Background
In the Netherlands, palliative care is an integral part of regular healthcare. Dutch government policy is based on the idea that palliative care is generalist care and should therefore be provided by any healthcare professionals whenever necessary. As such, palliative care is not a distinct medical specialty as it is in many other countries. Core elements of palliative care, such as basic symptom management and aligning treatment with patients’ goals, should be integrated in care as it is delivered by any healthcare professional. In case of complex problems, such as managing refractory symptoms or negotiating a difficult family meeting, specialist palliative care should be available. Palliative care teams (PCTs) can be consulted by professionals involved in palliative care and can provide such specialist palliative care, either in or outside the hospital. This model of palliative care delivery resembles the model as described by Quill and Abernethy [
1] which distinguishes primary palliative care (which includes skills all clinicians should have) and specialist palliative care (which includes skills for managing more complex and difficult problems) [
1]. In the Netherlands, PCTs are available throughout the country since the start of this century. Currently, 30 regional PCTs are mainly consulted by general practitioners, nursing home physicians and home care nurses, but not by hospital-based care professionals [
2]. In the Netherlands, two thirds of patients with advanced incurable disease are admitted to hospital at some time during their last three months of life [
3]. Of cancer patients older than 65 years, 29 % dies in hospital, a percentage that is low compared to other countries [
4]. Hospital care is usually focused on diagnosis, treatment and discharge, and several studies have reported unmet needs and deficiencies in the quality of care of patients dying in the hospital [
5‐
7]. PCTs in hospitals have been shown to have positive effects on patients’ quality of life and satisfaction with care [
8‐
11]. In order to improve hospital palliative care, the Dutch Federation of Oncological Societies (SONCOS) has stated in their “Multidisciplinary standards for oncological care in the Netherlands” that each hospital should have a PCT by 2017 [
12].
This development underlines the important role PCTs are expected to play in supporting professional caregivers and in providing specialized palliative care.
The aim of this study is to investigate the number of hospitals that currently have a PCT and to study the characteristics of these teams.
Methods
Study design and data collection
In April 2015 we performed a cross-sectional study. An online questionnaire was sent to key persons in palliative care in all 92 general, teaching and university hospitals in the Netherlands, including two oncology centers. The key persons were care professionals who are known to have an important role in the development of palliative care in their hospital. In case of non-response, these persons were contacted after several weeks by mail or phone to remind them of the study and to invite them to fill in the questionnaire.
Population and setting
In total, 74 questionnaires were returned (response 80 %); responses came from general hospitals (n = 43), teaching hospitals (n = 23) university hospitals (n = 7) and one oncology hospital. Non-responding hospitals included both hospitals with and without PCTs.
Questionnaire
The key persons were requested to fill out a 78 item questionnaire (see Additional file
1) which was based on a questionnaire from a former study [
13]. It was pretested by two PCT members. Based upon this test, the wording of some questions was improved. After an introduction and some general questions on the provision of palliative care in their hospital, the questionnaire focused on the PCT, if applicable. Questions were asked about the disciplines that were represented in the PCT, the procedures followed by the team, the number of consultations, team meetings and quality assurance procedures.
Statistical analysis
We analysed the data using SPSS version 20.
Discussion
The awareness of palliative care in Dutch hospitals is increasing. A vast majority of hospitals has an assignment from the board of directors or medical staff to develop palliative care or a palliative care steering committee. The percentage of hospitals with a PCT has risen from 39 % in 2013 [
13] up to 77 % in 2015. In all likelihood, the norms set by the Dutch Federation of Oncological Societies (SONCOS), which state that each hospital should have a PCT by January 2017, contributed to the substantial increase in numbers of teams [
12]. As positive as this increase in number of PCTs may be, the characteristics of the PCTs also show us substantial differences between the teams. Teams that started before 2012 have substantially more referrals than ‘younger’ teams. It is known that the establishment of a PCT takes time. In the literature, many barriers to consultation of PCTs have been described. These include misconceptions that palliative care is only appropriate for patients nearing death or that involving palliative care professionals can be conceived by patients as a sign that there is no hope left [
14,
15]. Because of these misconceptions PCTs are often consulted late in the disease trajectory [
15‐
19].
In studies that show positive effects of PCTs, these teams are often consulted relatively early in the a patient’s disease trajectory and often in the outpatient clinic [
8,
11,
20]. While the percentage of hospitals with palliative care outpatient clinics rose from 11 % in 2013 to 22 % in 2015 [
13], still less than a quarter of hospitals offer their patients this opportunity for early palliative care support.
Besides differences in the number of consultations, there are also differences in the working processes of the teams, in disciplines participating in the teams, in the expertise teams require from their members and in the availability of the team and involvement in care for out-patients. Furthermore, there is no consensus regarding the use of measurement instruments. Non-specialized care professionals in hospitals as well as PCTs use a wide variety of measurement instruments. In this survey, most commonly used instrument by both generalists and specialists in palliative care is the Distress Thermometer, an instrument originally validated as a screening tool for psychological distress, that is now also in some places used to screen patients for referral to a PCT [
21,
22].
In a 1-day observational study in 14 Belgian hospitals, it was found that 9.4 % of all patients admitted to the hospital are in the palliative phase, which was defined as the phase where a patient is suffering from an incurable, progressive, life-threatening disease, without a prospect of remission, stabilization or improvement [
23]. A study by Gardiner et al. in two acute hospitals in the UK showed that 36 % of all hospitalized adult patients were identified as having palliative care needs according to the Gold Standards Framework criteria (criteria that support professionals to identify patients who are nearing the end of life and to assess their needs, symptoms and preferences [
24]), whereas medical staff identified 15.5 % of patients as having palliative care needs [
25]. In our survey we found that the annual number of palliative care consultations as a percentage of the total annual number of hospital admissions, was 0.6 %. This is low compared to other countries, such as the United States where an average rate of 4.4 % was found [
26]. This implies that more patients in hospitals could benefit from specialist palliative care.
Furthermore, the number of labeled hours that members of the PCTs have for their work as an expert palliative care consultant, is very low, especially for physicians. This is in line with a recent report of the Economic Intelligence Unit on the Quality of Death Index. Although the Netherlands are ranked 8
th on the overall score and 2
nd on palliative care and healthcare environment, the score on human resources is relatively low (22
nd). This means that the availability of specialists in palliative care and healthcare professionals with general knowledge of palliative care is low, as is the availability of appropriate training [
27]. This is confirmed by the lack of adequate financing of the PCTs in hospitals in our study.
Dumanovsky et al. conclude that higher staffing levels (full-time equivalents of PCT members per 10.000 admissions) were associated with higher service penetration (the annual number of palliative care consultations as a percentage of the total annual number of hospital admissions). In their study, palliative care programs with the highest staffing levels (≥2.7 FTE per 10.000 admissions) reached a service penetration of 6.5 %. Higher service penetration was associated with shorter time to the initial palliative care consultation [
26].
Strengths and limitations
This nationwide study demonstrates the increasing number of PCTs in the Netherlands. It demonstrates variations between the number of referrals and working procedures of the teams. The results can have implications for the development of new (models for) PCTs. A strength of this study is the relatively high response rate. Among the non-responders were both hospitals with and without PCTs. Therefore we can conclude that this study gives a good overview of current palliative care practices in Dutch hospitals.
A limitation is that our study does not give insight in the quality of palliative care in Dutch hospitals or in the quality of the PCT involvement. From a recent comparison between different countries, using data from 2010, it was found that end-of- life care in the Netherlands is characterized by a relatively low percentage of hospital deaths, a low percentage of intensive care admissions and a low use of chemotherapy in the last 180 days before death [
4]. This suggests that there may be a relatively high awareness among Dutch healthcare professionals of the need to refocus care when the end of life approaches, although no firm conclusions can be drawn based on these data regarding the quality of palliative care in Dutch hospitals. We recommend further studies to monitor the development of these PCTs and to gain more insight in the timing and the quality of palliative care team involvement in Dutch hospitals.
Conclusion
Palliative care in Dutch hospitals is often supported by PCTs. The number of these teams has rapidly increased over the last few years, but there are substantial differences between teams regarding the disciplines represented in the teams, the procedures and the number and timing of referrals. The involvement of PCTs in care for incurably ill patients is relatively limited.
To stimulate the further development and implementation of PCTs in hospitals, we recommend the development of a formalized quality framework with models for (transmural) palliative care team consultation, to improve the quality of palliative care in hospitals. Such a framework, that should be adopted by professional organizations and policymakers, can form the basis for the development of quality criteria and quality assessment of PCTs. The concepts and borders of generalist and specialist palliative care should be discussed and where possible defined, so that criteria can be set regarding the education of all disciplines involved. Furthermore, adequate staffing of the PCTs is necessary to increase the number of PCT consultations.
Acknowledgements
The authors thank the palliative care key persons in the hospitals for filling in the questionnaire.