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
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
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
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.
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).
Objective To explore the relation between the care provided in the final three months of life and the prevalence and types of end of life decisions in Belgium.
Design Two year nationwide retrospective study, 2005-6 (SENTI-MELC study).
Setting Data collection via the sentinel network of general practitioners, an epidemiological surveillance system representative of all general practitioners in Belgium.
Subjects 1690 non-sudden deaths in practices of the sentinel general practitioners.
Main outcome measures Non-sudden deaths of patients (aged >1 year) reported each week. Reported care provided in the final three months of life and the end of life decisions made. Multivariable regression analysis controlled for age, sex, cause, and place of death.
Results Use of specialist multidisciplinary palliative care services was associated with intensified alleviation of symptoms (odds ratio 2.1, 95% confidence interval 1.6 to 2.6), continuous deep sedation forgoing food/fluid (2.9, 1.7 to 4.9), and the total of decisions explicitly intended to shorten life (1.5, 1.1 to 2.1) but not with euthanasia or physician assisted suicide in particular. To a large extent receiving spiritual care was associated with higher frequencies of euthanasia or physician assisted suicide than receiving little spiritual care (18.5, 2.0 to 172.7).
Conclusions End of life decisions that shorten life, including euthanasia or physician assisted suicide, are not related to a lower use of palliative care in Belgium and often occur within the context of multidisciplinary care.
This study compares prevalence and types of medical end-of-life decisions between the Dutch-speaking and French-speaking communities of Belgium. This is the first nationwide study that can make these comparisons and the first measurement after implementation of the euthanasia law (2002).
We performed a mortality follow-back study in 2005–2006. Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian GPs.
Weekly, all GPs reported the medical end-of-life decisions among all non-sudden deaths of patients in their practice. We compared the northern Dutch-speaking (60%) and southern French-speaking communities (40%) controlling for population differences.
We analysed 1690 non-sudden deaths. An end-of-life decision with possible life-shortening effect was made in 50% of patients in the Dutch-speaking community and 41% of patients in the French-speaking community (OR 1.4; 95%CI, 1.2 to 1.8). Continuous deep sedation until death occurred in 8% and 15% respectively (OR 0.5; 95%CI, 0.4 to 0.7). Community differences regarding the prevalence of euthanasia or physician-assisted suicide were not significant.
Community differences were more present among home/care home than among hospital deaths: non-treatment decisions with explicit life-shortening intention were made more often in the Dutch-speaking than in the French-speaking community settings (OR 2.2; 95%CI, 1.2 to 3.9); while continuous deep sedation occurred less often in the Dutch-speaking community settings (OR 0.5; 95%CI, 0.3 to 0.9).
Even though legal and general healthcare systems are the same for the whole country, there are considerable variations between the communities in type and prevalence of certain end-of-life decisions, even after controlling for population differences.
Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates.
Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response.
The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design.
End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined.
We designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality.
In 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the protocol here to inform others, in particular countries with analogue GP surveillance networks, on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses and opportunities of our research is outlined.
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).
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.
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.
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.
Hospital deaths following several hospital admissions or long hospital stays may be indicative of a low quality of dying. Although place of death has been extensively investigated at population level, hospital use in the last months of life and its determinants have been studied less often, especially in Europe and with a general end-of-life patient population. In this study we aim to describe hospital use in the last three months of life in Belgium and identify associated patient, disease and healthcare factors.
We conducted a retrospective registration study (13 weeks in 2004) with the Belgian Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian patient population. All registered non-sudden or expected deaths of patients (aged one year or older) at the GPs' practices were included. Bivariate and regression analyses were performed.
The response rate was 87%. The GPs registered 319 deaths that met inclusion criteria. Sixty percent had been hospitalised at least once in the last three months of life, for a median of 19 days. The percentage of patients hospitalised increased exponentially in the last weeks before death; one fifth was admitted in the final week of life. Seventy-two percent of patients hospitalised at least once in the final three months died in hospital. A palliative treatment goal, death from cardiovascular diseases, the expression of a wish to die in an elderly home and palliative care delivery by the GP were associated with lower hospitalisation odds.
Hospital care plays a large role in the end of patients' lives in Belgium, especially in the final weeks of life. The result is a high rate of hospital deaths, showing the institutionalised nature of dying. Patients' clinical conditions, the expression of preferences and also healthcare characteristics such as being treated as a palliative care patient, seem to be associated with hospital transfers. It is recommended that hospitalisation decisions are only made after careful consideration. Short admissions in the final days of life should be prevented in order to make dying at home more feasible.