Development of specialist palliative care in Dutch hospitals between 2014 and 2020: a repeated survey

Summary

This study assessed the development of hospital-wide integration of specialist PC in Dutch hospitals between 2014 and 2020. Over the years, the hospitals demonstrated an increase in the level of hospital-wide integration of specialist PC, including a significant increase in the number of dedicated PC outpatient clinics. The results also indicate an increased reach of the SPCTs, with a significant increase in the number of inpatient referrals and in the PC referral rate. There was also a significant improvement in collaboration between primary and hospital care, in terms of increased possibilities for consultation with patients at home, and an increased frequency of standard consultations with the GP or nursing home physician before discharge from the hospital.

Contribution to the wider literature

Several findings deserve particular attention. First, we observed a significant increase in the number of dedicated PC outpatient clinics over the years. International research on this topic is limited. Based on the results of the 2017 survey, Boddaert et al. showed that the presence of an outpatient clinic was associated with a higher number of referrals to SPCTs [16]. They also found that SPCTs with a high PC referral rate had earlier timing of referrals. Our study revealed that the number of hospitals with early referrals to SPCTs remained notably low, at 2% in both 2017 and 2020. The establishment of a dedicated PC outpatient clinic in a hospital could lead to earlier access to SPCTs [16]. Furthermore, renaming PC as “supportive care” may also encourage early referral to outpatient clinics [21]. Additionally, studies focussing on outpatients have demonstrated that early referral to PC significantly improves satisfaction with care and quality of life [3, 5].

Secondly, our results showed a significantly increased possibility for consultations with patients at home, indicating improved collaboration between primary and hospital care. This community-based specialist PC is known to improve patients’ quality of life and reduce the use of secondary services, such as hospitalizations [22]. Moreover, Raijmakers et al. demonstrated that collaboration between healthcare professionals to ensure continuity of care is associated with dying in the preferred place, an important quality indicator of PC [23]. To improve the collaboration between primary and hospital care, the Integrated Healthcare Agreement (IZA) has been established in the Netherlands [24], which advocates greater regional collaboration to ensure sustainable health care in the future. Adequate collaboration between primary and hospital care for patients with PC needs has the potential to improve the quality of PC at the same or lower cost, as demonstrated by the TAPA$ study [25]. Despite these advantages of collaboration, a significant part of the SPCTs do not collaborate with primary care. Reasons for the lack of collaboration between primary and hospitals include lack of appropriate funding and governance [26].

Third, the PC referral rate, calculated by dividing the number of inpatient referrals by the total number of annual hospital admissions, increased significantly from a median referral rate of 0.4 in 2014 to 0.6 in 2017 and 1.1 in 2020. This implies that in 2020, half of the SPCTs were involved in 1.1% or more of total annual hospital admissions. This increasing rate suggests that the reach of SPCTs is improving. However, their reach remains low, especially compared to other countries such as the US, where a PC referral rate of 5.6% was reported in 2018 [14]. There is currently no gold standard for the PC referral rate. A flashmob study assessed the PC needs of inpatients in 48 Dutch hospitals on a single day by asking nurses and doctors the surprise question, “Would you be surprised if this patient died within the next 12 months?” [27]. This study reported that about one third of hospitalized patients might need PC. This rate is similar to that found in other countries (19-36%) [28,29,30]. The flashmob study also showed that SPCTs were involved in 2.2% of hospitalized patients and that their involvement would be desirable for an additional 2.1% according to involved healthcare professionals, giving a total of 4.3% of patients [27]. This rate could serve as a desirable target value for PC referral. Given the higher potential of the PC referral rate, it is crucial to ensure that teams are appropriately staffed to improve availability [16].

Strengths and limitations

This is the first study to examine the development of hospital-wide integration of specialist PC and SPCTs in Dutch hospitals over time. A consistent set of indicators across all three surveys was used to ensure a reliable comparison over the years. Furthermore, all three cross-sectional surveys achieved a high response rate, indicating that our findings are likely to be generalizable to all Dutch hospitals. However, several limitations should be considered. First, the data were self-reported by members of the hospital SPCTs, potentially introducing reporting bias due to underreporting specific information and the tendency to give socially desirable answers. In addition, while maintaining a set of core questions, each questionnaire was carefully updated and therefore slightly different from the previous version. This may have affected comparability. To address this issue, we primarily focused on the core questions, ensuring consistency and reliable comparisons over time. Furthermore, to assess the level of hospital-wide integration of specialist PC, an international set of 13 indicators was adapted into six indicators suitable for the Dutch setting. Therefore, not all aspects of integration were covered. For future studies, it may be useful to use all 13 integration indicators and to validate them for different care systems [20]. Moreover, our study focused mainly on the organizational aspects of care and did not provide information on the quality of the care provided by the SPCTs. Other study designs are needed to examine the quality care provided.

Practical implications

We recommend that hospitals encourage the establishment of PC outpatient clinics, in order to facilitate more and earlier referrals from different departments to the SPCTs. In this way, SPCTs can improve their availability to patients receiving care at home, thereby extending the reach of PC services. Recent improvements in palliative care reimbursement have increased access to funding, though further development is still needed [31]. Furthermore, hospitals should consider collecting data to gain valuable insights into PC referral rates. This could enable continuous learning and informed decision-making, ultimately improving the reach of SPCTs. Key to this process is the development of policies and conducting more research on desirable targets for PC referral rates. Moreover, it is essential to further strengthen the collaboration between primary and hospital care given the expected increase in the demand for PC. To achieve this, SPCTs need to increase their availability for consultations with primary care providers of patients receiving care at home [32]. As the care landscape evolves, this collaboration becomes increasingly important, ensuring it effectively addresses the dynamic needs of our healthcare system.

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