence of physical symptoms. Both the general public and professionals consider euthanasia more problematic if a patient’s unbearable suffering is rooted in psychosocial problems or spiritual issues. Furthermore, at this moment providing artificial nutrition and hydration at the end of life is a frequent practice, although the effects on comfort seem limited. End-of-life decision-making regarding artificial nutrition and hydration can substantially improve by more evidence-based guidance, in which special attention is needed for communication about the impact of nutrition and hydration at the end of life

Patient characteristics and treatment considerations in pancreatic cancer: a population based study in the Netherlands

Background: Pancreatic cancer carries a poor prognosis. To date, there has been little research devoted to decision-making regarding treatment options in pancreatic cancer, including the rationale for choosing to withhold tumor targeting treatment (TTT). This study aims to gain insight into the characteristics of patients receiving no TTT, the reasons for this decision and their survival. Methods: All patients diagnosed in the Netherlands between 1 January 2014 and 30 June 2015 with a proven pancreatic adenocarcinoma or a pathologically unverified pancreatic tumor were identified in the Netherlands Cancer Registry. Information on initial management, patient characteristics, main reasons for no TTT (as reported in medical charts) and survival were analyzed. Results: A total of 3090 patients was included. Of these patients, 1818 (59%) received no TTT. Median age of no TTT patients was 74 years (range 35–99) versus 66 years (30–87) for TTT patients. In the no TTT group 77% had a clinical stage III/IV versus 57% of patients who received TTT. Main reasons for not starting TTT were patient’s choice (27%) and extensive disease (21%). Median survival of patients who did not receive TTT wa

Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public

Background: The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia. Methods: In this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opinions about a vignette on euthanasia based on an AED in a patient with advanced dementia. Results: Members of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients' autonomous wishes and the unbearableness of their suffering. Conclusion: Legally, an AED may replace direct communication with patients about their request for euthanasia. In practice, physicians are reluctant to forego adequate verbal communication with the patient because they wish to verify the voluntariness of patients' request and the unbearableness of suffering. For this reason, the applicability of AEDs in advanced dementia seems limited

Opinions of the Dutch public on palliative sedation: A mixed-methods approach

Background: Palliative sedation is defined as deliberately lowering a patient's consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in endof-life care that should not be confused with euthanasia. Aim: To inform healthcare professionals about attitudes of the general public regarding palliative sedation. Design and setting: A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. Method: One thousand nine hundred and sixty members of the general public completed the question