Heide, A. van der

Authors' reply (Article)

2013-01-01T00:00:00Z

Sharp upturn of life expectancy in the Netherlands: effect of more health care for the elderly? (Article)

2011-11-29T00:00:00Z

During the 1980s and 1990s life expectancy at birth has risen only slowly in the Netherlands. In 2002, however, the rise in life expectancy suddenly accelerated. We studied the possible causes of this remarkable development. Mortality data by age, gender and cause of death were analyzed using life table methods and age-period-cohort modeling. Trends in determinants of mortality (including health care delivery) were compared with trends in mortality. Two-thirds of the increase in life expectancy at birth since 2002 were due to declines in mortality among those aged 65 and over. Declines in mortality reflected a period rather than a cohort effect, and were seen for a wide range of causes of death. Favorable changes in mortality determinants coinciding with the acceleration of mortality decline were mainly seen within the health care system. Health care expenditure rose rapidly after 2001, and was accompanied by a sharp rise of specialist visits, drug prescriptions, hospital admissions and surgical procedures among the elderly. A decline of deaths following non-treatment decisions suggests a change towards more active treatment of elderly patients. Our findings are consistent with the idea that the sharp upturn of life expectancy in the Netherlands was at least partly due to a sharp increase in health care for the elderly, and has been facilitated by a relaxation of budgetary constraints in the health care system.

Ethics and prevention of overweight and obesity: An inventory (Article)

2011-09-01T00:00:00Z

Efforts to counter the rise in overweight and obesity, such as taxes on certain foods and beverages, limits to commercial advertising, a ban on chocolate drink at schools or compulsory physical exercise for obese employees, sometimes raise questions about what is considered ethically acceptable. There are obvious ethical incentives to these initiatives, such as improving individual and public health, enabling informed choice and diminishing societal costs. Whereas we consider these positive arguments to put considerable effort in the prevention of overweight indisputable, we focus on potential ethical objections against such an effort. Our intention is to structure the ethical issues that may occur in programmes to prevent overweight and/or obesity in order to encourage further debate. We selected 60 recently reported interventions or policy proposals targeting overweight or obesity and systematically evaluated their ethically relevant aspects. Our evaluation was completed by discussing them in two expert meetings. We found that currently proposed interventions or policies to prevent overweight or obesity may (next to the benefits they strive for) include the following potentially problematic aspects: effects on physical health are uncertain or unfavourable; there are negative psychosocial consequences including uncertainty, fears and concerns, blaming and stigmatization and unjust discrimination; inequalities are aggravated; inadequate information is distributed; the social and cultural value of eating is disregarded; people's privacy is disrespected; the complexity of responsibilities regarding overweight is disregarded; and interventions infringe upon personal freedom regarding lifestyle choices and raising children, regarding freedom of private enterprise or regarding policy choices by schools and other organizations. The obvious ethical incentives to combat the overweight epidemic do not necessarily override the potential ethical constraints, and further debate is needed. An ethical framework to support decision makers in balancing potential ethical problems against the need to do something would be helpful. Developing programmes that are sound from an ethical point of view is not only valuable from a moral perspective, but may also contribute to preventing overweight and obesity, as societal objections to a programme may hamper its effectiveness. © 2011 The Authors. obesity reviews

Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects (Article)

2011-07-04T00:00:00Z

Background: The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients. Materials and methods: We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included. Results: Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. Conclusions: Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care.

Awareness of dying: it needs words (Article)

2011-06-20T00:00:00Z

Purpose: The purpose of this research is to study to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and whether medical records and nurses' and family caregivers' views on patients' awareness of dying agree. Methods: Nurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death. Results: Nurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients' awareness of dying was fair (Cohen's kappa = 0.23-0.31). Conclusions: Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.

The process of end-of-life decision-making in pediatrics: A national survey in the Netherlands (Article)

2011-04-01T00:00:00Z

OBJECTIVE: The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts. METHODS: We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons, and metabolic pediatricians practicing in the 8 Dutch university hospitals. We collected information on respondents' overall opinions and their clinical practice. RESULTS: Of the 185 eligible pediatric specialists, 74% returned the questionnaire. All responding physicians generally discuss an end-of-life decision with colleagues before discussing it with parents. In half of the reported cases, respondents informed parents about the intended decision and asked their permission. In one-quarter of the cases, respondents informed parents without asking for their permission. In the remaining onequarter of the cases, respondents advised parents and consequently allowed them to have the decisive voice. The chosen approach is highly influenced by type of decision and type and duration of treatment. Conflicts within medical teams arose as a result of uncertainties about prognosis and treatment options. Most conflicts with parents arose because parents had a more positive view of the prognosis or had religious objections to treatment discontinuation. All conflicts were eventually resolved by a combination of strategies. In 66% of all cases, pain and symptom management were intensified before the child's death. CONCLUSIONS: Within Dutch pediatrics, end-of-life decisions are team decisions. Pediatric specialists differ considerably in how they involve parents in end-of-life decision-making, ranging from benevolent paternalism to parental autonomy. Main conflict-solving strategies are taking more time and extending discussions. Copyright

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study (Article)

2011-03-08T00:00:00Z

Background: A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design. To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death. Discussion. To our knowledge, this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries.

Artificial nutrition and hydration for patients with advanced dementia: Perspectives from medical practitioners in the Netherlands and Australia (Article)

2011-01-01T00:00:00Z

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.

An overview of ethical frameworks in public health: Can they be supportive in the evaluation of programs to prevent overweight? (Article)

2010-10-26T00:00:00Z

Background. The prevention of overweight sometimes raises complex ethical questions. Ethical public health frameworks may be helpful in evaluating programs or policy for overweight prevention. We give an overview of the purpose, form and contents of such public health frameworks and investigate to which extent they are useful for evaluating programs to prevent overweight and/or obesity. Methods. Our search for frameworks consisted of three steps. Firstly, we asked experts in the field of ethics and public health for the frameworks they were aware of. Secondly, we performed a search in Pubmed. Thirdly, we checked literature references in the articles on frameworks we found. In total, we thus found six ethical frameworks. We assessed the area on which the available ethical frameworks focus, the users they target at, the type of policy or intervention they propose to address, and their aim. Further, we looked at their structure and content, that is, tools for guiding the analytic process, the main ethical principles or values, possible criteria for dealing with ethical conflicts, and the concrete policy issues they are applied to. Results. All frameworks aim to support public health professionals or policymakers. Most of them provide a set of values or principles that serve as a standard for evaluating policy. Most frameworks articulate both the positive ethical foundations for public health and ethical constraints or concerns. Some frameworks offer analytic tools for guiding the evaluative process. Procedural guidelines and concrete criteria for solving important ethical conflicts in the particular area of the prevention of overweight or obesity are mostly lacking. Conclusions. Public health ethical frameworks may be supportive in the evaluation of overweight prevention programs or policy, but seem to lack practical guidance to address ethical conflicts in this particular area.

Judgment of unbearable suffering and willingness to grant a euthanasia request by Dutch general practitioners (Article)

2010-10-01T00:00:00Z

'Unbearable suffering' is a pivotal criterion for lawful euthanasia in the Netherlands. The due-care criterion is not defined in the law and could refer to conditions varying from physical pain to psychological forms of suffering. It is unknown, however, what doctors consider 'unbearable suffering' and for what kind of suffering they are willing to grant a euthanasia request. We conducted a vignette-study among Dutch general practitioners (n = 115, response 38%). We found high concordance between the classification of a patient's suffering as 'unbearable' and the willingness to grant a euthanasia request. Most doctors are only inclined to classify a patient's suffering as 'unbearable' when suffering is directly related to untreatable and actual pain or physical symptoms. Doctors' judgment of suffering varied strongly in cases in which physical symptoms are absent and a patient suffers from a combination of irreversible functional loss and 'existential' kinds of suffering. Although some doctors (17%) stick to the idea that physical symptoms are a necessary condition for 'unbearable suffering', a majority is willing to occasionally make an exception. When and for which case an individual doctor will make such an exception, is highly unpredictable. Various explanations for the findings are discussed.

Physicians' and nurses' experiences with continuous palliative sedation in the Netherlands (Article)

2010-07-26T00:00:00Z

The last phase of life: Who requests and who receives euthanasia or physician-assisted suicide? (Article)

2010-07-01T00:00:00Z

BACKGROUND: When suffering becomes unbearable for patients they might request for euthanasia. OBJECTIVE: To study which patients request for euthanasia and which requests actually resulted in euthanasia in relation with diagnosis, care setting at the end of life, and patient demographics. DESIGN: A cross-sectional study covering all Dutch health care settings. PARTICIPANTS: In 2005, of death certificates of deceased persons, a stratified sample was derived from the Netherlands central death registry. The attending physician received a written questionnaire (n = 6860; response 78%). MEASUREMENTS: If deaths were reported to have been nonsudden, the attending physician filled in a 4-page questionnaire on end-of-life decision-making. Data regarding the deceased person's age, sex, marital status, and cause of death were derived from the death certificate. RESULTS: Of patients whose death was nonsudden, 7% explicitly requested for euthanasia. In about two thirds, the request did not lead to euthanasia or physician-assisted suicide being performed, in 39% because the patient died before the request could be granted and in 38% because the physician thought the criteria for due care were not met. Factors positively associated with a patient requesting for euthanasia are (young) age, diagnosis (cancer, nervous system), place of death (home), and involvement of palliative teams and psychiatrist in care. Diagnosis and place of death are also associated with requests resulting in euthanasia. CONCLUSIONS: Only a minority of patients request euthanasia at the end of life and of these requests a majority is not granted. Careful decision-making is necessary in all requests for euthanasia.

Awareness and use of practice guidelines on medical end-of-life decisions in Dutch hospitals (Article)

2010-07-01T00:00:00Z

Objective: To describe awareness, use and supportiveness for physicians of three practice guidelines on medical end-of-life decisions, and to identify factors associated with increased awareness of these guidelines. Methods: Questionnaires were sent to 793 physicians from 12 hospitals in 2005 (response 52%). Results: Most physicians were aware of the existence of the practice guidelines for euthanasia (75%) and do-not-resuscitate decisions (63%), and 35% were aware of the existence of the guidelines for palliative sedation. Physicians who had read the guidelines and had been in a situation in which they had to consider a euthanasia request, 88% had used the guidelines for euthanasia; corresponding figures are 92% for do-not-resuscitate and 100% for palliative sedation. When used, almost all physicians felt the guideline had been supportive. More positive attitudes towards guidelines and involvement in guideline development were associated with increased awareness of the presence of guidelines. Conclusion: It appears that practice guidelines on medical end-of-life decisions are useful for physicians: when they are aware of the presence of such guidelines in their institution, they gain support when using them. Practice implications: Health care institutions should be encouraged to disseminate guidelines among caregivers, and also involve them in the development of the guidelines.

Dutch experience of monitoring active ending of life for newborns (Article)

2010-04-01T00:00:00Z

Introduction: In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15-20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods: Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results: In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion: The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed.

Development and dissemination of institutional practice guidelines on medical end-of-life decisions in Dutch health care institutions (Article)

2010-03-01T00:00:00Z

Objectives: To describe how Dutch healthcare institutions develop and disseminate institutional practice guidelines on medical end-of-life decisions and policy statements on euthanasia and physician-assisted suicide (EAS) to relevant parties, and to describe supportiveness of EAS guidelines experienced by Dutch physicians. Methods: Questionnaires to all Dutch health care institutions in 2005. Questionnaire to sample of Dutch clinical specialists and nursing home physicians. Results: In most health care institutions, physicians (79%), ethics committees (79%), board of directors (64%) and nurses (61%) were involved in the development of guidelines. The Euthanasia Act and national guidelines were the most frequently reported sources for the development (73% and 71%, respectively). Not all institutions disseminated their written EAS policy statements and practice guidelines on medical end-of-life decisions to all relevant parties. Dutch physicians who reported the presence of a written guideline for EAS in their institution, felt supported by it in their decision-making after a patient's request for EAS. Conclusions: It is recommended that more health care institutions pay attention to the dissemination of their policy statements and practice guidelines to relevant parties. This will only lead to improvement in medical practice if this is accompanied by efforts to also stimulate the use of guidelines in practice.

Physicians' labelling of end-of-life practices: A hypothetical case study (Article)

2010-01-01T00:00:00Z

Objectives: To investigate why physicians label end-oflife acts as either 'euthanasia/ending of life' or 'alleviation of symptoms/palliative or terminal sedation', and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three 'standard' cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician's intention, (3) type of patient request, (4) patient's life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician's labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as 'euthanasia/ending of life' were the administration of muscle relaxants (99% of these cases were labelled as 'euthanasia/ending of life') or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as 'euthanasia' (87%) or 'ending of life' (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians' label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

End-of-Life Decision Making for Cancer Patients in Different Clinical Settings and the Impact of the LCP (Article)

2010-01-01T00:00:00Z

Differences in the general focus of care among hospitals, nursing homes, and homes may affect the adequacy of end-of-life decision making for the dying. We studied end-of-life decision-making practices for cancer patients who died in each of these settings and assessed the impact of the Liverpool Care Pathway for the Dying Patient (LCP), a template for care in the dying phase. Physicians and relatives of 311 deceased cancer patients completed questionnaires. The LCP was introduced halfway through the study period. During the last three months of life, patients who died in hospital received anticancer therapy and medication to relieve symptoms more often than those in both other settings. During the last three days of life, patients who died in the hospital or nursing home received more medication than those who died at home. The LCP reduced the extent to which physicians used medication that might have hastened death. Relatives of patients who died in the hospital tended to be least positive about the patient's and their own participation in the decision making. We conclude that cancer patients who die in the hospital are more intensively treated during the last phase of life than those who die elsewhere. The LCP has an impact on the use of potentially life-shortening medication during the dying phase. Communication about medical decision making tends to be better in the nursing home and at home.

Discussing prognosis with terminally ill cancer patients and relatives: A survey of physicians' intentions in seven countries (Article)

2009-12-01T00:00:00Z

Objective: To determine the extent to which physicians in different countries intend to inform terminal patients and relatives about prognosis, and to identify physician characteristics associated with an active approach to such discussions. Methods: In the context of a European research project, a study on disclosing prognosis was conducted in seven countries. A written questionnaire with questions regarding hypothetical cases and actual practices was sent to physicians from specialties involved in the care of dying patients. Results: 10,139 questionnaires were studied. The response rate was greater than 50% in all countries except Italy (39%). The percentage of physicians who indicated that they would actively inform competent patients of their prognosis varied between countries from 52% in Italy to 99% in Sweden. For informing relatives of incompetent patients, rates were higher, ranging from 86% in Denmark to 98% in Australia. Younger physician age and training in palliative care were associated with an active intention to discuss prognosis. Conclusion: Physicians' intentions to discuss prognosis with patients and families vary largely across countries. Physician age and training in palliative care may also affect intentions. Practice implications: Continuing training should focus on improving physicians' ability to communicate responsibly about prognosis with patients and families.

Reporting of euthanasia and physician-assisted suicide in the Netherlands: Descriptive study (Article)

2009-12-01T00:00:00Z

Background: An 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. Methods: We 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. Results: Physicians 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%). Conclusion: Dutch 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.

End of life decisions. Doctors can be trusted. (Article)

2009-09-28T00:00:00Z

Policy statements and practice guidelines for medical end-of-life decisions in Dutch health care institutions: Developments in the past decade (Article)

2009-09-01T00:00:00Z

Objectives: To describe the existence of policy statements on euthanasia and physician-assisted suicide (EAS) and practice guidelines for all medical end-of-life decisions in Dutch health care institutions in 2005, whether the existence of practice guidelines is related to characteristics of institutions, and to compare the existence of policies in 2005 and 1994. Methods: Questionnaires were sent to 566 institutions (all Dutch hospitals, nursing homes, general psychiatric hospitals, institutions for the mentally disabled, hospices) from October 2005 through March 2006. Results: Most institutions (70%) had a written policy statement concerning EAS. EAS was usually allowed under specific conditions (75%). Institutions mainly had practice guidelines for EAS and do-not-resuscitate decisions (62% and 63%). A minority had guidelines on palliative sedation (27%), alleviation of symptoms (27%) and withdrawing or withholding treatment (33%). In general, there were more practice guidelines in 2005 than in 1994. Larger institutions and institutions with an ethics committee more often had practice guidelines. Religious affiliation of an institution did not seem to be related to the existence of guidelines. Conclusions: Since many institutions still do not have practice guidelines for medical end-of-life decisions, they should be stimulated to introduce practice guidelines, being a first step in improving the quality of the care on institutional level.

Two decades of research on euthanasia from the Netherlands. What have we learnt and what questions remain? (Article)

2009-08-01T00:00:00Z

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.

Judgement of suffering in the case of a euthanasia request in the Netherlands (Article)

2009-08-01T00:00:00Z

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a "standard case" of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the "standard case" nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2-49%) than consultants (25-79%) and members of the euthanasia review committees (24-88%). In each group, the suffering of patients with early dementia and patients who were "tired of living" was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient's suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. Copyright

Re: Palliative sedation: the need for a descriptive definition (Article)

2009-07-31T00:00:00Z

End-of-life decisions in the United Kingdom. [letter] (Letter To Editor)

2009-07-31T00:00:00Z

How patients and relatives experience a visit from a consulting physician in the euthanasia procedure: A study among relatives and physicians (Article)

2009-03-01T00:00:00Z

This study investigated the impact of a visit from a consulting physician on the patient and the relatives during the euthanasia procedure in The Netherlands. Data on experiences with the consultant's visit were collected from 86 relatives and 3,614 general practitioners, who described their most recent request for euthanasia or physician-assisted suicide. More than three-quarters of the patients experienced the visit as they had expected, or became more positive. Although about 1 out of 5 patients had negative experiences, this study indicates that, in general, a visit from a consulting physician is not perceived to be burdensome for patients.

Trends in the Use of Opioids at the End of Life and the Expected Effects on Hastening Death (Article)

2009-02-01T00:00:00Z

The aim of our study was to describe trends in opioid use and perceptions of having hastened the end of life of a patient. In 2005, a questionnaire was sent to 6860 physicians in The Netherlands who had attended a death. The response rate was 78%. In 1995 and 2001 similiar studies were done. Physicians less often administered opioids with the intention to hasten death in 2005 (3.1% of the non-sudden deaths) than in 2001 and in 1995 (7% and 10%, respectively). Physicians gave similar dosages of opioids in 2005, 2001, and 1995, but physicians in 2005 less often thought that life was actually shortened than in 2001 and 1995 (37% in 2005, 50% in 2001, and 53% in 1995). Of the physicians in 2005 who did think that the life of the patient was shortened by opioids, 94% did not give higher dosages than were, in their own opinion, required for pain and symptom management. Physicians in 2005 more often took hastening death into account when they gave higher dosages of opioids when the patient experienced more severe symptoms and with female patients. In older patients (≥80 years), physicians took the hastening of death into account more often, but the actual dosages of opioids were lower. These data indicate that physicians in The Netherlands less often thought that death was hastened by opioids and less often gave opioids, with the intention to hasten death in 2005 than in 2001 and 1995.

A comparison of physicians' end-of-life decision making for non-western migrants and Dutch natives in the Netherlands (Article)

2008-12-01T00:00:00Z

Background: Non-western migrants have a different cultural background that influences their attitudes towards healthcare. As the first wave of this relatively young group is growing older, we investigated, for the first time, whether end-of-life decision-making practices for non-western migrants differ from Dutch natives. Methods: In 2005, we sent questionnaires to physicians who attended deaths identified from the central death registry of Statistics Netherlands (n = 9651; non-western migrants: n = 627, total response: 78%). We performed multivariate logistic regression analyses adjusted for age, sex and cause of death. Results: Of all deaths of non-western origin, 54% were non-sudden, whereas 67% of all deaths with a Dutch origin were non-sudden (P = 0.00). A relatively large number of non-suddenly deceased persons of non-western origin had died under the age of 65 (53%) as compared to Dutch natives (15%). Euthanasia was performed in 2.4% of all non-suddenly deceased persons in the non-western migrant group as compared to 2.7% in the native Dutch group (adjusted odds ratio = 0.82, P = 0.63). Alleviation of symptoms with a potential life-shortening effect was somewhat lower for non-western migrants (30% vs. 38%; adjusted odds ratio = 0.78, P = 0.07). Physicians decided to forgo potentially life-prolonging treatment in comparable rates (26% vs. 23%; adjusted odds ratio = 1.1, P = 0.73). Yet, the type of treatments forgone and underlying reasons differed. Conclusion: Euthanasia was not less common among non-suddenly deceased non-western migrants as compared to Dutch natives. However, intensive symptom alleviation was used less frequently and forgoing potentially life-prolonging treatment involved different characteristics. These findings suggest that cultural factors may affect end-of-life decision making.

Continuous deep sedation for patients nearing death in the Netherlands: descriptive study (Article)

2008-10-31T00:00:00Z

Objectives To study the practice of continuous deep sedation in 2005 in the Netherlands and compare it with findings from 2001. Design Questionnaire study about random samples of deaths reported to a central death registry in 2005 and 2001. Setting Nationwide physician study in the Netherlands. Participants Reporting physicians received a questionnaire about the medical decisions that preceded the patient’s death; 78% (n=6860) responded in 2005 and 74% (n=5617) in 2001. Main outcome measures Characteristics of continuous deep sedation (attending physician, types of patients, drugs used, duration, estimated effect on shortening life, palliative consultation). Requests for euthanasia. Results The use of continuous deep sedation increased from 5.6% (95% confidence interval 5.0% to 6.2%) of deaths in 2001 to 7.1% (6.5% to 7.6%) in 2005, mostly in patients treated by general practitioners and in those with cancer (in 2005, 47% of sedated patients had cancer v 33% in 2001). In 83% of cases sedation was induced by benzodiazepines, and in 94% patients were sedated for periods of less than one week until death. Nine per cent of those who received continuous deep sedation had previously requested euthanasia but their requests were not granted. Nine per cent of the physicians had consulted a palliative expert. Conclusions The increased use of continuous deep sedation for patients nearing death in the Netherlands and the limited use of palliative consultation suggests that this practice is increasingly considered as part of regular medical practice.

Dutch criteria of due care for physician-assisted dying in medical practice: A physician perspective (Article)

2008-09-01T00:00:00Z

Introduction: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient's suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice. Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act. Results: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient's suffering was unbearable and hopeless (79%) and whether or not the patient's request was voluntary or well considered (58%). Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient's subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.

Palliative Sedation in a Specialized Unit for Acute Palliative Care in a Cancer Hospital: Comparing Patients Dying With and Without Palliative Sedation (Article)

2008-09-01T00:00:00Z

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract (P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.

Presence, communication and treatment of fatigue and pain complaints in incurable cancer patients (Article)

2008-07-01T00:00:00Z

Objective: This study describes the experiences of fatigue and pain in incurable cancer patients and the treatment they receive. Methods: Patients were recruited via medical specialists from hospitals in the South and Southwest of the Netherlands. Hundred and twenty-five incurable cancer patients filled out a written questionnaire and were also interviewed at home. Results: Ninety percent reported to suffer from fatigue and 48% had pain. Forty-five percent had discussed fatigue with a healthcare professional and 55% had discussed pain. Fifteen percent reported to receive medical treatment for their fatigue and 29% received pain treatment. Treatment for fatigue and pain treatment had been recently adjusted in 4% of the patients with fatigue complaints and 21% of the patients with pain complaints. Conclusion: Although fatigue is a more common problem than pain in patients with incurable cancer, less attention in the care is paid to fatigue and its treatment than to pain. Practice implications: Fatigue deserves more attention in the care policy for incurable cancer patients and more research should be focused on interventions to address fatigue in this group of cancer patients.

Using the LCP: Bereaved relatives' assessments of communication and bereavement (Article)

2008-06-01T00:00:00Z

The Liverpool Care Pathway (LCP) is aimed at improving care and communication in the dying phase. The authors studied whether use of the LCP affects relatives' retrospective evaluation of communication and their level of bereavement. An intervention study was conducted. During the baseline period, usual care was provided to dying patients. During the intervention period, the LCP was used for 79% of the patients. In total, bereaved relatives filled in a questionnaire for 57% of the patients, on average 4 months after death. In the intervention period, relatives had lower bereavement levels when compared with relatives in the baseline period (P =.01). Communication was evaluated similarly for both periods. We conclude that LCP use during the dying phase seems to moderately contribute to lower levels of bereavement in relatives.

Decision-Making after Ultrasound Diagnosis of Fetal Abnormality (Article)

2008-05-01T00:00:00Z

During the last few decades, the use of ultrasonography for the detection of fetal abnormalities has become widespread in many industrialised countries. This resulted in a shift in timing of the diagnosis of congenital abnormalities in infants from the neonatal period to the prenatal period. This has major implications for both clinicians and the couples involved. In case of ultrasound diagnosis of fetal anomaly there are several options for the obstetric management, ranging from standard care to non-aggressive care to termination of pregnancy. This essay explores the context of both clinical and parental decision-making after ultrasound diagnosis of fetal abnormality, with emphasis on the Dutch situation. While normal findings at ultrasound examination have strong beneficial psychological effects on the pregnant woman and her partner, the couple are often ill-prepared for bad news about the health of their unborn child in the case of abnormal findings. When parents consider end-of-life decisions, they experience both ambivalent and emotional feelings. On the one hand, they are committed to their pregnancy; on the other hand, they want to protect their child, themselves and the family from the burden of severe disability. These complex parental reactions have implications for the counselling strategy. © 2008 Reproductive Health Matters.

The effect of the Liverpool Care Pathway for the dying: A multi-centre study (Article)

2008-03-01T00:00:00Z

We studied the effect Of the Liverpool Care Pathway (LCP) on the documentation of care, symptom burden and communication in three health care settings. Between November 2003 and February 2005 (baseline period), the care was provided as usual. Between February 2005 and February 2006 (intervention period), the LCP was used for all patients for whom the dying phase had started. After death of the patient, a nurse and a relative filled in a questionnaire. In the baseline period, 219 nurses and 130 relatives filled in a questionnaire for 220 deceased patients. In the intervention period, 253 nurses and 139 relatives filled in a questionnaire for 255 deceased patients. The LCP was used for 197 of them. In the intervention period, the documentation of care was significantly more comprehensive compared with the baseline period, whereas the average total symptom burden was significantly lower in the intervention period. LCP use contributes to the quality of documentation and symptom control.

Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia (Article)

2008-02-12T00:00:00Z

Background: In this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs. Methods: An anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. Results: The response rate differed between countries (39-68%). The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%. Conclusion: There are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude.

Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives (Article)

2007-12-01T00:00:00Z

Introduction Previous studies have shown that most people prefer to die at their own home. We investigated whether physicians or bereaved relatives in retrospect differently appreciate the dying of patients in an institution or at home. Materials and methods Of 128 patients with incurable cancer who were followed in the last phase of their lives, 103 passed away during follow-up. After death, physicians filled out a written questionnaire for 102 of these patients, and 63 bereaved relatives were personally interviewed. Results Of 103 patients, 49 died in an institution (mostly a hospital), and 54 died at home (or in two cases in a home-like situation). Patients who had been living with a partner relatively often died at home. Bereaved relatives knew of the patient’s wish to die at home in 25 out of 63 cases; 20 of these patients actually died at home. Thirty-one patients had no known preference concerning their place of dying. Most symptoms and the care provided to address them were equally prevalent in patients dying in an institution and patients dying at home. Bereaved relatives were in general quite satisfied about the provision of medical and nursing care in both settings. Conclusion We conclude that most patients’ preferences concerning the place of dying can be met. In about half of all cases, patients do not seem to have a clear preference concerning their place of dying, which is apparently not a major concern for many people. We found no indication that dying in an institution or at home involves major differences in the process and quality of dying.

End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: Does place of death make a difference? (Article)

2007-12-01T00:00:00Z

Objective: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. Design: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. Setting: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part). Main outcome measures: The incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions. Results: Response rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3-5.1%); non-treatment decisions generally occurred more often in hospitals (22.4-41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes. Conclusion: The results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.

Having a difficult time leaving: Experiences and attitudes of nurses with palliative sedation (Article)

2007-11-26T00:00:00Z

Background: Palliative sedation is an important topic of medical and ethical debates. Although nurses often participate in its use, little is known about their attitudes and experiences. Methods: In a qualitative study, we explored nurses' attitudes and experiences with palliative sedation. In semi-structured interviews with 16 nurses, we collected data about their most memorable cases of palliative sedation. Interviews were transcribed, coded and analysed using constant comparative analysis. Results: In all of the described cases, palliative sedation was used primarily to address physical suffering in severely ill patients. Concomitant reasons for the use of palliative sedation were nonphysical suffering, the patient's wish and the family's distress about the patient's suffering. The use of palliative sedation for the patient's nonphysical suffering was often difficult for many of the nurses. Nurses had different perspectives on whether palliative sedation may have had a life-shortening effect on the patient. Some thought that it had not accelerated death; others thought that it may have accelerated death but that this was justified when there was no other way of relieving discomfort. A third group thought that palliative sedation was close to the practice of euthanasia and they often found it difficult to be involved in its use. Nevertheless, palliative sedation was considered by all the nurses to positively contribute to the patient's quality of dying in all discussed cases. Conclusions: The struggles that nurses in this study cohort experienced indicate the need for further study and may suggest the need for more nursing education and discussion about ethical aspects of palliative sedation.

Decision-making after ultrasound diagnosis of fetal abnormality (Article)

2007-11-01T00:00:00Z

During the last few decades, the use of ultrasonography for the detection of fetal abnormalities has become widespread in many industrialised countries. This resulted in a shift in timing of the diagnosis of congenital abnormalities in infants from the neonatal period to the prenatal period. This has major implications for both clinicians and the couples involved. In case of ultrasound diagnosis of fetal anomaly, there are several options for the obstetric management, ranging from standard care to non-aggressive care and termination of pregnancy. This essay explores the context of both clinical and parental decision making after ultrasound diagnosis of fetal abnormality, with emphasis on the Dutch situation. While normal findings at ultrasound examination have strong beneficial psychological effects on the pregnant woman and her partner, the couple is often ill prepared for bad news about the health of their unborn child in the case of abnormal findings. This is, in particular, true in settings where ultrasonography for the detection of fetal abnormalities is offered as an integral part of antenatal care without appropriate counselling. An important question is to what extent the couple should be supported in decision making when a fetal abnormality is diagnosed. In this context, the parental perception of having a choice varies markedly. When parents consider end-of-life decisions, they experience both ambivalent and emotional feelings. On the one hand, they are committed to their pregnancy, while on the other hand, they want to protect their child, themselves and the family from the burden of severe disability. These complex parental reactions have implications for the counselling strategy.

Legal physician-assisted dying in Oregon and the Netherlands: Evidence concerning the impact on patients in "vulnerable" groups (Article)

2007-10-01T00:00:00Z

Background: Debates over legalisation of physician-assisted suicide (PAS) or euthanasia often warn of a "slippery slope", predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period. Methods: The data from Oregon (where PAS, now called death under the Oregon Death with Dignity Act, is legal) comprised all annual and cumulative Department of Human Services reports 1998-2006 and three independent studies; the data from the Netherlands (where both PAS and euthanasia are now legal) comprised all four government-commissioned nationwide studies of end-of-life decision making (1990, 1995, 2001 and 2005) and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought. Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups. Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges.

The last 3 days of life in three different care settings in the Netherlands (Article)

2007-10-01T00:00:00Z

Introduction: Little is known about the characteristics of dying in different care settings, such as the hospital, the nursing home, or the home-care setting. Materials and methods: We measured the burden of symptoms, medical and nursing interventions, and aspects of communication during the last 3 days of life within each of these settings. We included 239 of 321 patients (74%) who died in one of these settings in the southwest of The Netherlands, between November 2003 and February 2005. After the patient's death, a nurse filled in a questionnaire. Results: Pain and shortness of breath were more severe in hospital patients as compared to nursing home and home-care patients, whereas incontinence was less severe in hospital patients. Several medical interventions, such as a syringe driver, vena punctures or lab tests, radiology or ECG, antibiotics, and drainage of body fluids were more often applied during the last 3 days of life to hospital patients than to nursing home and home-care patients. This also holds for the measurement of body temperature and blood pressure. In the hospital setting, the patient and the family were more often informed about the imminence of death of the patient than elsewhere. The general practitioner and other professional caregivers were less often informed about the imminence of death of hospital patients than of other patients. Discussion: We conclude that pain and shortness of breath were more severe among hospital patients, whereas incontinence was more severe among nursing home and home-care patients. Hospital patients relatively often receive medical interventions and standard controls during the last 3 days of life. In hospital, communication about impending death seems to take place more often shortly before death.

Forgoing Artificial Nutrition or Hydration in Patients Nearing Death in Six European Countries (Article)

2007-09-01T00:00:00Z

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.

Physician discussions with terminally ill patients: A cross-national comparison (Article)

2007-07-27T00:00:00Z

A major issue in the care of terminally ill patients is communication and information provision. This paper reports the extent to which physicians in Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland discuss topics relevant to end of life care with terminally ill patients and their relatives (without first informing the patient), and possible associations between physician-specific characteristics and such discussions. Response rates to the postal survey ranged from 39% to 68% (n = 10139). Physicians in most of the countries except Italy 'in principle, always' discuss issues related to terminal illness with their patients but not with patients' relatives without first informing the patient, unless the relatives ask. Cross-national differences remained strong after controlling for physician characteristics. The majority of physicians appeared to support the principle of patient-centred care to terminally ill patients, consistent with palliative care philosophy and with the law and/or professional guidelines in most of the countries studied.

Patient evaluation of end-of-life care (Article)

2007-06-28T00:00:00Z

The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient.

End-of-life decision making in neonates and infants: Comparison of the Netherlands and Belgium (Flanders) (Article)

2007-06-01T00:00:00Z

Aim: We compared the results of two recent studies on end-of-life decisions (ELDs) for neonates and infants in Belgium (Flanders) and the Netherlands. Methods: Questionnaires were sent to physicians who reported the death of a child under the age of 1 (Belgium: n = 292, response 87%; Netherlands: n = 249, response 84%). The questionnaires included structured questions about whether death had been preceded by ELDs, and about the decision-making process. Results: In both countries, in about 25% of all deaths a life-sustaining treatment was withheld, and in about 40% pain or other symptoms were alleviated taking into account that death might be hastened. In Belgium, a life-sustaining treatment was less often withdrawn than in the Netherlands (32% vs. 50%, respectively). Drugs were administered with the explicit intention of hastening death in similar percentages of all deaths (Belgium: 7%; Netherlands: 9%). Dutch physicians more often than Belgian physicians discussed ELDs with parents (96% vs. 81%, respectively), and with colleague physicians (94% vs. 80%, respectively). Conclusions: End-of-life decision making in severely ill neonates seems to be rather similar in Belgium and the Netherlands. Differences are that Dutch physicians more often withdraw life-sustaining treatment. Furthermore, parents and colleague physicians are more often involved in the decision making in the Netherlands.

End-of-life practices in the Netherlands under the Euthanasia Act (Article)

2007-05-10T00:00:00Z

BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. METHODS: We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. RESULTS: In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. CONCLUSIONS: 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. Copyright

Using drugs to end life without an explicit request of the patient (Article)

2007-03-01T00:00:00Z

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion. Copyright

Impact of decision-making in a multidisciplinary perinatal team (Article)

2007-02-01T00:00:00Z

Objectives: (1) To describe the characteristics of decision-making about management of unborn infants with serious anomalies by a multidisciplinary perinatal team. (2) To evaluate the impact of multidisciplinary team discussions on the degree to which decisions about the management of unborn infants with serious anomalies are supported. (3) To evaluate the impact of the team discussions on the arguments used by physicians for their preferences concerning management. Methods: Prospective analysis of 78 cases discussed within the multidisciplinary perinatal team of a tertiary centre by means of an anonymous one-page questionnaire with structured questions pertaining to the opinion of the responder on medical management of each case. Results: We did not find systematic differences between specialties prior to the discussion of cases. However, discussion with the multidisciplinary perinatal team improved decision-making about management of unborn infants with serious anomalies by enhancing the degree of support for the decisions taken. The discussions of the team did not change the physicians' arguments mentioned for their preferences. Conclusion: Multidisciplinary team discussions improve decision-making about management of unborn infants with serious congenital anomalies. Copyright

Relatives' perspective on the terminally ill patients who died after euthanasia or physician-assisted suicide: A retrospective cross-sectional interview study in the Netherlands (Article)

2007-01-01T00:00:00Z

This study used retrospective interviews with 87 relatives to describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a later date. Hopeless suffering, loss of dignity, and no prospect of recovery were the most prevalent reasons for explicitly requesting EAS. According to the relative, in 92% of patients EAS had contributed favourably to the quality of the end of life, mainly by preventing or ending suffering. Copyright

Regulating physician-assisted dying for minors in the Netherlands: Views of paediatricians and other physicians (Article)

2007-01-01T00:00:00Z

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.

End of life medical decision making: Evaluation of the differences between terminally ill cancer patients who died after euthanasia had been performed and terminally ill cancer patients who did not request euthanasia (Article)

2006-01-01T00:00:00Z

Objectives - To evaluate the possible determinants of euthanasia and assisted suicide, presenting data on symptoms and their treatment, and end-of-life care in two groups of patients, i.e those who request euthanasia and those who did not request euthanasia. Design - Qualitative methods with interviews. Setting - Department of Public and Occupational Health. VU Medical Centre, Amsterdam and University of Medical Centre, Rotterdam, The Netherlands. Method - Data on terminally ill cancer patients who died after their request was granted and euthanasia had been performed were compared with those of terminally ill cancer patients who did not request euthanasia. Results - The results show that the prevalence and severity of symptoms e.g., pain, feeling unwell, nausea, was higher in patients who died after their request was granted and euthanasia had been performed. No differences concerning the treatment of symptoms or the care provided were found between the two groups. Conclusion - The results suggest that the practice of euthanasia is mainly related to the patient's suffering.

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

2005-09-01T00:00:00Z

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.

Medical decision making in scarcity situations (Article)

2004-01-01T00:00:00Z

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 (Article)

2004-01-01T00:00:00Z

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 the decision to use deep sedation in 59% of the 211 most recent cases (CI, 52% to 66%) and the decision to forgo artificial nutrition or hydration in 34% (CI, 28% to 41%). Hastening death was partly the intention of the physician in 47% (CI, 41% to 54%) of cases and the explicit intention in 17% (CI, 13% to 22%) of cases. LIMITATIONS: The generalizability of physician reports about their most recent cases to all terminal sedation cases is uncertain. In addition, the findings are subject to recall bias and may not apply to other geographic settings. CONCLUSIONS: Terminal sedation precedes a substantial number of deaths in the Netherlands. In about two thirds of most recently reported cases, physicians indicated that in addition to alleviating symptoms, they intended to hasten death.

Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands (Article)

2000-01-01T00:00:00Z

BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide.

The role of parents in end-of-life decisions in neonatology: physicians' views and practices (Article)

1998-01-01T00:00:00Z

OBJECTIVE: End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background for the ethical discussion on the parent's versus the physician's role in decision-making. METHODS: We conducted face-to-face interviews with a stratified sample of pediatricians. The response rate was 99%. The most recent decisions in newborn infants to hasten death or not prolong life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensively discussed. RESULTS: Decisions to hasten death or not prolong life were usually made after discussing it with parents and did not occur while parents were known to disagree. Situations in which an end-of-life decision was not made because parents did not consent predominantly involved infants with complications of prematurity (24%) or perinatal asphyxia (40%), whereas situations in which parents requested an end-of-life decision that was not acceded to by the pediatrician involved Down syndrome as the main diagnosis in 43% and as a concurrent diagnosis in 21%. Pediatricians afterwards often expressed feelings of discontent about situations in which there had been disagreement with parents. CONCLUSIONS: The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisive in case it invokes the continuation of treatment. The principle of preserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the best interest of the child.

Physician-assisted death in psychiatric practice in the Netherlands (Article)

1997-01-01T00:00:00Z

BACKGROUND: In 1994 the Dutch Supreme Court ruled that in exceptional instances, physician-assisted suicide might be justifiable for patients with unbearable mental suffering but no physical illness. We studied physician-assisted suicide and euthanasia in psychiatric practice in the Netherlands. METHODS: In 1996, we sent questionnaires to 673 Dutch psychiatrists - about half of all such specialists in the country - and received 552 responses from the 667 who met the study criteria (response rate, 83 percent). We estimated the annual frequencies of requests for physician-assisted suicide by psychiatrists and actual instances of assistance. RESULTS: Of the respondents, 205 (37 percent) had at least once received an explicit, persistent request for physician-assisted suicide and 12 had complied. We estimate there are 320 requests a year in psychiatric practice and 2 to 5 assisted suicides. Excluding those who had ever assisted, 345 of the respondents (64 percent) thought physician-assisted suicide because of a mental disorder could be acceptable, including 241 who said they could conceive of instances in which they themselves would be willing to assist. The most frequent reasons for refusing were the belief that the patient had a treatable mental disorder, opposition to assisted suicide in principle, and doubt that the suffering was unbearable or hopeless. Most, but not all, patients who had been assisted by their psychiatrists in suicide had both a mental disorder and a serious physical illness, often in a terminal phase. Thirty percent of the respondents had been consulted at least once by a physician in another specialty about a patient's request for assisted death. The annual number of such consultations was estimated at 310, about 3 percent of the estimated 9700 requests for euthanasia or physician-assisted suicide in medical practice. CONCLUSIONS: Explicit requests for physician-assisted suicide are not uncommon in psychiatric practice in the Netherlands, but these requests are rarely granted. Psychiatric consultation for medical patients who request physician-assisted death is relatively rare.