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Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.
We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007–2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as “a patient being disturbed by or aware of symptoms,” “suffering until the end or death was a struggle”—all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.
In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.
Significance of Results:
Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.
Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician–patient communications at the end of life.
During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis.
Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from “hope for a cure” to “hope for a good death.” Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term “incurable illness,” but rather by informing the patient that they had no remaining curative treatments available.
Significance of results:
Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.
Providing good quality care for the growing number of patients with dementia is a major challenge. There is little international comparative research on how people with dementia die in nursing homes. We compared the relative's judgment on quality of care at the end of life and quality of dying of nursing home residents with dementia in Belgium and the Netherlands.
This was a Belgian cross-sectional retrospective study (2010) combined with a prospective and retrospective study from the Netherlands (January 2007–July 2011). Relatives of deceased residents of 69 Belgian and 34 Dutch nursing homes were asked to complete questionnaires. We included 190 and 337 deceased nursing home residents with dementia in Belgium and the Netherlands, respectively.
Of all identified deceased nursing home residents with dementia, respectively 53.2% and 74.8% of their relatives in Belgium and the Netherlands responded. Comfort while dying (CAD-EOLD, range 14–42) was rated better for Dutch nursing home residents than for Belgian nursing homes residents (26.1 vs. 31.1, OR 4.5, CI 1.8–11.2). We found no differences between countries regarding Satisfaction With Care (SWC-EOLD, range 10–40, means 32.5 (the Netherlands) and 32.0 (Belgium)) or symptom frequency in the last month of life (SM-EOLD, range 0–45, means 26.4 (the Netherlands) and 27.2 (Belgium)).
Although nursing home structures differ between Belgium and the Netherlands, the quality of care in the last month of life for residents with dementia is similar according to their relatives. However, Dutch residents experience less discomfort while dying. The results suggest room for improved symptom management in both countries and particularly in the dying phase in Belgium.
Objective: This study investigated the palliative options
available when a patient requested euthanasia or physician-assisted
suicide (EAS), the extent to which the options were applied, and changes
in the patient's wishes.
Methods: In an observational study, 3614 general
practitioners (GPs) filled in a questionnaire and described their most
recent request for EAS (if any) (n = 1,681).
Results: Palliative options were still available in 25% of
cases. In these cases options were applied in 63%; in 46% of these cases
patients withdrew their request. Medication other than antibiotics, which
was most frequently mentioned as a palliative option (67%), and applied
most frequently (79%), together with radiotherapy, most frequently
resulted in patients withdrawing their request.
Significance of results: GPs include the availability of
palliative options in their decision making when considering EAS. The fact
that not all options are applied or, if applied, the patient persists in
the request is related to autonomy of the patient, the burden on the
patient, and medical futility of the option.
Background: To investigate the characteristics of patients in whom artificial nutrition and hydration (ANH) is forgone, duration of survival after the decision and factors that are associated with duration of survival.
Methods: Observational study based on written questionnaires in 32 Dutch nursing homes. Of 178 nursing home patients with dementia, their treating nursing home physician (NHP) filled in a questionnaire directly after the decision was made to forgo ANH. The maximum follow-up was 6 weeks. Cox proportional hazards analysis was used to determine predictors of survival.
Results: Decisions to forgo ANH in Dutch nursing homes were made most often in patients with severe dementia who also had an acute illness. More than half the patients (59%) died within 1 week after the decision. Patients with dyspnea and/or apathy were more likely to die during follow-up than patients without these symptoms. Patients who were considered more severely ill by the NHP were more likely to die than those who were considered less severely ill. The presence of restlessness indicated a higher chance of survival.
Conclusions: The clinical judgment of the NHP of the severity of illness appeared to be a strong predictor of patient survival. NHPs should not rely solely on their clinical judgment concerning survival, but they should also consider the presence or absence of dyspnea, apathy and restlessness.
Background. Mental health status may be closely related to an instability of intentions toward a premature death, but little is known about such instability following an explicit request for euthanasia or physician-assisted suicide (EAS) and patient characteristics associated with a change of mind.
Method. A questionnaire was sent to 6596 general practitioners in The Netherlands (response rate 60%). Of these, 1681 provided descriptions of the most recent explicit request for EAS they had received in the preceding 18 months.
Results. Symptoms of depression and anxiety were related to a change of mind, but no relationship was found with the total score of the NOSGER Mood Dimension. Multinomial regression analysis revealed that patients who changed their mind had more mental health problems and less mental clarity than those who died by EAS. They also had fewer general health problems, had less unbearable and pointless suffering (according to the physician), were less concerned about loss of dignity and alternative treatment options were more frequently available. A further analysis revealed that mental health problems were more prevalent among patients whose requests were refused than among those who changed their mind. The physicians' evaluations of the reasons why a patient requested EAS were similar to a more objective measure of the patient characteristics.
Conclusions. These findings suggest that mental health status must be carefully assessed, and possible instability of desire must be taken into account in the course of a request for EAS. These results require replication, and future studies should adopt a prospective method.
Objective. To determine how often requests are made for euthanasia and physician-assisted suicide (EAS) in the absence of severe disease and how such requests are dealt with in medical practice in The Netherlands.
Method. Retrospective interview study. Participants: 125 general practitioners (GPs), 77 nursing home physicians (NHPs), and 208 clinical specialists.
Results. In The Netherlands, each year approximately 400 people request EAS, because they are ‘weary of life’. Thirty per cent of all physicians have at some time received an explicit request for EAS in the absence of severe disease; 3% of all physicians had granted a request for EAS in such a case. Most requests for EAS to GPs in the absence of severe disease (n=29) were made by single people aged 80 years and over. While their problems were most frequently of a social nature, 79% had one or more non-severe illnesses. Most GPs refused the request; half of them proposed an alternative treatment, which the patient often refused. Nineteen people who did not receive any treatment persisted in their wish to die; the request for EAS from 5 out of 10 patients who received one or more types of treatment was withdrawn or became less explicit.
Conclusions. Most physicians in The Netherlands refuse requests for EAS in the absence of severe disease. Most patients persist in their request. In an ageing population more research is needed to provide physicians with practical interventions to prevent suicide and to make life bearable and satisfactory for elderly people who wish to die.
In the Netherlands, in 1995 approximately 9700 people
explicitly requested euthanasia or assisted suicide (EAS),
and EAS was performed approximately 3600 times (2.7% of
all deaths). The most important reasons for not performing
EAS when requested by a patient were that the patient died
before EAS was performed, or that the physician refused the
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