Attitudes among Danes toward prenatal testing and termination of pregnancy.

Denmark offers public financed prenatal testing (PNT) to all pregnant women, but results are typically not available until after 12 weeks gestation, which is also the time limit for termination of pregnancy (TOP) on request. Committees decide on requests for later TOP. In a questionnaire survey, we investigated attitudes among Danes toward these issues. We also asked for opinions on two claims commonly found in the debate concerning women's right to decide on TOP in relation to PNT. One thousand people aged 18-45 years were drawn randomly from the national personal register. The response rate was 49%. Women and older respondents were overrepresented and may have caused a bias toward conservative attitudes. A majority supported the current PNT program and time limit for TOP on request, but only one-third supported committees deciding on all cases of late TOP. The implications of prenatal testing results becoming more accessible are discussed.

Attitudes towards abortion among trainees in obstetrics/gynecology and clinical genetics.

This study aimed to provide knowledge about attitudes towards abortion among Danish physicians in training in the specialties of obstetrics/gynecology and clinical genetics. The study was a questionnaire survey among trainees in these specialties. Ninety-six responded. Trainees in clinical genetics were more pro-abortion than those in obstetrics/gynecology (p=0.04). Of the respondents, 30 versus 48% found working with early and late abortions unpleasant. Nearly half agreed that they had chosen their specialty despite having to counsel and treat women having abortions. Twenty-one percent agreed that working with late abortion affected their job satisfaction negatively. Those agreeing with the above statements had a tendency towards lower pro-abortion scores than those who were indifferent or who disagreed but the differences were not significant. A substantial fraction of physicians in training have negative feelings associated with abortion-related work and require support in handling and coping with these challenges.

Discussing prognosis with terminally ill cancer patients and relatives: a survey of physicians' intentions in seven countries.

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.

Bedside rationing by general practitioners: a postal survey in the Danish public healthcare system.

BACKGROUND: It is ethically controversial whether medical doctors are morally permitted to ration the care of their patients at the bedside. To explore whether general practitioners in fact do ration in this manner we conducted a study within primary care in the Danish public healthcare system. The purpose of the study was to measure the extent to which general practitioners (GPs) would be willing to factor in cost-quality trade-offs when prescribing medicine, and to discover whether, and if so to what extent, they believe that patients should be informed about this. METHODS: Postal survey of 600 randomly selected Danish GPs, of which 330 responded to the questionnaire. The Statistical Package for the Social Sciences (SPSS, version 14.0) was used to produce general descriptive statistics. Significance was calculated with the McNemar and the chi-square test. The main outcome measures of the study were twofold: an assessment of the proportion of GPs who, in a mainly hypothetical setting, would consider cost-quality trade-offs relevant to their clinical decision-making given their economic impact on the healthcare system; and a measure of the extent to which they would disclose this information to patients. RESULTS: In the hypothetical setting 95% of GPs considered cost-quality trade-offs relevant to their clinical decision-making given the economic impact of such trade-offs on the healthcare system. In all 90% stated that this consideration had been relevant in clinical decision-making within the last month. In the hypothetical setting 55% would inform their patients that they considered a cost-quality trade-off relevant to their clinical decisions given the economic impact of such trade-offs on the healthcare system. The most common reason (68%) given for not wanting to inform patients about this matter was the belief that the information would not prove useful to patients. In the hypothetical setting cost-quality trade-offs were considered relevant significantly more often in connection with concerns about costs to the patient (86%) than they were in connection with concerns about costs to the healthcare system (55%; p < 0.001). CONCLUSION: Although readiness to consider cost-quality trade-offs relevant to clinical decisions is prevalent among GPs in Denmark, only half of GPs would disclose to patients that they consider this relevant to their clinical decision-making. The results of this study raise two important ethical problems. First, under Danish law physicians are required to inform patients about all equal treatments. The fact that only a few GPs would inform their patients about all of the relevant treatments therefore seems to contravene Danish law. Second, it is ethically controversial that physicians act as economic gatekeepers.

Physicians' experiences with end-of-life decision-making: survey in 6 European countries and Australia.

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.

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

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.

Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses.

BACKGROUND: Systematic and reliable epidemiological information at population level, preferably cross-national, is needed for an adequate planning of (end-of-life) health care policies, e.g. concerning place of death, but is currently lacking. This study illustrates opportunities and weaknesses of death certificate data to provide such information on place of death and associated factors in nine European countries (seven entire countries and five regions). METHODS: We investigated the possibility and modality of all partners in this international comparative study (BE, DK, IT, NL, NO, SE, UK) to negotiate a dataset containing all deaths of one year with their national/regional administration of mortality statistics, and analysed the availability of information about place of death as well as a number of clinical, socio-demographic, residential and healthcare system factors. RESULTS: All countries negotiated a dataset, but rules, procedures, and cost price to get the data varied strongly between countries. In total, about 1.1 million deaths were included. For four of the nine countries not all desired categories for place of death were available. Most desired clinical and socio-demographic information was available, be it sometimes via linkages with other population databases. Healthcare system factors could be made available by linking existing healthcare statistics to the residence of the deceased. CONCLUSION: Death certificate data provide information on place of death and on possibly associated factors and confounders in all studied countries. Hence, death certificate data provide a unique opportunity for cross-national studying and monitoring of place of death. However, modifications of certain aspects of death certificate registration and rules of data-protection are perhaps required to make international monitoring of place of death more feasible and accurate.

Physician discussions with terminally ill patients: a cross-national comparison.

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.

Forgoing artificial nutrition or hydration in patients nearing death in six European countries.

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.

Using drugs to end life without an explicit request of the patient.

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.

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.

Do-not-resuscitate decisions in six European countries.

OBJECTIVE: To study and compare the incidence and main background characteristics of do-not-resuscitate (DNR) decision making in six European countries. DESIGN: Retrospective. SETTING: We studied DNR decisions simultaneously in Belgium (Flanders), Denmark, Italy (four regions), the Netherlands, Sweden, and Switzerland (German-speaking part). In each country, random samples of death certificates were drawn from death registries to which all deaths are reported. The deaths occurred between June 2001 and February 2002. PARTICIPANTS: Reporting physicians received a mailed questionnaire about the medical decision making that had preceded death. The response percentage was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. The total number of deaths studied was 20,480. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measurements were frequency of DNR decisions, both individual and institutional, and patient involvement. Before death, an individual DNR decision was made in about 50-60% of all nonsudden deaths (Switzerland 73%, Italy 16%). The frequency of institutional decisions was highest in Sweden (22%) and Italy (17%) and lowest in Belgium (5%). DNR decisions are discussed with competent patients in 10-84% of cases. In the Netherlands patient involvement rose from 53% in 1990 to 84% in 2001. In case of incompetent patients, physicians bypassed relatives in 5-37% of cases. CONCLUSIONS: Except in Italy, DNR decisions are a common phenomenon in these six countries. Most of these decisions are individual, but institutional decisions occur frequently as well. In most countries, the involvement of patients in DNR decision making can be improved.

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.

Drugs used to alleviate symptoms with life shortening as a possible side effect: end-of-life care in six European countries.

We investigated the drugs used in the alleviation of pain and symptoms (APS) with a possible life-shortening side effect in six European countries' end-of-life care. We sent mail questionnaires to physicians who signed a representative sample of death certificates in each country. APS with a possible life-shortening effect occurred from 19% of all deaths in Italy to 26% in Denmark. Physicians usually administered opioids (from 76% of APS cases in Italy to 96% in The Netherlands), but the type of opioids and administration practice differed markedly between countries. The doses of opioids given in the last 24 hours also varied significantly and were usually lower than 300 mg oral morphine equivalent (from 83% of cases in Belgium to 93% in Sweden). The highly variable results bring into question whether existing guidelines for pain relief were applied appropriately and to what extent unfounded concerns about the possible life-shortening effect of opioids resulted in less than optimal symptom management in end-of-life care.

Continuous deep sedation: physicians' experiences in six European countries.

Continuous deep sedation (CDS) is sometimes used to treat refractory symptoms in terminally ill patients. The aim of this paper was to estimate the frequency and characteristics of CDS in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. Deaths reported to death registries were sampled and the reporting doctors received a mailed questionnaire about the medical decision making that preceded the death of the patient. The total number of deaths studied was 20,480. The response rate ranged between 44% (Italy) and 75% (The Netherlands). Of all deaths, CDS was applied in 2.5% in Denmark and up to 8.5% in Italy. Of all patients receiving CDS, 35% (Italy) and up to 64% (Denmark and The Netherlands) did not receive artificial nutrition or hydration. Patients who received CDS were more often male, younger than 80 years old, more likely to have had cancer, and died more often in a hospital compared to nonsudden deaths without CDS. The high variability of frequency and characteristics of CDS in the studied European countries points out the importance of medical education and scientific debate on this issue.

Access to death certificates: what should research ethics committees require for approval?

PURPOSE: To present and discuss the reactions of research ethics committees (RECs) in a number of countries when asked for approval of a study requiring access to death certificates to identify the physicians signing the certificates and to send them a four-page questionnaire about medical decisions made at the patient's end-of-life that could possibly have hastened death. METHODS: A simple questionnaire were sent to the responsible national investigator in an international study (Australia, Belgium, Denmark, Italy, the Netherlands, Sweden, Switzerland) asking about the interactions between the national research group and the national/regional REC(s). RESULTS: Different laws or guidelines were used by the RECs. Denmark, the Netherlands, and Switzerland did not require an application to a REC. In Australia and Sweden, the RECs wanted changes in the research protocol, and one national research group had to refrain from publishing its results because the attrition rate became too high, probably due to the required changes in the protocol. RECOMMENDATIONS: Generally, similar demands from all RECs in relation to one project are strongly desirable. In epidemiological research, in which voluntary completion of an anonymous questionnaire demonstrates consent, additional prior informed consent about being approached should not be required.

Palliative care training: a survey of physicians in Australia and Europe.

The purpose of this paper is to present data about the level and background characteristics of physicians' training in palliative care in Australia (AU), Belgium (BE), Denmark (DK), Italy (IT), The Netherlands (NL), Sweden (SE) and Switzerland (CH) (n = 16,486). The response rate to an anonymous questionnaire differed between countries (39%-68%). In most countries approximately half of all responding physicians had any formal training in palliative care (median: 3-10 days). Exceptions were NL (78%) and IT (35%). The most common type of training was a postgraduate course. Physicians in nursing home medicine (only in NL), geriatrics, oncology (not in NL), and general practice had the most training. In all seven countries, physicians with such training discussed options for palliative care and options to forgo life-sustaining treatment more often with their patients than did physicians without. Irrespective of earlier palliative care training, 87%-98% of the physicians wanted extended training.

Forgoing treatment at the end of life in 6 European countries.

BACKGROUND: Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient's life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics. METHODS: Between June 2001 and February 2002, samples were obtained from deaths reported to registries in Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland. The reporting physician was then sent a questionnaire about the medical decision-making process that preceded the patient's death. RESULTS: The incidence of nontreatment decisions, whether or not combined with other end-of-life decisions, varied widely from 6% of all deaths studied in Italy to 41% in Switzerland. Most frequently forgone in every country were hydration or nutrition and medication, together representing between 62% (Belgium) and 71% (Italy) of all treatments withheld or withdrawn. Forgoing treatment estimated to prolong life for more than 1 month was more common in the Netherlands (10%), Belgium (9%), and Switzerland (8%) than in Denmark (5%), Italy (3%), and Sweden (2%). Relevant determinants of treatment being withheld rather than withdrawn were older age (odds ratio [OR], 1.53; 95% confidence interval [CI], 1.31-1.79), death outside the hospital (death in hospital: OR, 0.80; 95% CI, 0.68-0.93), and greater life-shortening effect (OR, 1.75; 95% CI, 1.27-2.39). CONCLUSIONS: In all of the participating countries, life-prolonging treatment is withheld or withdrawn at the end of life. Frequencies vary greatly among countries. Low-technology interventions, such as medication or hydration or nutrition, are most frequently forgone. In older patients and outside the hospital, physicians prefer not to initiate life-prolonging treatment at all rather than stop it later.

Physicians' attitudes towards end-of-life decisions: a comparison between seven countries.

In the context of an European collaborative research project (EURELD), a study on attitudes towards medical end-of-life decisions was conducted among physicians in Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. Australia also joined the consortium. A written questionnaire with structured questions was sent to practising physicians from specialties frequently involved in the care of dying patients. 10,139 questionnaires were studied. Response rate was equal to or larger than 50% in all countries except Italy (39%). Apart from general agreement with respect to the alleviation of pain and symptoms with possible life-shortening effect, there was large variation in support--between and within countries--for medical decision that may result in the hastening of death. A principal component factor analysis found that 58% of the variance of the responses is explained by four factors. 'Country' explained the largest part of the variation of the standardized factor scores.