Comparison of the perception of palliative care by healthcare professionals in some countries around the world: a systematic review

Introduction

Background

The World Health Organization (WHO) recognizes the importance of palliative care (PC) (1). From the moment a life-threatening illness is diagnosed, many decisions are made by healthcare professionals (HCPs). In this context, the medical community has reached a consensus on shared decision-making based on dialog between HCPs and patients/family members (2-4). Person-centered care based on scientific evidence includes empathetic listening to patients and their families and not prescribing futile treatments (5).

Rationale and knowledge gap

HCPs’ perception of PC is relevant, as PC is an important and growing approach in medical care, especially for patients suffering from advanced and incurable diseases. Pain relief, symptom management, and holistic care can improve the patient’s quality of life (6). Therefore, the perception of these professionals can affect the quantity and quality of care provided to patients (6,7).

There is likely to be an increase in the number of people in PC due to the aging of the elderly population predicted by the WHO for the coming decades (8). Knowledge and acceptance of this therapy are still a global challenge (6,7). Furthermore, no systematic reviews were found on this topic that compared the perceptions of HCPs from all continents.

Objective

This systematic review aimed to compare the perception of PC among HCPs from different countries around the world, to see if their view differs depending on their country of origin. We present this article in accordance with the PRISMA reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-39/rc).

Methods

Register

The systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO; Regen No. CRD42022381808).

Search strategy

Initially, the PICO strategy (population, intervention, comparison, outcome) was applied in this review, giving rise to the guiding question for conducting the study (population: HCPs; intervention: questionnaires/interviews on perceptions of PC; comparison: countries/continents; outcome: facilitating factors and hindering factors in PC) and using this strategy made it possible to acquire weightings of various key components for conducting the literature search. The highlighted assertion can be found on the Cochrane Handbook (9) platform (https://training.cochrane.org/handbook/current/chapter-02#section-2-1).

The question that guided the review and the selection of descriptors was: what are the perceptions of palliative care among healthcare professionals in different countries around the world?

The search was carried out in May 2023 in Portuguese, English, and Spanish in four databases: MEDLINE/PubMed, Embase, LILACS, and EBSCO. We searched studies using the following terms and combinations throughout the title or abstract: “palliative care”, “healthcare professionals”, and “perceptions”.

Inclusion and exclusion criteria

Publications between 2012 and 2022 in English, Spanish, or Portuguese, with full text available; studies that applied a questionnaire and/or questions about PC and that were answered only by HCPs were included.

Publications that included patients and family members in the studies, studies carried out with health students, studies aimed exclusively at terminally ill patients, systematic reviews, brief reports, letters to the editor, editorials, books, book chapters, and commentaries and studies that did not focus on PC were excluded.

Study selection and data extraction

Based on the initial findings, the titles and abstracts were evaluated by two judges. If the two could not reach a consensus, a third resolved the issue. The data from the studies was extracted into a spreadsheet which included: authors, year of publication, country/region, place of research, objectives, number of participants, profession, uni/multicenter, disease addressed, type of methodology used, database and results presented (available as Table S1).

Data synthesis

The studies were grouped according to continent and country. The findings on the perception of HCPs were discussed, seeking to compare: (I) the perceptions mentioned in the studies, from the reasons that lead to referral to PC; (II) the main barriers identified for PC; (III) the facilitating factors for PC; and (IV) the particularities described in the studies. When possible, the perception was also analyzed from the point of view of the professional’s training. Adherence to the studies was demonstrated by heat maps that indicated the number of HCPs invited and the numbers of those who participated in the studies.

Results

The initial search resulted in 2,063 records (Figure 1). After applying all inclusion and exclusion criteria, 32 studies were selected, and their data were summarized (Table 1).

Figure 1 PRISMA flowchart of screening procedure and identified studies for inclusion.

The adherence of HCPs to the research varied in the selected studies, as summarized in the heat maps that were drawn up to allow a comparison of the number of HCPs invited to the study and those who completed the studies (Figure 2).

Figure 2 Number of HCPs randomly assigned to the studies selected in this review (A) and those who completed the studies (B). HCPs, healthcare professionals.

All HCPs consulted in the studies recognized the importance of PC. The perception of these professionals was influenced by cultural factors, difficulties perceived in each country, diseases, and the age range of patients served.

Perception of PC in Europe

Europe had the highest number of studies (10-18), followed by North America. The findings indicate that referrals to PC are relatively uncommon in the region and often only made when death is imminent. Professionals need further training to improve their understanding of PC and communication with patients and their families. There is a need to improve integration in discussions during the illness to enable timely referral to PC. Some professionals were unprepared because they did not know what specialized PC is, an important barrier.

The barriers to be overcome in Europe include confusion in the conceptual understanding of PC, challenges in communication and transitions, and the need for interprofessional collaboration. Improvements in education, management, and communication are suggested as solutions. In Germany (18), the main barriers were: a lack of communication between HCPs; insufficient knowledge about PC, difficulties in identifying the right time to start PC, and insufficient organizational conditions. Those authors (36) concluded that the PC structure in Germany is not sufficiently well known, even though it has existed for years.

In Belgium (15), professionals emphasized the importance of communicating disease trajectories and treatment limitations with patients and their families. There was a misunderstanding of PC and a tendency to associate it with death, which led to limited participation of PC specialists and delayed onset of PC.

In Portugal (14), professionals in neonatal PC teams found it challenging to talk about their personal experiences providing PC to newborns and their families. The professionals expressed feelings of pain, sadness, suffering, and frustration, but also showed sensitivity to the needs of these families and willingness to embrace the implementation of PC.

A similar result was obtained in Switzerland (10) in a pediatric oncology center. The main barriers to pediatric PC were conceptual, as families associated it with death and loss of hope. The professionals’ challenge was to determine the best time to start PC.

The findings were different in Norway (16), where HCPs understood pediatric PC differently. The majority highlighted the quality of life, total care for the child and family, and interdisciplinary collaboration as central elements.

Perception of PC in America

Studies in America looked at the perceptions of HCPs in different sectors: including neonatal intensive care units (ICUs), teaching hospitals, and institutions that care for cancer patients. In the United States, although PC and hospice are separate entities, in our study this was not considered due to the profile of the sample. The professionals’ perception of PC seemed to vary according to their area of work. The most common reason for using PC services was to discuss goals of care and treatment decisions, while issues related to symptom management appeared less common (19-30).

The studies show that the perception of PC in America was positive. This was supported by the healthcare team, doctors, and nurses. There was agreement that PC is just as important as curative care, and involving family members in the decision-making process was recognized as a crucial aspect of PC. The importance of PC education was also acknowledged, and pain relief was prioritized. Education in PC was an important topic addressed in the studies (21,23).

There was variation in perception between professionals. For instance, hematological oncologists consider PC to be end-of-life care, which is incompatible with the objectives of cancer treatment (22). This difference in opinion may stem from a lack of experience in dealing with patients in PC. Conversely, solid tumor oncologists see PC as a subspecialty for treating patients with complex cases. Intensivists tend to accept PC due to the difficulties of prognosis and the need to identify different PC needs in each patient (19).

In Latin America (23), it was pointed out that early integration of PC is an ethical responsibility of doctors, regardless of resources. The barrier to this was the need to disseminate knowledge, as some doctors reported low confidence in treating the physical problems, emotional and spiritual needs, and bereavement of patients and their families.

In Brazil (26), professionals in a pediatric oncology unit understand the difference between palliative action and the proximity of death. They are prepared to care for the child and the family, recognizing that this treatment involves affection, humanity, and scientific knowledge. However, adult hospital ICU professionals in Brazil pointed out that the family unit was generally not integrated into the care, which focused exclusively on physical needs (27). In contrast, another study (28) found it difficult to know when an ICU patient has a greater indication for PC than for curative care, as both coexist with comfort care. Communication, lack of knowledge, and adequate training were also pointed out. Unpreparedness for pre-hospital care for patients eligible for PC has been highlighted (29). This barrier is related to the culture that death is taboo, as well as the lack of training and continuing education on death and PC.

Perception of PC in Asia (including Eurasia)

Six studies were chosen from Asian and Eurasian countries, where cultural issues were addressed in greater detail than in other continents (30-35). Most doctors believed that PC should be the last option (31). They associated it with end-of-life care and considered it only when they couldn’t offer active treatment.

Tay et al. (33) examined the influence of sociocultural factors on end-of-life practices based on filial piety. This concept leads families to refuse PC, mainly because accepting a referral for it is considered abandonment of the patient and loss of hope when they are informed that a cure is no longer possible. The perceptions of doctors and nurses in Singapore reflect barriers as inadequate understanding, communication skills, and prognosis, and a general lack of understanding of the role of PC.

As a result of these significant gaps, the paper highlights the urgent need for a focused national education program to target these barriers to the effective use of PC, as they are likely to persist in clinical settings.

Perception of PC in Oceania

Four studies were carried out in Australia (36-39), three of which were carried out in emergency units, which demonstrates the importance given by Australian professionals to PC in this sector. These studies revealed that HCPs’ understanding of PC and how it can be applied in the emergency department was often contradictory and confusing. Additionally, HCPs found it challenging to deal with their fears and anxieties about death, which negatively impacted patient care. The studies also highlighted conceptual confusion, misunderstandings, and apprehensions about the use of the term “palliative”. Many of the professionals interviewed were about the “palliative label”, which led them to address semantic issues, highlighting the unique and overlapping function of terms such as “supportive care” and “hospice care” [which was also evidenced in studies carried out in Europe, such as the study by De Clercq et al. (10) for Switzerland].

Perception of PC in Africa

The initial search did not retrieve any eligible articles for the African continent. In order not to exclude the African continent from the study, the search was refined by expanding the search criteria beyond those initially established to locate some studies on the subject. The search was then carried out only with the terms “palliative care” AND “Africa”. So, a study conducted with family caregivers of children with cancer (FCCCs) in Egypt (without professional training) (41). In this study, despite sufficient knowledge and a positive attitude towards PC, their practices were inadequate. Lack of training for FCCCs and inadequate communication between the healthcare team and FCCCs were identified as the main barriers to providing PC to children. Inadequate communication was also a finding of a study carried out with caregivers of children in Uganda (42).

In South Africa, physicians, nurses, social workers, and psychologists from KwaZulu-Natal, Western Cape, and Gauteng provinces pointed out that a lack of PC education among professionals, a lack of public awareness and a lack of specific care for adolescents are challenges for service provision (43). In Nigeria, barriers associated with accessing analgesia and challenges related to caring for patients with cancer, complex comorbidities, and spiritual needs have been reported (44).

Discussion

Key findings

This systematic review aimed to compare the perceptions of HCPs regarding PC in different countries. The studies analyzed were conducted between 2012 and 2022 to provide up-to-date information on the topic.

Most studies were conducted in hospital settings and included HCPs in general, with doctors being the most reported group. Cancer was the most cited disease leading to PC in these studies. There was variation in the number of studies per country, as well as variation in the number of participants per study. Nevertheless, the findings were considered important enough to warrant this systematic review.

Surprisingly, the authors found that all those interviewed pointed to similar barriers and concerns regarding PC, despite diverse cultures and economies. The main barriers identified across the 32 articles from Europe, America, Asia, and Oceania were cultural issues, lack of knowledge about PC, prejudices and taboos regarding death, lack of clear policies on PC, and conceptual confusion. The main barriers identified across the 32 articles from Europe, America, Asia, and Oceania were cultural issues, lack of knowledge about PC, prejudices and taboos regarding death, lack of clear policies on PC, and conceptual confusion.

Strengths and limitations

The strength of this review is that it is the first to report globally on HCP’ perceptions of the factors that facilitate PC and the barriers to be overcome.

Limitations: the findings did not include studies with professionals from the African continent; some studies had a low number or low adherence of participants, which makes generalization difficult and may have introduced the risk of bias, as it is speculated that only professionals interested in the subject may have participated.

Comparison with similar researches

We couldn’t find a similar review to directly compare our findings.

Explanations of findings

The research findings indicated that cultural specificities are considered important and should be considered when approaching PC, regardless of the country (33). HCPs often lack familiarity with cultural aspects that can influence behaviors and attitudes towards human experiences and disease processes. Custom, spirituality, and beliefs of a group denote different ways of thinking that should be considered when dialoguing between professionals, family members, and patients (39).

Other barriers observed were the lack of specific policies in many countries. This can include a lack of training in PC, resources, institutional support, time, or work overload, involving ethical and legal issues, among other factors. However, many studies point to solutions to overcome these barriers and promote the adoption of quality PC. These solutions include investment in PC resources, professional training, institutional and political support, better communication, and collaboration between HCPs, patients, and families.

Some regions (Northern Europe and North America) stand out with more understanding and acceptance of PC compared to the others. One possible explanation is the history of the modern hospice movement, founded in London in 1967 by Dame Cicely Saunders and spread around the world, including North America in the 1970s by Elisabeth Kübler-Ross (45,46). After all this time since the term PC was coined, later recognized by the WHO, spread around the world, and included in health courses, there are still challenges to the full implementation of PC around the world.

Although barriers are a reality in the adoption of PC, it is possible to overcome them and provide quality, humanized care to all patients with serious and incurable illnesses. The professionals involved need adequate knowledge to feel prepared and confident in providing this care, without the emotional interference of dealing with the finitude of life.

To overcome these barriers, knowledge about PC needs to be widely disseminated among the population and HCPs. The language used in this communication needs to be comprehensive and inclusive, must not be permeated by prejudices and taboos. In addition, government investment and the adoption of specific public policies can be effective strategies to ensure that PC is offered comprehensively to all individuals who need it.

Implications and actions needed

The study provides valuable insights into the main barriers that need to be overcome for the comprehensive realization of PC. These insights can be used to take actions at both public and private levels. Additionally, it highlights the need for the inclusion of this theme in the training of HCPs and new public policies.

Conclusions

HCPs around the world share very similar perceptions of PC, regardless of their location, whether it be in Europe, Asia, America, or Oceania. All the evaluated articles point out similar barriers, which could be influenced by cultural factors, the perceived difficulties in each country, the diseases and age groups of the patients being treated, and the level of acceptance and preparation of HCPs to deal with this issue. Therefore, it is crucial to have a broader approach that is adaptable to local realities to effectively implement PC in health systems.

Acknowledgments

Funding: This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brazil (CAPES) (No. 001).

Footnote

Reporting Checklist: The authors have completed the PRISMA reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-39/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-39/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-39/coif). 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.

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: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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