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Abstract
Objectives The purpose of the study was to investigate the collaboration between primary care and palliative care physicians, which is key to providing comprehensive care, and to identify potential difficulties and needs in referring patients to palliative care.
Methods The study was conducted as an online survey, available to primary care and palliative care physicians. The data collected during the survey were used to compare perceptions of different specialty physicians’ perspectives on various aspects regarding palliative care.
Results The results of the study showed significant differences in the assessment of the palliative care services availability (73% of primary care physicians rate it poorly comparing to high rating of 60% by palliative care specialists), as well as disparities between the declarations regarding the criteria used to decide on referral to palliative care (achieving the best quality of life) and the actual referral of patients (primary care physicians are third on the list of specialists referring patients to palliative care). Despite the need for adequate cooperation between family physicians and palliative care physicians, some difficulties were identified, such as primary care physicians’ lack of knowledge of the patient palliative care referral criteria, and financial as well as personnel and palliative care facilities’ limitations, were identified.
Conclusions The study confirms the need for better cooperation between primary care physicians and palliative care specialists in Poland. It suggests that educating primary care physicians about palliative care referral criteria can improve the patient referrals accuracy.
- education and training
- home care
- hospice care
- prognosis
- service evaluation
- transitional care
Data availability statement
Authors provide data availability per the ScholarOne submission site.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Proper collaboration between primary care physicians and palliative care specialists is essential to provide comprehensive care to palliative care requiring patients.
Challenges in providing palliative care in primary care settings include difficulties in coordination, lack of defined roles, insufficient palliative care knowledge and skills.
For many family physicians, choosing the right time to refer a patient for specialised care is difficult.
WHAT THIS STUDY ADDS
The perspectives of both primary care and palliative care physicians on access to palliative care, referral criteria and collaboration barriers.
Evidence of disparity between declarations regarding criteria used to decide on referral to palliative care and the actual referral of patients.
Differences in availability of palliative care services assessment by primary care physicians and palliative care physicians.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The study emphasises the importance of enhancing cooperation between primary care and palliative care physicians to ensure better access to palliative care for patients.
Policymakers should address the palliative care availability barriers and improve the coordination and communication between primary care and palliative care.
Referral criteria for palliative care should be clearly defined and communicated to primary care physicians to optimise patient outcomes.
Introduction
According to the definition adopted by the Polish Society of Palliative Medicine in 2021 (closest to the new (2020) WHO definition), palliative care is the care for a person with a life-threatening or severely life-limiting illness. Such illness requires treatment of physical and mental symptoms resulting from it or its treatment, providing support in social and spiritual needs, culture and sexuality areas. The aim is to reduce suffering and optimise the person and their relatives’ quality of life, regardless of the disease activity and disease-modifying treatment, at all stages of the disease, and for the next of kin after the patient’s death.1
To provide comprehensive care at this stage, it becomes necessary for general practitioners (GPs) and palliative care specialists to work together. The benefits of care provided this way mainly affect patients and their families by highest possible quality of life, symptom control and education.2 3 Mutual cooperation undoubtedly also provides an opportunity for primary care physicians to increase their competence in this area and make appropriate decisions.4 High-quality services provided by GPs for patients who do not require ongoing specialist care can also relieve the burden on palliative care providers, and allow them to aim their actions towards patients with the greatest needs.
There are many studies available in the literature on the appropriate collaboration management between primary care providers and palliative care physicians, based on which it is possible to distinguish optimal collaboration factors, such as good communication between providers, clearly defined roles and responsibilities, joint learning and education opportunities, as well as adequate and timely access to specialist palliative and coordinated care.5–8
A number of studies point to the numerous difficulties primary care physicians face when caring for patients with advanced disease. These difficulties can apply to any stage of a patient’s care—from the diagnosis of a qualifying illness to the palliative care services, through appropriate therapy, communication and support of the patient and his or her relatives, to referral for further specialised care. Lack of coordination of care, lack of clearly defined roles and responsibilities between GPs and specialist teams in palliative care6 together with insufficient knowledge and skills in the field of palliative care often becomes a problem.7 The lack of support from a specialised team for primary care physicians caring for patients with terminal illnesses also seems important.8
For many family physicians, it also proves difficult to select the right time to refer a patient for specialised care. Particularly, literature reports clearly emphasise the importance of early referral of patients who require it as well as the impact of providing appropriate care on patients’ health outcomes9 and their comfort of life.10 From the patients' perspective, it is also of great importance in terms of predicting the last place of care and place of death of palliative care patients covered.11 From the patients’ perspective, it is also of great importance in terms of predicting the final care and death place of palliative care covered patients.
Poland, as a country with a highly developed palliative care network,12 is suitable as a model to test cooperation between palliative care medicine and family medicine in practice. The aim of this study was to examine the state of cooperation between GPs and palliative care specialists and the validation of it, as well as answering the question of how cooperation can be done and what would be its outcome.
Methods
Study design and settings
Two questionnaires were developed in the form of an e-survey available to physicians working in the primary healthcare13 and, separately for palliative care specialists.14 Both studies were a voluntary, anonymous Computer-Assisted Web Interview (CAWI) surveys. The Checklist for Reporting Results of Internet E-Surveys (CHERRIES) was used to reporting.15 The surveys contained original questions. The primary healthcare physicians’ survey was divided into a section collecting demographic data (5 questions) and employment information and a content section (17 questions). The survey for palliative care physicians16 consisted of demographic questions (3) and the technical portion (17 questions). Participants provided informed consent at the beginning of data collection.
The research problem was formulated in the course of the authors’ work and review of the literature and factual reports on the cooperation of family physicians and palliative care physicians. The survey used questions with answer suggestions, open-end questions and questions using the Likert scale.
For the survey, the combination of the following tools was used: on-line data collection platforms typeform.com, Google Analytics web analytics system and xls file data collection system, that is, Google Docs.
Based on the Daniel and Cochran’s modified formula, the number of examined physicians was estimated. Statistical significance was reached. Data are presented numerically; percentages are rounded to whole units.
Data assembly (study period and how it was performed)
The survey was made available to respondents in the following time frame: 10 June 2020 to 10 June 2023. The timing of the research data collection coincided with the SARS-CoV-2 pandemic. Information about the survey was communicated through classical channels (oral and written invitations, information at events) and online channels (a medical doctors’ e-mail database, website, primary care physicians’ forum in a group on facebook.com).
Collected data (outcome variables) and statistical approach
The results collected from 746 doctors practising primary care on a daily basis were analysed (figure 1). The response rate in our study aligns with the average for similar research among the physician population in Poland. Two surveys that were not completely filled out were rejected. Sixteen respondents answered that they do not work in the primary care, which automatically prevented them from completing the survey. Furthermore, a survey of physicians working in palliative care (all forms: home hospice, palliative medicine clinic, palliative medicine unit and inpatient hospice) was conducted—data were collected from 336 physicians, one survey was rejected. The research data were made available on the Polish Society of Family Medicine website (a trusted third-party website).
Physicians participating in the study.
Statistica 13.1 was used for the analysis. In statistics, the Shapiro-Wilk test was used to test normality. Furthermore, medians and quartile values (Q25, Q75) were used.
Results
Respondent characteristic
Three per cent of primary care physicians work simultaneously in palliative healthcare, whereas 20% of palliative care specialists work as a GP. Most of the GPs (33%) had work experience between 1 and 5 years, meanwhile, most of the surveyed doctors (46%) have been working in palliative care for over 16 years. GPs (64%) devote 20–40 hours per week to their work. The characteristics of the surveyed physicians are summarised in table 1.
Respondent characteristics
Home and stationary palliative care services availability assessments
There is a large discrepancy in the assessment of accessibility between primary care physicians and palliative care physicians (table 2). Nearly 54% and 73% of respondents believe that patients have poor access to home care and inpatient care, respectively (score in the range of ‘0–5’). At the same time, 66% and 60% of surveyed palliative medicine specialists rate access to home and inpatient care, respectively, as high (ratings in the range from 7 to 10).
Home and stationary palliative care services availability assessments summary
Sources of patient traffic and the most relevant criterion for referral to palliative care
Sixty-six per cent of primary care physicians claim they always refer their patients to palliative care when they see the need to do so. As little as 30% of respondents rarely refer their patients to palliative care. However, 4% of surveyed primary care physicians do not refer patients to palliative care, citing the lack of access to palliative care in the area as the reason.
Respondents indicated the diseases which make the patient (in Polish legal system) eligible for palliative care referral financed from the public funds. In the question, all of the aforementioned diseases entitled the patient to palliative care, which was indicated by only 1/4 of the surveyed GPs (table 3).
Introduction to palliative care versus definition
The data collected from palliative care physicians show that patients referred from the primary care physician represent only the third most frequent group of patients referred to palliative care (17) (figure 2).
Sources of patient traffic in palliative care, place of referral according to palliative care doctors.
Sets of questions designed to identify the criteria for referring patients to palliative care were used to identify and provide a deeper understanding of those criteria. According to respondents, the three most important criteria among all those mentioned included: the patient disease’s terminal stage (28%), enabling the patient and his family to improve their quality of life (22%) and the lack of a cure prognosis for the patient (20%). Fifteen per cent of respondents ranked the criterion regarding the patient’s suffering from cancer pain as the most important (figure 3).
The most relevant criterion for referral to palliative care and further criteria.
The survey found that primary care physicians do not agree on what stage of a patient’s illness should be covered by palliative care. Forty-six per cent of respondents believe that the introduction of palliative care should be independent of the disease stage, that is, whenever the patient requires management of symptoms such as pain. In contrast, 45% of respondents believe that when a patient’s illness does not hold a promise of cure, the patient should be enrolled in the palliative care (table 3). This is also reflected in the question regarding the respondents' definition of palliative care (table 3).
The palliative medicine physicians’ perspective
The study included the perspective of palliative care physicians receiving patients referred by the primary care physicians. Respondents indicated that relevance higher than 80% is represented by less than 35% of referrals from the primary care physicians, while as much as 27% of referrals demonstrate the accuracy below 60% (table 4). As the most common reason for this, respondents listed: lack of knowledge among primary care physicians (36%), lack of knowledge of the patient’s actual condition at the time of referral (24%) and the availability of the forms of care in question (18%) (table 4). Patients who required care other than palliative, according to the respondents, were most often ones with multimorbidity (43%), neurological patients (25%) and oncological patients (14%) (table 5). Finally, they were asked about the most common reasons for disqualifying patients from the palliative care (table 5).
Percentage of accurate referrals and reasons for inadequate referrals of patients to palliative care from primary care physicians
Alternative appropriate referral of palliative care patients according to surveyed palliative care physicians and reasons for disqualification from palliative care coverage of patients referred by palliative care physicians
Discussion
There are a number of significant barriers to accessing palliative care around the world, that are mentioned in the literature.6–8 17 In the authors’ opinion, they lack a description of mutual difficulties related to cooperation between primary healthcare and palliative care.
In view of the large number of patients requiring palliative care services, the role of the primary care physician is both to provide comprehensive care and support to patients and their families. It is also to refer patients to the palliative care in a timely manner. In order to properly fulfil this role, it is necessary to constantly expand knowledge and competence in this area. It is extremely important to provide proper education as early as the medical school, as this undoubtedly influences the medical community’s perception of palliative care as well as provides a foundation for effective cooperation between specialists in different fields by recognising the benefits of comprehensive care.18 However, our study showed that independent education of primary care physicians alone is not enough. It is necessary to build a connection, to build mutual understanding and show good practices of cooperation with palliative care. Otherwise, theoretical knowledge will not translate into a real change in patient management.
The limited coverage of palliative medicine during the course of education may result in insufficient knowledge and familiarity with this topic among medical students both in terms of the perception of palliative care and the management of various clinical situations related to patient care (including transmission of an unsuccessful prognosis and the use of opioids for pain management).19 20
In an article from 2023, Marshall et al draw attention to the need of using a well-coordinated multidisciplinary team approach in palliative care.21 Our results show that the role of such team should also include advising when family physician refers patients to palliative care. It should be emphasised that the involvement of family physicians in the activities of palliative care teams should take place early enough, not only when providing proper care (as in the work of Goldschmidt et al22). According to the authors, this is too late to ensure proper qualification of patients for palliative care.
In the survey, the disparity between the declarations in terms of the criteria used to decide whether to refer a patient to the palliative care and the actual referral of patients is noteworthy. The majority of respondents (64%) declared that they are able to correctly indicate which patients should be recommended for palliative care. At the same time, the possibility of improving the patient’s quality of life is only the third most important criterion for referral to palliative care, after the determination of the disease terminal stage or suffering from cancer-related pain. This means a significant delay in referring the patient to palliative care and can translate into a poorer prognosis in terms of achieving/maintaining a high quality of life for the patient. As much as 44% of primary care physicians refer patients to palliative care only when the disease does not promise long-term survival. Three of four of surveyed primary care physicians misdiagnose indications for referral to palliative care. Only 27% pointed to AIDS/HIV and 30% to cardiomyopathy as indications for palliative care.
The result is consistent with data from the palliative care physicians’ survey. Primary care is only the third most frequent referrer to palliative care, while virtually all patients who meet the referral criteria need to be diagnosed or treated in primary care clinics at some stage of their illness. The survey of palliative care physicians also accurately identified the reasons for inappropriate referral of patients to this form of care, the most significant of which is the lack of knowledge of palliative care physicians on the principles of palliative care coverage referrals.
The significant discrepancy in the evaluation of accessibility to palliative care services between palliative care physicians (generally better evaluation of accessibility) and primary care physicians (worse evaluation of accessibility) is noteworthy. Primary care physicians are also aware of where it is possible for a patient to get access to a palliative care (only 8% cannot indicate the distance between the primary healthcare facility and the nearest palliative care facility). Juxtaposed with the fact that primary care physicians refer patients to palliative care late, and only as the third most frequent referral, it seems that they base their beliefs about low accessibility to services mainly on their own unverified opinion or on the fact that palliative care units reject referrals (which, again, is due to incorrect referrals).
Conclusions and recommendations
It is necessary to continue education on the referral and palliative care coverage principles dedicated to primary care physicians, taking into account international standards for palliative care, its definition and the national capabilities of the palliative care system.
Even in mature health systems with well-organised palliative care, clear rules for referring, qualifying and disqualifying patients from palliative care coverage, which are clear to primary care physicians, are required.
Building educational activities aimed at the group of primary care physicians and the group of palliative care doctors should be synchronised and take into account the needs and interactions of both groups.
In clinical practice, solutions should be implemented to objectify the decision of primary care physicians to refer patients to palliative care, in order to reduce the disparity between knowledge in this area and its practical application.
It is important to obtain research-based knowledge on mutual understanding of systemically intersecting areas of care (primary healthcare and palliative care) to ensure better understanding in medical personnel groups.
Future perspectives
In order to counteract delayed referrals of patients to palliative care or referrals using erroneous criteria, it becomes crucial to educate primary care physicians on these criteria, the rules of referral and coverage of palliative care benefits, how palliative care is organised and the rules of cooperation between palliative care and primary care physicians. According to the researchers, it is also important to provide tools for objectifying referral criteria for palliative care and to support interaction between primary care physicians and palliative care specialists. Online solutions, including continuing education courses, training courses, online meetings, peer-to-peer groups consisting of a primary care physician and a palliative care physician, and tools (scales) can be useful for this purpose.
Strengths and limitations
The survey covered a significant number of primary care and palliative care physicians in Poland, and the use of an online survey allowed for easy access, reduced data collection time and responses from physicians across the country. The response rate is consistent with that expected from the literature,23 and resulting from similar studies conducted in Poland using the CAWI method. The study was conducted under the auspices of two scientific societies, the Polish Society of Family Medicine and the Polish Society of Palliative Medicine, which may have contributed to higher response rates and reliability. Directing the survey to both primary care and palliative care physicians allowed for a comparative analysis of the two groups’ perspectives.
However, the study focused only on physicians in Poland, which limits the evaluation of this perspective in other countries. The survey results are based on physicians' self-assessments, and the evaluation of access to palliative care was based on respondents' subjective beliefs, which may not have reflected the actual availability of services in different regions. The analysed groups of doctors are not representative of primary care and palliative physicians; however, statistical significance was achieved. The survey was conducted in electronic form, which may have made accessing it difficult. The survey focused on the perspectives of healthcare professionals but did not include the views and experiences of patients, which could provide valuable insight into the quality of palliative care services.
Authors acknowledge that the analysed groups of physicians do not comprehensively represent primary care and palliative physicians. The potential limitations arising from non-representative samples were mitigated by (1) providing broad, repeated access to the surveyed doctors through various channels, and (2) simplifying the survey to encourage completion. These steps aimed to minimise the impact of variables such as lack of internet access, non-participation in the recruitment process or incomplete responses, which could threaten the quality of our survey. Additionally, our article reflects the heterogeneity of the population of primary care physicians in Poland, noting that they are not solely primary care physicians. This aspect adds depth to our analysis and helps contextualise our findings within the broader spectrum of medical practice in Poland.
Data availability statement
Authors provide data availability per the ScholarOne submission site.
Ethics statements
Patient consent for publication
Ethics approval
The consent of the Bioethical Committee of the Medical University of Wrocław was obtained (KB 472/2020). Participants gave informed consent to participate in the study before taking part.
Footnotes
Twitter @lekbiesiada
Contributors AB, AC-R and AM-M substantially contributed to the design and implementation of the research, to the analysis of the results and to the writing of the manuscript. AB is a guarantor for the overall content.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.