Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

Palliative care (PC) development from a national-level perspective has been traditionally conducted using the domains proposed by the WHO Public Health Strategy for PC [1]. Therefore, national, regional, and global studies have utilized various indicators to assess PC development by mapping indicators onto the WHO domains of policies, education, use of medicines, and service provision [2]. These domains have been reported to correspond to the specialized development of PC [3]. However, recent discussions [2, 4] indicate that specialized development of PC may reflect a small part of the greater PC need, and comprehensive access to PC and its coverage may be more accurately measured by determining the level of integration of PC into national health systems.

The latest edition of the World Map assessing PC development globally used a classification system that included the concept of PC integration in terms of generalized provision [5]. The study used indicators reflecting various degrees of capacity building in palliative care to estimate integration of PC into national health systems [1]. The study concluded that 21 of 198 (11%) countries are in the preliminary level of integration of PC into mainstream provision, and 30 countries (15%) are in the level of advanced integration. However, integration was evaluated with regards to advances made in specialized service provision, access to medicine, education and policy and did not include the evaluation of PC integration into other fields and levels of the health systems.

Questions have been raised regarding whether specialized PC services have the capacity to provide PC for all those in need of PC [6]. In light of an increasing burden of serious health-related suffering [7], which is projected to double by the year 2060 to 48 million people every year (47% of all deaths globally) [8], there is a global call to health systems to develop strategies aimed at increasing access to PC at all levels. Strengthening health systems to integrate PC and expand coverage is particularly relevant in low-to-middle-income countries where, by year 2060, 87% of the global deaths are expected to take place [8].

Despite the absence of a consensus on the definition of PC integration, this concept has already permeated academic publications, international strategies, and advocacy groups. PC integration, seen as the accumulation of evidence suggesting that a person might receive relief from suffering due to advanced disease, at different levels of the system, through general or specialized services, may be examined using indicators which look at different areas and elements of the health system in relation to PC. The WHO included PC in the 2019 Astana Declaration on Primary Care [9], recognizing the importance of integrating PC into primary health care and increasing its access through wider coverage. The International Children’s Palliative Care Network has strived for the integration of PC into pediatrics [10]. The regional project Palliative Care for Older People in long-term care facilities (LTCF) and nursing homes in Europe explored the integration of PC into those facilities [11] and international organizations like the International Association for Hospice and Palliative Care has delivered advocacy statements at global health events like the World Health Assembly inviting Member States to integrate PC into primary care level [12].

Despite the increasing attention the topic of PC integration is gaining, to date, no study has addressed how to assess integration. The European Atlas of Palliative Care 2019 explored, for the first time, the integration of PC into other fields of the health system in Europe by focusing on pediatrics, long-term care facilities, primary care, cardiology, and volunteering. These fields were targeted due to their importance on providing PC in diverse care levels and for different types of patients (i.e. children, older adults at LTCF, and people in need of PC at the primary care level) [13, 14]. Furthermore, these areas were selected based on the existence of dedicated task forces in the EAPC, which informed the process and identified needs in the region.

National-level indicators to track progress or report on the status of current development in these fields are missing [2]. This paper aims to identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above.

Semi-structured interviews with EAPC task force members from pediatrics, long-term care facilities, primary care, cardiology, and volunteering were conducted. Next, a desk literature review to identify further indicators was conducted. A list of indicators was then given to EAPC taskforce members for rating.

A total of 11 experts participated in the semi-structured interviews and the rating of indicators (Table 1).

In total, 34 indicators were identified for the monitoring of palliative care integration into other fields of the explored areas. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology (Table 2).

Current discussion points out that PC development does not only focus on the advances made at the generalized provision with regards to the domains suggested by the WHO. Generalized development also refers to the basic foundation of policies, use of medicines, education and service provision to allow for a comprehensive, yet basic, coverage. However, after general provision is achieved, health systems should allow for integration into other fields of the health system to guarantee that all those in need can access it. This study shows some fields in which PC has already started to be integrated in Europe and proposes a list of indicators to assess its integration in national-level assessment studies.

Some studies have previously aimed and assessed PC integration into other levels of health systems (LTCF, PC) [17, 18]. The WHO has also strived to promote integration and drafted three manuals for the integration of PC into pediatrics, primary care, and emergency settings [19, 20]. More recently, the World Map delivered a categorization of countries into PC development levels that included categories for preliminary and advance integration [5]. These categories were defined based on the implementation of the following indicators: a) ratio of services per population as recommended by international organizations, assuring wide geographically spread; b) existence of a national palliative care strategy that is implemented, updated, and evaluated; c) a wide availability and consumption of all types of opioids; d) the existence of a recognized medical specialty in PC and the inclusion of PC education at the undergraduate level in the medicine and nursing curricula [21]. These indicators correspond to domains of the WHO Public Health strategy for PC: policy, education, specialized service provision, and use of medicines. We argue that the concept of integration should also be measured through generalized PC provision as assessed through each of the WHO domains as well as a specific evaluation that depicts the way and the level in which PC permeates other areas of the health systems. Such indicators should be included in a comprehensive framework for the monitoring and evaluation of PC development and included in global strategies [7]. Other strategies for global health priorities on the fight against chronic conditions, such as HIV/AIDS and cancer, can shed light on the kind of indicators to aim at in the future for the assessment of PC integration into health systems.

This study explored important areas where PC is being provided and integrated. The evaluation of the current national-level status of the integration into the areas explored shows meaningful contributions made on the coverage of patients in need. Relevant examples are the provision in pediatrics, the relevance of volunteers at the community level as well as the role of long-term care facilities on covering the needs of their residents.

These indicators are the first to be proposed for national-level monitoring of the integration of PC in specialized fields outside of generalized PC provision and are presented as a baseline from which to start a discussion. The scope of this study included the identification and formulation of these indicators rather than the assessment of their quality. Further research should address this issue. Additionally, only five areas of competence were selected for this study based on the availability of experts who were part of the EAPC task forces. However, future studies should address other areas, for instance, geriatrics and neurology. Additional research should be targeting at improving the indicators’ definitions. For instance, future research can aim at finding a consensus on the denominator or benchmark for the percentage of PC patients identified at the primary care level. Improving definitions can set a blueprint for the monitoring and evaluation of PC integration in different contexts.

Nevertheless, the identified indicators show relevant areas to address the assessment of PC integration. Some of them resemble the WHO domains already used for generalized development, mainly education and policy. The policy component is present in all areas of competence and takes the shape of the existence of legal frameworks for the provision of PC (i.e. pediatrics and long-term care facilities), the existence of incentives or protocols (i.e cardiology and primary care), and the availability of funding to support provision (i.e. volunteering). Similarly, the component of education is present in all areas of competence. In the case of primary care, and pediatrics the focus is on the inclusion of PC components on the training curricula of the health care work force for future pediatricians and doctors. Furthermore, education remains present also in long-term care facilities, volunteering, and pediatrics where PC training for volunteers and long-term staff was shown to be relevant for the provision of PC. In the case of pediatrics, specific training for neonatologists was rated as an important indicator. This shows the importance of integrating this sub-specialization into the provision of PC in pre-natal and newborn health to address the suffering of patients and families dealing with fatal diagnosis in the early stages of life.

The only field of competence with a specific indicator relating to the WHO domain of services was reported within pediatrics. No indicators were associated with the WHO’s use of medicines domain. In light of the overlapping domains, future research should focus on identifying more indicators for the assessment of PC integration into other fields of the health systems and attempt to suggest a classification or framework that could potentially be used to explore other areas of competence.

Measuring the development of palliative care through indicators has increasingly received attention in recent years, and it is necessary to assess the level of integration of palliative care into the national health systems. This study identified 34 new indicators to assess pediatric palliative care, primary palliative care, long-term care provision, volunteering, and the integration of palliative care into the cardiology field.