Professional unmet needs in the palliative care field (a scoping review)

Introduction

Background

Palliative care (PC), as defined by WHO in 2020, is “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness whether physical, psychological, social or spiritual”. It is a multidisciplinary care involving professionals from different areas (such as physicians, nurses, social workers, physiotherapists, paramedics, pharmacists and volunteers), in order to address issues that go beyond physical symptoms, thus ensuring the best care for the patient and their family (1).

PC prevents and relieves suffering through several actions in the continuum of care: early and timely identification, adequate assessment and treatment of multi domain needs and symptoms; and it is applicable at the onset of the disease, alongside other active therapies.

Oncological patients are the ones who have benefited the most from the integration of PC, through the development of protocols, programs and units focused on them. However, the higher rate in need of PC are older adults (60 and over) with non-oncological diseases, such as cardiovascular disease or renal disease, chronic obstructive pulmonary disease (COPD) or diabetes, among others. It should also be taken into account that in the next 25 years the number of elderly people with complex chronic diseases is expected to increase, which makes it a major problem for health systems (2).

Even if PC is explicitly recognized under the human rights to health, nowadays only 14% of people worldwide with palliative needs receive it (1). Considering that the number of patients with PC needs will increase in the coming years, and that we are currently at a very low percentage of those who are adequately cared for, it is necessary to identify the unmet needs in order to address the barriers that prevent PC from developing more widely.

The PC unmet needs of patients and caregivers have been reported by several studies. On the one hand, patients express the desire to receive care and to die at home rather than in the hospital, and good symptom control among other things, which is in contradiction with the high percentage of them ending their lives in hospitals, cared for by strangers and with inadequate symptom control (3-6).

On the other hand, research conducted for over a decade has shown that caregivers themselves report unmet needs, including a desire for more information and support from healthcare professionals (6).

The spotlight focus on person-centered attention and health services that pay special attention to the specific needs and preferences of individuals is an advantage, but ignores the other part of the equation, the needs of health care professionals (HCP). HCP often struggle to incorporate best practices into their work, leading them to feel overwhelmed and having many unmet learning and training needs (7,8).

Although the unmet needs of patients and caregivers can indirectly lead us to understand those of the HCP, but it is important to know for themselves these unmet needs in PC.

Rationale and knowledge gap

As mentioned above, most of the reviews on unmet needs in PC are conducted on patients and caregivers. Reviews on the unmet needs of HCP focus on specific aspects, such as training, or on groups of patients with specific characteristics or diseases. This is the case, for example, of the scoping review by Llop-Medina et al. which analyses the unmet needs of HCPs caring for elderly people with comorbidity (2), or the systematic review by Low et al. which shows only those needs of HCP caring for patients with cirrhosis (9).

Objective

The aim of this scoping review is to explore the professionals’ unmet needs throughout the PC continuum. Addressing the challenges identified along the continuum can lead to meaningful and lasting results for both HCP and the patient-family unit. We present this article in accordance with the PRISMA-ScR reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-324/rc) (10).

This review has not been registered.

Methods

Eligibility criteria

Studies were eligible for inclusion if they were peer-reviewed journal articles published between January 2018 and December 2022, were written in either Spanish and English, and addressed professional’s unmet needs in PCs as a main topic. The search included empirical studies (qualitative and quantitative) and systematic reviews. In addition, we have included some articles published before the search window to better explain some concepts throughout the manuscript. The methodological quality of the studies was not assessed due to the scarcity of relevant literature and the heterogeneity of the studies. Articles about pediatric PC were excluded, as we consider that it has different characteristics from adult patients, and therefore the HCP unmet needs in pediatric PC will be different from those in adults PC. The same applies to PC and coronavirus disease 2019 (COVID-19) pandemic.

Information sources

To identify relevant studies, a systematic search was conducted in NICE (National Institute for Health and Care Excellence), Cochrane Library, Tripdatabase, CINAHL (Cumulative Index of Nursing and Allied Health Literature) and PubMed databases.

Search strategy

Search terms were developed, reviewed, and refined by the full research team. MeSH terms and free text were used. The following search strategies were used to elicit a broad coverage of the extant literature:

• Palliative care [MeSH Terms] AND continuing education [MeSH Terms] AND healthcare professional.
• Healthcare professional unmet needs in palliative care.
• Unmet needs AND health care providers [MeSH Terms] AND palliative care [MeSH Terms].
• Attitude of Health Personnel [Mesh] AND Palliative Care [Mesh] OR Palliative Medicine [Mesh] AND training needs.
• Palliative care AND continuing education AND healthcare professional NOT pediatric (since 2018).

Table 1 shows the detailed search strategies used in five databases. We have also used other sources of information such as personal contacts of authors, and Final Master’s Degree and dissertations.

No protocol has been published.

Selection of sources of evidence

Using the above search terms and strategies and after removal of duplicates, the two lead authors screened the titles, keywords and abstracts. Full texts were obtained and reviewed for studies that clearly met the inclusion criteria or where the relevance was unclear. Two main authors reviewed each of the full texts in relation to the inclusion criteria. This independent review resulted in 96% agreement between the screeners. Disagreements were resolved by consultation with a third, and as a result all three reviewers agreed on the final determinations for selection of the articles.

Data charting & data items

The data charting and extraction were performed by the lead researcher, in an iterative and consultative process with the research team. Data from eligible studies were charted using a standardized data extraction tool designed for this study. The tool captured the relevant information on key study characteristics and detailed information. Extracted were: characteristics of the article (author, year of publication, country); type of study (design and method of collect data); aims and key findings related to professionals’ unmet needs in PC.

Two reviewers independently charted data from each eligible article. Any disagreements were resolved through discussion between the two reviewers or further adjudication by a third reviewer.

Synthesis of results

We grouped the studies by HCP unmet needs throughout the PC continuum in three different moments. The studies were analyzed one by one, and grouped in a narrative way into the three categories mentioned above. In addition, a table was created to summarize the characteristics of the studies.

Results

A total of 1,150 articles were identified by databases searching and 20 more through other sources. A total of 1,060 were excluded because they were duplicated (n=827) or were excluded by title and abstract because they were off-topic (n=233). A hundred and ten articles were taken to full text screening and 51 were selected. Two main authors reviewed in deep each of the full texts. A total of 34 articles were excluded by reviewers in a discussion session because they did not offer relevant information, did not meet the inclusion criteria or there was no full text available. In addition, 3 documents were included despite not fitting the timeline due to its content and relevance. Finally, 20 documents were considered fit to be included in this review.

Figure 1 represents the selection process.

Figure 1 Flow-chart of study retrieval and selection process.

The characteristic of the selected articles is summarized in Table 2. After analysis of the studies, they were broadly categorized into three main areas: (I) early detection of PC needs and care of patients during their PC trajectory; (II) end-of-life (EoL); (III) bereavement of family members. The needs detected in these areas are summarized in Tables 3,4.

Diagnosis/recognition of the patient entering the PC continuum and PC trajectory

The first step in the continuum of PC is the diagnosis and recognition of the patient entering the PC continuum, but there are several barriers that prevent this.

First of all, many HCP lack the knowledge to recognize the moment in which it is necessary begin the PC, as reported in several articles, and therefore they also fail in recognizing the palliative needs. This is particularly complicated in organ failure patients, who typically decline gradually with acute exacerbations that may or may not lead to death, and death is often seemingly unexpected (4-7,11-13). Failing to recognize this necessity leads to a late referral to PC, but also to an inadequate communication, lack of planning and shared-decision making with the patient and family (3,4).

Many physicians lack knowledge about PC principles, which makes them reluctant to referring patients to PC services because they fear losing oversight of their care plan. Many professionals also believe there are barriers when first approaching PC with their patient and family members (3,6,11). Lack of awareness of available resources and misconceptions about PC also play a role in the delay or absence of referral to PC (3,11,13).

Regarding the PC process, HCP identify insufficient general knowledge about PC, and educational needs on the management of physical symptoms and procedures. An important point is to recognize when to switch from curative to palliative treatment. Most of the times, the disease-directed treatment is often continued for too long, which worries many of the HCP (6,7,12,14).

Communication itself is another of the detected issues. HCP as well as patients and families point out the need for greater communication, both to share the transition from curative to palliative treatment and to discuss the best course of action. To this end, professionals express the need for training in communication strategies (4,6,15).

Finally, professionals point to the lack of time and resources in both diagnosis and PC trajectory (6,11,15).

EoL

Regarding unmet needs during the EoL phase, professionals reported lack of knowledge about the information concerning the last days of life and what to expect during this time, lack of care continuity and healthcare services coordination; and again, lack of communication training when discussing best course of action (8,16-18).

Moreover, studies show that HCP have little knowledge of psychosocial and spiritual care (19,20). A lack of knowledge regarding cultural practices, rituals and religious practices has also been found; as well as failure to provide a safe space for counselling and active listening (2).

It is also necessary to add that the provision of PC and especially, caring for patients at the EoL, involves many ethical dilemmas, which HCP face in their daily clinical practice. Most of the time they identify the ethical problem but do not feel confident enough to address it (21). Without the adequate knowledge and training, it can lead to emotional burnout and poor quality of care (8).

Bereavement

Bereavement also proved to be a difficult subject. HCP do not feel adequately trained in bereavement care. Physicians expressed low confidence regarding their knowledge about how to address bereaved relatives, and there is also a lack of skills regarding the addressing of emotions and psychological distress pre-bereavement (14,22).

Some of the articles reviewed in this category are based on the opinions of bereaved relatives. It is striking that they are focused on patient and family care up to the time of death, but not during the bereavement period, despite the fact that this is also an important part of PC (17,18).

Discussion

This scoping review has highlighted three main categories of unmet needs in the PC continuum: diagnosis/recognition of the patient entering the PC continuum and PC trajectory, EoL and bereavement.

These three categories have two clear points in common that we have consider as transversal needs: the lack of training of HCP at different levels and the need for better resource management to improve PC.

The major limitation of this review is that a standardized critical evaluation of each article was not performed due to the scarcity of the literature and variations in the methodology and quality of the articles reviewed. Grant and Booth (24) imply that a lack of quality assessment limits the uptake of scoping review findings into policy and practice. We mitigated this by reviewing the quality of the included papers. However, given the subject area, the evidence was generally of moderate quality. Some relevant studies may not have used the term ‘palliative care’ in their title or abstract, and so did not appear in our search, although we attempted to mitigate this by using a broad search strategy. Moreover, we did not perform manual searching of key journals, and grey literature was not included, as we carried out searches in commonly used databases. Finally, we have considered appropriate to search for articles outside the search period to clarify concepts that were not clear from the previous search.

This review is not intended to establish definitive conclusions about all the needs HCP have, as it is a scoping review and the intention of the study has been to make a first approach to them. We sought to map the needs detected in the literature with the aim of being able to deepen them in future studies. As this is a scoping review, no risk of bias assessment was conducted. In addition, we can only extract results of the studies with available data, acknowledging the limitations of the analyzed studies, including issues such as the exclusion of some countries if studies were not published in languages included. However, we consider there to be sufficient accuracy and consistency of the results analyzed in this scoping review for it to be useful to guide future research.

No similar studies have been found in the literature.

In our opinion, the main finding is the evidence of lack of training in PC among HCP in several areas: knowledge about PC principles, physical symptom management, communication at the three levels of the PC continuum, and holistic approach of the patient-family unit (3-5,8,13,20,23,25,26).

Another important finding concerns the health system itself. HCP have expressed as unmet needs the lack of resources and the lack of coordination between the different levels for a continuum of care in PC. HCP also complain about the lack of time, often due to a lack of organization. An economic assessment of the needs of patients is crucial to ensure a good quality of life until the end, but also for the most appropriate use of available resources.

As noted above, training is an essential transversal need that affects the entire continuum of PC. The first barrier is at the very beginning. According to the WHO, the main barrier to increased access to PC is a lack of trained HCP. Furthermore, the WHO recommends that ‘‘PC should be integrated as a routine element of all Undergraduate Medical Education (27)’’. However, the provision of training for medical undergraduates is variable; for example, the Atlas of PC in Europe (2019) identified that only 9 of the 51 countries assessed have mandatory training in palliative medicine in all medical schools. The provision of training for medical students in PC is crucial, not only for the patients and families, but also for the professional development of doctors (27).

The recognition of the specific unmet needs of each phase of the continuum can be addressed with proper training about the principles of PC. Diagnosis of the patient entering the PC continuum and PC trajectory is one of the keys necessary to provide adequate quality care, and can be trained. Training is also necessary in the PC trajectory, both in the management of symptoms and treatments, and specially in communication at different levels.

As showed by Colourides et al. (11), one of the largest barrier is the lack of PC health literacy, as it relates to the widespread clinician-held myth of equating PC with hospice, but correcting misconceptions through proper training can lead HCP to encourage referring patients to PC teams. Their findings suggest the crucial role of increasing physicians’ knowledge about PC, which is fundamental in engaging Primary Care professionals in new models of care. But it is a study with several limitations, which highlights the need for more interventions of this type to obtain more conclusive data.

In the PC training intervention carried out by Artioli et al. (13), the results obtained showed that after the training, the participants had greatly improved their knowledge, both in terms of increasing their expertise about PC and in changing the meanings previously attributed to situations related to chronicity and incurability. But again they found limitations that highlight the need for studies to assess the impact of this type of training.

O’Brien et al. (20) conducted a study about the impact of spiritual care training, finding that it encouraged participants to be aware of the need to deliver care in a holistic manner. They concluded that the course was clearly effective in preparing HCP to provide individualized, patient-directed spiritual care.

These three studies mentioned above show the benefit of specific training in PC, but point to the need for more training programs and more extensive studies on the impact of these trainings on professionals.

With regard to bereavement, the necessary tool to solve this need is again the training of professionals, both in communication and in the needs of bereavement and the previous phases.

There are facilitating factors found in literature that, with appropriate training in their use, can help professional better understand the needs of palliative patients.

IDC-Pal is a tool that has proven useful in recognition the need for a patient to enter the PC continuum (28). It is a well known fact that the trajectory of these patients can change dramatically over time. Complexity refers to situations that make the management of patients with PC needs much more difficult than usual, and may require the involvement of a specialized team. It includes not only physical symptoms, but also socioeconomic and psychological factors, among others, and stratifies patients as non-complex, complex and highly complex. Recognizing the complexity of a case is essential for an appropriate referral to PC, and tools like IDC-Pal help in obtaining the best level of health possible for the patient, within a framework of efficacy, effectiveness, and efficiency; while keeping in mind the ethical requirement of equity (28).

Another useful resource for the professional is the advanced care planning (ACP); which is the process of continued communication and shared decision-making between the patient-family unit and the HCP regarding preferred care plans in the event of future illness progression. It is also useful in cases where the patient is unable to make his or her own decisions, as it allows for the designation of a family surrogate. This shared decision-making is necessary both in the PC trajectory and at the EoL. HCP as a whole, but specially physicians, play an important role in initiating and facilitating this process but lack of training can hinder their involvement in it, therefore, adequate training in its use is necessary.

There is evidence of the effectiveness of ACP training programs in increasing professionals’ knowledge, attitudes towards shared decision-making and perceived communication skills, but also in referring a patient in a timely manner to a PC team (3,11,15).

ACP is not the only strategy for improving communication between the patient-family unit and HCP. The Serious Illness Conversation Program (SICP) train clinicians to use a conversation guide to structure serious illness discussions, moving beyond enabling the learner to break bad news and focusing on the “next step” of facilitating a patient-centered exploration of goals and values (29). Lagrotteria et al. conducted a qualitative study about the clinicians’ perspectives after implementation of the SICP, and concluded that it supported changes in their behavior and facilitated meaningful patient interactions that shifted the focus of goals-of-care conversations beyond discussion of code status (30).

As ACP, SICP is a very useful tool for both the PC continuum and at the EoL.

Finally, an economic assessment of the needs of PC is crucial to ensure a good quality of life until the end, but also for the most appropriate use of available resources. The studies on PC economics carried out by Mathew et al., May et al. and Luta et al. suggested that PC is cost-effective compared to either usual care or absence of care; and therefore there is a potential for reduction in direct healthcare costs and resources use mainly in home-based programs if the PC intervention is used. Inpatient PC consultations were consistently associated with fewer hospitalizations, readmissions and reduced costs (31-33).

The economic evaluation in PC studies has not been taken into account in many of the studies performed, so that important information is missing to ensure the quality, follow-up, financing, and evaluation of PC (34,35). Moreover, existing methods for economic evaluation may not be adequate, as PCs differ in several aspects from other areas of health care (36-38)—for example the use of QUALY in the PC settings may be questioned (39).

To generate valid and useful evidence and decision bases, research methods for economic evaluations applied in the field of PC must consider these specific conditions in their methodology. Actually, there are four common issues that need to be reformulated for economic evaluation in PC. First, in cost-effectiveness analysis there is an almost total reliance on the “cost” component. The cost impact of the intervention is examined in the studies, assuming that the cost savings are beneficial; and assuming that these results are comparable for both PC and non-PC patients. Second, there is a limited perspective on costs. Costs are usually examined from the payer’s or hospital’s perspective but informal costs, those of patients and families, are not analyzed. Third, the time window of the analyses is very limited. These studies based on hospital admissions and/or healthcare at the EoL, are more representative of diseases with a rapid progression such as cancer, and less representative of other diseases with slower evolutions. Finally, these studies are predominantly conducted in North America, with different characteristics from the realities of other countries (33).

For these reasons it is necessary to standardize the methodological aspects and challenges to produce recommendations as well as potential solutions to overcome these problems and consequently provide methodological guidance when conducting economic evaluations in PC settings, irrespective of the underlying disease, gender or geographical region. For example, due to the heterogeneity of interventions, settings and patients that fall under the label of “PC”, the joint measurement of costs and outcomes is essential to adequately support and develop new models of care that have the potential to improve the experience of patients and their relatives, avoid unnecessary treatments, and potentially reduce healthcare costs (32,33). These findings can help to establish a specific training for the HCP in the field of economic evaluation; which would help policymakers to understand the benefits to invest in PC (40).

Conclusions

Given the challenging nature of PC and the lack of knowledge throughout the continuum, addressing these areas or moments can result in significant and long-lasting outcomes for both HCP and the patient-family unit, as well as savings in healthcare. Three main areas for HCP unmet needs have been detected: Early detection of PC needs and care of patients during their PC trajectory, EoL, and the aftercare of the dying and bereavement. Also, two transversal needs have been detected: economic evaluation with proper methodology, and training needs that could be the answer to the majority of others needs detected. Finally, proper training would be the best way to achieve a quality PC for all the stakeholders: patients, relatives and HCP.

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editor (Claudia Fischer) for the series “Value of Palliative Care” published in Annals of Palliative Medicine. The article has undergone external peer review.

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-324/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-324/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-324/coif). The series “Value of Palliative Care” was commissioned by the editorial office without any funding or sponsorship. The authors have no other 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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