The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.

The trend to greater use of chemotherapy at the end of life could be explained by patients' and physicians' mutually reinforcing attitudes of "not giving up" and by physicians' broad interpretation of patients' quality of life, in which taking away patients' hope by withholding treatment is considered harmful. To rebalance the ratio of quantity of life to quality of life, input from other health professionals, notably nurses, may be necessary.

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BackgroundAn important principle underlying the Dutch Euthanasia Act is physicians' responsibility to alleviate patients' suffering. The Dutch Act states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care. These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians to report euthanasia to a review committee. We studied which arguments Dutch physicians use to substantiate their adherence to the criteria and which aspects attract review committees' attention.MethodsWe examined 158 files of reported euthanasia and physician-assisted suicide cases that were approved by the review committees. We studied the physicians' reports and the verdicts of the review committees by using a checklist.ResultsPhysicians reported that the patient's request had been well-considered because the patient was clear-headed (65%) and/or had repeated the request several times (23%). Unbearable suffering was often substantiated with physical symptoms (62%), function loss (33%), dependency (28%) or deterioration (15%). In 35%, physicians reported that there had been alternatives to relieve patients' suffering which were refused by the majority. The nature of the relationship with the consultant was sometimes unclear: the consultant was reported to have been an unknown colleague (39%), a known colleague (21%), otherwise (25%), or not clearly specified in the report (24%). Review committees relatively often scrutinized the consultation (41%) and the patient's (unbearable) suffering (32%); they had few questions about possible alternatives (1%).ConclusionDutch physicians substantiate their adherence to the criteria in a variable way with an emphasis on physical symptoms. The information they provide is in most cases sufficient to enable adequate review. Review committees' control seems to focus on (unbearable) suffering and on procedural issues.

The appropriate use of artificial nutrition or hydration (ANH) for patients with advanced dementia continues to be a subject of debate. We investigated opinions of Dutch and Australian doctors about the use of ANH in patients with advanced dementia. We interviewed 15 Dutch doctors and 16 Australian doctors who care for patients with advanced dementia. We transcribed and analysed the interviews and held consensus meetings about the interpretation. We found that Dutch and Australian doctors use similar medical considerations when they decide about the use of ANH. In general, they are reluctant to start ANH. Disparities between the Dutch and Australian doctors are related to the process of decision-making: Dutch doctors seem to put more emphasis on a comprehensive assessment of the patient's actual situation, whereas Australian doctors are more inclined to use scientific evidence and advance directives. Furthermore, Dutch doctors take the primary responsibility themselves whereas Australian general practitioners seem to be more inclined to leave the decision to the family. It seems that Dutch and Australian doctors use somewhat different care approaches for patients with advanced dementia. Combining the Dutch comprehensive approach and the Australian analytic approach may serve the interest of patients and their families best.

Background: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment -cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. KeywordsCognitive impairment, dementia, aged, 80 and over, aged, frail elderly, patient transfer, residential characteristics, homes for the aged, nursing homes, delivery of health care, terminal care 221What is already known about the topic?• More people will be dying in very old age and dying with dementia or cognitive impairment.• Half the very old move in the last year of life and die away from their usual residence, but it is poorly understood how cognitive impairment affects these transitions. What this article adds?• Prospective population-based research with very old people, including cognitive assessments, reveals patterns in individual trajectories through care settings that routine data cannot explore.• Although 39% of ≥85-year-olds with severe cognitive impairment live in the community in their last year of life, only 8% die there, compared with 20% home deaths among cognitively unimpaired ≥85-year-olds.• The proportions of very old people dying in hospitals or in care homes decrease and increase, respectively, with worsening cognitive impairment. Implications for practice, theory or policy• Community end-of-life care provision needs to in...

Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shortening drugs to relieve symptoms than other patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.

Although guidelines restrict the use of continuous deep sedation to patients with refractory physical symptoms and a short life-expectancy, its use is not always restricted to these conditions. A focus group study of physicians was conducted to gain more insight in the arguments for and against the use of continuous deep sedation in several clinical situations. Arguments in favour of continuous deep sedation for patients with a longer life-expectancy were that the overall clinical situation is more relevant than life-expectancy alone, and that patients' wishes should be followed. Continuous deep sedation for patients with predominantly emotional/existential suffering was considered appropriate when physicians empathize with the suffering. Further, some physicians indicated that they may consider the use of sedation in the context of a euthanasia request. Arguments were that the option of continuous deep sedation is a better alternative; it may comfort some patients when their thoughts about potential future suffering become unbearable. Further, some considered continuous deep sedation as less burdening or a bother to perform. We conclude that physicians' decision-making about continuous deep sedation is characterized by balancing the interests of patients with their own feelings. Accordingly, the reasons for its use are not unambiguous and need further debate.