A call for equity-informed pediatric palliative care in Canada

Abstract

Infants, children, and youth with serious illness, and their families continue to face inequities in access to pediatric palliative care across Canada. This paper explores what it means to take an equity-informed approach within this field and why such a shift is urgently needed. Drawing on current literature and emerging insights from practice and policy, it outlines key considerations for embedding equity principles into pediatric palliative care and calls for ongoing collaboration toward more inclusive, responsive, and just systems of care for children and families.

Introduction

Across Canada, infants, children, and youth (herein “children”) with serious illnesses and their families face a “patchwork” of palliative care services that differ dramatically depending on where they live, what supports they have, and how they are positioned within society (1,2). Pediatric palliative care (PPC) is a specialized field, aimed at enhancing quality of life, catered to the unique needs of seriously ill children and their families. However, barriers remain that prevent most children with serious illness from receiving specialized PPC services (3,4). PPC use is statistically rare: current estimates suggest that children make up <1% of palliative care patients in Canada, and <1% of children in Canada require this type of care (5). Because PPC patients make up such a small proportion of the overall health system population, PPC is rarely prioritized in planning, funding, or training. Drawing on health equity literature and palliative care scholarship, this paper identifies how structural inequities resulting from this lack of prioritization can manifest across the trajectory of serious childhood illness and proposes steps that clinicians, programs, and health systems can take to address these.

What does health equity mean in PPC?

In recent years, there has been a growing recognition of the importance of improving access to palliative care for underserved populations (6,7), but how this should be addressed for children and families remains underexplored. Whitehead defines health inequities as avoidable and potentially remediable differences in healthcare access and outcomes, rooted in systematic differences between groups (e.g., political, economic, social, environmental; 8). These differences can be produced and reproduced by policies and practices within and adjacent to healthcare (9), and are often shaped by systemic conditions (e.g., geography, colonial legacies, income inequality, ableism, etc.) that intersect to marginalize certain people. It recognizes system barriers that may perpetuate health inequities and seeks to address them to promote access to high-quality, and by extension socially informed, palliative care (10). While various concepts can be helpful in analyzing health equity issues (11), the concept of equity-informed palliative care positions this as a social justice issue (12) that requires action on multiple levels.

Key considerations to PPC equity in canada

Delivering PPC in Canada is shaped by a unique set of considerations that are interconnected. Canada's vast geography and relatively small population of children with serious illness means that specialized PPC programs are unevenly distributed. Children who require PPC in urban centres generally have greater access to specialist services; meanwhile families living in rural, remote, or northern communities are often required to travel long distances (12–15). This burdens families and, when available, informal networks to try and support care in the person's place of choosing.

The funding backdrop contributes significantly to shaping regional service availability and provision. In Canada, PPC programs require both public and charitable funding to operate. While this is generally acknowledged of hospices (13), even hospital-based PPC programs require substantive charitable funding (e.g., for clinical care, administrative support, service coordination, and grief and bereavement support). In a healthcare system facing constant pressures and competing priorities, obtaining adequate and sustainable funding for PPC can be a significant challenge for programs. This issue is amplified in rural areas affected by well-documented insufficient financial and human investments (16,17). Further, families often take on significant out-of-pocket financial costs to cover equipment, medications, and caregiving (18).

Equity-informed PPC concerns who can access these services and how this care is being provided (12,19). Research suggests that a majority of those seen as needing and accessing palliative care (the “who”) have particular sociodemographic and economic profiles (e.g., those diagnosed with cancer, with strong community and family ties, from majority cultural and religious groups, with stable housing) (12,14,20). However, people in need of palliative care are not composed of one homogenous group (12). This is true of children too, and their families, who may experience serious illness in addition to diverse social and structural vulnerabilities (21,22). For example, Black, Indigenous, and racialized communities in particular may face disproportionate systemic barriers such as, geographic inaccessibility, structural racism and discrimination, and less culturally reflective care models (12,19,23,24). Directing attention to “how” PPC is provided implies eliciting and striving to understand the experiences of these children and families to better understand their preferences and what is at stake for them in particular situations (25–27). This can be operationalized when clinicians actively involve children and families in care discussions, for example, through communication tailored to the child's needs and preferences; and when clinicians support advocating for and coordinating care services (27,28).

Looking forward: toward co-developed, equity-informed approaches

Delivering equity-informed PPC in Canada means taking meaningful steps to transform how care is delivered, who it reaches, and how systems are designed. Recent years have seen the emergence of promising initiatives across the country, including efforts to expand community-based and culturally responsive care, build partnerships, and grow cross-sector advocacy (7,29,30). Yet, significant gaps in access remain, the full scope of which is obscured by ongoing limitations in the availability of current, consistent data and reporting on the state of PPC in Canada (31,32).

Equity-informed PPC is core business for all who care for children; many actors have the opportunity to make a difference. Collaboration and advocacy with and across government-levels and services is a crucial step. Service models should reflect local contexts, resources, and community strengths, and investments are needed in home- and community-based supports to offer families legitimate choice (33). Crucially, to understand an equity-informed approach to PPC, we must consider not only the structures that enable/disable access but also engage directly with children receiving that care (19,34,35). Research suggests that children with a range of serious illnesses want to be involved in discussions on matters that affect them (28,36,37). Without their inclusion, efforts to improve equity risk reproducing the same gaps they seek to address (38). The road ahead invites opportunities to deepen our understanding, expand our networks, and continue building systems of care that are compassionate, connected, and socially just.

Funding

This work is supported by a Health Canada grant (2324-HQ-000113).

Potential conflict of interest

The authors reported no conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest.