Treatment goal in the last 3 months of life (N = 892). Missing values for the second to third month before death, n = 70 (8%); for the second to fourth week before death, n = 54 (6%); for the last week of life, n = 34 (4%). The values are expressed as percentage (binomial 95% confidence interval [Clopper-Pearson]). Multiple responses were possible per period. *An additional palliative treatment goal was also registered for 15 patients. †An additional palliative treatment goal was also registered for 6 patients.
Treatments in the last 3 months of life (N = 892). Number of cases “unknown” by physician: for the second to third month before death, n = 24 (3%); for the second to fourth week before death, n = 49 (5%); and for the last week of life, n = 90 (10%). The values are expressed as percentage (binomial 95% confidence interval [Clopper-Pearson]). Differences between time frames were calculated using the Cochran Q test for K-related samples. All P values were significant (P < .001).
Van den Block L, Deschepper R, Bossuyt N, Drieskens K, Bauwens S, Van Casteren V, Deliens L. Care for Patients in the Last Months of LifeThe Belgian Sentinel Network Monitoring End-of-Life Care Study. Arch Intern Med. 2008;168(16):1747-1754. doi:10.1001/archinte.168.16.1747
Copyright 2008 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2008
Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life care (physical, psychosocial, or spiritual) in a representative sample of dying persons in Belgium.
We performed a mortality follow-back study in 2005 (Sentinel Network Monitoring End-of-Life Care [SENTI-MELC] study). Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian general practitioners. Each week, all 205 participating practices reported all deaths of patients in their practice and registered the care provided in the final 3 months of life. Sudden, unexpected deaths were excluded.
We studied 892 deaths. General practitioners, nurses or geriatric caregivers, and informal caregivers were often involved in end-of-life care in 76%, 78%, and 75% of cases, respectively. Specialist multidisciplinary palliative care services were provided in 41% of cases. Two to 3 months before death, a palliative treatment goal was in place for 37% of patients, increasing to 81% in the last week of life (P < .001). Two to 3 months before death, physical, psychosocial, and spiritual care was provided to a (very) large extent to 84%, 36%, and 10% of patients, respectively. These numbers increased to 90%, 54%, and 25%, respectively, in the last week of life (P < .001).
In Belgium, most dying patients have both formal and informal caregivers. Provision of specialist palliative care is far less frequent. A transition from cure to palliation often occurs late in the dying process and sometimes not at all. Psychosocial and spiritual care is delivered considerably less frequently than physical care.
End-of-life care has become an issue of great clinical and public health importance. Developments contributing to this issue are the growing number of elderly people, the increasingly chronic nature of dying, and the growing recognition that end-of-life care is less than optimal in many countries.1- 3 However, there is a lack of population-based and nationwide data evaluating and monitoring the care that patients are receiving in the final months of life on a societal level.3,4 From the analysis of mortality statistics based on official death certification, we have learned how many people die, at what age, from what causes, and where,5 but no such systematic population-based data are being gathered concerning the (quality of) end-of-life care provision.1- 4
Involvement of caregivers, the goal of medical treatment at the end of life, and the content or type of care in the final months preceding death can be important process parameters of quality of end-of-life care. Frameworks describing the concerns of dying people incorporate the importance of dying in a familiar environment surrounded by loved ones.1- 3,6 Formal and informal primary caregivers as well as specialist multidisciplinary palliative care services can play an important role.5,7- 9 Furthermore, according to the World Health Organization (WHO), medical treatment at the end of life should be directed at comfort or palliation, while curative or life-prolonging treatment goals, in the absence of a palliative care approach, are to be avoided. The WHO promotes palliative care as the preferred approach to end-of-life care, defined as an approach to improving the quality of life of patients and their families who are facing life-threatening illness, through treatment of pain and other physical, psychosocial, and spiritual problems.1,7 The WHO further describes the content of palliative care as holistic, ie, integrating the psychological and spiritual aspects of patient care, and advocates that palliative care should be applicable early in the course of life-threatening illness, for all patients, in any setting.1,7
Unfortunately, empirical studies evaluating these aspects of end-of-life care on a nationwide and population-based level are lacking. Previous studies have been restricted to specific patient populations (such as elderly or cancer patients) or to specific settings (such as hospices, nursing homes, or hospitals). Also, they often focus on a specific aspect of end-of-life care provision, eg, a specific care service (hospice care) or treatment (chemotherapy or tube feeding), or are limited to physical care provision only.9- 16
In this nationwide study, we aimed to provide a current state of affairs on end-of-life care provision in Belgium for a representative sample of dying persons. Because general practice is highly accessible for all patients in Belgium (eg, 95% of the population, including care home residents, have a regular general practitioner [GP]),17 we used a national representative network of GPs.
Research questions were as follows:
To what extent are caregivers involved in patient care in the last 3 months of life, including specialist multidisciplinary palliative care services?
What are the main goals of medical treatment in these last months of life—cure, prolonging life, or palliative care—and do they change when the patient is approaching death?
What is the importance of physical, psychosocial, and spiritual care in these last months of life, and does the importance change when the patient is approaching death?
Which patient and health care characteristics are associated with involvement of caregivers, goals of treatments, and content of end-of-life care?
To measure end-of-life care irrespective of setting or disease, we collaborated with the existing nationwide Belgian Sentinel Network of General Practitioners. This network, operational since 1979, has proved to be a reliable surveillance system for a wide variety of health-related epidemiological data.18,19 In 2005, the network comprised 181 regularly participating general practices (consisting of 205 GPs), which are representative of all 10 578 Belgian GPs in terms of age, sex, and region and cover 1.75% of the total Belgian patient population.18 The characteristics of the GPs have been published elsewhere.20
In 2005, this sentinel network participated in the Sentinel Network Monitoring End-of-Life Care (SENTI-MELC) study, a mortality follow-back study on monitoring end-of-life care. Each week, the GPs from the sentinel network registered all deaths of patients in their practice who were older than 1 year (certified deaths and deaths of which they were informed afterward). They registered each death immediately after being informed, using a standardized form.
To focus this study on care delivered in the context of life-threatening illness, we studied the final 3 months of life of all nonsudden deaths, excluding all deaths that had occurred “suddenly and totally unexpectedly.”21- 23 In a previous pilot study, feasibility and power estimations were made.24 A detailed description of the Sentinel Network Monitoring End-of-Life Care studies' methods and the first set of results have been reported previously.25,26 Anonymity of patient and physician was preserved. The study protocol was approved by the ethical review board of Brussels University Hospital.
The first part of the registration form surveyed date of birth and death, sex, underlying cause of death (International Statistical Classification of Diseases, 10th Revision, codes), postal code of habitual residence, estimated financial or material status, whether or not the patient had a fixed partner at time of death, level of education, and place of death of all registered patients. For patients who had died nonsuddenly, GPs filled in a second part that retrospectively surveyed care in the final 3 months of life:
Formal and informal caregivers' involvement during the last 3 months of life (not, sometimes, or often involved).
Whether specialist multidisciplinary palliative care services were involved. (In Belgium, these services can include a home care team, a care home team [ie, a team that operates in nursing homes and homes for the elderly], a mobile hospital team, an inpatient palliative care unit, or palliative day care.)
All places of care in the last 3 months of life and time spent in each place (in days).
Main goal of medical treatment as judged by the GP, in the last week, second to fourth week, and second to third month before death, respectively, via:
A generic question, “What was the main goal of this patient's treatment?” (options: cure, prolonging life, or comfort/palliation).
An inventory of specific treatments (potentially life-prolonging treatments: chemotherapy/radiotherapy, artificial food/fluid administration, blood transfusion, artificial respiration, cardiopulmonary resuscitation, dialysis, antibiotics, and vasopressors; palliative treatments: specific palliative medications, materials for comfort care [eg, materials for incontinence or wound/stoma care], and general comfort aid [eg, mattresses, hospital bed]).12,27,28
Content of end-of-life care in the last week, second to fourth week, and second to third month, respectively, before death (the extent to which patient care delivered by the GP or other caregivers was directed at treatment/care for physical problems, psychosocial care, and/or spiritual care, ie, existential, religious). These 3 palliative care domains (WHO)7 were judged on a 5-point Likert scale (1, not provided or provided to a very small extent; 5, provided to a very large extent).
Because Belgium consists of 3 regions in which Dutch (Flanders) or French (Wallonia) or both languages (Brussels capital region) are spoken, the instrument was first developed in Dutch and then translated into French via forward-backward translation. It was tested and slightly adapted after the pilot study.24 Several control measures were used to ensure data quality, such as automatic follow-up to prevent missing data for key variables, data entry with consistency, range, and skip checks.
The analyses were performed using StatXact 6 (Cytel Studio, Cambridge, Massachusetts) and SPSS 14.0 (SPPS Inc, Chicago, Illinois). We calculated binominal 95% confidence intervals (CIs) (exact method) for all outcome measures. For the potentially life-prolonging and palliative treatments, we calculated an aggregated sum score and identified the percentage of patients receiving 1 or more treatments. Differences between time frames were calculated using the Friedman or Cochran Q test for K-related samples. For content of care, we also calculated differences between physical, psychosocial, and spiritual care using the Friedman test, and mean scores (95% CIs) to obtain aggregate measures. We performed multivariate logistic regression to explore characteristics associated with the outcome measures, which were dichotomized for this purpose.
The GPs reported 1385 deaths in a 1-year period in 2005. Thirty-four percent of the deaths were sudden and totally unexpected. Twenty-one nonsudden deaths were not included because of too much missing data. Therefore, the results are based on 892 nonsudden deaths (Table 1). We compared the nonsudden deaths in Flanders (n = 533) with the nonsudden deaths identified in another study, which were representative of all deaths in the same part of the country (n = 2128), in terms of age, sex, and place of death of the deceased patients.21 There were no significant differences in these characteristics between studies (binomial 95% CI, exact method). No comparison data were available for the French-speaking part of Belgium (40% of the population).
Table 2 shows that GPs, nurses/geriatric caregivers, and informal caregivers were “often” involved in the last 3 months of life in 76%, 78%, and 75% of patients, respectively; spiritual caregivers were involved in 4%. The presence of spiritual caregivers was unknown by the GP in 34% of cases. Specialist multidisciplinary palliative care in general was involved in 40.6% of cases (95% CI, 37.3%-44.0%): 61.3% of cancer deaths and 25.3% of noncancer deaths (data not shown). More specifically, palliative homecare was involved in 15.6% of all deaths (ie, 23.1% of patients who resided at home for at least 1 day in the last 3 months of life), palliative nursing home teams in 11.5% (30.8% of patients in a care home for at least 1 day), palliative care units in 13.1%, and mobile hospital teams in 7.4% (11% of patients who were hospitalized in the last 3 months of life). One patient in our sample used palliative day care.
The number of patients receiving treatment aimed at comfort or palliation increased as the patients got closer to death: from 37% 2 to 3 months before death to 81% in the last week of life (Figure 1). Treatment goal was aimed at prolonging life for 44% of patients 2 to 3 months before death and at cure for 25%. Both decreased to one-tenth in the last week of life. The percentage of patients receiving palliative treatment(s) increased as the patients got closer to death (Figure 2): from 47% of all patients 2 to 3 months before death to 82% in the last week of life. Palliative treatment was initiated in the last week of life for 21% of all patients. Overall, 18% of patients did not receive any palliative treatment during the last 3 months of life.
The percentage of patients receiving 1 or more potentially life-prolonging treatment increased as the patients got closer to death: from 31% to 54%. Some patients received up to 7 different life-prolonging treatments. One or more of these treatments began in the last week of life in 19% of all cases. Overall, 31% of patients did not receive such treatment in the last 3 months of life. We obtained missing data for all treatments in the last week of life in 10% of cases (95% involved hospital deaths).
Table 3 shows that 84% of patients received care for physical problems to a (very) large extent 2 to 3 months before death, increasing to 90% in the last week of life (P < .001). Two to 3 months before death, psychosocial and spiritual care was provided to a (very) large extent in 36% and 10% of cases, respectively, increasing to 54% and 25% in the last week of life (P < .001). For one-fifth and one-third of patients, respectively, GPs did not score psychosocial or spiritual care intensity. Regarding spiritual care in the last week of life, 66% of cases with missing data involved patients who died in the hospital.
Table 4 shows the results of 11 logistic regression analyses in which the characteristics associated with caregivers' involvement, treatment goals, and content of care were studied. The most consistent and strongest determinants across all multivariate models were cause of death, place of death, and region within Belgium. Patients with cancer had higher chances of receiving care from clinical specialists, informal caregivers, occupational therapists/speech therapists/physiotherapists, and multidisciplinary palliative care services than patients dying of other diseases. They also were more likely to receive psychosocial or spiritual care and treatment aimed at comfort or palliation. Potentially life-prolonging treatments were more often given to noncancer patients. Compared with dying at home, dying in a hospital was related to more care from clinical specialists and more life-prolonging treatments but to less GP or informal care and less care aimed at comfort, palliation, or psychosocial issues. Concerning the region, patients residing in Flanders had higher chances of receiving care from nurses, spiritual caregivers, and occupational therapists, speech therapists, or physiotherapists and of receiving treatment aimed at palliation or comfort, as well as lower chances of receiving life-prolonging treatments than patients in Wallonia.
Patient age was a consistent but less strong determinant. The younger the patient, the lower the odds of receiving GP care and care from informal caregivers but the higher the odds of receiving specialist palliative care, care from specialists, and potentially life-prolonging treatments.
To our knowledge, this is the first study describing caregivers, treatment goals, and content of end-of-life care on a nationwide and population-based level. We used an established representative GP surveillance network with a long history of registration research18,20 to identify a representative sample of dying patients in Belgium. Also, by excluding sudden, unexpected deaths and focusing on the last 3 months of life, we were able to study the care delivered in the terminal phase.22,23,29 We found a percentage of sudden deaths comparable to that reported in previous nationwide studies.21 Finally, contrary to other retrospective designs, we limited recall bias via weekly registrations, leaving little time between death and registration.21,23
This study also has limitations. Reports were limited to the perceptions of GPs. For patients staying in the hospital, some data may have been missed, eg, specific treatments received in last week of life. Treatments that are part of routine clinical practice in hospitals or are not routinely reported to GPs probably have the highest chance of being missed. Also, some questions appeared especially difficult for GPs to judge; eg, data on spiritual care provision in the last week of life was missing for 1 in 3 patients. The number of missing data was high partly because patients stayed in hospitals but also partly because of other, unknown reasons. Clearly, GPs are sometimes not aware of such nonphysical care provision. Furthermore, a possible recall bias due to the retrospective design cannot be excluded. Finally, the registration mainly concerned care processes; hence, results can serve only as indicators or red flags. Quality-of-care outcomes, eg, symptoms and needs, were not measured but would have made it possible to judge individual appropriateness of care.
The results of our study show that dying patients often have informal and formal caregivers (GPs, nurses, and geriatric caregivers) in the final months of life, reflecting their important role in end-of-life care. Provision of specialist multidisciplinary palliative care services is limited to 41% of all nonsudden deaths: 61% and 25% of cancer and noncancer deaths, respectively. Although these Belgian figures are difficult to compare with figures from other studies because of different study designs and estimation methods, the figures on involvement of palliative care services found in other European countries and the United States are generally lower than in Belgium.9,14- 16 A recent US study reported that 28.6% of patients older than 65 years had access to hospice services and hospice care.15 In the United Kingdom, access to specialist palliative care services is estimated to be higher but restricted to patients with cancer (90%-91% of patients receiving such care had cancer).16 The difference might be explained by variations in health care organization (eg, reimbursement policy) or in referral criteria. Compared with other European countries, Belgium has a high ratio of inpatient palliative care beds.30 There are low financial thresholds for all patients concerning all types of palliative care. Specialist services are distributed evenly over the country and are available free of charge.30 Also, Belgian law (2002) makes palliative care a basic right for all patients near death. However, even then, our study shows that less than half of patients receive this type of care. This relatively low number can be explained by a combination of factors. Traditionally, physicians are trained to save and prolong life, and new technological possibilities may support them in continuing a life-prolonging approach. Referral to multidisciplinary palliative care might be based on prognosis estimations, which has proved difficult, rather than on needs for comfort care. On a societal level, the subject of death is still frequently taboo, and palliative care options might not be well known by the general public. Also, structural and financial barriers to palliative care may play a role.9 However, further research is needed to identify the most influential factors.
Results do show that for many dying patients general medical treatment is no longer aimed at cure at the very end of life; instead, it changes to palliation when death approaches, which might be an indication of a high quality of care.1,2,7,9 However, for a significant minority of patients (one-fifth), a palliative treatment goal is entirely lacking at the time of death. Also, a transition to palliative treatment goals often occurs relatively late: not before the last month of life for two-thirds of patients. The absence or late onset of a palliative care approach is generally associated with poor quality end-of-life care.1,2,7,9 Furthermore, many patients receive potentially life-prolonging treatments until death (more than half of patients in the last week of life). Continuation of procedures, such as artificial food and fluid administration, is considered burdensome and possibly futile, especially if such procedures are begun in older patients in the last week of life,11,12 which was the case for several patients in this study. If we also take into consideration the missing data for this question, it is even possible that we underestimated the number of potentially life-prolonging treatments, since missing cases mainly concerned deaths in the hospital, where such treatments were provided more often than in other settings.
Another key finding is that even though most patients receive physical care at the end of life, and often there is an increase in nonphysical care closer to the time of death, psychosocial and spiritual care is often not provided, or at least not as far as the GP is aware. Because data were missing for a substantial number of cases, nonphysical care might have been underreported. However, even then, such care would still be provided to a relatively small extent compared with care for physical problems. Also, although we did not measure patients' individual needs for this type of care, the results might be indicative of a lower quality of care, because these domains have been identified by patients and families as critical in achieving a good death, and because palliative care philosophy has promoted a holistic approach to care.2,7 This finding confirms results from other small, qualitative studies or studies in specific settings, suggesting a large gap between patients' nonphysical needs and the actual care provided at the end of life.1,6 However, more in-depth insight into these care components requires additional direct monitoring of patients or their significant others.
Not all of these findings apply equally to all patients. Patients with cancer have more access to specialist palliative care than patients dying of other diseases, which confirms the hypothesis deduced from other studies; ie, most patients using such services have cancer.2,9,16 Patients with cancer also have substantially higher odds of having palliative treatment goals and psychosocial or spiritual care. Although research has shown that patients with chronic noncancer diseases, such as cardiovascular and respiratory diseases or dementia, have many palliative needs and nonphysical problems, a palliative approach is not always integrated in the care of these patients.2,9 Differences in disease trajectories can probably explain this large discrepancy. Predicting the timing of death is much more difficult among noncancer patients; therefore, the moment to switch to palliative goals is less obvious.22 However, the palliative needs of these patients are just as pressing as those of patients with cancer.9
We also found a small effect of age on end-of-life care provision. Younger patients received more potentially life-prolonging treatments, which suggests a stronger emphasis on saving life in younger patients than in geriatric patients. Specialist palliative care was also more often accessed by younger patients, which confirms other literature advocating better palliative care for older people.2
Furthermore, we found a large regional difference between northern Flanders and southern Wallonia, which could not be explained by individual patient characteristics or differences in urbanization. In Wallonia, patients were less likely to receive spiritual care and have palliative treatment goals but more likely to receive potentially life-prolonging treatments than in Flanders. Belgium is a federal state in which health care policies are developed at national and regional levels. Health care services are equally available to all patients, but regional differences in medical culture and the way services are used have been identified.17 Palliative care policy is increasingly developed at the regional level. These sociocultural and policy differences appear to have an important impact on medical practice. Future research is necessary to explain this regional variation more fully.
In conclusion, although in recent decades end-of-life care has become increasingly important and palliative care has been promoted widely,1,2 our findings suggest that the principles of palliative care are not an integral part of end-of-life care for all patients in Belgium. To provide palliative care for all, a public health policy has to be developed that will further implement palliative care principles in all care settings, for all types of patients, and across all regions within the country.
Correspondence: Lieve Van den Block, PhD, End-of-Life Care Research Group, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussels, Belgium (firstname.lastname@example.org).
Accepted for Publication: December 3, 2007.
Author Contributions: Dr Van den Block had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Study conception and design: Van den Block, Drieskens, Bauwens, Van Casteren, and Deliens. Acquisition of data: Van den Block, Deschepper, Bossuyt, Drieskens, and Van Casteren. Analysis and interpretation of data: Van den Block, Bossuyt, Van Casteren, and Deliens. Drafting of the manuscript: Van den Block. Critical revision of the manuscript for important intellectual content: Van den Block, Deschepper, Bossuyt, Drieskens, Bauwens, Van Casteren, and Deliens. Statistical analysis: Van den Block. Obtained funding: Van den Block, Van Casteren, and Deliens. Administrative, technical and material support: Van den Block, Deschepper, Bossuyt, Drieskens, Bauwens, Van Casteren, and Deliens. Study supervision: Van den Block, Deschepper, Van Casteren, and Deliens.
Financial Disclosure: None reported.
Funding/Support: This study was supported in part by a student grant from the Fund for Scientific Research, Flanders (Dr Van den Block); the Research Council of the Vrije Universiteit Brussel (project GOA27 2003-2007); the Institute for the Promotion of Innovation by Science and Technology, Flanders, as a Strategic Basic Research project (contract SBO IWT 050158) (2006-2010), as part of the Sentinel Network Monitoring End-of-Life Care study; and the Flemish and Walloon Ministry of Welfare, Public Health, and Family. The Belgian Sentinel Network of GPs is supported by the Flemish and Walloon Ministry of Welfare, Public Health, and Family.
Role of the Sponsor: The sponsors had no role in the design and conduct of the study; in the collection, management, analysis, and interpretation of the data; or in the preparation, review, and approval of the manuscript.
Additional Contributions: We thank all participating sentinel GPs for providing data for this study and Rita De Boodt of the Flemish Ministry of Welfare, Public Health, and Family for categorizing the cause of death into International Statistical Classification of Diseases, 10th Revision, codes. We also acknowledge the helpful comments of Jane Ruthven (English editing), Johan Bilsen, Cindy De Gendt, Els Inghelbrecht, and Johan Vanoverloop (data cleaning and statistical analyses).