Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients’ appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors.
A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last three months of life of 4,396 patients who died non-suddenly. Prevalences were estimated and logistic regressions were used to examine between country differences and country-specific associated patient and care factors.
GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient discussion of primary diagnosis, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments.
The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern compared to the two southern European countries. Factors associated with preference discussions and surrogate appointments suggest that delaying diagnosis discussions impedes anticipatory planning, whereas early preference discussions, particularly for dementia patients, and the provision of palliative care encourage participation.
In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries.
Methods and design
Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project.
Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.
Quality indicators; Quality measurement; Palliative care; Quality of care; End of life care; Hospice care; Outcome measures; Developing method
Little is known about treatment aims during the last 3 months of life.
To investigate important treatment aims in the last 3 months of patients’ lives in cases of non-sudden death.
Design and setting
Mortality follow-back study in the Netherlands.
Data were collected retrospectively in 2009 within the representative Sentinel Network of GPs in the Netherlands. GPs completed a standardised registration form.
Data for 279 patients were studied. Of these, 55% died of cancer and 45% of another disease. Treatment was aimed at palliation for 73% of the patients in months 2 and 3 before death, and for 95% of the patients in the last week of life. Seven per cent received treatment aimed at cure in the last week of life. In a minority of patients, cure/life prolongation and palliation were simultaneously important treatment aims. In the last week of life and in the 2–4 weeks before death, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. In the 2–4 weeks before death, palliation was an important treatment aim for a larger proportion of patients with cancer than patients with other diseases.
Registration by GPs show that, in the last weeks and days of life, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. For a small number of patients, palliation and cure/life prolongation were simultaneously important treatment aims.
epidemiological studies; general practitioners; palliative care; terminal care; treatment
Many patients are transferred from home to hospital during the final phase of life and the majority die in hospital. The aim of the study is to explore hospital referrals of palliative care patients for whom an out-of-hours general practitioner was called.
A retrospective descriptive chart study was conducted covering a one-year period (1/Nov/2005 to 1/Nov/2006) in all eight out-of-hours GP co-operatives in the Amsterdam region (Netherlands). All symptoms, sociodemographic and medical characteristics were recorded in 529 charts for palliative care patients. Multivariate logistic regression analysis was performed to identify the variables associated with hospital referrals at the end of life.
In all, 13% of all palliative care patients for whom an out-of-hours general practitioner was called were referred to hospital. Palliative care patients with cancer (OR 5,1), cardiovascular problems (OR 8,3), digestive problems (OR 2,5) and endocrine, metabolic and nutritional (EMN) problems (OR 2,5) had a significantly higher chance of being referred. Patients receiving professional nursing care (OR 0,2) and patients for whom their own general practitioner had transferred information to the out-of-hours cooperative (OR 0,4) had a significantly lower chance of hospital referral. The most frequent reasons for hospital referral, as noted by the out-of-hours general practitioner, were digestive (30%), EMN (19%) and respiratory (17%) problems.
Whilst acknowledging that an out-of-hours hospital referral can be the most desirable option in some situations, this study provides suggestions for avoiding undesirable hospital referrals by out-of-hours general practitioners at the end of life. These include anticipating digestive, EMN, respiratory and cardiovascular symptoms in palliative care patients.
General Practice; Primary Care; Palliative Care; Out of Hours; Hospital Referral; Cancer; Symptoms
We describe the development of a new training programme on GP-patient communication in palliative care, and the applicability to GPs and GP Trainees. This ‘ACA training programme’ focuses on A vailability of the GP for the patient, C urrent issues that should be raised by the GP, and A nticipating various scenarios. Evaluation results indicate the ACA training programme to be applicable to GPs and GP Trainees. The ACA checklist was appreciated by GPs as useful both in practice and as a learning tool, whereas GP Trainees mainly appreciated the list for use in practice.
Palliative care; Communication; Education; Family practice; Feasibility studies; Physician-patient relations
Case management is a heterogeneous concept of care that consists of assessment, planning, implementing, coordinating, monitoring, and evaluating the options and services required to meet the client's health and service needs. This paper describes the result of an expert panel procedure to gain insight into the aims and characteristics of case management in palliative care in the Netherlands.
A modified version of the RAND®/University of California at Los Angeles (UCLA) appropriateness method was used to formulate and rate a list of aims and characteristics of case management in palliative care. A total of 76 health care professionals, researchers and policy makers were invited to join the expert panel, of which 61% participated in at least one round.
Nine out of ten aims of case management were met with agreement. The most important areas of disagreement with regard to characteristics of case management were hands-on nursing care by the case manager, target group of case management, performance of other tasks besides case management and accessibility of the case manager.
Although aims are agreed upon, case management in palliative care shows a high level of variability in implementation choices. Case management should aim at maintaining continuity of care to ensure that patients and those close to them experience care as personalised, coherent and consistent.
Case management; End of life care; Palliative care
A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the ‘slippery slope’ hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal.
We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%.
While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant.
Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.
Ageism; Age inequalities; End of life; End-of-life decisions; Slippery slope; Euthanasia; Palliative care; Belgium
Recognising patients who will die in the near future is important for adequate planning and provision of end-of-life care. GPs can play a key role in this.
To explore the following questions: How long before death do GPs recognise patients likely to die in the near future? Which patient, illness, and care-related characteristics are related to such recognition? How does recognising death in the near future, before the last week of life, relate to care in during this period?
Design and setting
One-year follow-back study via a surveillance GP network in the Netherlands.
Registration of demographic and care-related characteristics.
Of 252 non-sudden deaths, 70% occurred in the home or care home and 30% in hospital. GP recognition of death in the near future was absent in 30%, and occurred prior to the last month in 15%, within the last month in 19%, and in the last week in 34%. Logistic regression analyses showed cancer and low functional status were positively associated with death in the near future; cancer and discussing palliative care options were positively associated with recognising death in the near future before the last week of life. Recognising death in the near future before patients’ last week of life was associated with fewer hospital deaths, more GP–patient contacts in the last week, more deaths in a preferred place, and more-frequent GP–patient discussions about specific topics in the last 7 days of life.
Recognising death in the near future precedes several aspects of end-of-life care. The proportion in whom death in the near future is never recognised is large, suggesting GPs could be assisted in this process through training and implementation of care protocols that promote timely recognition of the dying phase.
death; general practitioner; home care; primary care; recognition of dying phase; terminal care
Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.
To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.
Design of study
Qualitative study with focus groups, interviews, and questionnaires.
GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.
GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.
Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.
The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.
communication; palliative care; physicians, family; physician–patient relationship; qualitative research
While increasing attention is being paid to enabling terminal patients to remain at home until death, limited information is available on the circumstances in which people at home actually die. Therefore this study aims to describe patient characteristics, functional and cognitive status and physical and psychological symptom burden in the last three months of life among Belgian patients dying at home, according to their GPs.
In 2005, a nationwide and retrospective interview study with GPs took place on people dying at home in Belgium as reported by Sentinel Network of GPs in Belgium. GPs registered all deaths (patients aged 1 year or more) weekly and were interviewed about all patients dying non-suddenly at home, using face-to-face structured interviews.
Interviews were obtained on 205 patients (90% response rate). Between the second and third month before death, 55% were fully invalid or limited in self-care. In the last week of life, almost all were fully invalid. Fifty four percent were unconscious at some point during the last week; 46% were fully conscious. Most frequently reported symptoms were lack of energy, lack of appetite and feeling drowsy. Conditions most difficult for GPs to manage were shortness of breath, lack of energy and pain.
Many people dying at home under the care of their GPs in Belgium function relatively well until the last week of life and cognitive status seems to be preserved until the end in many cases. However, symptoms which GPs find difficult to control still manifest in many patients in the final week of life.
To describe role and involvement of Life End Information Forum (LEIF) physicians in end-of-life care decisions and euthanasia in Flanders.
All 132 LEIF physicians in Belgium received a questionnaire inquiring about their activities in the past year, and their end-of-life care training and experience.
Response rate was 75 percent. Most respondents followed substantive training in end-of-life care. In 1 year, LEIF physicians were contacted 612 times for consultations in end-of-life decisions, of which 355 concerned euthanasia requests eventually resulting in 221 euthanasia cases. LEIF physicians also gave information about various end-of-life issues (including palliative care) to patients and colleagues.
LEIF physicians provide a forum for information and advice for physicians and patients. A similar health service providing support to physicians for all end-of-life decisions could also be beneficial for countries without a euthanasia law.
Consultation; euthanasia; end-of-life decisions
Debates about euthanasia often polarise opinion, but Jan Bernheim and colleagues describe how in Belgium the two camps grew up side by side to mutual benefit
Since most patients prefer out-of-hospital death, place of death can be considered an indicator of end-of-life care quality. The study of trends in place of death is necessary to examine causes of shifts, to evaluate efforts to alter place of death and develop future policies. This study aims to examine past trends and future projections of place of death.
Analysis of death certificates (decedents aged ≥ 1 year) in Belgium (Flanders and Brussels Capital region) 1998-2007. Trends in place of death were adjusted for cause of death, sociodemographic characteristics, environmental factors, numbers of hospital beds, and residential and skilled nursing beds in care homes. Future trends were based on age- and sex-specific mortality prognoses.
Hospital deaths decreased from 55.1% to 51.7% and care home deaths rose from 18.3% to 22.6%. The percentage of home deaths remained stable. The odds of dying in a care home versus hospital increased steadily and was 1.65 (95%CI:1.53-1.78) in 2007 compared to 1998. This increase could be attributed to the replacement of residential beds by skilled nursing beds. Continuation of these trends would result in the more than doubling of deaths in care homes and a decrease in deaths at home and in hospital by 2040.
Additional end-of-life care resources in care homes largely explain the decrease in hospital deaths. Care homes will become the main locus of end-of-life care in the future. Governments should provide sufficient skilled nursing resources in care homes to fulfil the end-of-life care preferences and needs of patients.
Euthanasia became legal in Belgium in 2002. Physicians must adhere to legal due care requirements when performing euthanasia; for example, consulting a second physician and reporting each euthanasia case to the Federal Review Committee.
To study the adherence and non-adherence of GPs to legal due care requirements for euthanasia among patients dying at home in Belgium and to explore possible reasons for non-adherence.
Design of study
Large scale, retrospective study.
General practice in Belgium.
A retrospective mortality study was performed in 2005–2006 using the nationwide Belgian Sentinel Network of General Practitioners. Each week GPs reported medical end-of-life decisions taken in all non-sudden deaths of patients in their practice. GP interviews were conducted for each euthanasia case occurring at home.
Interviews were conducted for nine of the 11 identified euthanasia cases. Requirements concerning the patient's medical condition were met in all cases. Procedural requirements such as consultation of a second physician were sometimes ignored. Euthanasia cases were least often reported (n = 4) when the physician did not regard the decision as euthanasia, when only opioids were used to perform euthanasia, or when no second physician was consulted. Factors that may contribute to explaining non-adherence to the euthanasia law included: being unaware of which practices are considered to be euthanasia; insufficient knowledge of the euthanasia law; and the fact that certain procedures are deemed burdensome.
Substantive legal due care requirements for euthanasia concerning the patient's request for euthanasia and medical situation were almost always met by GPs in euthanasia cases. Procedural consultation and reporting requirements were not always met.
euthanasia; health policy; terminal care
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.
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.
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.
To examine differences in end‐of‐life decision‐making in patients dying at home, in a hospital or in a care home.
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.
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.
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.
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.
decision making; epidemiology; euthanasia; terminal care; withholding treatment
Objectives To estimate the rate of reporting of euthanasia cases to the Federal Control and Evaluation Committee and to compare the characteristics of reported and unreported cases of euthanasia.
Design Cross sectional analysis.
Setting Flanders, Belgium.
Participants A stratified at random sample was drawn of people who died between 1 June 2007 and 30 November 2007. The certifying physician of each death was sent a questionnaire on end of life decision making in the death concerned.
Main outcome measures The rate of euthanasia cases reported to the Federal Control and Evaluation Committee; physicians’ reasons for not reporting cases of euthanasia; the relation between reporting and non-reporting and the characteristics of the physician and patient; the time by which life was shortened according to the physician; the labelling of the end of life decision by the physician involved; and differences in characteristics of due care between reported and unreported euthanasia cases.
Results The survey response rate was 58.4% (3623/6202 eligible cases). The estimated total number of cases of euthanasia in Flanders in 2007 was 1040 (95% CI 970 to 1109), thus the incidence of euthanasia was estimated as 1.9% of all deaths (95% CI 1.6% to 2.3%). Approximately half (549/1040 (52.8%, 95% CI 43.9% to 60.5%)) of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee. Physicians who perceived their case as euthanasia reported it in 93.1% (67/72) of cases. Cases of euthanasia were reported less often when the time by which life was shortened was less than one week compared with when the perceived life shortening was greater (37.3% v 74.1%; P<0.001). Unreported cases were generally dealt with less carefully than reported cases: a written request for euthanasia was more often absent (87.7% v 17.6% verbal request only; P<0.001), other physicians and caregivers specialised in palliative care were consulted less often (54.6% v 97.5%; 33.0% v 63.9%; P<0.001 for both), the life ending act was more often performed with opioids or sedatives (92.1% v 4.4%; P<0.001), and the drugs were more often administered by a nurse (41.3% v 0.0%; P<0.001).
Conclusions One out of two euthanasia cases is reported to the Federal Control and Evaluation Committee. Most non-reporting physicians do not perceive their act as euthanasia. Countries debating legalisation of euthanasia should simultaneously consider developing a policy facilitating the due care and reporting obligations of physicians.
Being able to die in one's place of choice is an indicator of the quality of end-of-life care. GPs may play a key role in exploring and honouring patients' preferences for place of death.
To examine how often GPs are informed about patients' preferred place of death, by whom and for which patients, and to study the expressed preferred place of death and how often patients die at their preferred place.
Design of study
One-year nationwide mortality retrospective study.
Sentinel Network of GPs in Belgium, 2006.
GPs' weekly registration of all deaths (patients aged ≥1 year).
A total of 798 non-sudden deaths were reported. GPs were informed of patients' preferred place of death in 46% of cases. GPs obtained this information directly from patients in 63%. GP awareness was positively associated with patients not being hospitalised in the last 3 months of life (odds ratio [OR] = 3.9; 95% confidence interval [CI] = 2.8 to 5.6), involvement of informal caregivers (OR = 3.3; 95% CI = 1.8 to 6.1), use of a multidisciplinary palliative care team (OR = 2.5; 95% CI = 1.8 to 3.5), and with presence of more than seven contacts between GP and patient or family in the last 3 months of life (OR = 3.0; 95% CI = 2.2 to 4.3). In instances where GPs were informed, more than half of patients (58%) preferred to die at home. Overall, 80% of patients died at their preferred place.
GPs are often unaware of their patients' preference for place of death. However, if GPs are informed, patients often die at their preferred location. Several healthcare characteristics might contribute to this and to a higher level of GP awareness.
advance care planning; end-of-life care; general practitioner; palliative care; preferred place of death; terminal care
Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an explicit request from the patient, in Flanders, Belgium, where euthanasia is legal.
We mailed a questionnaire regarding the use of life-ending drugs with or without explicit patient request to physicians who certified a representative sample (n = 6927) of death certificates of patients who died in Flanders between June and November 2007.
The response rate was 58.4%. Overall, 208 deaths involving the use of life-ending drugs were reported: 142 (weighted prevalence 2.0%) were with an explicit patient request (euthanasia or assisted suicide) and 66 (weighted prevalence 1.8%) were without an explicit request. Euthanasia and assisted suicide mostly involved patients less than 80 years of age, those with cancer and those dying at home. Use of life-ending drugs without an explicit request mostly involved patients 80 years of older, those with a disease other than cancer and those in hospital. Of the deaths without an explicit request, the decision was not discussed with the patient in 77.9% of cases. Compared with assisted deaths with the patient’s explicit request, those without an explicit request were more likely to have a shorter length of treatment of the terminal illness, to have cure as a goal of treatment in the last week, to have a shorter estimated time by which life was shortened and to involve the administration of opioids.
Physician-assisted deaths with an explicit patient request (euthanasia and assisted suicide) and without an explicit request occurred in different patient groups and under different circumstances. Cases without an explicit request often involved patients whose diseases had unpredictable end-of-life trajectories. Although opioids were used in most of these cases, misconceptions seem to persist about their actual life-shortening effects.
Belgium’s law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient’s explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths.
In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case.
The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician’s decision-making process. More often this entailed an exchange of information on the patient’s condition or the patient’s or relatives’ wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician’s orders but mostly in the physician’s absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37–217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98–15.70).
By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
Although the incidence of the use of life-ending drugs without explicit patient request has been estimated in several studies, in-depth empirical research on this controversial practice is nonexistent. Based on face-to-face interviews with the clinicians involved in cases where patients died following such a decision in general practice in Belgium, we investigated the clinical characteristics of the patients, the decision-making process, and the way the practice was conducted.
Mortality follow-back study in 2005-2006 using the nationwide Sentinel Network of General Practitioners, a surveillance instrument representative of all GPs in Belgium. Standardised face-to-face interviews were conducted with all GPs who reported a non-sudden death in their practice, at home or in a care home, which was preceded by the use of a drug prescribed, supplied or administered by a physican without an explicit patient request.
Of the 2690 deaths registered by the GPs, 17 were eligible to be included in the study. Thirteen interviews were conducted. GPs indicated that at the time of the decision all patients were without prospect of improvement, with persistent and unbearable suffering to a (very) high degree in nine cases. Twelve patients were judged to lack the competence to make decisions. GPs were unaware of their patient's end-of-life wishes in nine cases, but always discussed the practice with other caregivers and/or the patient's relatives. All but one patient received opioids to hasten death. All GPs believed that end-of-life quality had been "improved considerably".
The practice of using life-ending drugs without explicit patient request in general practice in Belgium mainly involves non-competent patients experiencing persistent and unbearable suffering whose end-of-life wishes can no longer be ascertained. GPs do not act as isolated decision-makers and they believe they act in the best interests of the patient. Advance care planning could help to inform GPs about patients' wishes prior to their loss of competence.
The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals.
A cross-sectional mail survey was sent to all acute hospitals (67 main campuses) in Flanders (Belgium). The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level.
The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%). While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%). More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals.
Most Flemish acute hospitals have developed a policy on end-of-life practices. However, communication, training and the education of health care providers about these policies is not always provided, and quality assessment tools are used in less than half of the hospitals.
In the Netherlands, the increase in of out-of-hours care that is provided by GP co-operatives is challenging the continuity of care for the terminally ill in general practice. Aim of this study is to investigate the views of general practitioners (GPs) on the transfer of information about terminally ill patients to the GP co-operatives. GPs were asked to give their view from two different perspectives: as a GP in their daily practice and as a locum in the GP co-operative.
Retrospective web based questionnaire sent to all 424 GPs in the Amsterdam region.
With a response rate of 42%, 177 physicians completed the questionnaire. Transfer of information to the GP co-operative about most of their terminally ill patients was reported by 82% of the GPs and 5% did not do so for any of their patients. A faster than foreseen deterioration of the patient's situation was the most frequently reported reason for not transferring information.
Of those who transferred information to the GP co-operative, more than 95% reported that they provided information about the diagnosis and terminally ill status of the patient. Information about medication, patient wishes regarding treatment, and prognosis was reported by respectively 90%, 87%, and 74% of the GPs. Less than 50% of the GPs reported that they transferred information about the patient's awareness of both the diagnosis and the prognosis, about the psychosocial context, and intolerances.
In their role as locum, over 90% of the GPs wanted to receive information about the diagnosis, the terminally ill status of the patient, the medication and the patient's wishes regarding treatment.
Although most GPs reported that they transferred information about their terminally ill patients to the GP co-operative, the content of this information varies considerably. Only 21% of the GPs, working out of hours as a locum, were satisfied with the quality of the information transferred.
The Netherlands, Belgium, and Luxembourg have adopted laws decriminalizing euthanasia under strict conditions of prudent practice. These laws stipulate, among other things, that the attending physician should consult an independent colleague to judge whether the substantive criteria of due care have been met. In this context initiatives were taken in the Netherlands and Belgium to establish specialized services providing such consultants: Support and Consultation for Euthanasia in the Netherlands (SCEN) and Life End Information Forum (LEIF) in Belgium. The aim of this study is to describe and compare these initiatives.
We studied and compared relevant documents concerning the Dutch and Belgian consultation service (e.g. articles of bye-laws, inventories of activities, training books, consultation protocols).
In both countries, the consultation services are delivered by trained physicians who can be consulted in cases of a request for euthanasia and who offer support and information to attending physicians. The context in which the two organisations were founded, as well as the way they are organised and regulated, is different in each country. By providing information on all end-of-life care matters, the Belgian LEIF seems to have a broader consultation role than the Dutch SCEN. SCEN on the other hand has a longer history, is more regulated and organised on a larger scale and receives more government funding than LEIF. The number of training hours for physicians is equal. However, SCEN-training puts more emphasis on the consultation report, whereas LEIF-training primarily emphasizes the ethical framework of end-of-life decisions.
In case of a request for euthanasia, in the Netherlands as well as in Belgium similar consultation services by independent qualified physicians have been developed. In countries where legalising physician-assisted death is being contemplated, the development of such a consultation provision could also be considered in order to safeguard the practice of euthanasia (as it can provide safeguards to adequate performance of euthanasia and assisted suicide).