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Biomedical subjects

Luc Deliens

Publications and source records attributed to Luc Deliens.

At least 19 recordsLinked to original sources
PubMed2006

Communication about euthanasia in general practice: opinions and experiences of patients and their general practitioners.

OBJECTIVE: Public opinion and professional organisations dominate the euthanasia debate, and there is a need to understand the opinions of people confronted with euthanasia. The aim of this study was to investigate whether patients and their GPs talk about euthanasia, and if so, how they communicate about this. METHODS: Qualitative, semi-structured interviews were held with 20 GPs and 30 of their patients in primary care in the Netherlands, where euthanasia is legalised. The patients had a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Many patients did not communicate about euthanasia with their GP. Neither the patient nor the GP were clear in formulating their expectations concerning future decision making. CONCLUSION: The initial patient-GP communication consisted of an exchange of opinions about situations in which euthanasia would be desirable. GPs had different opinions about who should initiate communication, and found it difficult to judge the right moment to talk. PRACTICE IMPLICATIONS: It is essential to pay attention to education in communication about dying and euthanasia and to train the GPs to gain insight in the patient's end-of-life preferences, and to direct care at the best possible quality of life.

Advance Care Planning↗
PubMed2006

Consultation of parents in actual end-of-life decision-making in neonates and infants.

The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.

Belgium↗
PubMed2006

End-of-life decisions among cancer patients compared with noncancer patients in Flanders, Belgium.

PURPOSE: Incidence studies reported more end-of-life decisions with possible/certain life-shortening effect (ELDs) among cancer patients than among noncancer patients. These studies did not correct for the different proportions of sudden/unexpected deaths of cancer versus noncancer patients, which could have biased the results. We investigated incidences and characteristics of ELDs among nonsudden cancer and noncancer deaths. METHODS: We sampled 5,005 certificates of all deaths in 2001 (Flanders, Belgium) stratified for ELD likelihood. Questionnaires were mailed to the certifying physicians. Data were corrected for stratification and nonresponse. RESULTS: The response rate was 59%. Among 2,128 nonsudden deaths included, ELDs occurred in 74% of cancer versus 50% of noncancer patients (P < .001). Symptom alleviation with possible life-shortening effect occurred more frequently among cancer patients (P < .001); nontreatment decisions occurred less frequently (P < .001). The higher incidence of lethal drug use among cancer patients did not hold after correcting for patient age. Half of the cancer patients who died after an ELD were incompetent to make decisions compared with 76% of noncancer patients (P < .001). Discussion with patients and relatives was similar in both groups. In one fifth of all patients the ELD was not discussed. CONCLUSION: ELDs are common in nonsudden deaths. The different incidences for symptom alleviation with possible life-shortening effect and nontreatment decisions among cancer versus noncancer patients may be related to differences in dying trajectories and in timely recognition of patient needs. The end-of-life decision-making process is similar for both groups: consultation of patients and relatives can be improved in a significant minority of patients.

Adolescent↗
PubMed2006

Trends in acceptance of euthanasia among the general public in 12 European countries (1981-1999).

BACKGROUND: We wanted to examine how the acceptance of euthanasia among the general public in Western Europe has changed in the last decades, and we wanted to look for possible explanations. METHODS: We analysed data from the European Values Surveys, held in 1981, 1990, and 1999-2000 in 12 West European countries. In each country, representative samples of the general public were interviewed using the same structured questionnaire in all countries. Euthanasia was explained in the questionnaires as 'terminating the life of the incurably sick'. RESULTS: A total of 46 199 respondents participated in the surveys. A significant increase in acceptance of euthanasia could be observed in all countries except (West) Germany. While the average increase in euthanasia acceptance was 22%, the increase was particularly obvious in Belgium, Italy, Spain, and Sweden. Although changes in several characteristics of respondents, such as decrease in religious beliefs, rising belief in the right to self-determination, and (to a lesser extent) rise in levels of education, were associated with growing acceptance of euthanasia, they could only partly explain the increase of euthanasia acceptance over the years. CONCLUSIONS: An increase of euthanasia acceptance among the general public took place over the last two decades in almost all West European countries, possibly indicating a growing support for personal autonomy regarding medical end-of-life decisions. If this trend continues, it is likely to increase the public and political debate about the (legal) regulation of euthanasia under certain conditions of careful medical practice in several West European countries.

Adolescent↗
PubMed2006

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

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

Australia↗
PubMed2006

European public acceptance of euthanasia: socio-demographic and cultural factors associated with the acceptance of euthanasia in 33 European countries.

In many European countries, the last decade has been marked by an increasing debate about the acceptability and regulation of euthanasia and other end-of-life decisions in medical practice. Growing public sensibility to a 'right to die' for terminally ill patients has been one of the main constituents of these debates. Within this context, we sought to describe and compare acceptance of euthanasia among the general public in 33 European countries. We used the European Values Study data of 1999-2000 with a total of 41125 respondents (63% response rate) in 33 European countries. The main outcome measure concerned the acceptance of euthanasia (defined as 'terminating the life of the incurably sick', rated on a scale from 1 to 10). Results showed that the acceptance of euthanasia tended to be high in some countries (e.g. the Netherlands, Denmark, France, Sweden), while a markedly low acceptance was found in others (e.g. Romania, Malta and Turkey). A multivariate ordinal regression showed that weaker religious belief was the most important factor associated with a higher acceptance; however, there were also socio-demographic differences: younger cohorts, people from non-manual social classes, and people with a higher educational level tended to have a higher acceptance of euthanasia. While religious belief, socio-demographic factors, and also moral values (i.e. the belief in the right to self-determination) could largely explain the differences between countries, our findings suggest that perceptions regarding euthanasia are probably also influenced by national traditions and history (e.g. Germany). Thus, we demonstrated clear cross-national differences with regard to the acceptance of euthanasia, which can serve as an important basis for further debate and research in the specific countries.

Adolescent↗
PubMed2006

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

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

Adult↗
PubMed2006

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.

Adult↗
PubMed2006

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.

Adult↗
PubMed2006

Predicted survival vs. actual survival in terminally ill noncancer patients in Dutch nursing homes.

Studies on the prediction of survival have mainly focused on hospital and hospice patients suffering from cancer. The aim of this study was to describe the predicted vs. the actual survival in terminally ill, mainly noncancer patients in Dutch nursing homes (NHs). A prospective cohort study was conducted in 16 NHs representative for The Netherlands. A total of 515 NH patients with a maximum life expectancy of 6 weeks, as assessed by an NH physician, were included. NH physicians were accurate in more than 90% of their prognoses for terminally ill--mainly noncancer--NH patients, when death occurred within 7 days. For a longer period of time, their predictions became inaccurate. In the category of patients who were expected to die within 8-21 days, predictions were accurate in 16.0%, and in the category of patients expected to die within 22-42 days, this was 13.0%. Predictions in these categories were mainly optimistic (patient died earlier) in 68.6% and 52.2%, respectively. The findings of this study suggest that accurate prediction of survival of (mainly) noncancer patients in NHs is only possible when death is imminent and seems to be dependent on an intimate knowledge of patients. Prognostication over a longer period of time tends to be less accurate, and, therefore, continues to be a challenging task for NH physicians.

Aged↗
PubMed2006

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.

Adolescent↗
PubMed2006

Spiritual issues in palliative care consultations in the Netherlands.

INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was analysed for a two-year period. RESULTS: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. DISCUSSION: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.

Adolescent↗
PubMed2006

Defining the patient population: one of the problems for palliative care research.

There is a lack of clear definition and clear inclusion criteria in palliative care research. The aim of this study was to describe consequences of three inclusion criteria in the build up of different study populations, studied in terms of size, number of doctor-patient contacts and demographic characteristics. General practitioners received a questionnaire for all patients who died during the second Dutch National Survey of General Practice (n=2194), to determine whether (1) patients received non-curative treatment; (2) patients received palliative care; and (3) death was expected (total response rate =73%). The criterion 'death was expected' included most patients (62%) followed by 'palliative care' (46%) and 'noncurative treatment' (39%). Similarity between the definition-based populations was fair to moderate. More 'palliative care' and 'death was expected' in patients who had cancer than 'non-curative treatment' patients. The conclusions show substantial differences in populations according to the different inclusion criteria used to select them. Future research in palliative care should acknowledge the limitations of using certain inclusion criteria and explore potential bias.

Adult↗
PubMed2006

The last two days of life of nursing home patients--a nationwide study on causes of death and burdensome symptoms in The Netherlands.

OBJECTIVES: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients. METHODS: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for The Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients. RESULTS: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively. CONCLUSION: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.

Aged↗
PubMed2006

Communication on end-of-life decisions with patients wishing to die at home: the making of a guideline for GPs in Flanders, Belgium.

BACKGROUND: Communication with patients on end-of-life decisions is a delicate topic for which there is little guidance. AIM: To describe the development of a guideline for GPs on end-of-life communication with patients who wish to die at home, in a context where patient autonomy and euthanasia are legally regulated. DESIGN OF STUDY: A three-phase process (generation, elaboration and validation). In the generation phase, literature findings were structured and then prioritised in a focus group with GPs of a palliative care consultation network. In the elaboration phase, qualitative data on patients' and caregivers' perspectives were gathered through a focus group with next-of-kin, in-depth interviews with terminal patients, and four quality circle sessions with representatives of all constituencies. In the validation phase, the acceptability of the draft guideline was reviewed in bipolar focus groups (GPs-nurses and GPs-specialists). Finally, comments were solicited from experts by mail. SETTING: Primary home care in Belgium. SUBJECTS: Participants in this study were terminal patients (n = 17), next-of-kin of terminal patients (n = 17), GPs (n = 25), specialists (n = 3), nurses (n = 8), other caregivers (n = 2) and experts (n = 41). RESULTS: Caregivers and patients expressed a need for a comprehensive guideline on communication in end-of-life decisions. Four major communication themes were prioritised: truth telling; exploration of the patient's wishes regarding the end of life; dealing with disproportionate interventions; and dealing with requests for euthanasia in the terminal phase of life. Additional themes required special attention in the guideline: continuity of care by the GP; communication on foregoing food and fluid; and technical aspects of euthanasia. CONCLUSION: It was feasible to develop a guideline by combining the three cornerstones of evidence-based medicine: literature search, patient values and professional experience.

Advance Directives↗
PubMed2006

Good end-of-life care according to patients and their GPs.

BACKGROUND: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. AIM: To explore the aspects valued by both patients and GPs in end-of-life care at home, and to reflect upon the results in the context of future developments in primary care. DESIGN OF STUDY: Interviews with patients and their own GP. SETTING: Primary care in the Netherlands. METHOD: Qualitative, semi-structured interviews with 20 GPs and 30 of their patients with a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Patients and GPs had comparable perceptions of good end-of-life care. Patients and GPs identified four core items that they valued in end-of-life care: availability of the GP for home visits and after office-hours, medical competence and cooperation with other professionals, attention and continuity of care. CONCLUSIONS: Future developments in the organisation of primary care such as the restriction of time for home visits, more part-time jobs and GP cooperatives responsible for care after office hours, may threaten valued aspects in end-of-life care.

Aged↗
PubMed2005

Dying at home or in an institution using death certificates to explore the factors associated with place of death.

INTRODUCTION: The knowledge of determinants of place of death is important for public health policy aimed at improving the quality of end-of-life care. METHODS: We investigated the influence of clinical, socio-demographic, residential and health care system factors on the place of death, using data from all 55,759 deaths in 2001 in Flanders (Belgium), gathered via official death certificates and data from anonymously linked health care statistics. A multivariate logistic regression was used to examine the associated factors (home versus hospital as dependent categories). RESULTS: Of all deaths in Flanders, 53.7% took place in hospital, 24.3% at home and 19.8% in a care home. The probability of home deaths varied by region, by rural or urban residence and by the hospital bed availability in the region and dying at home was less likely among those suffering from certain non-malignant chronic diseases, the less educated and those living alone. CONCLUSION: Although most people wish to die at home, most deaths in Flanders (Belgium) in 2001 did not take place there. The clinical, socio-demographic and residential factors found to be associated with the place of death could serve as focal points for a policy to facilitate dying in the place of choice, including at home.

Adult↗