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Bregje D Onwuteaka-Philipsen

Publications and source records attributed to Bregje D Onwuteaka-Philipsen.

At least 19 recordsLinked to original sources

Regulating physician-assisted dying for minors in the Netherlands: views of paediatricians and other physicians.

AIM: In 2002, the Dutch Euthanasia Act came into effect, which made euthanasia available to individuals from the age of 12 and above. The objective of our study was to gain insight into how Dutch paediatricians and other physicians treating children feel about the regulation of physician-assisted dying. METHODS: We interviewed 63 paediatricians, 125 general practitioners and 208 clinical specialists about their views on physician-assisted dying and the Euthanasia Act. RESULTS: Of the paediatricians, 44% agreed with the age limit of 12 years, and 52% agreed with the requirement that parents be involved. Somewhat more than half thought the Act could contribute to the disclosure of end-of-life practices (52%), the quality of the review procedure (61%), careful decision making (54%) and the reporting rate (65%). These percentages were comparable for other physicians. A minority of the physicians in all groups indicated that, with this Act in place, they would be more willing to report such practices. The most optimistic in this respect were the paediatricians, of whom 39% expected such an effect. CONCLUSIONS: About half of Dutch paediatricians support the Euthanasia Act and expect it to achieve its aims, which is the same percentage as was found for other clinical specialists and general practitioners. However, most physicians do not foresee an increase in willingness to report cases of physician-assisted dying.

Adolescent↗

End-of-life decision making in Europe and Australia: a physician survey.

BACKGROUND: The frequencies with which physicians make different medical end-of-life decisions (ELDs) may differ between countries, but comparison between countries has been difficult owing to the use of dissimilar research methods. METHODS: A written questionnaire was sent to a random sample of physicians from 9 specialties in 6 European countries and Australia to investigate possible differences in the frequencies of physicians' willingness to perform ELDs and to identify predicting factors. Response rates ranged from 39% to 68% (N = 10 139). Using hypothetical cases, physicians were asked whether they would (probably) make each of 4 ELDs. RESULTS: In all the countries, 75% to 99% of physicians would withhold chemotherapy or intensify symptom treatment at the request of a patient with terminal cancer. In most cases, more than half of all physicians would also be willing to deeply sedate such a patient until death. However, there was generally less willingness to administer drugs with the explicit intention of hastening death at the request of the patient. The most important predictor of ELDs was a request from a patient with decisional capacity (odds ratio, 2.1-140.0). Shorter patient life expectancy and uncontrollable pain were weaker predictors but were more stable across countries and across the various ELDs (odds ratios, 1.1-2.4 and 0.9-2.4, respectively). CONCLUSION: Cultural and legal factors seem to influence the frequencies of different ELDs and the strength of their determinants across countries, but they do not change the essence of decision making.

Australia↗

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 requesting terminal sedation was more often related to severe pain. Physicians applying terminal sedation estimated that the patient's life had been shortened by more than 1 week in 27% of cases, compared with 73% in euthanasia cases. CONCLUSIONS: Terminal sedation and euthanasia both are often applied to address severe suffering in terminally ill patients. However, terminal sedation is typically used to address severe physical and psychological suffering in dying patients, whereas perceived loss of dignity during the last phase of life is a major problem for patients requesting euthanasia.

Aged↗

Predictors of survival in nursing home patients with severe dementia in whom artificial nutrition and hydration are [corrected] forgone.

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.

Acute Disease↗

Responders and non-responders in a study on medical end-of-life decisions in Denmark, the Netherlands, Sweden and Switzerland.

OBJECTIVES: To determine the direction and magnitude of participation bias in end-of-life research. METHODS: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards "end-of-life decisions". The reasons for non-participation to the study were analyzed. RESULTS: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was "lack of time". CONCLUSION: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responders.

Adult↗

Requests to forgo potentially life-prolonging treatment and to hasten death in terminally ill cancer patients: a prospective study.

This study investigates the background and evolution of requests to forgo treatment and hasten death in terminally ill cancer patients. Physicians participating in a nationwide study on end-of-life decision making were asked whether they were treating a terminally ill cancer patient whose life expectancy was longer than 1 week but no longer than 3 months and who they would continue to treat until the patient's death. Of the 120 physicians who had a patient who met the inclusion criteria, 85 (70.8%) completed a questionnaire each month until the patient's death. The questionnaire provided information on the patient's symptoms, concerns, and requests involving end-of-life decisions. Most patients suffered from cancer of the gastrointestinal tract or the respiratory system, and 66% died within 2 months of the initial interview. The prevalence of requests involving end-of-life decisions increased during the last 3 months of a patient's life. The evolution of a request was especially related to an increase in the number of severe symptoms and concerns. Requests to forgo treatment were related to general weakness, whereas loss of dignity was a major reason for requests to hasten death. Physical suffering alone appeared to lead to less drastic requests than suffering blended by concerns and psychological problems leading to requests for hastened death. The results emphasize the importance of gaining insight into the patients' suffering to provide meaningful assistance.

Adult↗

Requests for euthanasia and physician-assisted suicide and the availability and application of palliative options.

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.

Decision Making↗

Physicians' opinions on palliative care and euthanasia in the Netherlands.

BACKGROUND: In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. OBJECTIVE: The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. DESIGN: Cross-sectional. SETTING/SUBJECTS: Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). MEASUREMENTS: Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. RESULTS: Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. CONCLUSION: The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.

Adult↗

Preferences of the Dutch general public for a good death and associations with attitudes towards end-of-life decision-making.

BACKGROUND: Euthanasia and other end-of-life decisions are acceptable to the large majority of the Dutch public. Insight in the relationships of such acceptance, with characteristics considered important for a 'good death', may contribute to the understanding of this liberal attitude. METHOD: Questionnaires were mailed to 1777 members of the Dutch public (response: 78%), containing questions relating to a good death, attitudes towards euthanasia, terminal sedation and increasing morphine, and demographics. Associations between characteristics of a good death and attitudes towards these end-of-life decisions were analysed. FINDINGS: Characteristics that were considered important for a good death were: the possibility to say goodbye to loved ones (94%), dying with dignity (92%), being able to decide about end-of-life care (88%), and dying free of pain (87%). Acceptance of euthanasia, terminal sedation and increasing morphine were related to the wish to have a dignified death, and with concerns about burdening relatives with terminal care. Acceptance of euthanasia was also associated with the wish to be able to decide about medical end-of-life treatments and about the moment of death. INTERPRETATION: Besides saying farewell and dying pain free and with dignity, many members of the Dutch public consider values of control and maintenance of independence as important for a good death.

Adult↗

Frequency and determinants of advance directives concerning end-of-life care in The Netherlands.

In the USA, the use of advance directives (ADs) has been studied extensively, in order to identify opportunities to increase their use. We investigated the prevalence of ADs and the factors associated with formulation of an AD in The Netherlands, using samples of three groups: the general population up to 60 years of age, the general population over 60 years of age, and the relatives of patients who died after euthanasia or assisted suicide. The associated factors were grouped into three components: predisposing factors (e.g. age, gender), enabling factors (e.g. education) and need factors (e.g. health-related factors). We found that living wills had been formulated by 3% of younger people, 10% of older people, and 23% of the relatives of a person who died after euthanasia or assisted suicide. Most living wills concerned a request for euthanasia. In all groups, 26-29% had authorized someone to make decisions if they were no longer able to do so themselves. Talking to a physician about medical end-of-life treatment occurred less frequently, only 2% of the younger people and 7% of the older people had done so. Most people were quite confident that the physician would respect their end-of-life wishes, but older people more so than younger people. In a multivariate analysis, many predisposing factors were associated with the formulation of an AD: women, older people, non-religious people, especially those who lived in an urbanized area, and people with less confidence that the physician would respect their end-of-life wishes were more likely to have formulated an AD. Furthermore, the enabling factor of a higher level of education, the need factor of contact with a medical specialist in the past 6 months, and the death of a marital partner were associated with the formulation of an AD.

Adult↗

Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia.

OBJECTIVE: For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties. METHODS: Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia. RESULTS: In general, physicians, nurses and relatives agree on many aspects of end-of-life decision-making for nursing home patients with dementia. However, on some issues the outcomes of the decision-making may differ. Relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death. CONCLUSION: Although physicians, nurses and relatives are all guided by the best interest of the patient, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions. PRACTICE IMPLICATIONS: Physicians should discuss end-of-life decisions more openly. Physicians should be aware of the influences on attitudes and incorporate them into communication about end-of-life decisions.

Adult↗

When being 'tired of living' plays an important role in a request for euthanasia or physician-assisted suicide: patient characteristics and the physician's decision.

BACKGROUND: In the Netherlands physicians are allowed to grant requests for euthanasia or physician-assisted suicide (EAS) if they meet several requirements of due care. According to jurisprudence, a physician is not allowed to end the life of a patient whose request for EAS is based on being 'tired of living', because such a request falls outside the medical domain. Our previous studies have shown that in spite of this, such requests are made approximately 400 times a year. OBJECTIVES: To learn more about patients who request EAS because they are tired of living, and about factors that influence the decision of the physician. DESIGN: Questionnaires (n=4842) completed by general practitioners (n=3994). RESULTS: According to the physicians, 17% of patients who requested EAS were 'tired of living'. Of 139 patients in whose request for EAS being tired of living played a major role, 47% suffered from cancer, 25% suffered from another severe disease and 28% had no severe disease. In all three groups the same three symptoms occurred most frequently, 'feeling bad', 'tired', and 'not active'. Each of these symptoms occurred in more than half of the patients in each group. Most of the requests from patients with cancer were granted, but those from patients who had some other severe disease, or no severe disease at all, were refused. Factors that were related to granting a request were: the presence of unbearable and hopeless suffering, the absence of alternatives, and the absence of depressive symptoms. CONCLUSIONS: Being tired of living can play a major role in requests for EAS, both in the absence and the presence of a severe disease. The high occurrence of symptoms in the absence of a classifiable severe disease implies that physical symptoms are prevalent in this group of patients, leaving the legal requirement for EAS of 'a medical cause' open to interpretation in the more complex medical practice.

Adult↗

Medical end-of-life decisions for children in the Netherlands.

BACKGROUND: Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants. OBJECTIVE: To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. METHODS: Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments. RESULTS: Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases. CONCLUSIONS: While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child.

Adolescent↗

Physicians' willingness to grant requests for assistance in dying for children: a study of hypothetical cases.

OBJECTIVE: To study the willingness of Dutch physicians to use potentially life-shortening or lethal drugs for severely ill children. STUDY DESIGN: We asked 63 pediatricians about their approach to 10 hypothetical cases of children with cancer. The age of the child (15, 11, or 6 years), the child's (explicit) request, and the opinion of the parents varied. Two hypothetical cases were also presented to 125 general practitioners and 208 clinical specialists. RESULTS: Most pediatricians were willing to increase morphine in all cases. A total of 48% to 60% of pediatricians were willing to use lethal drugs in children at the child's request, when the parents agreed; when parents requested ending of life of their unconscious child, 37% to 42% of pediatricians were willing; 13% to 28% of pediatricians were willing when parents did not agree with their child's request. General practitioners and clinical specialists were as willing as pediatricians to use lethal drugs at the child's request, but less willing to grant a request of parents for their unconscious child. CONCLUSIONS: Many Dutch pediatricians are willing to use potentially life-shortening or lethal drugs for children. The legal limit of 12 years, as the age under which voluntary euthanasia is forbidden, is not fully supported by Dutch physicians.

Adolescent↗

A comparison of attitudes towards end-of-life decisions: survey among the Dutch general public and physicians.

In The Netherlands, there has been a continuing public debate about the acceptability and regulatory system for medical decision-making concerning the end of life. We studied attitudes of the Dutch general public towards different types of end-of-life decisions in various situations and compared them to attitudes of physicians. Questionnaires were mailed to 1777 members of the Dutch general public (response: 78%). A total of 391 Dutch physicians, including general practitioners, nursing home physicians and clinical specialists, were interviewed in person (response: 81%). In both the survey and physician interviews, questions were asked about attitudes towards active ending of life, terminal sedation, and increasing morphine with premature death as a likely consequence, using hypothetical cases of different patients. By logistic regression analysis, the differences between public and physicians' attitudes were assessed, as well as the associations between attitudes of the general public and their personal characteristics. Acceptance of active ending of life at the request of a terminally ill cancer patient was higher among the general public (85%) than among physicians (64%). For physicians, acceptance decreased to 36% for an incompetent adult, 11% for a patient without a serious disease, and 6% for a patient with dementia. For the general public, these percentages were 63%, 37%, and 62%, respectively. Between both groups, no differences were found in acceptance of terminal sedation and increasing morphine. For the general public, determinants of support for active ending of life were being non-religious, lower education, and having a single household. Acknowledging the observed differences in appreciation of end-of-life decision-making between the general public and physicians is important in doctor-patient communication and in public debate and policymaking. Continued monitoring of practices and informing the general public and policymakers about the clinical and ethical consequences of different types of end-of-life decisions is important.

Adult↗

Requests for euthanasia or physician-assisted suicide from older persons who do not have a severe disease: an interview study.

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.

Aged↗

Withdrawing an explicit request for euthanasia or physician-assisted suicide: a retrospective study on the influence of mental health status and other patient characteristics.

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.

Anxiety↗