The dilemma of palliative care nurses: A phenomenological inquiry into their lived experience with humanistic care

doi:10.21203/rs.3.rs-5017508/v1

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The dilemma of palliative care nurses: A phenomenological inquiry into their lived experience with humanistic care

https://doi.org/10.21203/rs.3.rs-5017508/v1

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Background: Previous research has delineated the roles and functions of palliative care nurses, but a gap remains in comprehending their lived experiences in delivering humanistic care. These nurses establish deep connections with patients and families, encountering emotional distress while witnessing their suffering. This emotional strain frequently leads to compassion fatigue and burnout. This study was conducted to fill the literature gap by examining the humanistic nursing practices and the dilemmas that palliative care nurses face when providing humanistic care.

Methods: A descriptive phenomenological approach was adopted. Individual semi-structured interviews were conducted with 17 palliative care nurses working in Hong Kong public hospitals. They were invited to share their lived experiences of providing humanistic care in palliative care settings. Interview findings were analyzed using Van Kaam’s control explication method.

Results: The findings of this study revealed both positive and negative experiences encountered by palliative care nurses in their humanistic interactions with patients and families. Nurses emphasized the significant impact of their presence and care on patients and families, highlighting the importance of preserving dignity and alleviating suffering. The study underscored the challenges nurses face in forming genuine connections amid various constraints, such as heavy workloads and patient-related obstacles that impede compassionate engagement. Four themes emerged, showcasing dilemmas confronted by nurses: juggling between "creating bonds" versus "maintaining distance", choosing to "treasuring life more" versus "giving up life more easily", balancing "patients' interests" versus "families' interests", and weighing "patient rights" versus "public interest". The findings illuminated the complexities and emotional burden inherent in delivering humanistic care in palliative care.

Conclusions: The study's findings have offered deeper insights into Paterson and Zderad's Humanistic Nursing Theory, shedding light on the existential aspects of humanistic nurse-patient interactions. The study has uncovered the intricacies of the theory's fundamental elements, including genuine presence, authentic self-awareness, and the realization of potential in caregiving. It highlights the necessity for improved support and training for palliative care nurses, advocating for enhanced education and practice to navigate the complexity of end-of-life care and enhance the understanding of humanistic nursing principles.

Humanistic nursing

Palliative Care

Phenomenology

Advancements in medical science and technology have led to a rising aging population and, consequently, an increased demand for palliative care [1]. According to the World Health Organization [2], palliative care embodies an approach aimed at enhancing the quality of life for patients and their families who are dealing with challenges associated with life-threatening illnesses, covering physical, psychological, social, and spiritual dimensions. This approach is formally recognized as a fundamental right to health, and should be provided through integrated health services tailored to the unique needs and preferences of each individual [2].

Nurses, as the primary caregivers in closest proximity to patients and the largest healthcare workforce offering continuity of care, are viewed as pivotal stakeholders in palliative care [1]. Their constant attention to patients' basic needs, along with their extensive and regular interactions, has facilitated the development of a unique bond between nurses and patients [3]. This has naturally positioned them as key points of contact for patients, families, and other healthcare professionals, contributing to their role as patient advocates [3]. They promote patient and family well-being, advocate for their best interests, and ensure that their rights are protected, forming the foundation for delivering humanistic care [3, 4].

Previous studies have outlined the challenges faced by palliative care nurses in providing humanistic care. Humanistic care encompasses fundamental elements such as compassion, empathy, patient presence, prioritizing patient needs, and fostering actualization of goals [5, 6]. Palliative care nurses often confront demanding scenarios, including the requirement to address the complex needs and critical end-of-life choices that are crucial for patients and their families [3, 7]. These challenging situations can make it difficult for palliative care nurses to consistently deliver the desired level of humanistic care at work.

While providing humanistic care to critically ill and dying patients, palliative care nurses cultivate strong bonds with both the patients and their families [8]. However, witnessing the suffering of patients and families can lead nurses to experience intense feelings of loss, powerlessness, and distress [9]. Nurses have described palliative care as involving "intense emotional nursing work at the point of medical futility" [10 pp.1]. The emotional burden of these experiences can contribute to compassion fatigue and burnout among palliative care nurses [1, 8].

Existing research has predominantly focused on outlining the roles and responsibilities of palliative care nurses. However, there is a significant gap in understanding the lived experiences of these nurses in delivering humanistic care [3, 4]. This study aimed to uncover the lived experiences of palliative care nurses as they engaged in humanistic interactions with patients and their families, with the goal of deepening the understanding of humanistic nursing practices.

This study employed a descriptive phenomenological approach based on the belief that the essential nature of an issue, namely humanistic care, can only be fully captured by eliciting detailed narratives of the lived experiences of the individuals involved, namely palliative care nurses [11].

Sample and setting

A total of 17 frontline nurses working in palliative care settings at ten public hospitals in Hong Kong were recruited using the snowball sampling approach. The participants included nurses of varying ranks and years of work experience to capture a diverse spectrum of perspectives [11]. Table 1 presents an overview of the participant characteristics.

Table 1

Characteristics of participants (N = 17)
Code	Age	Gender	Rank	Years since graduation	years of work experience in palliative care
1	40	Female	Registered Nurse	20 years	16 years
2	25	Female	Registered Nurse	4 years	2 years
3	44	Female	Registered Nurse	22 years	16 years
4	36	Female	Registered Nurse	15 years	6 years
5	49	Female	Advanced Practice Nurse	29 years	20 years
6	38	Female	Registered Nurse	14 years	8 years
7	26	Female	Registered Nurse	3 years	1 year
8	34	Female	Enrolled Nurse	8 years	4 years
9	44	Female	Registered Nurse	21 years	16 years
10	40	Female	Registered Nurse	20 years	12 years
11	48	Female	Registered Nurse	24 years	20 years
12	33	Female	Registered Nurse	8 years	6 years
13	50	Female	Advanced Practice Nurse	30 years	26 years
14	48	Female	Registered Nurse	28 years	24 years
15	28	Female	Enrolled Nurse	8 years	4 years
16	39	Female	Registered Nurse	15 years	10 years
17	50	Female	Registered Nurse	30 years	20 years

Data collection

Data were collected through individual semi-structured interviews conducted from April 2020 to January 2021. Due to the COVID-19 outbreak in Hong Kong at the time, the interviews were carried out using an online video conferencing platform. The interviews ranged from 50 to 90 minutes in duration, and began by asking participants to share their lived experiences of providing humanistic care as palliative care nurses. Subsequent questions explored the nurses' positive and negative experiences related to specific aspects of their work, such as their relationships with patients, and their partnerships with families and other healthcare professionals. Table 2 presents the interview guide. The study received ethical approval from the university where the first author was based, and written consent was obtained from the participants prior to the commencement of the study.

Table 2

Interview guide
1. How do you perceive the experience of providing humanistic care in your current work setting?
2. How would you describe your relationships or interactions with patients and their families?
3. How would you describe your collaborative efforts with others in delivering humanistic care?
4. From your perspective, what impedes you from delivering humanistic care?
5. From your perspective, what enables you to provide humanistic care?
6. From your viewpoint, how should nurses be prepared for delivering humanistic care?

Data analysis

The interview findings were transcribed into verbatim transcripts and analyzed using Van Kaam's controlled explication method [12]. This method entailed a systematic process of identifying and categorizing meaningful descriptions, reducing redundancy, refining vague descriptions, and clustering the descriptions to derive common themes and elements characterizing the palliative care nursing experience. Throughout the analytical process, perspectives from nurses with varying ranks and years of experience were compared to reveal both commonalities and differences in their experiences of providing humanistic care. Two external judges, a nurse manager, and a nurse educator specializing in palliative care, were involved in validating the findings. Apart from employing data triangulation and external validation by judges, the trustworthiness of the study was further enhanced by practicing reflexivity and ensuring data saturation. During the research process, the researchers remained vigilant about setting aside preconceptions and prejudices that could have influenced the inquiry and analysis. Data collection ended when further sampling no longer revealed any new insights.

Findings

The analysis of the interview findings revealed both positive and negative experiences in delivering humanistic care among palliative care nurses, leading to the identification of four themes that elucidated the dilemmas faced by these nurses during the process. Figure 1 presents a visual representation of the themes generated from the study.

Positive experience: "My presence truly made a difference"

When asked about their lived experience of providing humanistic care in palliative care settings, most nurses mentioned instances where they accompanied patients and families to establish rapport, collaborated with other healthcare professionals to address their needs by offering comfort care, and ensured that their dignity was maintained throughout the end-of-life journey:

“This is like the heart of nursing, you know? It's about being there for patients and families, doing everything we can to make them feel better, making sure they're comfortable and respected, and striving to fulfill their final wishes… I think what I'm doing is all about humanistic care, and it's what my work is all about.” (Code 12)

Some nurses acknowledged the significant roles they played and the values of their work; their "being with" and "caring for" the patients fostered a close bond, resulting in a meaningful impact on their end-of-life journey:

“There was this patient who was like family to me, one that I had been caring for over the years... She held my hand as she was trying to catch her breath in her final moments... She passed away peacefully, and I feel like I really made a difference.” (Code 6)

Negative experience: "It is simply unattainable in reality"

As nurses shared about their relationships with patients and families, many mentioned the challenge posed by heavy workloads resulting from understaffing, which deprived them of the time needed to engage in humanistic interactions with patients and families:

“It’s just not achievable in reality… Think about it, you've got over 10 patients to look after each shift, and every one of them has 5 issues or complaints. How do you manage to find time to talk to them and their families?” (Code 10)

When asked about the factors that hindered them from providing humanistic care, nurses identified patient-related factors as a significant challenge. In palliative care settings, patients often contend with suffering and crucial end-of-life decisions, making communication and establishing rapport challenging:

“Connecting with patients can be tough and it takes time… It's all about trust and talking openly with each other. But sometimes, patients get cranky or upset because they're not feeling well or they're struggling to accept their illnesses, so they might not feel like chatting with you.” (Code 2)

The dilemmas encountered

Upon reflecting on their humanistic interactions with patients and their families, most nurses were mindful of the various dilemmas they faced in the caregiving process. Some of these dilemmas emerged from their contemplation of the potential negative impact of practicing humanistic care on their personal lives or perspectives. Certain dilemmas stemmed from the gap between practice and theory, where patients' autonomy and interests were not always prioritized as emphasized in the care philosophy and were at times overshadowed by other factors. These dilemmas are illustrated through the following four themes:

Theme 1: Juggling between "creating bonds" versus "maintaining distance"

A number of nurses recounted situations where they became emotionally connected to patients. The distress they felt upon a patient's passing caused them to question whether they should be keeping a professional distance rather than forming bonds with patients:

“It's tough seeing them in that much pain… This went down a few years back when a very close patient passed away. I was crying while I was with her one last time, and I couldn't sleep for days, her face stuck in my dreams. That's when I figured, maybe I should try not to get too attached to patients like that.” (Code 8)

Other nurses encountered the internal struggle of reconciling their professional objectivity and clinical decisions with the profound emotional connections and enduring bonds they cultivated with their patients.

“I started crying when the doctor said we couldn't save the kid's life. I was kind of like the patient's mom, arguing with the doctor about why we had to stop the treatment… I know, I wasn't being very professional then.” (Code 12)

Theme 2: Choosing to "treasuring life more" versus "giving up life more easily"

Many nurses noted a change in their outlook on life as they came to understand its fragility, emphasizing the necessity of valuing life more. Likewise, when contemplating the possibility of facing a serious illness in the future, they considered choosing to end their lives swiftly to avoid prolonged suffering:

“I feel really conflicted about my views on life... I've come to appreciate life more, but if it were me in that situation, I don't think I could handle the pain, the hopelessness, all that suffering. I'd probably choose to end things sooner.” (Code 14)

Some young nurses also experienced a similar change in their life perspectives and pondered whether such a change would be beneficial for their personal and professional development:

"It's probably because of the job, but I'm starting to get used to life-and-death stuff... I've even talked to my mom about not wanting resuscitation if I get really sick... I'm only 25, but my views on life are more like someone in their 60s or 70s, and I'm not sure if that's a good thing or not." (Code 2)

Theme 3: Balancing "patients' interests" versus "families' interests"

Many nurses mentioned facing challenging situations in balancing the interests of patients and their families. This often arises when nurses strive to fulfill patients' final wishes while contending with opposition from families:

"That's what he (the patient) really wants, but his family is against it... For me, humanistic care is all about putting patients first and standing up for what they want. But in reality, the family's wishes often end up being more important than the patient's." (Code 1)

This struggle becomes more internalized for nurses who have developed strong bonds and emotional attachments to patients, especially when they hold similar views to the patients' families:

"He's like family to me... His last wish is to go to a Chinese restaurant... The whole team, including the doctor and physiotherapist checked and said it was fine for him to go out, but I was just as worried as his family, not wanting him to leave either... Yeah, I ended up putting my worries ahead of what he wanted, which I shouldn't have done." (Code 6)

Theme 4: Weighing "patient rights" versus "public interest"

Amid the COVID-19 pandemic, critically or terminally ill patients were unable to reunite with their families due to quarantine measures. Reflecting on their patients' final wish to see their families, nurses experienced profound emotions regarding the challenge of balancing patient rights with public interest:

“Most of them passed away without seeing their loved ones in their final moments, which left a lot of regret… I don’t understand how allowing a few patients' families, whose COVID-19 tests came back negative, to visit them would seriously harm public interests.” (Code 17)

Some nurses experienced distress similar to that of patients, triggered by their separation from families during the pandemic. This emotional strain resulted in work-related frustration and a growing inclination to leave their positions.

"That was a really tough time when I saw most patients feeling really down because they couldn't be with their families... No matter how much we tried, we couldn't really ease their suffering... I was right there with them emotionally, and at one point during the peak of the COVID-19 pandemic, I seriously thought about walking away from my job." (Code 3)

This phenomenological study embraced an atheoretical approach to examine humanistic nursing practices in palliative care settings, facilitating an unbiased exploration of the subject [6]. Upon reflection on the findings, aligned with the ideas presented by Paterson and Zderad [5], the developers of the Humanistic Nursing Theory, it became evident that humanistic care is most accurately understood through phenomenology, delving into the existential nursing experiences within the caregiving milieu. The theory underscores existential connections and presence with others, authentic self-awareness, and the fulfillment of potential throughout the caregiving journey [5, 13]. The insights obtained from this study have enriched the understanding of these theoretical concepts.

Interviews with the nurses have provided detailed accounts of their experiences in offering existential presence and establishing rapport with patients, which form the essence of humanistic care. Consistent with prior research, this study emphasizes the importance of preserving personal dignity, alleviating suffering, ensuring comfort, and facilitating a dignified end-of-life as vital components of humanistic care in palliative care settings [14, 15]. Past studies have highlighted nurses' role in fostering patient connectedness as an outcome of humanistic care, while this research delves deeper into a core aspect of humanistic care: the genuine presence for patients [16, 17]. It encompasses elements such as "being with," "being there," "knowing," and "doing for" the patients, which are often loosely characterized as person-centered care in existing literature [5, 17].

Palliative care nurses in this study demonstrated a notable level of authentic self-awareness. Reflecting on the hurdles they encountered in delivering humanistic care, they shared about the inability to respond to patients' needs due to various constraints at work. This observation aligns with the "call and response" concept integrated into nurse-patient interactions by Paterson and Zderad [5]. The findings resonated with previous research, highlighting the inherent negative aspects of palliative care, characterized by suffering and vulnerability. Constraints such as limited time and resources stemming from staffing shortages have posed difficulties in fostering connections with patients and their families [3, 9, 14]. Paterson and Zderad [5] recognized these obstacles within the demanding nursing field, affirming that humanistic nursing can manifest in diverse ways, serving as both a goal and a guiding principle in nursing practice.

The dilemmas encountered by palliative care nurses, as illuminated in this study, can be seen as the outcomes of authentic self-awareness. As nurses reflected on their practice of delivering humanistic care, they were mindful of how it impacted both their personal lives and professional roles. Many acknowledged that palliative care involves a prolonged process that nurtures strong bonds with patients, leading to feelings of distress and anxiety, especially in challenging situations such as when patients pass away [1, 9, 18]. Building on previous research, these negative impacts are more evident among younger nurses, who tend to suppress their emotions and avoid forming deep connections with patients and families as a way to protect themselves or regulate their emotions, ultimately affecting their professional behaviors [19, 20, 21].

The findings of this study have further highlighted the role that authentic self-awareness plays in assisting nurses in realizing their potential. As nurses engage in genuine introspection regarding the practice of humanistic care, they broaden their perspectives on life, emphasizing the importance of cherishing life while also affirming the significance of their work. However, the responses of the nurses in this study differed from those in previous relevant studies. While some nurses were developing new attitudes and mindsets characterized by courage, passion, and composure, and were embracing the process of preparing for their own deaths through reflective writing, nurses in this study expressed negative viewpoints, often opting to forgo treatments to avoid suffering [9]. This calls for further investigation, as it may indicate that the current system has not adequately provided emotional support to nurses [10].

Regarding the struggle to balance the interests of patients, their families, and the public, similar findings emerged in previous studies. These issues appear to transcend culture, as both Chinese and Western nurses encountered difficulties when addressing questions about death and human rights, and when dealing with families who are reluctant to accept the patients' conditions. In the latter scenario, families often opted not to disclose the patients' illnesses, thereby denying them the right to know the truth about their own condition [9, 20, 22]. Many scholars have emphasized the role of nurses as advocates, and the significance of nurses advocating for patients' rights [4, 23]. The challenges faced may suggest a need to further enhance nurse training on end-of-life matters, particularly in resolving family disagreements or conflicts when making decisions related to end-of-life care.

Implications for practice, education and theory

Implications for nursing education, practice, and existing theory can be derived from the findings of this study. The findings have uncovered deficiencies in the current support and training provided to palliative care nurses. Due to the inherently challenging nature of end-of-life care, healthcare organizations must develop enhanced support services for palliative care nurses and provide increased emotional reinforcement to assist them in coping with the distress that stems from their work. This can be achieved through professional support services offered by counselors and through fostering a ward culture that encourages openness and peer support [24]. Given the complexities of end-of-life care and the ethical dilemmas it involves, nurse educators should further enrich nursing education by integrating real-life scenarios to guide nurses on how to address issues related to death and human rights dilemmas, thereby better preparing palliative care nurses to deliver humanistic care. Recognizing and addressing dilemmas in the everyday work of nurses has been described as central to advancing practice [25].

The detailed accounts of nurses' lived experiences have provided deeper insights into the core elements of Humanistic Nursing Theory, specifically the concepts of "genuine presence," "authentic self-awareness," and "actualization of potentials", and the intricate relationships among them, which have not been extensively explored in existing literature [5]. The findings have also advanced the understanding of the challenges encountered by nurses in humanistic care, where existing literature has been limited by broadly categorizing these challenges as either antecedent or contextual factors that influence humanistic nursing practices [26].

While the participants involved in this study consisted solely of female nurses and the study was conducted in a single region, it did not consider gender factors in humanistic nursing practices, and the findings may have limited generalizability to countries with markedly different cultures and palliative care practices [27]. Further studies utilizing a phenomenological approach that involve both nurses and patients along with their families are warranted to broaden the understanding of their underlying experiences in humanistic interactions. This would enable a more profound examination of the complex relationships among nurses, patienst, and family factors that influence humanistic nursing practices, ultimately contributing to a deeper insight into the fundamental tenets of Humanistic Nursing Theory.

This study has reaffirmed the significance of phenomenological research in exploring the humanistic caring experiences of palliative care nurses and has captured the dilemmas encountered by nurses during the care process. The fundamental components of "genuine presence," "authentic self-awareness," and "actualization of potentials" that underlie Humanistic Nursing Theory are noted to be intricately intertwined, necessitating further inquiries to advance the development of the theory.

Ethics approval and consent to participate

Ethics approval was obtained from the ethics committee of School of Nursing and Health Sciences of Hong Kong Metropolitan University. Written consent was obtained from the participants prior to the commencement of the study.

Consent for publication

Not applicable

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

No funding was obtained for the study.

Authors' contributions

PPC and KMC designed the study, and collected and analyzed the data. PPC drafted the manuscript, and both KMC and LBY contributed to the interpretation of the findings. All authors helped in revising the manuscript, and they read and approved the final manuscript.

Acknowledgements

The authors would like to thank the palliative care nurses for their participation and support for this study, and the expert judges who helped in validating the findings of this study.

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No competing interests reported.

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The dilemma of palliative care nurses: A phenomenological inquiry into their lived experience with humanistic care

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Version 1

Abstract

Figures

Introduction

Methods

Sample and setting

Data collection

Data analysis

Findings

The dilemmas encountered

Theme 1: Juggling between "creating bonds" versus "maintaining distance"

Theme 2: Choosing to "treasuring life more" versus "giving up life more easily"

Theme 3: Balancing "patients' interests" versus "families' interests"

Theme 4: Weighing "patient rights" versus "public interest"

Discussion

Implications for practice, education and theory

Conclusion

Declarations

References

Additional Declarations

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