The self-perceived palliative care barriers and educational needs of clinicians working in hospital primary care teams and referral patterns: lessons learned from a single-center survey and cohort study
Original Article

The self-perceived palliative care barriers and educational needs of clinicians working in hospital primary care teams and referral patterns: lessons learned from a single-center survey and cohort study

Lotte van der Stap1, Ellen J. M. de Nijs1, Marleen Oomes1, Carla C. M. Juffermans1,2, Willeke M. Ravensbergen2, Saskia A. C. Luelmo3, Nanda Horeweg4, Yvette M. van der Linden1,4

1Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, The Netherlands; 2Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands; 3Department of Medical Oncology, Leiden University Medical Center, Leiden, The Netherlands; 4Department of Radiation Oncology, Leiden University Medical Center, Leiden, The Netherlands

Contributions: (I) Conception and design: L van der Stap, EJM de Nijs, N Horeweg, YM van der Linden; (II) Administrative support: L van der Stap, N Horeweg, EJM de Nijs, WM Ravensbergen; (III) Provision of study materials or patients: EJM de Nijs, M Oomes, CCM Juffermans, WM Ravensbergen, SAC Luelmo; (IV) Collection and assembly of data: L van der Stap, EJM de Nijs, M Oomes, CCM Juffermans, WM Ravensbergen, SAC Luelmo; (V) Data analysis and interpretation: L van der Stap, EJM de Nijs, N Horeweg, YM van der Linden; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Lotte van der Stap, MD. Center of Expertise in Palliative Care, Leiden University Medical Center, Albinusdreef 2, PO Box 9600, 2300 RC, Leiden, The Netherlands. Email:

Background: Within the generalist-plus-specialist palliative care model, palliative care is mainly provided by nurses and physicians of hospital primary care teams. Palliative care consultation teams (PCCTs) support these clinicians in adequately caring for patients with advanced illnesses. Our team started in 2012. The aim of this study was to assess the self-perceived barriers, educational needs and awareness of available palliative care support options among our hospital primary care teams. In addition, palliative care referral patterns were evaluated.

Methods: Single-center mixed methods study. Outcomes of two surveys of primary care team clinicians (2012 and 2016) on barriers to palliative care, educational needs and awareness of palliative care support options were compared (chi-square, Mann-Whitney U tests, qualitative analysis). Palliative care referral characteristics were evaluated [2012–2017], including referral timing (survival since referral) (descriptive statistics, Kaplan-Meier methodology). Predictions of survival at referral were analyzed (weighted Kappa).

Results: In 2012 and 2016, the most frequently reported barrier was the late initiation of the palliative care approach. Clinicians reported a need for education on physical symptom management and basic palliative care principles. Awareness of support options increased from 2012 to 2016, including improved familiarity with the PCCT (56% vs. 85%, P<0.001) and positive appraisal of the team (8% vs. 40% gave an ‘excellent’ rating, P<0.001). The use of national symptom management guidelines also improved (23% vs. 53%, P<0.001). Of 1,404 referrals, 86% were for cancer patients. Referrals increased by 28% (mean) per year. Medical oncology clinicians referred most frequently (27%) and increasingly early in the disease trajectory (survival ≥3 months after referral) (P=0.016). Median survival after referral was 0.9 (range, 0–83.3) months. Referring physicians overestimated survival in 44% of patients (kappa 0.36, 95% CI: 0.30–0.42).

Conclusions: Primary care team clinicians persistently reported needing support with basic palliative care skills. PCCTs should continuously focus on educating primary care teams and promoting the use of guidelines. Because physicians tend to overestimate survival and usually referred patients late for specialist palliative care, consultation teams should support primary care teams to identify, treat and refer patients with palliative care needs in a timely manner.

Keywords: Specialist palliative care; hospital; referral; consultation

Submitted Aug 27, 2020. Accepted for publication Nov 25, 2020.

doi: 10.21037/apm-20-1706


Within the generalist-plus-specialist palliative care model (1-3), all clinicians (both nurses and physicians) are expected to provide primary palliative care for patients with advanced illnesses, consisting of managing physical and psychological problems and having conversations about prognosis, treatment goals and life-sustaining treatments (2,3). However, in daily practice, hospital primary care clinicians often received limited education on palliative care and therefore focus mainly on treating the disease (4-8). This may prevent them from adequately caring for their patients, including not recognizing when to integrate a palliative care approach alongside disease-directed treatments and when to involve palliative care specialists (9). Hospital-based palliative care consultation teams (PCCTs) are increasingly available to support primary care teams and to provide specialist palliative care for patients with complex needs, such as refractory symptoms or difficult psychosocial and existential problems. To optimize hospital-based palliative care it is important that PCCTs not only invest in clinical care but also in nonclinical activities to improve the care provided by primary care teams (1,10). When our PCCT started in 2012, efforts were made to design a comprehensive nonclinical strategy. Core components were educational activities in each hospital department, marketing the added value of the PCCT and implementing palliative care support options for primary care teams. These support options included developing hospital-wide palliative care guidelines, promoting existing national symptom management guidelines and introducing the Surprise Question (11). Our PCCT specialists also trained primary care team clinicians to act as ‘palliative care champions’ (12,13). These champions were educated on diverse palliative care subjects four times per year (during 1.5-hour meetings) and served as palliative care ambassadors within their own hospital department, disseminating knowledge when needed.

Until now, studies have focused on identifying factors that facilitate or hinder palliative care referral (9) and collaboration between primary care teams and PCCTs within clinical patient care (14). None have evaluated how PCCTs can best support clinicians within their hospital to improve their primary palliative care skills. Our study aimed to assess the self-perceived barriers and educational needs of our hospital’s primary care team clinicians in order to tailor our nonclinical activities to meet their support needs. In addition, we assessed their awareness of available palliative care support options and evaluated referral patterns.

We present this study in accordance with the Strengthening the Reporting of Observational studies in Epidemiology (STROBE) reporting checklist (available at



The Leiden University Medical Center had 25.634 hospital admissions per year in 2017 and a mean of 504 in-hospital deaths per year between 2014 and 2016. The PCCT was initiated in 2012 and consists of nurses, nurse practitioners and physicians specialized in palliative care. Inpatients and outpatients can be referred by physicians and nurses of primary care teams, and by self-referral of patients and their family members. All referred patients are discussed in weekly multidisciplinary team meetings involving PCCT consultants, clinicians from the patient’s primary care team, social workers, liaison nurses, medical psychologists, pharmacologists, spiritual counsellors, medical oncologists, radiation oncologists and pain specialists.

Data collection

Part A: baseline and follow-up survey on barriers, educational needs and awareness of palliative care support options

Shortly after the start of the PCCT in 2012, a survey was sent by email to all medical and nursing managers of the 26 hospital departments providing patient care. The managers were asked to request a number of nurses and physicians to fill out the survey, serving as department representatives (baseline). In 2016, the survey was sent again (follow-up), with the same request. Surveys were filled out anonymously. The survey was developed by the PCCT consultants who based the content on their experiences with supporting primary care clinicians. Face validity and clarity of questions were assessed by a pilot sample of primary care team hospital nurses and physicians and questions were adjusted according to their feedback. The survey consisted of eight open-ended and 26 multiple-choice questions. An English translation of the full survey is provided in Appendix 1.

In this study we report the outcomes of two open-ended survey questions on self-perceived barriers to palliative care and educational needs: question 1 “which barriers do you experience regarding the treatment and support of patients with palliative care needs?” and question 2 “on which topic(s) regarding palliative care would you like education or training?”. We also report the outcomes of six multiple-choice questions on awareness and use of palliative care support options, such as the PCCT, national palliative care symptom management guidelines, and departmental palliative care champions.

Part B: cohort study

Data on all patients referred to the PCCT from January 2012 to December 2017 were retrospectively collected from the electronic patient files. One physician (LS) and one nurse practitioner (EN) collected the following data: age, sex, primary diagnosis, referring department, referral date, inpatient or outpatient referral, date of death or last contact and disease phase (disease-directed or symptom-directed at time of referral; registered by a PCCT consultant from June 2014 onwards). Primary diagnosis was categorized into cancer, dementia/frailty, neurological disease, heart/vascular disease, respiratory disease, kidney disease, liver disease and other (15). Survival data were updated until February 6, 2020. Observed survival (OS) was defined from referral until death or last contact. To evaluate timing of referral, OS of referred patients was calculated in those departments that referred at least 10% of referrals from 2012 to 2017. We characterized early palliative care (OS ≥3 months), late palliative care (OS ≥2 weeks to <3 months) and care in the dying phase (OS <2 weeks) to evaluate yearly changes in the timing of referrals.

Part C: clinical prediction of survival at referral

From June 2014 onwards, all physicians were asked at referral if they would be surprised if their patient would die within 1 year, 3 months or 2 weeks to assess their ability to prognosticate.

The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study protocol was approved by the institutional ethics board of Leiden University Medical Center (G19.050) and individual consent for this retrospective analysis was waived.

Statistical analysis

Part A: baseline and follow-up survey on barriers, educational needs and awareness of palliative care support options

Answers to the open-ended questions were analyzed qualitatively to identify the topics within respondents’ answers. The frequency of identified topics was then analyzed using descriptive statistics. Coding was done independently by a physician (LS) and nurse practitioner (EN) using pre-established codes, based on the Netherlands Quality Framework for Palliative Care (16) (see Table 1). If the answers did not fit the pre-established codes, inductive coding was done using thematic analysis (17). Disagreements were solved by discussion. The final set of codes was shared with other research team members for consensus, to obtain a definitive set of identified topics. Differences between the 2012 and 2016 outcomes of multiple-choice questions were analyzed using either chi-squared (dichotomous variables) or Mann-Whitney U tests (ordinal variables). Differences were considered statistically significant if P values were <0.05.

Table 1
Table 1 Frequency of identified topics within answers to two open-ended survey questions on self-perceived barriers to palliative care and educational needs (2012 and 2016)
Full table

Part B: cohort study

Referral characteristics were analyzed descriptively. OS was calculated using the Kaplan-Meier method. Yearly changes in referral timing in frequently referring departments were evaluated using the Kruskal-Wallis test.

Part C: clinical prediction of survival at referral

OS and predicted survival were compared using weighted Kappa (18).


Part A: baseline and follow-up survey on barriers, educational needs and awareness of palliative care support options

Respondent characteristics

In 2012, 291 primary care team clinicians filled out the survey, representing 92% of hospital departments (24/26 departments). In 2016, 195 clinicians filled out the survey, representing 96% of hospital departments (25/26 departments) (Table S1).

Open-ended question 1 on self-perceived barriers to palliative care

In 2012, 134 survey respondents (46%) and in 2016, 110 respondents (56%) reported on their self-perceived barriers to caring for patients with palliative care needs. All reported topics with illustrative quotes are listed in Table 1. In both years, the topic most often identified was the late initiation of palliative care (25% in 2012 and 20% in 2016). Respondents’ main concerns were that disease-directed treatment is often continued too long. They also mentioned that patients who might benefit from palliative care are often identified too late. It was noted that physicians place too much focus on disease treatment which means that underlying problems that patients have are often not acknowledged.

In 2012, the second most identified topic was logistical issues, reported by 19% of respondents. Especially mentioned was a lack of time to adequately care for patients with palliative care needs. Respondents also reported insufficient resources, for example not being able to admit patients with complex needs because of bed shortages or not being able to offer patients’ family members a bed to stay the night. In the outpatient clinic, a lack of comfortable chairs or beds to enable outpatients with palliative care needs to rest was mentioned. In 2016, the second most identified topic was insufficient general palliative care knowledge, reported by 14% of respondents, such as knowledge on pain management and when to refrain from life-prolonging treatments.

Open-ended question 2 on self-perceived educational needs

In 2012, 61 survey respondents (21%) and in 2016, 72 respondents (37%) reported on their self-perceived educational needs. All reported topics with illustrative quotes are listed in Table 1. In both years, most often mentioned were educational needs on the management of physical symptoms (30% in 2012; 21% in 2016). Clinicians commented on pain management and management of specific non-pain symptoms, like dyspnea, ileus, nausea, anorexia and restlessness. In both years, respondents also often wanted to be educated on basic palliative principles (20% in 2012; 19% in 2016).

Multiple choice questions on awareness of palliative care support options

Familiarity with the PCCT increased from 56% in 2012 to 85% in 2016 (P<0.001) (Table 2). In 2012, 18% of the respondents consulted the PCCT frequently and this increased to 35% in 2016. Likewise, the number of respondents who rarely or never consulted the PCCT decreased from 56% in 2012 to 32% in 2016 (P<0.001). In 2012, 8% of respondents appraised their experiences with the PCCT as excellent and 71% as good, and this increased to 40% and 49% of respondents in 2016 (P<0.001). Use of national palliative care symptom management guidelines among physicians increased from 37% to 87% (P<0.001). In 2016, 49% of respondents were aware of the presence of a palliative care champion nurse and/or physician within their own department.

Table 2
Table 2 Outcomes of multiple-choice questions of baseline and follow-up surveys on palliative care support options
Full table

Part B: cohort study

Palliative care referral characteristics

From 2012 to 2017, clinicians referred 1,404 patients to the PCCT. Referral, patient and follow-up characteristics are summarized in Table 3. Eighty-six percent of referred patients were primarily diagnosed with cancer, 43% were younger than 65 years and 23% were outpatients. Referrals increased by a mean of 28% per year (Figure 1). The proportion of referrals for non-cancer patients compared to overall referrals per year increased by a mean of 2.7% per year; 14% of referrals were non-cancer patients in 2012 and 18% in 2017.

Table 3
Table 3 Palliative care referrals: patient, referral and follow-up characteristics (2012–2017)
Full table
Figure 1 PCCT referrals 2012–2017. PCCT, palliative care consultation team.

Patients were referred most frequently by clinicians working in medical oncology, radiation oncology, pulmonology, and general surgery (see Figure S1 for referrals per hospital department per year).

Timing of referral

At study closure, 98% of referred patients had died (n=1,373). The median OS since referral was 0.9 (range, 0–83.3) months. When looking at timing of referral, clinicians referred 26% of patients early (OS after referral ≥3 months), 37% late (OS after referral ≥2 weeks and <3 months) and 37% in the dying phase (OS after referral <2 weeks) (Table 3).

Median survival differed between the four main referring departments (medical oncology: median 1.5 months, range 0–54.0 months; radiation oncology: median 3.2 months, range 0–83.3 months; pulmonology: median 0.7 months, range 0–38.0 months; and general surgery: median 0.5 months, range 0–37.9 months). The proportion of early palliative care referrals (OS after referral ≥3 months) increased over time only in referrals made by medical oncology clinicians (P=0.016) (Figure 2).

Figure 2 Timing of referrals to the PCCT for departments that referred >10% of all patients between 2012 and 2017. PCCT, palliative care consultation team.

Part C: clinical prediction of survival at referral

Referring physicians predicted survival in 434 patients. Survival was correctly predicted in 50% of patients and overestimated in 44% (kappa 0.36, 95% CI: 0.30–0.42) (Table 4). Survival predictions were least accurate in patients with an OS of less than 2 weeks.

Table 4
Table 4 Clinical prediction of survival by referring physician compared to OS
Full table


In our study, self-perceived barriers to palliative care among primary care team clinicians were the late initiation of a palliative care approach and a lack of palliative care knowledge within their own team. Respondents reported the need for education mainly in physical symptom management and basic palliative care principles. Both barriers and educational needs were largely similar in the two surveys with 5 years in between despite increased awareness and use of palliative support options and a steady yearly increase of PCCT referrals. This may be due to the high turnover of junior clinicians working in our teaching hospital. In addition, clinicians may not be able to develop routine or build confidence in providing palliative care because they care for patients with advanced illnesses too infrequently. Barriers and educational needs also persisted despite PCCT efforts to target these topics through their nonclinical activities from 2012 onwards. An overview of all our nonclinical activities is provided in Table 5. We based these activities on the 2012 and 2016 survey outcomes and added information from the literature on barriers for PCCT integration (1,10,14,19,49), and on changing clinical behavior (20,30).

Table 5
Table 5 Nonclinical activities of the Leiden University Medical Center PCCT supporting implementation of integrated palliative care
Full table

The identified self-perceived barriers and educational needs are in line with reported topics identified in interview studies among hospital primary care team physicians and nurses (50,51). Although late initiation of palliative care was the most reported barrier in our surveys, only one clinician in 2012 mentioned this as an educational need. This suggests a lack of awareness among clinicians that knowing when to initiate a palliative care approach is a distinctive skill that can be improved through education and support. Moreover, the survey answers reported by respondents regarding the initiation of palliative care suggest that primary care team clinicians are insufficiently aware of integrated palliative care, where palliative care is provided alongside disease-directed treatment (52,53). The traditional approach of starting palliative care only after all disease-directed treatment is complete has been identified as a barrier to initiating palliative care in a timely manner (4) and to collaborating with a PCCT (14,54). Our PCCT focused on teaching primary care clinicians how to identify patients who might benefit from palliative care. For example, to increase their awareness, from 2014 onwards, upon each referral request the referring physician is asked to answer the 1 year, 3 months and 2-week Surprise Question (11). To improve symptom management, the PCCT introduced the Dutch version of the Edmonton Symptom Assessment System (ESAS) (33,55).

Combining referral patterns with the survey outcomes provides directions for how to improve hospital-based palliative care. Evaluation of our referral characteristics confirmed that clinicians tend to seek less PCCT support for non-cancer patients than they do for cancer patients (21,36-41). It is easier to identify palliative care needs in cancer patients because they usually have steady disease progression with a distinct terminal phase. In contrast, patients with organ failure usually decline gradually with acute exacerbations that may or may not lead to death, and death is often seemingly unexpected (53,56-58). Positively, a small increase in referral of non-cancer patients was observed over the years in our hospital, which is in line with a recent evaluation of 88 US PCCTs (39).

Difficulties initiating palliative care are probably related to the overestimation of survival, both in this study and previous evaluations (59-61). In our study, referrers were more likely to overestimate the survival of patients who survived less than 2 weeks after referral. Only a quarter of patients were referred ≥3 months before death. After referral, our patients lived a median of 27 days, which is comparable with other reports (range, 12–44 days) (37,38,40,42-44). Initiating palliative care early (expected survival ≥3 months) is important, since it improves quality of life and survival and reduces in-hospital deaths, emergency room visits, and hospitalizations in the last phase of life (62,63). Positively, our medical oncology clinicians referred an increasing proportion of their patients for early palliative care (OS ≥3 months) over time. This learning curve regarding the timing of referral was only observed in this department, which may be explained by the intensive collaboration between the PCCT and medical oncology clinicians, alongside ample attention in their field for integrated palliative care in general (22,28,49). Additional nonclinical activities to improve PCCT referrals and timing thereof are presented as suggestions in Table 5. The overview of nonclinical activities in Table 5 may help other PCCTs to plan and improve their nonclinical strategies.

Strengths and limitations

Our study combines data on self-perceived palliative care barriers and educational needs of clinicians and referral patterns. This information has allowed us to suggest ways to explain referral patterns and to improve hospital-based palliative care. Although this is a single-center study with a specific organization of palliative care, the identified barriers, educational needs and referral patterns are similar to those reported in previous studies. Thus, other PCCTs may find our outcomes helpful to further integrate palliative care into their hospitals. A limitation is that PCCT members analyzed the qualitative survey data on their own performance, which may be a source of bias. Furthermore, clinicians who filled out the surveys may have had a higher affinity to palliative care than non-responders, which may have affected the survey results (non-response bias). Registration bias may also be present because of the retrospective nature of the referral analysis.


Despite increased awareness and use of available palliative care support options, self-perceived barriers and educational needs of primary care team clinicians persisted after 5 years of clinical and nonclinical PCCT activities. Primary care teams usually referred late for specialist palliative care and tended to overestimate survival at referral.

Therefore, we recommend that PCCTs focus their nonclinical activities on improving general palliative care knowledge among primary care team clinicians. PCCTs should especially support hospital clinicians to identify patients who might benefit from palliative care in a timely manner.


The authors want to thank Ilse Hermsen, Mary-Joanne Verhoef, Manon Boddaert and all members of the Leiden University Medical Center Palliative Care Consultation Team.

Funding: None.


Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at

Data Sharing Statement: Available at

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the institutional ethics committee of Leiden University Medical Center (G19.050) and individual consent for this retrospective analysis was waived.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See:


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Cite this article as: van der Stap L, de Nijs EJM, Oomes M, Juffermans CCM, Ravensbergen WM, Luelmo SAC, Horeweg N, van der Linden YM. The self-perceived palliative care barriers and educational needs of clinicians working in hospital primary care teams and referral patterns: lessons learned from a single-center survey and cohort study. Ann Palliat Med 2021;10(3):2620-2637. doi: 10.21037/apm-20-1706