Equity-Focused Palliative and End-of-Life Care in a System Not Designed for it: Qualitative Insights from Service Providers and Recipients

Abstract

‘Equity-focused care’ has gained attention in recent years. With widespread use, concepts take on different meanings creating confusion for service providers. This study examines what people experiencing homelessness with life-limiting illnesses value in equity-focused care, and how service providers—who identify their work as equity-focused—describe their roles within a care system that relies on, yet often undervalues, this kind of work. We conducted 11 interviews with service providers and seven with people experiencing homelessness with a life-limiting illness and who received care from a community-based palliative care team in Western Canada. Interviews were transcribed and analyzed via thematic analysis. We constructed three themes: Adapting to Individual Needs; Service Provider Orientation to Practice; and Being Present with People. Themes aligned with two spheres of influence from the Education Training Research’s Health Equity Framework: Relationships and Networks and Systems of Power. Findings highlighted that service providers deliver equity-focused care by developing strong relational care networks challenging existing power structures –making this model incongruent with existing individually-focused biomedical care models. Findings transform the theoretical concept, ‘equity-focused care’, into tangible knowledge that highlights areas for policy change to support equity-focused care.

Introduction

This study investigates how ‘equitable health care’ is interpreted and practiced by people experiencing homelessness with life-limiting illnesses and their equity-focused services providers. The findings have significant implications for global health systems as they highlight the universal need for equitable health care practices to support people socially marginalized by poverty who are nearing the end-of-life.

Background

People who are vulnerably housed have a higher risk of chronic illness and higher mortality rates than the general population (Funk et al., 2022). Further, people experiencing homelessness (PEH) often have life-limiting illnesses that go untreated or undiagnosed (Stajduhar et al., 2020) because they may be unable to access health care or avoid it altogether because they feel that the system is not made for them (Klop et al., 2018). Absence of education around homelessness for health care providers and a lack of acknowledgment of or accountability for mistreating this population are problems in our present system (Purkey & MacKenzie, 2019). Studies show that PEH who use substances are rejected from accessing health services because of the absence of a harm-reduction approach (Purkey & MacKenzie, 2019; Stajduhar et al., 2019). The way the health care system is set up excludes PEH from palliative and end-of-life care (PEOLC) as they often have rules like not being able to use substances while in care (Purkey & MacKenzie, 2019; West et al., 2020). Another example of the rigidity of the current system is the lack of openness to manage missed appointments and follow-ups (Purkey & MacKenzie, 2019). These issues create barriers for PEH creating ongoing negative effects like disconnecting people from care. Other challenges often include lack of financial resources for the costs of medications (Klop et al., 2018) or difficulty finding transportation to and from medical appointments (Stajduhar et al., 2019). Additionally, people encounter ethical and legal challenges if there is no surrogate to decision-making for PEH nearing end-of-life leading to unmet patient wishes (Stajduhar et al., 2024). Further, racialized groups face multiple intersecting oppressions in addition to the above issues (West et al., 2020).

For these reasons, researchers and practitioners recognize the need to promote a palliative approach to care which is an equity-focused strategy that is responsive to the needs of PEH (Sawatzky et al., 2016). While there is no universally accepted term, ‘health equity’ typically refers to having the personal agency and fair access to resources and opportunities needed to achieve the best possible physical, emotional, and social well-being (Peterson et al., 2021). Relatedly, ‘equity-focused palliative care’ moves this definition into the end-of-life care space contributing to what Richards (2022) refers to as the ‘equity turn’ in palliative care. This approach recognizes access to PEOLC as a fundamental human right and that it should ideally be delivered through person-centered and integrated health services prioritizing individual needs, preferences, goals, and values (Sítima et al., 2024).

Small teams across Canada have been actively progressing a movement toward equity-focused palliative care. These teams often operate outside of or adjacent to mainstream provincially delivered health care systems. They are specialized PEOLC teams that operate in ways that promote, what they refer to as, ‘equitable palliative care’. However, while teams are working hard to provide specialized care for PEH, their efforts—like much care work in Western society, goes undercompensated and undervalued (Tronto, 2013). It is because of the broad reach of the equity in health and palliative care movements and the ever-increasing demand on the people doing this work that it is time to ‘ground’ our understanding in how equity-focused service providers (SPs) and their service recipients (SRs) come to understand, describe, and interpret equitable care in the context of resource-constrained environments like the Canadian public health care system.

To bring the scholarship and real-world application together, this study investigates how equitable health care is interpreted and practiced by PEH nearing end-of-life and their equity-focused SPs. Through this investigation, we learn what SRs deem important in their care and show how SPs interpret and describe equitable PEOLC practices. This study informs health and social policy and practices for PEH with life-limiting illness.

Methods

Epistemological Underpinnings

This ethnographic study is grounded in a social constructionist epistemology, which holds that knowledge is constructed through social processes, shaped by language, culture, and power relations (Berger & Luckmann, 1966; Burr, 2015). Accordingly, we employed a thematic analysis approach (Braun & Clarke, 2022) which aligns with a constructionist orientation. That is, we assumed that the themes were not inherent in the data, but treated as patterns developed through a coding process, reflexive engagement of the researchers, informed by and inextricable from researcher interpretations. Further, in applying the framework, we assumed it covered all possible spheres of influence without consideration for additional or fewer spheres of influence. This approach aligns with the study’s aim of how equitable health care is interpreted, described, and practiced in the end-of-life care space rather than aiming to uncover objective truths.

Objectives and Research Questions

This research explores how PEH facing life-limiting illness and their service providers talk about, put together, interpret, reify, recognize, and provide examples of equity-focused care. This research is the first of its kind to explore how equitable practices take shape in PEOLC as described by those doing the work and by those experiencing the barriers.

Two inter-related research questions guided this study:

• (1) What do PEH with life-limiting illnesses value about their experiences with care providers who describe themselves as ‘equity-focused’?

• (2) How do service providers describe ‘equitable’ health care for PEH with life-limiting illness?

Study Context

In Western Canada, experiences of homelessness are shaped by intersecting societal structures including fragmented healthcare delivery, limited access to affordable housing, systemic discrimination, and under-resourced social programs. Despite efforts by promising models like Housing First and medical respite care, palliative services remain sparse and inconsistently integrated with provincial health systems. This study focused on individuals associated with a small non-profit mobile palliative care team in Western Canada who, at the time of this research, consisted of a nurse coordinator (a registered nurse), a health navigator, and a palliative care physician who attended the SR visits once a week. The team operated within a community-based health clinic since 2016 providing services that help improve PEOLC for persons with life-limiting illnesses who experience or are at risk of homelessness in the study setting. Teams like this aim to bridge the gap in care between PEH and health care services by connecting people to community resources and adapting their work to meet patient needs (Petruik & Colgan, 2022). The team supports people to navigate the complexities of the health care system. They also commonly interface with other social-serving organizations to achieve their goal of improving equitable PEOLC for people who are socially marginalized by homelessness and poverty.

Data Collection

The study included 11 in-depth semi-structured interviews. Seven interviews were with SRs who have experienced precarious housing or homelessness and were clients of a small non-profit community PEOLC team and 11 were with SPs connected to the program (i.e., physicians, social workers, health system navigators, caseworkers, shelter staff, and nurses). All SPs in this study were self-reported ‘equity-focused’ care providers and the SRs were all clients of the equity-focused community palliative care team. As part of a larger study, interview questions for PEH included asking about the types of care that they value, that works for them, where they feel seen, recognized, and their needs heard in working with their community palliative care team.

We explicitly asked SPs about what ‘health equity’ or ‘equity-focused care’ meant to them, how it factors into their work, barriers and facilitators to this, and what the system does well, or not in promoting these. As providers, who deliver care under the interpretation of this terminology, it was important to use the language of ‘equity’. For SRs, the specific terminology was less important than knowing what they valued about the ways the self-reported equity-focused SPs supported them.

Recruitment occurred between March 2023 and January 2024. The community PEOLC team contacted the SRs and told them about the study and those who consented to be contacted were reached by the research team via telephone and asked to participate in the study. We use the terminology ‘service recipients’ rather than clients because of the discrepancy between SPs who spoke about people accessing services. We decided that SRs was a more neutral term that covered the relationship to all SPs.

Interviews were conducted in-person and over the phone and were audio-recorded and transcribed. This study acquired ethics approval from the University of Calgary Conjoint Health Research Ethics Board in March 2023 (Ethics ID: REB22-1023). Informed consent was obtained from all participations. A trauma-informed and relational approach guided data collection, given the social vulnerability of participants experiencing homelessness with serious illness. To increase confidentiality, we used pseudonyms and removed personally identifying details from our data. The SPs were aware that due to the small number of people on their team, it was possible that familiar and savvy readers may deduce who was involved in the study. Additional care was taken to minimize risks for participants who were also receiving care services by collecting data through a ‘consent to contact’ strategy which removed the care provider from the recruitment process.

Data Analysis and Reflexivity

We conducted interviews between May and December 2023. All interviews were audio recorded and transcribed verbatim using REV.com software with a research assistant on the team reviewing for accuracy. We used QSR International NVivo 14 software to organize data and facilitate a thematic analysis approach. Thematic analysis allowed for the identification of patterns, relationships, themes, and meanings within the data (Braun & Clarke, 2022). The process involved familiarization with the data, generating initial codes, applying codes to all interviews, and creating new codes as needed. We then looked for recurring ideas, concepts, and patterns across the coded data and grouped similar codes into broader themes, considering similarities and differences between groups. We then compared how the themes manifested different or similarly across the SP and SR groups. The team was reflexive throughout the study, acknowledging potential pre-conceptions that might influence the findings and noting them as they arose. The team discussed the interpretations throughout the analysis accounting for assumptions and potential assumptions always grounding the interpretations in the interview data. We had members of the research team compare codes throughout the analysis to produce a consensus through discussion. While the SP and SR responses were analyzed separately initially, the main overarching themes were similar for both groups. We then pulled key quotations from each pool of responses to support our findings. The authors preferred to report the data this way to ensure power of the respondent voices were evenly distributed in reporting.

Applying the Theoretical Framework

Recognizing the limitations of broad terms and frameworks and the misalignment between evidence and practice, Peterson et al. (2021) describe the need for a science and social justice-based approach to help illustrate how health is influenced by ‘complex interactions between people and their environments’ (p. 741). These authors developed the Education Training Research Health Equity Framework highlighting the interplay of structural, relational, and individual factors in addition to health issues better equipping us to address the root of health inequities, including discriminatory policies and practices, in practical and tangible ways (Peterson et al., 2021). We chose this framework as a lens to interpret our findings. The framework was not used in the initial design or interview phase of the research. It became an important lens as we began analyzing our data and reflecting on our findings. After first review of our data, we started pursuing theoretical frameworks to interpret our findings and came across the Health Equity Framework. After familiarizing ourselves with the data, we deductively used the framework as a guide for analyzing the data looking for themes that aligned or did not align with the framework. As Braun and Clarke (2022) suggest, thematic analysis can take on an inductive or deductive approach; in this study, while we used both approaches, in generating themes, we mainly took on the latter.

This framework (Diagram in Appendix 1) involves four spheres that influence health outcomes including: (1) Relationships and Networks, (2) Systems of Power, (3) Individual Factors, and (4) Physiological Pathways. The model highlights the spheres’ complex interplay and how they influence health. Many frameworks, while sophisticated and comprehensive, attempt to accomplish ‘too much’ covering every intricate detail rendering them difficult to interpret and less useful in application (Canadian Council on the Social Determinants of Health, 2015). We selected the Education Training Research’s Health Equity Framework for its clarity, simplicity, and broad application given the complexity of health equity and our goal of bringing a broad term into practical view at end-of-life for PEH. We interpreted our findings using this framework by mapping themes identified in the interviews to where they most closely aligned with the framework’s spheres of influence. In this way, we were able to interpret the findings in a way that highlights the complex interplay of factors influencing equitable health care and challenges faced by SPs in providing equity-focused PEOLC.

Results

In this section, we present three main themes. From systemic barriers entrenched within health care systems to individual-level challenges faced by both SRs and SPs, the complex landscape impedes equitable care delivery, but SPs have found ways to work within it. The findings section shows how we constructed three themes across SR and SP interviews that speak to what they valued about their equity-focused SP’s practices and how SPs described this type of care:

(1) Adapting to Individual Needs; (2) Service Provider Orientation to Practice; and (3) Being Present with People.

Theme 1: Adapting to Individual Needs

This theme explores how certain barriers in care necessitate strategies to mitigate issues associated with them. For instance, interviewees emphasized the importance of adapting to individual needs to provide care. SPs voiced that part of practicing ‘equity-focused care’ meant that SPs showed up in ways that were meaningful and useful to the people they cared for. This involved operating in relational ways with SRs despite structural challenges. This was done through advocating for SRs in a rigid system and being flexible with the way they deliver care. Relatedly, SRs expressed valuing advocacy and flexible care when asked about their experiences with their equity-focused care providers.

Advocacy

Advocacy was an important aspect of equitable PEOLC for participants. SPs highlighted the need to advocate for SRs fostering continuity through the care system ensuring that SRs priorities were heard. Showing up for SRs through advocacy efforts helped to build SRs trust in health care and the wider system of which they may have had challenges with historically.

The hospitals can be challenging to communicate with. Things sometimes get dropped or lost or [SRs’] priorities in their health aren't always shared in the acute care setting, which in some respects is required. But it's hard to ensure that equity follows them through all aspects of health care. They do still have poor experiences with health care. So, trying to be the advocate and be the middleman in some of that, I think is how we try and support equity. (SP #9)

This SP expressed that equitable care concerns are not ubiquitous across health care system providers, and this can be challenging as care gets passed from person to person. Part of this SP’s role, as they saw it was to move through the system with the individual and advocate when other providers are not supporting individual needs.

SRs highlighted instances where they valued the work of their care providers; we classified this under advocacy as it was expressed as a SP accessing appropriate pain management for them during care. Some people with histories of substance use often have higher tolerance levels when it comes to pain medications. For this reason, SPs can advocate for their patients to be prescribed higher than typical dosages to manage their pain to meet the individual needs of their patient.

[The team’s care] helped when I couldn’t describe to my doctor in ways they got it that I was in pain and that the dose they were giving me wasn’t enough. (SR #4)

When we got involved, one of the first things that was immediately clear to me was dude was not having any meaningful pain management. He had a history of opioid use disorder, so the addictions team at the hospital had consulted and they said, "I'm hesitant to give him any sort of opioid medication except for suboxone." But I was able to talk to his attending and say, "Hey, look, this is not a normal case, and I know that we have to be careful about opioid use disorder and all that," and talked about how people with opioid use disorder usually need more painkillers because of their tolerance and their experience. (SP #1)

Substance use can be controversial in health care settings and is often stigmatized. When managing pain at end-of-life, patients who have histories of substance use may require different dosages than someone without previous contact with substances. Paying attention to what individual SRs need given their unique circumstances is a significant element of advocacy for this group. To achieve this, the participants expressed that they had to advocate regularly to ensure the SRs received what they needed to be comfortable.

Flexibility

To show up for SRs in ways that are meaningful to them, health care must be available and accessible and sometimes this means reacting to the needs of people who need the services rather than the other way around. For participants, SPs expressed that anyone should be able to access care, and that SPs should be available when SRs needed it. SRs expressed that they valued care that provided flexibility to accommodate people’s needs.

I've had so many problems with my phone lately that I put off a couple appointments. And I'm going . . . How do I take the bus to get there? And if somebody is there and helps me when I need it, oh yeah then it’s okay. (SR #1)

The principle should be to try to treat [people] where [they] are, unless that is impossible and rarely is it impossible. So that, to me, is the biggest issue in health care right now, that we don't seem to have an understanding of that. And those who worked in the community for a long time recognize that providing that kind of care, is the best kind of care, even for the “tidy bungalow folks. (SP #6)

I've never had [a service provider] coming back to me and saying, "That's too complex." It's the very opposite. It's like, "Oh, I'll squeeze them in for their CT on Monday, if they can only come in Monday." If we truly understand where someone is coming from, I think most of the health care system, does want to help. We're boxed into efficiency. I guess, that's the problem, efficiency versus health equity. Right? (SP #10)

SRs and SPs highlighted the importance of being flexible in care delivery. They shared how this can be difficult given systemic constraints, especially for ‘tidy bungalow folks’, described as people who are what the health system ‘expects’; middle-income, mild to no mental health or addiction challenges, and who have stable housing and social support systems. This quotation illustrates how SPs speak about their work and legitimize it by relating the work to who the system is designed for. Perhaps to show that if they were to make the argument for PEH alone, it would not be enough to sway decision-makers into making changes across the system.

Theme 2: Service Provider Orientation to Practice

SRs expressed that they valued specific SP orientations to their practice. These comments aligned with how SPs described equity-focused care. SRs highlighted that a valued aspect of their equity-focused SPs—and something SPs themselves emphasized as key to an equity-driven approach—was the integration of important ethical considerations and a holistic perspective.

Ethical Considerations

Interviewees expressed that laying judgment aside facilitates an orientation to practice that brings PEOLC into a space where patients and providers can develop real loving relationships.

They [SP and SR] were both accepting and honest of each other. Just really honest. He died in his sleep, and the people that were caring for him were broken-hearted, because he had opened up to them and they had opened up to him, and they loved him. I know that we tossed that word around in palliative care, but they actually loved him, and they showed him that love, and he did the same back. It was just such a profound example of what can happen when people just can consciously lay their judgment aside. (SP #4)

One SR spoke about how facing judgment prevented him from feeling worthy of going to the hospital when he knew he needed it.

Interviewer: Why do you think it took you a long time to go to the hospital? It just felt like too much energy?

SR #6: Well. . . No. No, it's not the energy to get there. Just not feeling good enough, people judging and not caring. . .

Relatedly, to ensure one is reserving judgment, the participants expressed the importance of reflecting on their practice. Interviewees discussed ensuring that those who look after them are reflexive in their work. This includes recognizing ones’ assumptions, biases, and privileged positions as health and social care providers.

I wish we could just make [SPs] realize, like, for sure, all these doctors don't even know what the hell they're doing, they could just stop being so judgmental. (SR #4)

We all have biases and that's fine, but it's being aware of those biases and how you show up. I just don't think people have the ability, or the. . . not the training. I guess, the experience or the understanding and nuanced understanding of equitable care. I don't really think anybody's really trying to create more problems, but I think we're complicit, in the system continuing to create a lot of inequities by not being aware of how we show up because individuals are our health system. (SP #10)

It is natural to come with biases when working with people, but reserving judgment is fundamental in providing equitable care as the informants suggested. Reflexivity allows SPs to assess their practices. Without personal reflection, SPs may make assumptions about SRs that could cause harmful consequences and bolster inequities. Inextricably, part of an ethical service provider orientation that incorporates reserving judgment and reflexivity is respecting the autonomy of the SR by not imposing one’s own beliefs or judgments onto people they care for. According to participants, respecting autonomy is an important part of equitable PEOLC. Respecting autonomy of SRs is not always a deliberate consideration, especially if one does not agree with the choices of the SR.

Health equity in my work is about respecting autonomy, not taking a paternalistic approach, and really allowing people to have that information so that they can make their own best decisions of how they would like to determine where their life would like to go. (SP #1)

I think [it would be if they] respect my wishes. I want them to respect my wishes. I have [PEOLC plans] down to the very last detail right now. (SR #5)

It is important to the SRs in this study and the SPs to respect the autonomy of people who are being cared for. Additionally, a holistic approach was foundational to how SPs should orient to care if they are to practice equitably.

Holistic Approach

The interviewees described a holistic approach as caring for the ‘whole’ person, something that SRs valued in the care they received from their equity-focused care providers. The SPs outlined that an equitable approach to care that focuses on the ‘whole’ person is inherent to a palliative approach to care drawing similarities in both philosophies.

I think health equity is part of palliative care. Palliative care is about prevention and relief of suffering holistically, whether it's spiritually, socially, physically, psychologically, existentially. So, therefore, it's aware of the whole person including the inequities that they're experiencing. (SP #3)

Respondents suggested that equitable approaches to care need to focus on more than mitigating risk, that there is more to a person’s situation than that. Addressing the whole scope of an individual’s situation may lead to helping someone through relieving suffering, not simply mitigating risk.

If we can approach the whole issue of helping people who have inequitable access to supports and care as a community response rather than just a health services response, then I think we can make a difference. . . [we need to] accept that what we are doing may not perhaps mitigate the risk, but it will help with their suffering. (SP #8)

[The doctor] wasn’t paying attention to what I was saying. He just skipped right past important parts of my life like my brother passing away and how that affected me, how could he help me if he doesn’t listen to me. (SR #1)

The interviewees highlight how equitable care is for the whole person, not just about medical symptoms. SR#1 provides an example of how they felt that their physician was not paying attention to parts of this individual’s life that were important to him—also reminding us of the first theme which speaks to showing up in ways people need. The SP speaks to the importance of being aware of the whole person and that suffering may involve aspects of life that are beyond the physical.

Theme 3: Being Present With People

Being present with people was a key theme for SRs and SPs in this study. Interviewees expressed the importance of their care providers establishing person connections and taking time with people as key aspects of equitable health care delivery.

Establishing Personal Connections

A key sub-theme related to being present with people was ensuring a personal connection between SPs and SRs. The first quotation illustrates how there is a disconnect between the type of information collected for systemic purposes, and how that truncates the lives of those it is meant to serve. This shows the lack of personal connection inherent in established documentation processes.

Their vital signs are there for everyone to view. Their medical histories are there for everyone to view, but who they are is lost in there. . .what was important in their lives, what are things they are most proud of? What are the things that they remember that help them go through this? (SP #4)

I have found that if I know that this person really likes these things and likes to talk about certain things, I can share tidbits with them, so they have a way to connect. (SP #9)

An important component of establishing a personal connection is developing trust. SRs valued when they felt they could trust their care providers.

For me it is trust. I trust them. I trust [the team]. I trust everybody up here, especially [NAME] because they don’t lie to me. And that’s the thing I don’t want. I don’t want to be lied to. (SR #5)

The SPs discussed how establishing personal connections with SRs as part of care makes care more equitable. Similarly, SRs valued trust in their care which the SPs speak to in the absence of this in typical system processes. It is an opportunity to make care more personal and tailored to the SRs’ needs and wishes.

Taking Time

The participants in this study voiced that taking the time is key in delivering equitable care, particularly for PEH requiring PEOLC.

Yeah, communication could be better with the doctors mostly because they really don't give you time. You don't get much time when you go in there. I understand they're busy but take an extra minute or two and talk. (SR #5)

Unfortunately, health equity is time. What I mean by that is if you're going to make things equitable within health care system, it requires more time given to people and to certain populations. That is the challenge for health care because health care is often seen as a finite period of time to do a finite thing. So, for a complex psychosocial setup or a poverty, it takes a lot more time to navigate. Unfortunately, more time is more money. Round pegs and square holes in the hope that they just fit within the health care system. It makes it more expensive because people end up using health care systems inappropriately because they have no choice. So, yeah. I don't feel that health equity is understood. Possibly, because it involves a lot of cost. I think some people are frightened by that, but I think what you gain in the upstream, you prevent in the downstream. (SP #10)

To achieve a personal connection takes time and within the constraints of our health care system, it can be difficult to prioritize taking the time with SRs. Yet, despite constraints, the interviewees in this study still emphasized taking time with SRs as an essential component of equitable care delivery.

Discussion

Addressing all dimensions of health equity can be overwhelming but talking with people doing and receiving the care despite systemic constraints and exploring where this work fits into our wider theoretical understanding of equity-focused health care, gives us an applied way forward (Canadian Council on the Social Determinants of Health, 2015). By troubling how equity PEOLC work is valued and described we can build on and improve it for PEH.

The findings illuminate how equity-focused PEOLC for PEH is operationalized primarily through two of the four spheres of influence outlined in the Education Training Research’s Health Equity Framework (Peterson et al., 2021): Relationships and Networks and Systems of Power. The three core themes—Adapting to Individual Needs, Service Provider Orientation, and Building Personal Connections—map most directly on to these interconnecting spheres. Notably, while the framework’s other two spheres, Physiological Pathways and Individual Factors are critical in the holistic understanding of health equity, they were not central in the participant’s narratives and provider descriptions of equity-focused health care. This absence is telling as it emphasizes that, in the context of PEOLC for PEH, equity is not just about individual responsibility or biological outcomes, but about the social and structural conditions under which care is provided and relationships and support networks are formed. Below, we outline how the themes map onto the first two spheres of influence and follow with how this helps advance knowledge about health equity and PEOLC for PEH.

Relationships and Networks

This sphere emphasizes the critical role of social relationships, trust, and emotional engagement in shaping health experiences. All three themes reflect the centrality of relational work in equity-focused care.

• Adapting to Individual Needs takes relational form. SRs described how SPs who knew them personally tailored care to their preferences, routines, values, and contexts. These findings are consistent with trauma- and violence-informed approaches to care, which emphasize responsiveness, choice, and person-centredness (Ponic et al., 2016). Further, SPs’ ability to respond to SRs’ complex realities through ‘flexibility’ and ‘advocacy’, required understanding individuals within their broader social context. These adaptations often emerged from rapport and relationships that allowed for person-centered care.

• Service Provider Orientation also involved ethical considerations that reflect relational commitments—such as non-judgment, respecting autonomy, and reflecting on one’s own practice in relation to the SR. This orientation supports the development of trust over time which other studies have found in PEOLC contexts (Petruik & Colgan, 2022). Participants in this study emphasized the importance of ethical considerations and a holistic approach as strategies that strengthen relational trust and foster social connection.

• The theme, Being Present with People, including subthemes ‘building personal connections’ and ‘taking time’, captures how equity is enacted through emotional availability, presence, and patience. Participants described care encounters in which providers were ‘there’ for them—not rushed, distracted, or transactional—which allowed them to feel seen and valued. This echoes the work of Stajduhar and Mollison (2018) who argue that relational presence is foundational to supporting structurally vulnerable individuals nearing end-of-life. This theme reflects the role of relational trust, emotional safety, presence, mutual respect, and authentic relationality between SRs and SPs. These findings reinforce the importance of relational continuity and emotional support in care delivery for people socially marginalized by homelessness, extending understandings of what constitutes equity-focused care for people with life-limiting illnesses.

Systems of Power

This sphere of influence focuses on the institutional and policy-level structures that shape care access, quality, and experience of care. It centres on the structural and institutional conditions that shape SP and SR experiences. All three themes reflect forms of resistance to or navigation of these systems:

• Adapting to Individual Needs often required bending or bypassing rigid systemic limitations and policies that would otherwise exclude clients (e.g., ID requirements, housing status, abstinence-based care models). This reflects providers’ use of structural competency, wherein attention is paid not only to clinical needs but also to broader social and systemic forces (Metzl & Roberts, 2014). ‘Flexibility’ and ‘advocacy’ in care delivery becomes a form of structural accommodation for PEH.

• Service Provider Orientation included ‘ethical considerations’ and a ‘holistic approach’ to navigating unjust systems. SPs challenged organizational norms, redistributing power in their interactions with SRs, and co-created care plans that reflected SR’s values and realities beyond what is noted in their health chart. This aligns with the equity-oriented health care model developed by Browne et al. (2016), emphasizing responsiveness, structural humility, and sharing power. The findings demonstrate how providers embody equity-focused values in their everyday decision-making, frequently subverting organizational norms to center SRs’ dignity and preferences. SPs’ work reflects an intentional redistribution of power in health care interactions.

• Being Present with People, while rooted in interpersonal dynamics, also serves as a form of resistance to dehumanizing systems. This theme is emotionally meaningful but also politically significant. ‘Taking time’ and forming ‘personal connections’ were practices that disrupted institutional norms of speed, efficiency, clinical detachment, and authority. These findings reflect critiques of bureaucratized care systems in the literature around provision of slow care and resistance to neoliberal and market-driven health care logics (Mol et al., 2015; Tronto, 2013). Presence with people becomes a form of structural resistance and a way to reassert the humanity of SRs in systems that often devalue and disempower them. In contexts where PEH are often treated with suspicion, indifference, or even hostility, forging real connection can be a radical act that disrupts systemic exclusion and affirms personhood.

The other two spheres of influence, Individual Factors and Physiological Pathways were notably absent from participant accounts. Their relative standing to the other two spheres is analytically significant as it underscores that when discussing equity in PEOLC, SRs and SPs emphasized Relational and Systemic conditions over individual-level or biological explanations. This reflects a shift from dominant biomedical and behaviourist framings of equity-focused health care toward a more socially grounded and justice-oriented understanding. It suggests that for PEH and with life-limiting illness, equity was not about changing personal behaviour or receiving biomedical intervention, but about being treated with respect, having needs understood, and receiving care in ways that responded to their social and structural realities (Baum & Fisher, 2014; Raphael, 2006).

This study contributes to the growing body of research focusing on equity as a relational and structural process, adding the context of community-based end-of-life care for persons experiencing homelessness. It demonstrates how two spheres of influence, Relationships and Networks and Systems of Power are activated through care practices. This study also highlights the importance of being present with people as an under-recognized but critical equity practice offering empirical support for a slower, more relationally engaged model of care contrasting typical health care norms. Finally, this research contributes to both PEOLC and health equity scholarship by explaining the relational labor and structural flexibility required for equitable care in socially marginalized populations. It offers a bridge between theory and practice, showing how health equity is enacted through SR values, interpersonal dynamics, and resistance to institutional constraints. The findings challenge individualist models of health intervention by demonstrating the importance of care models that center social context, connection, and structural responsiveness at end-of-life.

Limitations

This study is limited as we spoke only to SRs already connected to care and SPs who already work under a philosophy of health equity. We have yet to know how people who are not working in this space or connected to care would describe equity-focused care and what people would value in this work. PEH are of those in highest need experiencing the most pronounced exclusion from our system. This project is limited to marginalization based on poverty, recognizing there are other significant intersecting factors that influence the way inequity is experienced and should be studied in connection to equitable care delivery. This study is limited in that we relied solely on interview data without the opportunity for other methods of data collection. This study findings may be transferable to other related contexts and should be done so at the discretion of the reader.

Conclusion

This study explored how equity-focused PEOLC is experienced and understood in the context of homelessness and life-limiting illness. The findings suggest that equity in PEOLC is not solely about clinical interventions and behavioral practices of individuals, but about how care is enacted within relationships and inextricable from power dynamics. Relational presence, structural responsiveness, and the moral labor of taking time emerged as core mechanisms through which equity was achieved. By extending the application of the Education Training Research’s Health Equity Framework into community-based PEOLC for PEH, this study contributes to a growing body of literature framing equity in systemic and relational terms. These insights are crucial to an international audience, as they underscore the need for systemic changes to support equitable care delivery worldwide. Future studies should expand on this research to include people not yet connected to equity-focused care, SRs, and SP perspectives of health equity across all health equity dimensions. Also, recognizing the constraints and burden of care placed on community SPs, future research could explore ways to improve support for this group. This project offers pathways toward fostering more equitable health care environments and enhancing the quality of care provided to individuals experiencing housing vulnerability with life-limiting illnesses.