INTRODUCTION
CHAPTER ONE
INTRODUCTION
End-of-life care (EOLC) has become a crucial element of healthcare institutions (Abuhasira et al., 2022). There is a growing intensity in the debate surrounding EOLC among patients and their families (Bilal et al., 2022; Rao et al., 2022). In addition, nurses in the Intensive Care Unit (ICU) carry out their responsibilities amidst high stress levels. One factor contributing to this heightened stress level is the scarcity of nurses and other healthcare personnel. The demands of patients and their families during the latter stage of life significantly impact nurses' experiences in providing EOLC (Pan et al., 2022).
Patients hospitalized in the ICU may encounter life-threatening conditions that can result in mortality. Bilal et al. (2022) assert that, in this case, ICU nurses transition from providing care to sustain life to providing care at the EOL. The extent of nurses' participation in EOLC varies; differences in religion, culture, organization, legislation, cases, and patient quality can vary even within a single country, let alone between countries (Xu, 2022). Even though evidence suggests that providing good EOLC is a vital aspect of the ICU, it encompasses a range of interventions to promote comfort, dignity, and support for patients and their families during this challenging time (Rao et al., 2022). However, Critical Care Nurses (CCNs) face numerous ethical dilemmas when caring for critically ill patients, particularly when their condition deteriorates to the point where medical interventions become ineffective (Walker et al., 2023). Research on EOLC in the ICU has not been conducted in Malawi, hence, it is necessary to understand ICU nurses' lived experiences when providing EOLC to their patients and families.
BACKGROUND INFORMATION
Death is a natural phenomenon of life which cannot be evaded (Mercadante et al., 2019). However, death is a common occurrence in critical care environments, with many patients referred to the ICU before their demise (Abuhasira et al., 2022). Historically, the mortality rate of critically ill patients in the ICU has been seen to be much higher when compared to the mortality rate in other departments of a hospital (Utami et al.,2020). Endeshaw et al. (2022) showed that worldwide, the average mortality rate in ICUs in 2023 varies from 9% to 61%. Compared to other regions worldwide, North America, Oceania, and Europe have relatively low ICU mortality rates of 9.3%, 10.3%, and 18.7%, respectively (Abate et al., 2023). However, South America and the Middle East have higher rates of 21.7% and 26.2%, respectively. The ICU mortality rate in Africa is significantly higher, ranging from 32.9 to 54%, compared to other developed continents. In Malawi, the ICU mortality rate is 35%, which shows a high mortality rate (Kachingwe et al., 2022). These deaths occur either as anticipated or unexpectedly. In this situation, CCN care shifts from providing actions to maintain life to EOLC (Gundo et al., 2023). Thus, knowledge of EOLC is highly recommended for health care providers in ICU. In addition, Lee et al. (2020) indicated that acknowledging the prevalence of death in the ICU emphasizes the significance of understanding lived in experiences of ICU nurses and addressing the challenges associated with EOLC.
The World Health Organization (WHO) states that EOLC in the ICU is a multidisciplinary team approach to managing terminal illness where there is a shift of focus from treatment intended to cure or extend life and towards symptom control, comfort, dignity, quality of life, and quality of dying to enhance the wellbeing of the patient and family (WHO, 2020). Consequently, Blommer et al. (2021) stated that despite death being a natural phenomenon, technological advancements often prolong patients' lives, leading to concerns for nurses in EOL situations. However, with these medical advances, the ICU can offer life-sustaining interventions like mechanical ventilation and cardiac support. These interventions can assist vital organ functions in sustaining life but do not prevent dying (Palma et al., 2022). As such, interventions to sustain a patient's life who is medically futile, like brainstem death, delay death but may also cause them pain and suffering without any therapeutic benefit (Palma et al., 2022; Divatia, 2020). Hence ,implementing high-quality EOLC in the ICU can be difficult due to the primary goal of sustaining life in this setting (Griffiths, 2019). Other studies discuss challenges in implementing EOLC in the ICU, including lack of experience and knowledge in providing EOLC, conflicts in determining the best EOLC treatment, communication and decision-making difficulties, and unrealistic family expectations among the ICU nurses (Wiesen et al .,2021).Additionally ,Bilal et al. (2022) reported that among all ICU team members, nurses bear the most stress caring for dying patients due to their constant presence at the bedside and tend to live with these experiences. This suggests a need to explore ICU nurses lived in experiences during EOLC.
According to Jensen et al. (2020), nurses spend more time interacting with patients and their family members. They are confronted with a scenario that requires therapeutic interventions and, occasionally, cessation of treatment. Neverthless, the presence of dying patients in the ICU led to the development of worry and tension among the nurses (Mercadante et al.,2018). As highlighted, mortality rates in the ICU are high. According to Pan et al. (2022), one out of every five individuals who passed away in the hospital did so in the ICU. Consequently, the elevated mortality rates give rise to feelings of anxiety and worry since nurses live with experiences of psychological anguish and frustration as a result of the lack of advancement in EOLC (Rao et al., 2022).
Alternatively ,nurses encounter significant levels of stress and intense emotions as a result of witnessing the decline of patients nearing the end of their lives all the time in the ICU (Kostka et al., 2021). Jennerich et al. (2024) state that nurses are widely regarded as having the highest level of patient interaction compared to other healthcare practitioners. Consequently, in the ICU, patients have an extended duration of hospitalization due to the severity of their medical condition, which enables nurses to establish a deep familiarity with the patients and their families (Bloomer et al., 2023). As nurses interact with patients more frequently, the connection they establish with them becomes more robust. The atmosphere of impending death is filled with individual anxieties and emotions, intensifying the unpleasant and disheartening nature of the experience (Walker et al., 2020). Even though death is a challenging phase in the life of an ill person, it instils fear not only in the person who is dying but also in those who are close to them, including ICU nurses (Ozga et al., 2020).
Furthermore,mortality and the process of dying are pervasive occurrences in the professional setting of nurses. While every death is undoubtedly a source of sadness, it is an inherent part of ICU nurses' human lived experiences (Divatia et al., 2020). Nurses frequently accompany individuals nearing the end of their lives and must fulfil their responsibilities when caring for such patients professionally. Hence, nurses offer care to patients until their final moments, which can generate worry, desperation, and anxiousness among the nurses who have to live with these distressing experiences (Mani, 2016).In contrast, Jensen (2020) indicated that some nurses have considered death to be good because some death is seen as a reliving of suffering in cases where patients are terminally ill or experiencing significant pain. Despite that, EOLC remains essential in promoting a peaceful and dignified death in the ICU. Different strategies for managing stress can be observed based on job experience and workplace location. However, the first step to address this is to explore these ICU-lived experiences on EOLC.
In addition, ICU nurses are essential in delivering comprehensive intimate care to terminally ill patients in the ICU, fostering a therapeutic relationship through physical, psychological, emotional and spiritual support (Nnate et al., 2021). Nevertheless, Jang et al. (2018) asserted that nurses serve as a valuable source of assistance and encouragement for patients and their families. Nurses offer support to individuals facing challenging choices and adjusting to harsh truths. Utami et al. (2020) highlighted that nurses acknowledge the inevitability of death and demonstrate a dedicated effort to ensure that the dying process is as comfortable, peaceful, and dignified as possible. However, Delivering optimal care at the end of life poses a challenge for healthcare professionals (Coombs, Addington-Hall, & Long-Sutehall, 2012; Griffiths, 2019). EOLC procedures subject nurses to human suffering and distressing circumstances, leading to feelings of worry, uncertainty, physical exhaustion, and emotional fatigue. Hence, a study on the experiences of these ICU nurses in EOLC will influence the implementation of end-of-life practices.
However, a study by Brooks et al. (2017) emphasized the significance of nurses' experiences in acquiring knowledge to manage end-of-life circumstances. This information assists individuals in professional endeavours by guiding them in managing challenging situations when tending to terminally ill patients. Nurses' lack of expertise and understanding in EOLC leads to negative emotions such as sorrow, remorse, regret, and numbness (Kim et al., 2019).
Despite that, there are differences between high-income countries (HIC) and low-income countries (LIC) in terms of EOLC due to differences in healthcare infrastructure, resources, cultural values and healthcare systems (Xu et al .,2021). HICs have advanced care planning, where patients are encouraged to discuss their preferences for EOLC in advance; this allows CCNs to respect patients' wishes and provide care accordingly (Avidan et al., 2021). Apart from that, ethical and legal frameworks are put in place to guide EOLC decision-making; these ethical frameworks help healthcare providers navigate complex ethical dilemmas and provide clarity to patients and families (Rao et al., 2022). While much evidence points to this conclusion, decisions to withhold or withdraw life-sustaining treatment are less frequent in LIC than in HIC, possibly because EOLC decisions are less clear in LIC (Lobo et al., 2017). Alternatively, there are barriers to making such decisions in LIC, such as religion and a lack of legislative policies and regulations to support the provision of withholding and Withdrawal of treatment (Utami et al., 2021). Similarly, a study undertaken by Gundo et al. (2023) in Malawi reported that nurses and doctors in ICU reported no legislative support for Withdrawal or withholding treatment for patients who are critically ill to benefit from ICU, which poses a moral burden on ICU nurses. As such, this limits the provision of good EOLC by ICU nurses in LIC because of a lack of structured end-of-life care frameworks.
Additionally, Providing EOLC demands skills, knowledge, and commitment from nurses, often leading to increased time spent with patients and their families (Bilal et al., 2022). Despite being less frequent in LIC, it poses unique challenges for nurses, including those in Zambia and Malawi. Further, ethical and moral challenges in critical care nursing may result in burnout, stress, job dissatisfaction, and the decision to leave nursing (Xu, 2022). Existing literature primarily focuses on end-of-life care in HIC backgrounds, mainly on patients and families, leaving the challenges and experiences faced by ICU nurses in LIC unnoticed (Bilal et al., 2022). Naidoo et al. (2019) conducted a study in a South African ICU, uncovering that nurses frequently grapple with ethical dilemmas, particularly in decisions related to treatment withdrawal. However, the study stops short of providing an in-depth exploration of the nuanced impact of these ethical dilemmas and lived-in experiences of ICU nurses on the overall quality of EOLC. This limitation hinders a complete understanding of the complex decision-making processes and emotional toll experienced by ICU nurses. Despite that, the literature reveals a significant lack of information on how ICU nurses in LIC live their lives and perform end-of-life care in qualitative terms, so understanding the experiences of ICU nurses in LIC is essential for promoting dignified deaths and improving the quality of end-of-life care (Kisorio et al., 2016). Hence, a study on ICU nurses' lived-in experiences with EOLC in Malawi is vital for developing strategies that address ICU nurses' specific challenges, ultimately improving care for terminally ill patients.
STATEMENT OF PROBLEM
Ensuring death with dignity reflects the heart of medicine (Rafii and Abredari, 2023). The provision of EOLC in the ICU setting is fraught with complexities, including ethical dilemmas, communication challenges, and emotional burdens, which may be exacerbated in resource-limited environments (Taylor et al., 2020). In Malawi, ICU nurses face unique challenges, such as high emotional burdens, ethical dilemmas, and communication difficulties. A study conducted in Malawi by Gundo et al. (2021) states that some of the challenges faced arise from witnessing patients in a critical state and dealing with family grief all the time, balancing aggressive treatment with the patient's quality of life being futile, conveying complex medical information or navigating sensitive information discussions about prognosis and treatment options with patients and families under significant stress, respectively. However, nurses are obliged to live with these distressing experiences. Consequently, high-stress levels adversely affect the health and wellbeing of the nurse and the ability to provide high-quality care to the dying patient (Kayambankazanja et al., 2021; Abuhasira et al., 2022).
Furthermore, in Malawi, there is no legal framework to terminate life support when the prognosis is poor (patients are taken care of for an extended period), which poses a moral burden on CCN because of the emotional bond created between the patient and nurse (Gundo et al., 2021; Prin et al., 2019). This leads to traumatization, compassion fatigue, and nurses unwilling to be allocated to the ICU due to repeated empathetic engagement with sadness and loss in the ICU ( Kayambankazanja et al., 2021). However, studies on ICU nurses' unique lived-in experiences on EOLC are lacking. Additionally, research mainly focuses on HIC, leaving a gap in understanding the specific contexts and challenges ICU nurses face. Additionally, numerous studies focus on the stress of EOLC on patients and families, but data related to experiences of EOLC is lacking.
This knowledge gap has far-reaching implications, as it impedes the development of evidence-based strategies and interventions to optimize EOLC delivery in LICs. With a comprehensive understanding of the experiences and needs of ICU nurses, healthcare systems can provide high-quality, compassionate care to terminally ill patients and their families. Moreover, the lack of tailored support and resources for ICU nurses in LICs like Malawi has contributed to burnout, job dissatisfaction, and decreased quality of care (Gundo et al., 2021; Baker et al., 2019; Prin et al., 2019), further underscoring the urgency of addressing this gap in knowledge.
Therefore, there is an urgent need to conduct in-depth research to explore and address the unique experiences, challenges, and support needs of ICU nurses in LICs, with a specific focus on countries like Malawi. Addressing this knowledge gap is essential for promoting dignified deaths, supporting the wellbeing of ICU nurses, and advancing the quality of end-of-life care in LICs.
SIGNIFICANCE / JUSTIFICATION OF THE STUDY
Literature shows that most ICUs emphasize curative rather than EOLC training in low-income countries (LICs), this contributes to a need for more preparedness among healthcare professionals in managing patients who do not recover. Further, EOLC is not extensively practised in many low-income countries (LICs), resulting in a scarcity of literature and experiences in these regions. Hence, exploring nurses' lived experiences in Sub-Saharan Africa and Malawi is crucial to filling this gap, providing a nuanced understanding of challenges and strategies in resource-constrained settings and contributing to the global dialogue on improving EOLC practices.
Further, Naidoo et al. (2019) conducted a study in a South African ICU on 'Critical Care Nurse's Perspectives on EOLC', uncovering that nurses frequently grapple with ethical dilemmas, particularly in decisions related to treatment withdrawal. In Malawi, Kayambankanzanja (2021) conducted a study on 'Dying in the ICU, without specification on the actual lived experiences of ICU nurses. Both studies stop short of providing an in-depth exploration of the nuanced impact of these ethical dilemmas on the overall quality of EOLC on ICU nurses. The absence of studies, especially from 2019 to 2023, including Malawi, creates a knowledge gap in understanding current challenges and practices related to EOLC in this country. Hence, this study will be unique and will go a step further with an in-depth exploration of ICU nurses' lived-in experiences on EOLC. Addressing this temporal and geographical gap will offer updated insights into the experiences of ICU nurses, aiding in the development of targeted training and support initiatives that align with the current healthcare landscape in Zambia and Malawi. By shedding light on these challenges and the strategies nurses employ, the research will increase knowledge and understanding of ICU nurses' current challenges, practices, and experiences relating to EOLC at the ward level. Aid in developing targeted training and support initiatives that align with the current healthcare landscape in Malawi for the specific needs of nurses in similar environments at the managerial level and Inform policymakers on measures to address the problems identified.
MAIN RESEARCH QUESTION
What are the lived-in experiences of ICU nurses in LIC, such as Malawi, when providing EOLC to patients and families in the ICU?
Specific Research Question
How do ICU nurses in LIC countries like Malawi define and Conceptualize EOLC in the ICU?
What interventions or strategies do ICU nurses employ to facilitate a dignified and peaceful death experience for patients and their families in LIC?
What are the critical challenges ICU nurses face in LIC when providing EOLC to the patients and their families, and how do these challenges impact the quality of care delivered?
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