Breaking the Silence: Holistic Death Education in Nursing Curriculum Is Not Enough

Abstract

Current death education primarily centers on nurses’ attitudes and competence in caring for dying patients but overlooks the holistic assessment of family and nurses themselves. Nursing students and new graduates often feel overwhelmed and unprepared when they encounter death or a dying patient in clinical settings, leading to emotional distress and inadequate care for the dying patient and their loved ones. The emotional impact of such experiences affects not only the nursing student but also the well-being of family members and the quality of care delivered to the patient. This article explores the importance and need for holistic death education for nursing students and new-to-practice nurses to carry out comprehensive assessments that address the physical, psychological, and spiritual needs of families who might be losing their loved ones. The discussion offers suggestions and examples of what nursing education can provide, drawing on the perspectives of those who were once new nurses and reflecting on what they wish they had known before caring for the dying, handling death, and supporting those left behind. Implications focus on approaches for family assessment and self-assessment after death and potential considerations for structural changes in healthcare.

Introduction

Holistic nursing care, which encompasses mind, body, spirit, environment, and culture, is foundational to professional nursing practice. Nurses address not only physical health but also emotional, environmental, social, and spiritual well-being. Baccalaureate nursing education aims to prepare nurses with holism and person-centeredness as core values (Patestos et al., 2019). However, while some nursing programs incorporate this holistic perspective in their curriculum, many focus primarily on illness and well-being. In particular, while death is an unavoidable aspect of human existence that occurs at all levels of healthcare settings, limited attention was paid to death education from a holistic perspective. Death is a complex phenomenon that involves the layering of physical, emotional, and spiritual needs of the dying patients and their families. Insufficient emphasis on holistic nursing education about death and dying at the baccalaureate level, along with its limited practical application, can create gaps in delivering compassionate, comprehensive care to dying patients and their families (Patestos et al., 2019; Taheri-Ezbarami et al., 2024). Nursing students often find themselves overwhelmed, unprepared, and distressed when faced with the death of a patient, in part due to the subject being inadequately covered during their training (Gül et al., 2022). Initial encounters with death evoke a range of emotions, including fear, sadness, despair, and confusion (Gül et al., 2022), and nursing students often find themselves inclined to adopt an avoidance coping approach, steering away from direct engagement with the challenging aspects of mortality. This lack of preparation contrasts with the ubiquity of death in healthcare settings worldwide, emphasizing the importance of aligning theoretical knowledge with the practical aspects of nursing care (Chu & Jang, 2021). Our experiences in distinct Bachelor of Science in Nursing (BSN) programs at different regional universities underscore the significance of incorporating a course on death education into the BSN curriculum.

While much attention has been given to death in clinical and nursing education, the focus has primarily revolved around nurses’ attitudes toward death and their competence in providing end-of-life care (Dickinson, 2007). Yet, a holistic death education should also consider the emotional, psychological, spiritual, and social aspects of death and acknowledge their potential impact on the family “after” the death. In fact, a cross-sectional survey found that nurses expressed a sense of uncertainty when confronted with death. Also, there is a high demand for death education, specifically related to knowledge and skills around death and dying (Cui et al., 2011). A comprehensive education on death and dying is essential for future nurses to effectively navigate the emotional and psychological terrain inherent in their roles in providing holistic care. This is particularly true when new nurses are caring for individuals nearing the end of life, caring for the dead, and supporting grieving loved ones and family members, all while taking care of themselves. This article is informed by the theoretical framework of the Pedagogy of Death and Health Education, which integrates social, philosophical, and psychological perspectives on life and death from the viewpoints of both patients and their experiences and their loved ones (Ramos-Pla et al., 2023). This holistic framework provides an understanding of the multifaceted experiences and responses to death.

The primary focus of this article is to emphasize the need and importance of comprehensive nursing assessments and practices during and after death. Using the subsequent vignette based on themes observed in our clinical practice, we explore commonly overlooked aspects of death, highlighting their profound impact on the grieving process and their intricate interplay with psychological distress and spiritual turmoil in care for the dying and beyond for all parties involved.

Vignette

Taylor, a newly graduated nurse, clocked in for her shift in the intensive care unit (ICU), and received a patient report for Room 246: Josh, a 17-year-old male was admitted two days ago to the ICU due to a motor vehicle accident. Since his admission, he has remained unconscious due to a massive cerebral hemorrhage. His prognosis is poor. His parents just signed the do not resuscitate paperwork.

Taylor proceeded with her shift assessment of Josh and his surroundings, noting his unconscious state, pallor, and minimal responsiveness to stimuli. Continuous monitoring confirmed his poor prognosis. His mother, visibly distressed, remained attentive to his care, sharing anecdotes about her son's life and expressing regrets for not giving Josh a ride on the day of the accident. Taylor provided routine end-of-life care that involved pain and drainage management. She also incorporated frequent assessments of the family's physical needs in her care. Despite Taylor's efforts to provide holistic care, she felt that she was not doing enough to meet the real needs of Josh and his mother. She also struggled to understand the boundaries of nursing responsibilities, to what extent she should be involved in this situation, and how to work collaboratively with other professionals (e.g., social worker, spiritual care providers).

Josh passed away around shift change. His parents expressed reluctance to engage with medical staff and refused to acknowledge his death. Despite Taylor's desire to support them, she grappled with navigating the emotional complexity of the situation. She recognized her limitations in conducting a comprehensive family assessment, initiating sensitive conversations about their needs, effectively managing the physical, emotional, and spiritual needs of the dying patient, and navigating the complex terrain of after-death care. Feeling overwhelmed, Taylor questioned whether she could have done more to support the family and wondered what specific actions she could have taken to best support them while balancing her responsibilities to other patients and staying within the boundaries of nursing practice.

A few weeks later, the news of Josh's mother's subsequent suicide further compounded Taylor's moral burden, leaving her overwhelmed with “what-ifs” and sleepless nights. Taylor wishes that she could have an in-depth understanding of caring for the dying so that she would feel more equipped to initiate difficult conversations, assess the physical, emotional, and spiritual needs of the patient and family, and navigate care both before and after death, continuing to support those left behind. Left with guilt and insurmountable sadness, Taylor felt lost and unsure of how to process her emotions after experiencing the death of a patient and a family member with whom she had built a rapport.

Implications

Taylor's ordeal is a common scenario among new graduate nurses with suboptimal training to handle challenges related to death in clinical settings. Here, we provide a brief assessment of Taylor's encounter and propose several opportunities to improve nursing education geared towards targeted assessment and trauma-informed care for individuals experiencing death and their families. Furthermore, we present strategies for new nurses to foster self-healing, both as a preventative measure and in response to these demanding experiences.

Death, as an inevitable part of human life and a regular occurrence in healthcare settings, carries profound physiological and emotional impacts on all individuals involved (Zheng et al., 2016). The tragic outcomes for both Josh and his mother underscore the profound and often unpredictable nature of grief that extends beyond the hospital walls. Despite the desire to facilitate a therapeutic environment for the dying patient and loved ones, new graduate nurses like Taylor, often lack the necessary skills and knowledge related to death and dying, leaving them ambivalent and disengaged (Zheng et al., 2016). While clinical skills remain a cornerstone of nursing education, competencies in confronting the emotional and psychological intricacies of patients and their loved ones in these crucial moments of their lives often receive less attention. Taylor's story poignantly highlights the critical need for well-trained new graduates equipped to navigate both clinical challenges and the emotional/psychological complexities of dying patients and their loved ones. Nurse educators may consider introducing these complexities in death-related care in earlier simulations to help nursing students develop essential nursing and therapeutic communication skills with dying patients and caregivers and management of emotional distress to improve the ability to self-care after the death of their patients.

Person-centered care, a core entry-level competency outlined by the American Association of Colleges of Nursing (American Association of Colleges of Nursing, 2021), is particularly relevant in the care around death and dying. This competency focuses on the delivery of individualized care through nurses’ intentionality in understanding the full-person experience by acknowledging the influences of the complex environments in which individuals are situated. While families are included as a part of the environment, the 'how' is lacking, specifically pertaining to family-centered assessment and care delivery after death. Holistic nursing death education from a person-centered approach can be strengthened through the efforts of organizations such as the National League of Nursing (NLN), AACN, and other global stakeholders. These organizations can help improve nursing education and care by emphasizing the need for competencies that address person-centered care for both patients and their caregivers (Patestos et al., 2019). While numerous studies have examined end-of-life nursing care education globally, the findings have varied due to cultural, social, and spiritual differences across countries. However, these studies identified that end-of-life nursing care education worldwide shares a common goal of providing holistic, person-centered care. Nurses, particularly in developing countries, have expressed the need for more education on caring for the dead to enhance their capabilities in providing end-of-life care (Ghaemizade Shushtari et al., 2022; Taheri-Ezbarami et al., 2024). Many nurses report insufficient training on death care during their education or professional practice (Li et al., 2019; Taheri-Ezbarami et al., 2024). Despite the introduction of palliative and end-of-life care over half a century ago, studies indicate deficiencies in both the quantity and quality of death care education worldwide (Li et al., 2019; Taheri-Ezbarami et al., 2024).

The foundation of quality nursing care lies in the emphasis on effective assessment, as highlighted by the need for a nursing curriculum that addresses the knowledge and skills required to conduct effective nursing assessments in the context of death and dying. Quality nursing care is rooted in effective assessment in emotionally laden and sensitive situations such as death, which profoundly impacts the patient, their loved ones, and the nurse (Zheng et al., 2016).

Death can be a sensitive and multifaceted process, potentially leading to traumatic experiences (Wild et al., 2023). For this reason, effective assessment in the context of death spans three domains: assessment of the patient, family, and the nurse. We focus our attention on the family and the nurse since palliative and hospice care addresses issues pertaining to the dying patient.

The Family

Assessment of death-related trauma in families requires a comprehensive understanding of psychological, emotional, and, at times, physical states by evaluating emotional status, including fears, anxieties, and any trauma-specific symptoms related to the impending death. Drawing from Kübler-Ross's framework of the five stages of grief, it is crucial to observe family members for signs of distress, anger, withdrawal, agitation, or changes in sleep and eating patterns, as these behaviors often reflect the complex emotions experienced with the loss of a loved one (Kübler-Ross, 1970). In some cases, death-related crises may not be readily apparent through conventional assessment tools and may require a deeper level of trust to uncover, especially for highly personal spiritual and psychological issues. Incorporating role-playing and simulated scenarios into the curriculum can effectively train future nurses to foster a safe and empathetic environment (Khalaila, 2014). To this end, effective communication is key to conducting a holistic assessment and providing the necessary support. Ultimately, assessing death-related trauma in families involves deeper comprehension of their holistic experience around death and dying through open and trusted communication. In clinical rotations, it is recommended that nurse preceptors consider advocating for care continuity led by nursing students to help them cultivate trust and develop a nuanced understanding of death-related trauma, including the physical, emotional, and spiritual needs of family members.

When death is near, it can trigger a profound spiritual crisis for patients and their families. Questions about faith, purpose, and the very essence of being swirl in the mind, eventually leading to feelings of profound isolation, fear, and questioning the bedrock of personal and shared beliefs. Spiritual crisis, though challenging, can catalyze personal growth and transformation. It can unearth inner strength, deepen spiritual connections, and ignite a renewed appreciation for life's fleeting beauty (Bonavita et al., 2018). By incorporating simulated spiritual crisis assessments into nursing education, we can equip future nurses to identify and address death-related spiritual crises. To achieve this, a comprehensive assessment toolkit for identifying spiritual crisis and strength is crucial in mobilizing the needed resources to support dying patients and their families (Boateng, 2024).

The Nurse

Assessment of self (the nurse), an aspect often overlooked in nursing education, is especially relevant in fostering quality nursing care around death and dying, as caring in this context is stressful, emotionally, and often morally challenged and could have long-lasting consequences for the nurse. Ineffective self-assessment could lead to disengagement, avoidance, and burnout, ultimately compromising the quality of care. In fact, the first patient death experience is critical to new graduate nurses, as it often ignites reflection and a reevaluation of one's perception of the profession and values of care delivery. However, nurses often feel unprepared and alone when facing the emotions associated with a patient's death (Zheng et al., 2016), highlighting the need for emotional preparation before death encounters. This preparation could take various forms, including simulation training, clinical encounters, and exposure to individuals who have experienced the death of their loved ones; each has shown positive outcomes in short-term trials, where nursing students report improvement in confidence and preparedness when confronted by death (Chua & Shorey, 2021; Gillan et al., 2014; Gül et al., 2022). The effectiveness of these short-term trials portends the potential sustainable benefits of incorporating them into the BSN nursing curriculum. When confronted by death, new graduate nurses can consciously be aware of possible emotions, effectively recognize these emotions, and seek out proper coping mechanisms and support.

Additionally, the emotional impact of professional responsibilities in addressing death highlights the importance of nurses adopting effective coping strategies. Graduate nurses can begin by self-reflecting on their existing feelings, identifying triggers, and recognizing any sense of burden arising from their interactions with dying patients and their loved ones. Coping strategies may vary based on individual nurse characteristics, culture, and religion (Cui et al., 2011), thus, educational programs may not dictate the methods but rather create a safe and supportive environment. One example is through forming supportive peer groups herein referred to as “pods,” with diverse years of experience that would allow new-graduate nurses to openly discuss feelings of inadequacy, ambiguity, triggers, and trauma with trusted colleagues (Williams et al., 2018). This, in turn, can improve the quality of nursing care for dying patients and their families while potentially reducing turnover in clinical practice. Given that healthy nurses provide quality care, safeguarding personal and professional support for nurses is as crucial as providing nursing care to others.

It is important to address structural barriers to death-related assessments. The provision of care extends beyond a patient's death, encompassing the assessment and emotional support of their loved ones after death, which may be included in nursing education and practice. Despite its significance, there is often a lack of structured assessment and nursing interventions to support patients’ loved ones after death. Nurses should be trained to provide not only direct care to deceased patients and their families, addressing emotional distress and offering support but also to connect families with resources after death. To rectify this deficiency, it may be necessary to introduce billing codes, providing a framework to better recognize the importance of after-death assessment, documentation, and accountability but also responsibilities, particularly in acute care settings where patient-centric focus is predominant. Acknowledging the constraints of time and workload, introducing a dedicated billing code for after-death care of patients’ loved ones helps underscore the importance of acknowledging them as integral subjects in nursing care. This emphasizes the importance of allocating resources for providing this care, given the billing incentives. Moreover, acquiring these skills necessitates training and familiarity with the situations, making early education, starting from undergraduate nursing programs, pivotal in bridging the gap and ensuring the delivery of essential care for dying patients and their loved ones. However, future discussions are needed among clinicians, healthcare systems, and policymakers to delineate the boundaries and nursing responsibilities for supporting bereaved families without overburdening nurses.

Conclusion

Nurses play the most essential role in end-of-life care, which could have the last and most significant impact on dying patients, their loved ones, and the nurses themselves. Experiencing fear and helplessness when encountering death highlights the need for more integrated and holistic death education in the nursing curriculum. The current focus on death education often neglects family-centered perspectives on death and dying that uncover profound emotional impacts on all individuals involved, including nurses, patients, and their loved ones. Effective assessment, encompassing the patient, family, and self, is crucial for facilitating desired care during and after death. Care provision needs to extend beyond a patient's death, addressing the unmet needs of those left behind to prevent negative outcomes such as trauma and spiritual crises. Early death education, starting from undergraduate nursing programs, is vital, empathizing family-centered care, effective assessment, support for loved ones, and impacting coping strategies for nurses. This contributes not only to care quality but also enhances the well-being of nurses.

Implications for Holistic Nursing and Practice

We suggest that death assessment, including the assessment of the patient, family, and nurse, be emphasized in nursing education and practice to provide holistic care for dying patients and their loved ones. Specifically, we recommend utilizing simulations to generate realistic scenarios, enabling students to practice managing care for the deceased, the dying, and their families in a controlled, safe setting. This could involve (1) role-playing to facilitate difficult discussions with patients and their families about death and dying; (2) drawing on the experiences of healthcare professionals such as palliative care experts, ethicists, and spiritual care providers to enrich students’ understanding of the multidimensional aspects of death; (3) encouraging students to reflect on their experiences and feelings about death through journals, discussion groups, or reflective essays to help them process their emotions and develop a personal coping strategy.