Living Before Dying: Nursing Practice in Supporting Meaningful Living for Patients Receiving Home Care at End-of-Life

Abstract

Palliative care nursing practice supports individuals and their caregivers through the end-of-life by emphasizing a person-centered approach. However, in practice, nurses must navigate ongoing tensions between organizational norms, professional responsibilities, and the diverse values and wishes of patients, raising questions about how care can remain responsive within complex and constraining contexts. Despite recognition of these challenges, the mechanisms through which palliative care nursing practice sustains meaningful living at the end-of-life remain insufficiently understood. This study examined the mechanisms through which palliative care nursing enables patients to live a meaningful life until death. Using an interpretive descriptive design informed by Sen’s capability approach, the study combined three qualitative methods: co-construction of practice narratives with three home-based palliative care nurses, reflexive writing of a personal narrative by the main researcher, and analytical questioning. The analysis identified four interrelated mechanisms that characterize palliative care nursing practice: navigating between patients’ valued lives and norms; recognizing patients as simultaneously capable and vulnerable; reflexively engaging with one’s own practice; and being creatively present through sensitive and slow actions tailored to each situation. Together, these mechanisms depict a reflexive, relational, and context-sensitive nursing practice oriented toward expanding patients’ real possibilities for living a meaningful life until death.

Keywords

capability approach end-of-life care home-based care narrative inquiry person-centered Canada

Background

Palliative care is defined as the active holistic care of individuals of all ages experiencing serious health-related suffering, with the goal of improving the quality of life of patients, their families, and caregivers (Radbruch et al., 2020, p. 761). It emphasizes person-centered care that recognizes individuals beyond their disease and attends to the physical, psychosocial, and relational dimensions of care (Robinson et al., 2017).

In Canada, palliative care is delivered across multiple settings, with patients’ homes being the preferred setting of care (Lessard & Marcoux, 2020). Home-based palliative care is primarily organized through publicly funded health institutions that coordinate services through case managers and interdisciplinary home care teams (Lessard & Marcoux, 2020). These teams provide clinical care in patients’ homes while collaborating closely with community organizations that offer complementary services such as additional nursing care, psychosocial support, and respite care. In this context, nurses play a key role in coordinating services, supporting decision-making, and accompanying patients and families through complex clinical and relational dynamics (Robinson et al., 2017).

Through their everyday practice, nurses are not only engaged in care delivery but are also situated at the intersection of multiple, and sometimes competing, expectations that shape how end-of-life care is understood and enacted. Among these expectations is the long-standing discourse of the “good death,” which highlights elements such as symptom relief, acceptance of dying, and the involvement of loved ones (Meier et al., 2016; Morgan & Gazarian, 2023). This normative discourse, which contributed to articulating and legitimizing palliative care, coexists with the diverse ways in which individuals experience and make sense of the end-of-life. Research shows that patients’ preferences, capacities, and relationships vary considerably, and their priorities often continue to evolve as they approach death (Nasu et al., 2022; Velić et al., 2023). Indeed, scholars have emphasized that end-of-life decision-making is shaped by relational, cultural, and social contexts. For example, Lolich and Lynch (2017) argue that patient autonomy cannot be understood outside relational care structures, demonstrating that choices at the end-of-life are embedded in networks of support and dependency. Similarly, Zaman (2025) highlights how cultural assumptions shape expectations around a “good death,” showing that decision-making norms vary significantly across cultural and social contexts. Together, these studies show that autonomy and end-of-life preferences are continuously negotiated in dialogue with many actors, such as nurses, other healthcare professionals, caregivers, and communities.

However, despite these evolving understandings of end-of-life experiences, the ways in which palliative care is enacted in clinical practice do not fully reflect this relational and context-based care. In response, several authors have proposed broadening reflections on the aims and orientation of palliative care professional practices. Abel and Kellehear (2016), for example, highlight the potential of community networks to complement clinical care and support people at the end-of-life. Graven and Timm (2019) revisit concepts such as authenticity, presence, and compassion to illuminate how core values can guide professionals in everyday practice. Others draw attention to the plurality of dying experiences and the importance of culturally situated understandings of autonomy (Zaman et al., 2017). Together, these perspectives encourage an appreciation of palliative care as relational, shaped in practice, context-sensitive, and responsive to the uniqueness of patients’ lives.

Recent empirical work has further highlighted the distinct contribution of nurses to such perspectives. A recent integrative review highlights that home-based nurses contribute to sustaining patients’ sense of meaning through practices grounded in presence, openness, and individualized care (Leclerc-Loiselle et al., 2024). Another study describes palliative nurses as “privileged relational agents,” using active listening, empathy, and biographical understanding to help patients interpret their experiences and maintain coherence in the final phase of life (Pereira & Sousa Valente Ribeiro, 2023). Kuosmanen et al.’s (2021) systematic review reports that effective communication, relational continuity, and interprofessional collaboration are prerequisites for shared decision-making, and nurses frequently uphold these conditions in daily practice. Finally, current evidence suggests that nurses play a critical role in navigating ethical tensions around autonomy, beneficence, and relational care, which are central to end-of-life decision-making (Alanazi et al., 2024).

Existing studies highlight the importance of nursing in communication, decision-making process, symptom management, and ethical sensitivity. However, empirical work has not fully illuminated how these roles interact to help individuals live a meaningful life until death. Further research is needed to better understand how nursing practice navigates the complex, shifting, and relational nature of end-of-life experiences. Addressing this gap, the present study aims to describe the mechanisms through which home-based palliative care nursing practice supports patients in living a meaningful life until death. The concept of “mechanisms” is used to refer to intelligible representations of how a phenomenon is produced or transformed (Bender, 2018), in this case, nursing practice.

Theoretical Underpinnings

This study is based on Sen’s (2011) capability approach, which provides a theoretical lens for understanding palliative care nursing practice as supporting individuals in living a meaningful life until death. Central to this perspective is the idea that care practices can contribute to the development of individuals’ capabilities (Doucet, 2020), defined as the actual freedoms people have to live the life they have reason to value for themselves (Sen, 2011). From this standpoint, well-being is not defined solely by observable states or outcomes but by the real opportunities individuals have to pursue what they consider meaningful (Sen, 2011). Capabilities emerge through the interaction of individuals’ personal abilities, the resources available in their environment, and the broader social and political conditions. Robeyns (2005) refers to this dynamic as a process of “conversion,” whereby available resources are “converted” into real opportunities depending on personal, social, and contextual factors. In this perspective, individuals’ possibilities for action are shaped not only by their health status but also by relational, social, and institutional conditions.

Applied to health care, the capability approach invites attention to how care practices support individuals in maintaining meaningful possibilities for action and choice even in the context of serious illness (Pernet et al., 2018). Rather than focusing exclusively on predefined outcomes, this perspective emphasizes fostering the conditions that allow individuals to pursue what matters to them (Frahsa et al., 2021). In this sense, nursing practice can be understood as contributing to the conversion of available resources into capabilities by supporting patients’ preferences, relationships, and living conditions. By highlighting the interdependence between individuals and their context, the capability approach offers a framework for examining how nursing practice participates in sustaining meaningful possibilities for patients as they approach the end-of-life (Leclerc-Loiselle et al., 2023a). This would mean that nursing practice operates on several levels, including engagement with the patient and their individuality, as well as a socio-political engagement with the contextual factors that generate or inhibit capabilities (Leclerc-Loiselle et al., 2023a). We posit that the use of the capability approach could shed light on the relational aspects of palliative care nursing practice.

Epistemological Underpinnings

Epistemologically, this study is informed by Le Moigne’s projective constructivist epistemology, which conceptualizes knowledge as co-constructed through the intersubjective engagement of researchers and participants (Le Moigne, 2021). From this perspective, knowledge represents a situated and partial interpretation of the world, shaped by the experiences, values, and intentions of various actors. Its value lies in its viability and functional adaptability to guide actions in various contexts (von Glasersfeld, 2001). Methodologically, this stance supports a recursive and interpretive inquiry in which understanding develops through ongoing interaction between emerging insights and methodological choices (Avenier, 2018).

Methods

Coherent with this epistemological position, an interpretative descriptive design (Thorne, 2016) was employed to generate a practice-based understanding of palliative care nursing practice. Rooted in the pragmatic aim of informing clinical practice, this methodology seeks to capture and interpret experiential knowledge to illuminate patterns, meanings, and variations that can guide professional practice (Thorne, 2016). This iterative process integrated three qualitative methods: the co-construction of home-based palliative care nursing practice narratives, the reflexive writing of a personal palliative care nursing practice narrative, and an analysis of the narratives using analytical questioning.

Co-Construction of Nursing Practice Narratives

Inspired by Clandinin and Connelly (2004), a narrative approach was used with nurses to co-construct narratives that illustrate their home-based palliative care practice. The goal of this relational and interpretive method was to describe and understand the contextualized experience of individuals through the creation of narratives. Each of these narratives tells a story situated in the specific time they were constructed. By sharing real-life experiences, the participant and researcher became an integral part of the constructive process (Clandinin, 2013). It is through the process of writing that the researcher connects the temporal, social and spatial dimensions that make up the story so that a new understanding can emerge (Clandinin & Connelly, 2004).

Recruitment

Nurses were recruited via e-mails sent by local palliative care associations and professional networks. To be eligible, nurses had to have at least 5 years of experience and at least 1 year of experience as a palliative home care nurse. The research was limited to the home care context since palliative care at home is considered to be part of people’s lives (Lessard & Marcoux, 2020). Exclusion criteria included working for a nursing placement agency or working exclusively with pediatric clients. A purposive sampling strategy (Patton, 2014) was used to ensure heterogeneity of the participants’ practice contexts: publicly funded institutional settings and community-based settings; urban and rural.

Sample

Between February 2021 and March 2022, three nurses providing home-based palliative care within different organizations, agreed to participate: Anna, a woman aged between 35 and 44 who had been working in an publicly funded institutional home-based palliative care team, in a densely populated urban centre for about 7 years; Marie, a woman aged between 55 and 64 who had been working in a Quebec community-based home-care palliative organization for about 10 years; and Jade, a woman aged between 35 and 44 who had been working in a publicly funded institutional home-care team in a rural area for about 5 years. The diversity of settings (urban, rural, institutional, and community-based) provided contrasting perspectives, supporting conceptual richness and enhancing the reflexive use of findings.

Data Collection

For the 3 nurses, a total of 12 interviews were carried for a total time of 15 hr and 48 min. Although limited to three participants, the iterative co-construction of stories over several months generated thick and reflexive descriptions of practice. For each nurse, a narrative of their home-based palliative care practice was co-constructed over a 6-month period through a series of three to five interviews. All interviews were carried by the first author (JLL). During the first interview, each nurse was asked to identify one person from her caseload and describe her nursing practice in this context. Due to the relational nature of the narrative approach (Clandinin, 2013), this conversation engaged the nurses and the researcher in sharing their own experiences. This sharing helped to legitimize experiences, clarify opinions and develop ideas. It was through these exchanges that the researcher was able to gain access to the nurses’ personal reflections, even those considered taboo (Clandinin, 2013). The conversations with the nurses were also structured around general themes, designed according to Sen’s capability approach (Table 1). However, they were not limited to these themes.

Table 1.

Guiding Topics for the Nurse Interviews.

Guiding themes for the interviews
First interview	Subsequent interviews
1. Your idea of palliative care nursing practice 2. Your first contact with the patient and their caregiver(s) 3. Involvement of caregivers, other professionals and community resources in the care given 4. Activities considered meaningful for the life valued by patients and their caregivers 5. Use of the environment’s physical and material resources	1. Does the narrative accurately represent your practice? 2. Evolution of the nursing role with the patient over the last 4 weeks 3. Evolution of the relationship with the patient 4. Evolution of relationships with other actors (caregivers or professionals) 5. Activities considered meaningful for the life valued by patients and their caregivers

After the first interview, the researcher began writing the story by reconstructing the nurse’s story. This writing followed a chronological order, situating and connecting the actors and their interactions in the local, organizational and social spaces (Clandinin & Connelly, 2004). As the interviews progressed, the researcher added his interpretations, supported by empirical studies and theoretical references, to this reconstruction. These additional references were used to stimulate dialogue and deepen reflection during the interviews, and the co-construction of the narratives. A week before the next scheduled interview, the developing story was e-mailed to the nurses. Certain inquiries were highlighted as a starting point for further discussion. During the interviews, the nurses were invited to clarify events, nuance interpretations, and suggest modifications to ensure that the narratives accurately reflected their experiences. All interviews were conducted via the Zoom© application. Each interview was recorded with the nurses’ consent.

Reflexive Writing of a Personal Nursing Practice Narrative

In addition, throughout the co-construction of the nurses’ narratives, the first author (JLL) constructed a story of his own clinical practice as a home-based palliative care nurse. The goal of this story was to make explicit his emerging inquiries, his subjectivity, including the emotions and doubts felt during the interviews, and his learnings as a palliative care home-based nurse and researcher. This reflexive writing exercise drew on the questions he noted in his journal throughout the co-construction of the narratives. This journal was shared and discussed with the co-authors during the writing process in order to further clarify ideas and the reflexive approach. By making these reflections explicit, this story facilitated the transition from interpretive analysis to analytical questioning. This reflexive account contributed to identifying emerging inquiries and tensions, supporting the analytic inquiry and strengthening the credibility of findings (Paillé & Mucchielli, 2021).

Analysis Through Analytical Questioning

Analytical questioning, as described by Paillé and Mucchielli (2021), was used to examine the four narratives and make explicit the mechanisms of home-based palliative care nursing practice that support patients in living a meaningful life until death. This approach relies on a progressive and systematic questioning of the narratives to reveal what structures, shapes, and transforms the practices described. The process unfolded iteratively. First, analytical questions were formulated to operationalize the study’s objectives, drawing on Sen’s capability approach, and Richard et al.’s (2012) model of nursing practice. These guiding questions were then progressively applied to the four narratives, and the analytical framework was refined as insights emerged (Paillé & Mucchielli, 2021). Through this process, the researcher constructed an investigative framework (Table 2), which brought together the evolving questions used to interrogate the narratives in a structured way. Across repeated cycles of questioning and refinement, the researcher produced statements and propositions that gradually made the underlying mechanisms explicit and intelligible (Avenier, 2011; Bender, 2018). To support interpretation, the researcher used diagrams, schematic representations, such as systemic modeling (Gendron & Richard, 2015), and ongoing analytic writing. Throughout the analytic process, the evolving interpretations were regularly presented to the research team. These discussions allowed the three authors to question emerging insights, refine the analytical framework, and reach agreement on the formulation of mechanisms.

Table 2.

Final Investigative Framework for Analysis Through Analytical Questioning.

The goals of palliative care nursing practice
- What projects does nursing practice pursue? - How and why are these projects being pursued?
The relationship to the Other in palliative care nursing practice
- How is the Other represented? - By what means is this representation constructed? - How does time (re)configure this representation?
The relationship to the self in palliative care nursing practice
- How do nurses represent themselves? - By what means and processes is this representation constructed? - How do representations of the Other influence nurses’ conceptions of themselves? - How do representations of organizations and other professionals influence nurses’ conceptions of themselves?
Palliative care nursing practice activities
- By what processes are nurses’ actions constructed?

Ethics

The study was approved by the by the research ethics committee for health and science research of the Université de Montréal (#CERSES-20-165-D). After expressing their initial interest, the participants met with the researcher to discuss the project and to answer their questions. They were then given 1 week to reflect before confirming their participation and signing the informed consent form. Participants were informed of their right to withdraw from the study at any time without consequence. In the event of withdrawal, participants could request that their data be removed from the study. Contact information (phone and e-mail) for the first author was provided for any questions or withdrawal requests. None of the participants chose to withdraw from the study. Before publication, the final narratives were sent to the participants to validate their content and confidentiality. The complete practice narratives have been published in an open-access repository (Leclerc-Loiselle et al., 2023b). Pseudonyms have been used for all participants and individuals mentioned in the transcripts.

Quality Criteria

Rigor was ensured through quality criteria consistent with interpretive description and with the projective constructivist epistemology (Avenier, 2011; Le Moigne, 2021). Epistemological integrity was maintained by ensuring coherence between the constructivist stance, where knowledge is intersubjectively co-constructed, and the methodological choices guiding data generation and interpretation. The reciprocal posture adopted during the co-construction of narratives, along with the researcher’s reflexive writing, contributed to making explicit the intentions, assumptions, and values shaping the inquiry. To that intent, the research team engaged in ongoing reflexive examination of their roles throughout the study. The first author (JLL), who conducted the interviews and had prior experience as a home-based palliative care nurse, kept a reflexive journal for the co-construction of the narratives. This journal documented emerging interpretations, questions, emotional responses, and assumptions that arose during the research process. These reflections were regularly discussed with the co-authors, whose backgrounds in nursing and public health (SG) and medicine (SD) provided complementary perspectives on the developing analysis. These exchanges helped to critically examine interpretations, identify potential oversights, and ensure that the analytic process remained grounded in participants’ narratives. Credibility of representations was supported by purposive and heterogeneous sampling and by the iterative development of the narratives, which allowed participants to review, comment on, and validate emerging interpretations. In line with projective constructivism, credibility was conceived in terms of the viability of the knowledge produced, its usefulness for understanding lived practice and supporting meaningful action (von Glasersfeld, 2001). Analytic logic was strengthened through transparent documentation of analytic steps, especially the progressive refinement of the investigative framework. Finally, interpretive authority was enhanced through sustained participant engagement, the use of illustrative excerpts, and ongoing dialogue with co-authors.

Results

Home-based palliative care nursing practice comprises four mechanisms that support patients in living a meaningful life until death. The four mechanisms are: (1) Goals: Navigating between a valued life and norms; (2) Relationship to the Other: Recognizing patients simultaneously as both capable and vulnerable¹; (3) Relationship to the self: Reflexively engaging with one’s practice; and (4) Activities: Being creatively present. These four mechanisms, which will be described in turn, are shown in Figure 1. These four mechanisms should not be understood as independent components of practice. Rather, they are interrelated dimensions that shape how nurses support patients in living a meaningful life until death. The goals pursued by the practice are interpreted through the nurse’s relational understanding of the Other as both capable and vulnerable and through ongoing reflexive engagement with one’s professional stance. Creative presence represents the concrete expression of this relational and reflexive positioning in action. Through their interaction, these mechanisms form a dynamic process through which nursing practice contributes to sustaining capabilities for patients at the end-of-life.

Figure 1.

Modeling of palliative care nursing practice as a process that support patients in living a meaningful life until death.

Goals: Navigating Between a Valued Life and Norms

In palliative care nursing practice, two goals are pursued. The first goal, a life valued by the Other, implicates nursing practice in the plans that patients or caregivers chose to share with nurse:

I make sure that the people I care for live according to their wishes. These wishes can be many and varied. I always ask them if there are things they want to do or achieve before they die. [. . .] We try to build bridges and resolve conflicts. It’s always different, always unique. – Excerpt from Marie’s story

Plans vary between individuals and change over time. By way of this goal, the nurse recognizes the life as belonging to the Other. The nurse seeks to discover and to be open to this life. Acknowledging a great diversity in valued lives, nurses demonstrate a willingness to support the Other in their life plans until death. Whether this means family plans, personal wishes or a search for inner peace, nurses place value on the Other’s plan. As mentioned in Anna’s story: “I aim to be there to enable people to realize what they value, their wishes whatever they may be.”

In nursing practice, the meaning of a valued life can vary greatly between individuals and over time. Although this variability can sometimes be a source of frustration or surprise, nurses try to acknowledge it:

Sometimes [individual wishes are] very simple. Maybe it’s eating pizza or seeing your cat. [. . .] But if that’s what they want, and they’re prepared to pay the price the next day. . . Other times it’s the presence of long-lost relatives. . . [. . .] We try as much as possible to adapt to them. . . – Excerpt from Marie’s story

The second goal, related to norms, is defined by what is collectively understood as “good” in the situations encountered. It appears that norms are inherently imposed on nurses in their professional practice, including through organizational rules, palliative care principles and nursing ethics.

Specifically, organizational rules place local expectations on nurses. These organizational rules come with local norms that nurses must comply with. They structure the actions to be carried out, information to be transmitted and recorded, available resources, and types of support for caregivers. As mentioned in Marie’s story: “I think I was drilled by my organization [i.e., strongly instructed to follow these principles]. Not enduring pain, not tolerating significant safety risks, having people around [patients].”

These norms are also expressed in relation to certain palliative care principles. Whether in relation to the presence of pain or illness-related symptoms or to the emphasis on quality of life, these norms are conveyed via the nurses’ representations of palliative care, which transcend organizations. In her story, Anna mentions: “I’ve learned what good palliative care can do to create possibilities that people didn’t consider before. For example, by acting on symptoms management, palliative care creates possibilities to live, daily, the life that remains.”

Finally, these norms also stem from nursing-related ethics. In terms of skills and scope of practice, these norms symbolize the profession’s caregiving obligations.

Nursing practice thus appears to navigate between the two goals: a life valued by the Other and norms. These two goals drive nurses’ practice in different ways. Tensions can arise between the two goals when the life valued by the Other is at odds with the norms that structure nursing practice:

With one lady, despite having a large family, I felt she was left to care for herself. No one was able to get actively involved in her care. She wanted to die at home, that was her choice, but I didn’t think we could do it with the resources available. – Excerpt from Anna’s story

In light of these tensions, nurses may find that it becomes legitimate to take actions right up to the limit of what is allowed. Plans may be formed in response to the patient’s wishes, and these are usually of a positive nature. Nurses sometimes feel that organizations ignore these plans because they are not deemed compatible with their mandate. In a kind of defiance of organizational structures, nurses sometimes try to pursue these plans outside the framework defined by the organization. Access to certain non-prescription drugs, the consumption of alcohol or cigarettes or participation in social events are examples given by nurses.

Relationship to the Other: Recognizing Patients Simultaneously as Both Capable and Vulnerable

In the second mechanism, the Other is conceived of as both capable and vulnerable.

Through what Marie described as “their shrinking wishes” or desires that focus on themselves and their caregivers, the Other is considered to be living until they die. Acknowledging the capable Other primarily means recognizing their ability to choose the life they would like to lead, according to their values:

I often say that people die as they live. There will be no transformation, people don’t change radically at the end-of-life. . . [. . .] I must follow them in their story, in their desires, in their choices. They make their choices. Some I don’t always understand, but choices, nonetheless. – Excerpt from Marie’s story

Acknowledging this ability to choose, nurses even make demands of the patient and their caregivers, including a duty to express themselves and communicate their needs and wishes:

We need to find common ground with the family [. . .]. Their continued presence is essential to identify needs and decide on strategies to meet the wishes of their loved one. We must work together, see where we can balance and see where we can come together. – Excerpt from Anna’s story

The Other, as conceived of by the nurse, must therefore express their individuality, share their history or describe the future they envision. As mentioned in Jade’s story: “[Over time], I get to know the Other, by letting him tell me his story, his desires, his wishes, the involvement desired by his family. [I give him] time to tell me.” – Excerpt from Jade’s story.

Although they recognize the capable Other, nurses also conceive of the vulnerable Other who must rely in part on nurses to live according to the choices they value. Of course, the end-of-life is a unique moment in human existence, and nurses find themselves working with people for whom death would normally have been unimaginable. Acknowledging identity-related questions or a search for meaning, nurses see the Other as vulnerable and having specific needs.

Not everyone conceives of their own mortality, or that of their loved ones. I often see an inconceivability of death. I describe it as a state where it’s inconceivable for the person to conceive that they are dying. They don’t deny that it’s going to happen, they just can’t conceive it; conceive that the end is approaching and that a new chapter in their story is being created. It’s a loss of identity, a loss of self. It’s hard to accept that my individuality is going to dissolve. – Excerpt from Marie’s story

For nurses, these needs expressed by the Other, whether physical or psychosocial, justify their presence and their expertise:

My job is to ask myself [what people want]. To come up with recommendations and proposals that are sensitive to their realities and beliefs. This also must be done recognizing that I’m a nurse, with scientific knowledge and expertise that I have to put to good use. – Excerpt from Anna’s story

Relationship to the Self: Reflexively Engaging With One’s Practice

The nurses reported that they had gradually developed self-reflexivity over the course of their experiences. This self-reflexivity included a growing awareness of the contribution of nursing expertise, particularly when the wishes shared by the Other had been fulfilled or when actions were being taken to that end. This expertise, encompassing both clinical and relational dimensions, distinguishes nurses from other members of the care team:

I have this professional knowledge, this expertise that informs my educational interventions or decision support. I [know] the symptoms of the end-of-life. I know where we are in the trajectory and I know what to do to make the person more comfortable. I have this expertise [that others] don’t have, especially when they only see palliative care as preparation for death. – Excerpt from Jade’s story

However, the nurses reflected critically on their own knowledge as experts. They pointed out that the agreed or routine benchmarks promoted by organizations, while evoking a reassuring certainty, were not always consistent with the goal being pursued:

I see myself telling certain patients that they need to be given opiates [for symptom relief], when in reality they may not. . . I question my expectations, even though I value uniqueness. . . There’s still an organization to follow, but how far? With this framework [of organizational expectations], am I listening properly [to the patient]? – Excerpt from Marie’s story

This self-reflexivity also brought about a realization of powerlessness as a component of palliative care nursing practice. As a sign of the nurses’ inability to act according to their own values, this powerlessness could sometimes be frustrating or shocking for nurses confronted with the limitations of their actions:

Although it’s frustrating when [what] we want [isn’t pursued], I tell myself that we’re there for them. I’m not there to make recommendations and then force them to do things they don’t want to do. [. . .] It’s a difficult posture, a fine line between directing and supporting, which I’m still learning to act in my daily practice. – Excerpt from Anna’s story

However, accepting this powerlessness was also described as a means, acquired through experience, to develop confidence in oneself and in the choices made by the Other for their own life.

Activities: Being Creatively Present

Creative presence is the mechanism at the intersection of the previous three. Through creative presence, nursing action is expressed via diverse and often unique care situations, especially those presenting cultural, social or physical particularities (see Figure 1). Rather than routine or protocol actions, nurses may come up with alternatives that are consistent with their own individuality, their conception of the Other and the specific context. Two ways of acting with creative presence have been identified: sensitive action and slow action.

Firstly, acting with creative presence involves an expression of nurses’ sensitivity in allowing themselves to recognize, embrace and feel the experience of the Other. They may express grief or sadness but also pride or even attachment to the Other. The concept of sensitivity highlights the reciprocity of care between the nurse and the Other. This sensitivity underpins a creative presence, as it enables care to be conceived within a diversity of expressions and ways of being:

Palliative care mobilizes my sensitive being [through] my sensations, emotions, intuitions, and fears, which are the fruit of my experiences [. . .] It is an expression of my authenticity [that invites] me to consider presence, sharing emotions, listening, speaking and compassion as care. – Excerpt from Jérôme’s story

Secondly, acting with creative presence invites slow action. The nurses talked about the idea of taking the time, as part of their practice, to gather the information needed to get to know the Other and their life story. This implies a curiosity about the Other, which encourages a practice consistent with the Other’s wishes. This slow action also manifests in nurses’ attempts to find opportune moments for care. Whether breaking bad news, building a relationship or maintaining hope, nurses take the time to identify the right moments and tailor their actions accordingly:

[In my practice, there are] moments of care. Significant moments in which time dominates. Entering palliative care, that first encounter between the person being cared for and myself, is one such moment. [It’s a moment] when I have to build a relationship of trust with the Other. It’s a time when I have to take the time to reflect and get care off to a good start. – Excerpt from Jade’s story

These propitious moments, as identified by the nurses, go against the prescribed pace of care organizations by instead structuring nursing action around the time-scales of the patient and their idea of a valued life. Throughout the narratives, this became apparent particularly with regard to negotiations with managers for the allocation of aid, in the solicitation of partner organizations, in the overlap of roles with other members of the interprofessional team or in adjustments to continuity of care:

[One patient] even asked me to close his at-home file, so that he could [get treated here]. If it gives him a sense of control over his life, over his illness, by being able to choose his appointment times, I think it’s great. I will probably receive a request [to reopen the file later] – Excerpt from Jade’s story

Discussion

In this study, four mechanisms enabling the conception of home-based palliative care nursing practice as a process that supports patients in living a meaningful life until death were described. Our findings point to a practice that is continually being transformed. It forms gradually through the nurses’ creative presence, which is constructed by navigating between the Other’s representations of a valued life and norms, through a conception of the Other as both capable and vulnerable, and through self-reflexivity. Our findings suggest that sensitive and slow action allows nurses to pursue a practice that is consistent with the life valued by the Other.

These findings lead to three observations on home-based palliative care nursing practice. First, they illustrate the value nurses place on the Other and their choices. In the narratives, nurses described patients as individuals whose lives retain meaning and value even in the context of severe illness. This recognition involves viewing the Other as both capable and vulnerable. As Svandra (2016) argues in his discussion on care ethics, the nurse–patient relationship is inherently asymmetrical because nurses hold professional knowledge and responsibility. However, this asymmetry does not eliminate reciprocity within the relationship. Rather, reciprocity emerges through recognition and responsiveness between the persons involved. In situations of illness, patients often experience a reduction in their ability to act or to pursue what matters to them. This vulnerability calls for the intervention of caregivers, particularly nurses, whose actions aim to support or restore the patient’s capacity to act and participate in their own life trajectory (Svandra, 2016). Within this relational dynamic, care involves acknowledging both the patient’s fragility and their enduring capacity for meaning and choice. From this perspective, nursing practice can be understood as engaging with patients as persons who remain capable of valuing and orienting their lives, even while facing increasing vulnerability. This relational orientation resonates with the emphasis placed in palliative care on attentiveness to patients’ values and preferences. Hemberg and Bergdahl (2020) similarly describe palliative care relationships as processes of “co-creation,” in which patients and nurses jointly shape care practices. However, our findings suggest that this reciprocity extends beyond caregiving activities. It involves an ongoing relational engagement through which nurses attend to patients’ values, preferences, and evolving possibilities for action. In this sense, nursing practice contributes not only to responding to patients’ needs, but also to sustaining the conditions that allow individuals to continue orienting their lives according to what they consider meaningful as they approach the end-of-life.

Secondly, and as a continuation of the idea of reciprocity, our study highlights the nurses’ sensitivity as a means of self-reflexivity and of understanding the Other. Expressing sensitivity is a way of connecting oneself and the Other, blurring the boundaries reinforced by organizational norms. Recent work by Niederhauser et al. (2025) conceptualizes emotions as a “dynamic compass” that guides clinicians in navigating palliative care encounters. Rather than being a risk for the nurse, considering the grief or sense of loss nurses may experience (Abrams et al., 2019), sensitivity in nursing practice may be a way of recognizing the Other. This is illustrated in our findings through nurses’ reflexivity with regard to their own powerlessness. Instead of being a source of suffering, this powerlessness was more a vector of engagement with the Other, enabling nurses to develop their conception of the Other as capable of making choices for their life. Some authors have also identified powerlessness as a feeling experienced by palliative care nurses (Karlsson et al., 2010). However, they see powerlessness as an ethical or organizational problem. Conversely, our findings argue the need to situate powerlessness as a generator of self-reflexivity. This reflexive stance mirrors Niederhauser et al. (2025)’s observation that emotional awareness helps clinicians connect with their own and patients’ emotions, enhancing communication and sustaining the relational quality of care. In this sense, sensitivity and powerlessness appear not as vulnerabilities, but as conditions that enable relational openness without the need to alter the Other.

Thirdly, creative presence is described as the way in which nurses connect with the Other and the organization in order to support patients living a meaningful life until death. In our study, nurses recognized that meaningful action sometimes required moving beyond the pace, routines, or expectations prescribed by the organization. This resonates with Glasdam et al. (2020), who describe this practice as “silent resistance” (p. 150), wherein nurses subtly adapt their work to preserve the moral or relational dimension of their practice. Through impromptu visits with patients or their caregivers, or by altering the caregiving schedule, nurses may defy organizational structures by pursuing their own conception of good palliative care nursing practice (Glasdam et al., 2020; Hold, 2015). This also resonates with recent research documenting how nurses enact micro-autonomies or engage in quiet, non-confrontational forms of resistance to safeguard patient well-being when protocols constrain action (Al Abdulqader et al., 2025). Our findings also suggest the existence of such activities, which nurses carry out with the goal of engaging their practice toward the life, deemed meaningful by the patients. In our study, this action takes the shape of sensitive action and slow action, which allowed nurses to adapt their presence, timing, and relational engagement to patients’ rhythms and priorities.

On the theoretical level, our proposal is based on Sen’s concepts of capabilities. This concept, developed in the field of economics, were not intended to describe caregiving practices. Rather, they were part of a justice approach to formulating social indicators of human development (Sen, 2011), critiquing people’s living conditions and their engagement in individual and social change. This concept opens the way to considering the various dimensions that shape human experience, and their interdependencies, situating caregiving practices within the multiplicity of these relationships. Expressed in the concrete reality of the Other, conceiving nursing practice as a conversion process acknowledges its complexity, described and illustrated by the four mechanisms. Thus, while the proposal is not a typical application of Sen’s ideas, his thinking would appear to be a fertile theoretical tool for recognizing caring nursing practices.

The mechanisms identified in this study can be used as reflective tools in clinical practice and education. Framing palliative nursing practice as navigating between a valued life and norms invites teams to explicitly discuss which goals are prioritized in complex situations and to recognize when organizational rules constrain patients’ valued projects. Conceptualizing patients as both capable and vulnerable can support communication training that emphasizes shared decision-making while acknowledging existential fragility. Highlighting reflexive engagement with one’s practice underscores the importance of clinical supervision and educational spaces where feelings of powerlessness and uncertainty can be discussed as integral to palliative nursing rather than as individual shortcomings. Finally, the notion of creative presence, expressed through sensitive and slow action, draws attention to temporal and organizational conditions that either enable or inhibit capability-promoting care, thereby offering a basis for dialogue with managers and policy makers.

There are, however, certain limits to consider in this study. It was carried out via a narrative approach using a co-construction process. The narratives are partial, situated and imperfect representations of lived history (Caine et al., 2013), and the findings cannot be dissociated from them. Without claiming to generalize the results, the mechanisms offer researchers and clinicians a representation for a better understanding of the caregiver’s place and reflexivity in palliative care nursing practice. As the stories were co-constructed with the nurses, the experiences of the other actors, such as patients, caregivers and colleagues within the organization, can only be assumed. While helpful for understanding practice from the nurses’ unique point of view, the narratives would benefit from being complemented by other methodological approaches, such as participant observation or a longitudinal case study, as well as by contributions from other actors in the system. In addition to providing data on the day-to-day nursing practice, these types of studies would enable dialogue, and even comparison. This would allow us to refine our reflexive understanding of this practice and the challenges it represents for nurses. Moreover, the relative homogeneity of the sample should also be considered. The three participating nurses were women, and two were within a similar age range, while the first author (JLL), who contributed the reflexive narrative, was a man. Although variation in demographic characteristics was not a central objective of this narrative inquiry, gendered dynamics and socialization may influence relational and caring practices in nursing, especially regarding partnership-building, and collaborative approach to decision-making (Tong et al., 2023). Age- or gender-related differences were not specifically explored in the analysis, which focused instead on identifying mechanisms emerging from the co-constructed narratives. Future research could therefore benefit from examining how gender or generational experiences may shape home-based palliative care nursing practice.

Conclusion

These findings suggest that palliative care nursing practice should be understood as a reflexive and context-sensitive process. By combining sensitivity, reciprocity, and creative presence, nurses can navigate tensions between patients’ valued life projects and normative expectations while remaining attentive to organizational and social dynamics. Taken together, these mechanisms offer a conceptual lens for understanding palliative nursing practice as a morally engaged and capability-oriented endeavor that seeks to create real possibilities for people to live a meaningful life until death. By naming and modeling these mechanisms, this study provides nurses, educators, and leaders with action-oriented concepts that can support reflection on practice and inform efforts to align home-based palliative care with the diverse and dynamic lives of those who are dying.

Footnotes

Acknowledgements

The authors would like to thank Professor Hubert Doucet and Madame Lucille Juneau for their critical reflections throughout the research project. They would like to thank Confluence Communication and Zoë Blowen-Ledoux for their support and assistance in translation of the manuscript.

ORCID iD

Jérôme Leclerc-Loiselle

Ethical Considerations

The study was approved by the research ethics committee for health and science research of the Université de Montréal (#CERSES-20-165-D).

Consent to Participate

All participants in this study provided informed written consent to participate.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The first author (JLL) received scholarships from the following: Fonds de recherche du Québec–Santé and Ministère de l’Enseignement Supérieur–Université de Montréal, during his doctoral program that supported this work.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The stories generated and analyzed for the current study are publicly available on FigShare: . The data that support the creation of the stories are available, from the corresponding author, upon reasonable request.

Notes

Author Biographies

Jérôme Leclerc-Loiselle, PhD, RN is an assistant professor in the School of Nursing at the University of Sherbrooke, Sherbrooke, Québec, Canada. At the time of the study, he was a PhD student at the University of Montréal, Faculty of Nursing, Montréal, Québec, Canada.

Sylvie Gendron, PhD, RN is a professor at the Faculty of Nursing at the University of Montréal, Montréal, Québec, Canada.

Serge Daneault, PhD, MD is a palliative care physician and researcher at the Research centre of Institut universitaire de gériatrie de Montréal, Montréal, Canada and at the Integrated University Health and Social Services Centre of Centre-Sud-de-l’Île-de-Montréal, Montréal, Canada.

References

Abel

Kellehear

(2016). Palliative care reimagined: A needed shift. BMJ Supportive & Palliative Care, 6(1), 21–26. https://doi.org/10.1136/bmjspcare-2015-001009

Abrams

Vandrevala

Samsi

Manthorpe

(2019). The need for flexibility when negotiating professional boundaries in the context of home care, dementia and end of life. Ageing and Society, 39(9), 1976–1995. https://doi.org/10.1017/S0144686X18000375

Al Abdulqader

A. K.

Ali

S. I.

Alamoudi

F. A.

Shaban

. (2025). Still just the nurse? A critical inquiry into nurses’ struggles for autonomy in interprofessional hospital teams. BMC Nursing, 24(1), 1–13. https://doi.org/10.1017/S1478951524001883

Alanazi

M. A.

Shaban

M. M.

Ramadan

O. M. E.

Zaky

M. E.

Mohammed

H. H.

Amer

F. G. M.

Shaban

(2024). Navigating end-of-life decision-making in nursing: A systematic review of ethical challenges and palliative care practices. BMC Nursing, 23(1), Article 467. https://doi.org/10.1186/s12912-024-02087-5

Avenier

M.-J.

(2011). Les paradigmes épistémologiques constructivistes: Post-modernisme ou pragmatisme? [Constructivist epistemological paradigms: Postmodernism or pragmatism?]. Management & Avenir, 43(3), 372–391. https://doi.org/10.3917/mav.043.0372

Avenier

M.-J.

(2018). La stratégie « chemin faisant » revisitée 20 ans après [The “learning along the way” strategy revisited twenty years later]. In Fabbe-Costes

Gialdini

(Eds.), Stratégie organisationnelle par le dialogue [Organizational strategy through dialogue] (pp. 43–61). Economica.

Bender

(2018). Models versus theories as a primary carrier of nursing knowledge: A philosophical argument. Nursing Philosophy, 19(1), Article e12198. https://doi.org/10.1111/nup.12198

Caine

Estefan

Clandinin

D. J.

(2013). A return to methodological commitment: Reflections on narrative inquiry. Scandinavian Journal of Educational Research, 57(6), 574–586. https://doi.org/10.1080/00313831.2013.798833

Clandinin

D. J.

(2013). Engaging in narrative inquiry. Left Coast Press.

10.

Clandinin

D. J.

Connelly

F. M.

(2004). Narrative inquiry: Experience and story in qualitative research. Wiley.

11.

Doucet

(2020). La contribution de l’approche par les capabilités d’Amartya Sen à la pratique professionnelle en santé mentale: Une analyse éthique [Amartya Sen’s capability approach and professional practice in mental health: An ethical analysis]. Canadian Journal of Bioethics/Revue Canadienne de Bioéthique, 3(2), 93–101. https://doi.org/10.7202/1073551ar

12.

Frahsa

Abel

Gelius

Rütten

, & the Capital4Health Research Consortium. (2021). The capability approach as a bridging framework across health promotion settings: Theoretical and empirical considerations. Health Promotion International, 36(2), 493–504. https://doi.org/10.1093/heapro/daaa076

13.

Gendron

Richard

(2015). La modélisation systémique en analyse qualitative: Un potentiel de pensée innovante [Systemic Modeling in Qualitative Analysis: A Potential for Innovative Thinking]. Recherches Qualitatives, 17, 78–97.

14.

Glasdam

Ekstrand

Rosberg

van der Schaaf

A.-M.

(2020). A gap between the philosophy and the practice of palliative healthcare: Sociological perspectives on the practice of nurses in specialised palliative homecare. Medicine, Health Care & Philosophy, 23(1), 141–152. https://doi.org/10.1007/s11019-019-09918-2

15.

Graven

Timm

(2019). Hospice philosophy in practice. Toward an authentic death. OMEGA–Journal of Death and Dying, 83(2), 325–342. https://doi.org/10.1177/0030222819852850

16.

Hemberg

Bergdahl

(2020). Dealing with ethical and existential issues at end of life through co-creation. Nursing Ethics, 27(4), 1012–1031. https://doi.org/10.1177/0969733019874496

17.

Hold

J. L.

(2015). A good death: Narratives of experiential nursing ethics. Nursing Ethics, 24(1), 9–19. https://doi.org/10.1177/0969733015602051

18.

Karlsson

Roxberg

Silva

A. B. d.

Berggren

(2010). Community nurses’ experiences of ethical dilemmas in palliative care: A Swedish study. International Journal of Palliative Nursing, 16(5), 224–231. https://doi.org/10.12968/ijpn.2010.16.5.48143

19.

Kuosmanen

Hupli

Ahtiluoto

Haavisto

(2021). Patient participation in shared decision-making in palliative care–an integrative review. Journal of Clinical Nursing, 30(23–24), 3415–3428. https://doi.org/10.1111/jocn.15866

20.

Le Moigne

J.-L

. (2021). Les épistémologies constructivistes [Constructivist epistemologies]. Humensis.

21.

Leclerc-Loiselle

Gendron

Daneault

(2024). Nursing activities for health promotion in palliative home care: An integrative review. Palliative Care and Social Practice, 18, 1–18. https://doi.org/10.1177/26323524241235191

22.

Leclerc-Loiselle

Gendron

Daneault

(2023a). L’idée des capabilités de Sen pour concevoir l’agir complexe de la pratique infirmière [Sen’s capability approach to conceptualizing the complex nature of nursing practice]. Aporia, 15(2), 27–39. https://doi.org/10.18192/aporia.v15i2.6785

23.

Leclerc-Loiselle

Gendron

Daneault

(2023b). Récits de pratiques infirmières pour la santé en soins palliatifs en fin de vie à domicile [Narratives of Health-oriented nursing practice in home-based end-of-life palliative care] [Data set]. Figshare. https://doi.org/10.6084/m9.figshare.22215502

24.

Lessard

É.

Marcoux

. (2020). Quelles politiques pour structurer l’offre de soins palliatifs à domicile au québec? [What policies should structure the provision of home-based palliative care in Quebec?]. Les Cahiers Francophones de Soins Palliatifs, 20(2), 59–68.

25.

Lolich

Lynch

(2017). No choice without care: Palliative care as a relational matter, the case of Ireland. Soundings: An Interdisciplinary Journal, 100(4), 353–374. https://doi.org/10.5325/soundings.100.4.0353

26.

Nasu

Fukahori

Miyashita

(2022). Long-term care nurses’ perceptions of a good death for people with dementia: A qualitative descriptive study. International Journal of Older People Nursing, 17(3), Article e12443. https://doi.org/10.1111/opn.12443

27.

Niederhauser

Egloff

Eychmueller

Zambrano

S. C.

(2025). Adapting to the emotional complexity of palliative care communication: Palliative care clinicians’ experiences. Palliative & Supportive Care, 23, Article e43. https://doi.org/10.1017/S1478951524001883

28.

Meier

E. A.

Gallegos

J. V.

Thomas

L. P.

Depp

C. A.

Irwin

S. A.

Jeste

D. V.

(2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261–271. https://doi.org/10.1016/j.jagp.2016.01.135

29.

Morgan

Gazarian

(2023). A good death: A synthesis review of concept analyses studies. Collegian, 30(2), 236–246. https://doi.org/10.1016/j.colegn.2022.08.006

30.

Paillé

Mucchielli

(2021). L’analyse qualitative en sciences humaines et sociales [Qualitative analysis in the humanities and social sciences] (5th ed.). Armand Colin.

31.

Patton

M. Q.

(2014). Qualitative research & evaluation methods: Integrating theory and practice (4th ed.). Sage Publications.

32.

Pereira

R. A. M.

Sousa Valente Ribeiro

P. C. P.

(2023). Ways and means to comfort people at the end of life: How is the nurse a privileged player in this process? Palliative Care and Social Practice, 17, 1–16. https://doi.org/10.1177/26323524231182730

33.

Pernet

Mollo

Falzon

(2018). Développer les capabilités des patients pour coproduire un soin sûr et efficace [Developing patients’ capabilities to co-produce safe and effective care]. Activités, 15(1), 1–28. https://doi.org/10.4000/activites.3065

34.

Radbruch

De Lima

Knaul

Wenk

Ali

Bhatnaghar

Blanchard

Bruera

Buitrago

Burla

Callaway

Munyoro

E. C.

Centeno

Cleary

Connor

Davaasuren

Downing

Foley

Goh

Gomez-Garcia

. . . Pastrana

(2020). Redefining palliative care-A new consensus-based definition. Journal of Pain and Symptom Management, 60(4), 754–764. https://doi.org/10.1016/j.jpainsymman.2020.04.027

35.

Richard

Gendron

Cara

(2012). Modélisation de la pratique infirmière comme système complexe: Une analyse des conceptions de théoriciennes en sciences infirmières [Modeling nursing practice as a complex system: An analysis of nursing theorists’ conceptualizations]. Aporia, 4(4), 25–39. https://doi.org/10.18192/aporia.v4i4.2909

36.

Robeyns

(2005). The capability approach: A theoretical survey. Journal of Human Development, 6(1), 93–117. https://doi.org/10.1080/146498805200034266

37.

Robinson

Gott

Gardiner

Ingleton

(2017). Specialist palliative care nursing and the philosophy of palliative care: A critical discussion. International Journal of Palliative Nursing, 23(7), 352–358. https://doi.org/10.12968/ijpn.2017.23.7.352

38.

Sen

(2011). The idea of justice. Harvard University Press.

39.

Svandra

(2016). Repenser l’éthique avec Paul Ricœur. Le soin: Entre responsabilité, sollicitude et justice [Rethinking ethics with Paul Ricoeur: Between responsability, care, and justice.]. Recherche en Soins Infirmiers, 124(1), 19–27. https://doi.org/10.3917/rsi.124.0019

40.

Thorne

(2016). Interpretive description: Qualitative research for applied practice. Taylor & Francis.

41.

Tong

L. K.

Zhu

M. X.

Wang

S. C.

Cheong

P. L.

Van

I. K.

(2023). Gender similarities and differences in the perception of caring among nurses during the COVID-19 pandemic: A mixed-methods study. BMC Nursing, 22(1), Article 115. https://doi.org/10.1186/s12912-023-01267-z

42.

Velić

Qama

Diviani

Rubinelli

(2023). Patients’ perception of hope in palliative care: A systematic review and narrative synthesis. Patient Education and Counseling, 115, Article 107879. https://doi.org/10.1016/j.pec.2023.107879

43.

von Glasersfeld

. (2001). The radical constructivist view of science. Foundations of Science, 6(1), 31–43.

44.

Zaman

(2025). Cultural assumptions and the good death: Rethinking global frameworks. Medical Humanities, 51(2), 296–300. https://doi.org/10.1136/medhum-2024-013062

45.

Zaman

Inbadas

Whitelaw

Clark

(2017). Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’. Social Science and Medicine, 172, 72–79. https://doi.org/10.1016/j.socscimed.2016.11.012