The study included eight charge nurses, six were female and two were male representing a diverse range of ICU specialties: two from Surgical ICU, three from Medical ICU, one from Chronic ICU, and one from Neuro ICU. All participants held a bachelor's degree in nursing and had significant experience in the ICU, ranging from 5 to 15 years. The nurses represented a mix of nationalities, with three from the Philippines, three from India and two from Malaysia. While all participants were fluent in English, it was not their native language.
This qualitative study aimed to understand the experiences and perspectives of international ICU charge nurses providing end-of-life care for Muslim patients in Saudi Arabia. In-depth interviews with eight charge nurses revealed four prominent themes that shed light on the complexities and nuances of this sensitive aspect of healthcare. Thematic analysis revealed four overarching themes: Family as Central to End-of-Life Care, highlighting the paramount importance of family presence and involvement in decision-making; Navigating Cultural and Religious Beliefs, emphasizing the nurses' efforts to provide culturally sensitive care aligned with Islamic practices; Balancing Compassionate Care and Medical Practices, illustrating the complexities of navigating cultural beliefs and medical practices; and Emotional and Spiritual Support, underscoring the nurses' commitment to providing holistic care that addresses emotional and spiritual needs. The findings provide valuable insights into the cultural nuances of end-of-life care in Saudi Arabia and highlight the importance of culturally sensitive practices that respect Islamic beliefs, prioritize family involvement, and address the holistic needs of patients and their families.
The Weight of Unspoken Truths
The following quotes highlight the complex interplay between cultural sensitivities, communication barriers, and end-of-life care, particularly the challenging situation where doctors feel compelled to avoid direct conversations about death.
The first two quotes, "Doctors often avoid telling families their loved one is dying because of cultural sensitivities” [Participant 3] and “The doctor avoidance along with the family's strong faith, makes things very challenging" [Participant 4], reveal a common, yet problematic, dynamic. Doctors, aware of cultural beliefs where directness about death is deemed inappropriate or even harmful, may resort to indirect communication or avoid the topic altogether. While motivated by a desire to respect cultural values, this avoidance can inadvertently create more challenges. Families, left in the dark about the true prognosis, may struggle to make informed decisions or find themselves unprepared for the eventuality of death. This situation can also lead to distrust between medical professionals and families, hindering the collaborative approach essential for optimal end-of-life care.
The third quote, “Few doctors avoid end-of-life care discussion” [Participant 8], presents a contrasting perspective, suggesting that not all doctors shy away from these difficult conversations. This difference in approach could stem from various factors, including individual communication styles, personal beliefs, or experiences with diverse patient populations. It also highlights the need for greater consistency and clarity in how healthcare providers navigate cultural sensitivities while ensuring open and honest communication with patients and families facing end-of-life situations.
These contrasting viewpoints underscore the need for culturally sensitive communication training for medical professionals. Such training should equip them with the skills to engage in open and honest dialogues about death and dying, even within cultures where these topics are considered taboo. Finding a balance between respecting cultural beliefs and providing clear, compassionate information is crucial for ensuring that patients and families feel supported and empowered to make informed decisions about end-of-life care.
Clashing Worldviews
The following quotes reveal the tensions that arise when traditional healing practices intersect with modern medical approaches, particularly in the context of end-of-life care. While cultural sensitivity is paramount, healthcare providers often find themselves navigating a delicate balance between respecting deeply held beliefs and advocating for evidence-based practices.
The first quote, "Families sometimes use honey and oil on infected wounds, believing it will help” [Participant 1], highlights the prevalence of traditional remedies, often passed down through generations, in managing illness and injury. These practices often stem from a deep-rooted cultural understanding of health and healing, holding significant meaning and importance for families.
However, as the second quote, “We tell family that using honey and oil are harmful, but doctors often allow it out of respect for their beliefs” [Participant 4], reveals, such practices can clash with modern medical understanding. While honey possesses some known antibacterial properties, its application to infected wounds might be contraindicated or even harmful in certain medical contexts. This discrepancy creates a dilemma for healthcare providers, caught between advocating for evidence-based care and respecting cultural beliefs that might contradict those recommendations. The decision to "allow" such practices, while seemingly respectful, can be fraught with ethical implications, potentially compromising patient safety and well-being.
The third quote, “Using stuff from their beliefs like oil and water makes our job as nurses harder" [Participant 6], underscores the practical challenges faced by healthcare providers in such situations. Nurses, often tasked with the hands-on care of patients, may find themselves torn between following medical protocols and accommodating family requests that they perceive as potentially harmful. This tension can lead to moral distress, impacting job satisfaction and potentially compromising the quality of care provided.
These quotes highlight the need for open and honest communication between healthcare providers, patients, and families about the efficacy and potential risks of traditional healing practices. Rather than dismissing these practices outright, a more constructive approach involves engaging in respectful dialogue, acknowledging the cultural significance of such beliefs, and explaining the medical rationale behind alternative treatments. Finding a balance between cultural sensitivity and evidence-based practice is crucial for building trust and ensuring optimal care for patients from diverse cultural backgrounds.
The Family's Agony
The following quotes offer a raw and honest look at the complexities surrounding family dynamics in end-of-life care. While motivated by love and a desire to help, families can sometimes inadvertently contribute to a patient's suffering, highlighting the delicate balance between honoring their wishes and advocating for the patient's best interests.
The statement, "Families often interfere with care, unaware of their loved one's true suffering" [Participant 7] reveals a heartbreaking disconnect. Driven by love and a refusal to accept the inevitable, families may advocate for continued interventions, unaware that these actions might be prolonging their loved one's suffering rather than alleviating it. This disconnect underscores the importance of clear and compassionate communication between nurses and families, ensuring everyone understands the realities of the patient's condition and the potential consequences of various treatment options.
The quotes, "Families asking different questions about using other treatments plans" [Participant 2] and "Families suggesting different treatments from internet" [Participant 3] further illustrate the emotional turmoil families experience. Desperate for a solution, families may turn to alternative treatments or cling to unrealistic hopes fueled by information gleaned from the internet. While understandable, these actions can create tension and complicate the care plan, potentially leading to disagreements between family members and healthcare providers.
The statement, "Each family member might request a different care plan, prolonging the patient's suffering" [Participant 7] “sometimes familes members ask for different treartment” [Participant 4] highlights the potential for discord within families grappling with loss. Grief manifests differently in everyone, and family members may disagree on the best course of action for their loved one. These disagreements, while rooted in love and concern, can create a chaotic and emotionally charged environment that ultimately prolongs the patient's suffering.
These quotes underscore the need for healthcare providers to approach end-of-life care with sensitivity, compassion, and a deep understanding of family dynamics. Open and honest communication, active listening, and empathy are crucial for navigating these challenging situations. Providing families with emotional support, clear explanations, and opportunities to express their concerns can help bridge the gap in understanding and facilitate shared decision-making that prioritizes the patient's well-being and honors their wishes.
The Burden on nurses
These quotes offer a poignant glimpse into the emotional burden shouldered by nurses, particularly in the context of end-of-life care. The nurses' words reveal a profession grappling with the profound impact of witnessing suffering and death, often without adequate support systems in place.
The phrase "Nurses bear a heavy emotional burden" [Participant 1] speaks to the inherent weight of accompanying patients through their final moments. This burden is not merely a matter of professional duty but a deeply personal experience that can leave nurses emotionally drained and vulnerable. The acknowledgment that “this burden can impact the quality of end-of-life care" [Participant 3] further underscores the potential consequences for both patients and providers. When nurses are stretched thin emotionally, their capacity for empathy and compassionate care can be compromised, potentially affecting the quality of care delivered.
The pleas for emotional support, "We need emotional support" [Participant 6] and "Sometimes we feel that we need help ourselves" [Participant 8] highlight a critical gap in the system. These nurses are expressing a need for resources and support mechanisms that acknowledge and address the emotional toll of their work. The absence of such support leaves them feeling overwhelmed and ill-equipped to process the emotional intensity of end-of-life care.
The statement "Nurses are at risk of burning out" [Participant 2] serves as a stark warning. Burnout, a state of emotional, physical, and mental exhaustion caused by prolonged exposure to overwhelming stressors, is a serious concern in healthcare professions. The nurses' words suggest that without adequate support and resources, they are at increased risk of experiencing burnout, which can have detrimental effects on their well-being and their ability to provide quality care.
The lack of clear protocols, as expressed in "We lack specific protocols for end-of-life care in ICU" [Participant 4], “End of life care protocol that employed different cultural and beliefs aspects for new staff are needed” [Participant 5] further exacerbates this burden. Clear protocols can provide a sense of structure and guidance, particularly in emotionally charged situations. The absence of such protocols can leave nurses feeling uncertain and ill-prepared, adding to their stress and anxiety.
The statement "We strive to provide the best support possible" [Particpant 7] reflects the nurses' dedication to their patients despite these challenges. They are striving to provide compassionate care even in the face of emotional exhaustion and systemic gaps. However, this striving, without adequate support, is unsustainable in the long run.
These quotes, taken together, paint a concerning picture of a system that needs improvement to adequately support its healthcare providers. Addressing the emotional needs of nurses is not merely a matter of improving working conditions; it is essential for ensuring the delivery of high-quality, compassionate end-of-life care. Investing in emotional support resources, developing clear protocols, and fostering a culture of support within healthcare settings are crucial steps towards mitigating the emotional burden on nurses and ensuring their well-being.
Bridging the Divide
These quotes offer a heartening counterpoint to the challenges discussed previously, highlighting proactive steps towards more compassionate and culturally sensitive end-of-life care. They emphasize the power of knowledge, communication, and cultural understanding in navigating this sensitive terrain.
The statement, "Educating patients and families about their options and involving them in the decision-making process is crucial" [Participant 6] and “ Given more attention for families are supportive” [Participant 1] underscore a critical shift towards patient-centered care. By empowering families with knowledge about the patient's condition, prognosis, and available options, healthcare providers can foster a sense of agency and shared decision-making. This approach not only respects patient autonomy but also helps to alleviate the fear and uncertainty that often accompany end-of-life situations.
Recognizing the potential for communication barriers, as expressed in "While we don't all speak Arabic, translators can bridge the communication gap" [Participant 6] and “sometimes we need translator and also ensuring some sensitive cultural aspects” [Participant 8] demonstrate a commitment to cultural sensitivity. Language barriers can significantly hinder understanding and create a sense of isolation for patients and families. By providing access to culturally competent interpreters, healthcare providers can ensure that critical information is conveyed accurately and respectfully, fostering trust and facilitating meaningful dialogue.
These quotes, while brief, offer a powerful message of hope. They suggest that by embracing open communication, prioritizing patient education, and valuing cultural understanding, healthcare providers can create a more compassionate and supportive environment for patients and families facing the end of life. These efforts, while not always easy, are essential for ensuring that patients receive care that honors their wishes, respects their cultural beliefs, and prioritizes their comfort and dignity.
A Call for Change
Ultimately, these quotes “Cutural congruent in end of life is very essintial” [Participant 4], “Considering patients and their families belifs at end of life need attention” [Participant 3], “The culure is very sesitive and very imprtant at the end of life” [Participant 2] and “Most of families have strong faith and beliefs” serve as a powerful call for systemic change. Healthcare institutions must develop clear, culturally sensitive protocols for end-of-life care that address the unique needs of diverse patient populations. This includes providing adequate training for healthcare providers on cultural competency, effective communication strategies, and managing their own emotional well-being. By fostering a culture of empathy, respect, and open communication, we can create a healthcare system that honors both the medical and spiritual needs of patients and their families during this vulnerable time.
The Importance of Family Presence
These quotes beautifully illustrate the deep understanding these nurses have of the human experience at the end of life. They recognize that death is not just a biological event but a deeply personal and spiritual journey, best navigated with the love and support of close relationships.
The statement, "We generally encourage families to be present with their loved ones" [Participant 2] and “Facilitating family presence” [Participant 4] reflect a move away from a purely clinical approach to end-of-life care. It acknowledges the profound emotional and spiritual needs of patients facing their mortality and prioritizes creating a space where those needs can be met through the comfort of family presence.
The quotes, "Patients mostly trust their families" [Participant 5] and "family present are very supportive for patients" [Participant 7] further highlight the vital role families play in providing comfort and security during a vulnerable time. This trust and support can be immensely powerful, offering patients a sense of peace and connection that transcends the medical aspects of their care.
By actively encouraging and facilitating family presence, these nurses demonstrate a deep respect for the patient's emotional and spiritual well-being. They recognize that the final moments of life are not just about medical interventions but about love, connection, and shared humanity. This approach prioritizes creating a compassionate and supportive environment where patients can find solace and meaning in the presence of their loved ones.
Honoring Faith in Absence
The following quotes reveal a commendable dedication to providing holistic care, recognizing that spiritual well-being is just as important as physical comfort, especially at the end of life. Even when families cannot be present, these nurses demonstrate a proactive approach to ensuring their patients feel a sense of peace and spiritual support.
The quote, "If the family is absent, we'll play Quran TV" [Participant 2] and “Providing Quran to patients and their families” [Participant 8] exemplify a simple yet powerful gesture of respect for the patient's faith. By providing access to religious content, the nurses create a comforting and familiar atmosphere for the patient, even in the absence of loved ones.
The efforts to "contact the family and encourage them to come" [Participant 1] further highlight the nurses' commitment to family involvement whenever possible. They recognize the importance of family connections, especially during such a critical time, and actively work to facilitate those connections.
The practice of "Having a religious leader to pray with the patient" [Participant 4] and “Religious leaders are very supportive” [Participant 3] demonstrate a deep understanding of the patient's spiritual needs. By involving religious leaders, the nurses provide an additional layer of support and comfort, allowing the patient to connect with their faith and find solace in prayer and spiritual guidance.
These actions, taken together, paint a picture of compassionate care that extends beyond the purely medical. The nurses' commitment to honoring the patient's faith, even in the absence of family, reflects a deep respect for their cultural and spiritual beliefs, ensuring that they feel seen, heard, and supported in their final moments.
Peaceful and compassionate passings
The statements, "We advocate for peaceful deaths” [Participant 6], “Free from suffering for both patients and their families" [Participant 2] and "Ideally, death should be comfortable and pain-free" [Participant 6]. articulate a profound shift in the approach to end-of-life care. This perspective transcends the traditional medical focus on cure and life extension, embracing instead a more holistic understanding of a good death. It acknowledges that dying is not just a biological event but a deeply personal and relational process, one that demands compassionate accompaniment for both the patient and their loved ones. The emphasis on minimizing suffering, both physical and emotional, speaks to a deep empathy for the multifaceted challenges faced by those nearing the end of life.
The quotes, "Our focus is on managing pain” [Participant 8], “Meeting patients wishes” [Participant 1] and “Attending and meeting patients needs" [Participant 4] translate this compassionate philosophy into concrete actions. Pain management is elevated from a mere clinical task to a cornerstone of care, reflecting an understanding that unrelieved pain can deeply impact not just physical comfort but also emotional and spiritual well-being. The emphasis on "meeting patients wishes" [Participant 3] speaks to a deep respect for patient autonomy, recognizing that individuals have the right to make choices about their own dying process, even when those choices might differ from medical recommendations. Finally, the commitment to "Attending and meeting patients needs" [Participant 6] underscores a holistic understanding of care that extends beyond treating physical symptoms to addressing the emotional, spiritual, and social dimensions of the human experience.
This patient-centered approach finds further expression in the statements, "Maintaining the dignity and respect of patients and their families is paramount" [Participant 2] and "Our goal is to provide comfort, dignity, and a peaceful passing" [Participant 7]. Here, dignity emerges as a guiding principle, shaping every aspect of care. It's a recognition that each human life, regardless of its proximity to death, possesses inherent worth and deserves to be treated with respect and compassion. This commitment to preserving dignity extends beyond the physical aspects of care to encompass emotional and spiritual well-being, ensuring that patients feel valued, heard, and supported throughout their final journey.