Within the intricate tapestry of LTC, care aides stand as the backbone of caregiving, delivering a staggering 70-90% of direct care [3]. This positions them uniquely to shape the quality of life and end-of-life (EoL) experiences of residents [4,5,6]. Yet, the world of care aides is unlike any other in healthcare. These tireless professionals, known by various titles, operate without standardized educational requirements, legally defined scopes of practice, professional conduct guidelines, or regulatory bodies [3, 7,8,9,10].

Their roles are marked by limited autonomy, and they often find themselves marginalized and underrepresented in the global healthcare conversation [2, 7,8,9,10,11,12]. Care aides are predominantly women, with many urban centers in high-income countries hosting a significant number of migrant women among their ranks [6, 10, 12,13,14,15]. For instance, in Canada, which reflects global trends, care aides are primarily women over the age of 40, frequently speaking English as a second language [6, 14].

Despite their crucial role, care aides face a multitude of challenges that impact both their workplace satisfaction and the quality of care they provide. Instances of verbal abuse and violence from residents are an unfortunate daily occurrence [17, 18], and they often encounter bullying and incivility from fellow healthcare team members [19]. The demanding nature of their work often leads to rushed or omitted tasks due to time constraints [20, 21]. Furthermore, their training and preparation for the rigors of LTC are often deemed inadequate [11, 22, 23]. Even in the context of EoL care, care aides are taught to maintain emotional distance from residents, a coping strategy aimed at protecting themselves while delivering high-quality care [11].

The Emotional Toll of Caring

Internationally, death is a common occurrence in LTC facilities, with projections indicating that LTC will become the primary place of death for older adults by 2040 [24]. However, there is a significant oversight in recognizing the emotional toll on LTC staff, including care aides. They routinely witness death, dying, and grief as part of their daily routine, yet they are often overlooked when it comes to grief and bereavement support, as death is considered an inherent aspect of their profession [10, 25, 26]. Consequently, care aides grapple with burnout, high turnover rates [27], and moral distress [28]. While they experience grief at the loss of residents, formal avenues for healing and support are scarce, leaving care aides to rely on each other and their inner resilience [25, 29].

Lessons from the COVID-19 Pandemic

Even before the global COVID-19 pandemic, concerns had been raised about the inadequacy of training and support for care aides delivering EoL care in LTC, coupled with their high exposure to death [29, 30]. During the pandemic, Canadian LTC facilities witnessed the highest rates of excess deaths worldwide, exposing care aides to an unprecedented number of fatalities [31]. While this study’s data was collected prior to the pandemic, its insights into the experiences of care aides delivering EoL care remain invaluable for understanding the challenges faced by this workforce and the personal toll it takes on them.

Bridging the Gap: From Study to Action

This study adds to the growing international literature aimed at understanding the experiences of care aides delivering EoL care in LTC settings in high-income countries. The findings of this study align with existing literature, shedding light on the trauma associated with residents’ deaths, the inadequacy of care aide preparedness for EoL experiences, and the dearth of support provided to care aides in coping with the emotional toll of EoL care on their well-being and workplace satisfaction [6, 11]. These findings underscore the need for changes to be implemented at the individual, institutional, and societal levels to better support the EoL care experiences of care aides in LTC.

Individual Level: Preparing for EoL Care

At the individual level, it is imperative to revamp training programs to adequately prepare care aides for the demands of EoL care delivery. The study highlights the concept of ‘just keep going,’ a notion that ties into the emotional labor described by Hochschild [39]. It resonates with the process of ‘surface acting’ or ‘hiding behind your smile’ as identified by Johnson [40] in her study with care aides in LTC. It’s crucial to recognize that care aides, despite often being overlooked, bring an emotional labor of caring to their roles. They need training and support to navigate the emotional aspects of delivering EoL care. Additionally, participants in the study confirmed that they were often tasked with providing grief support to deceased residents’ family members. This highlights the need for comprehensive training that prepares care aides for these additional roles that go beyond their job descriptions. Training programs should also focus on selecting individuals with prior experience and societal awareness of LTC settings, especially concerning EoL experiences.

Institutional Level: Embracing a Culture of Grief Support

At the institutional level, the findings emphasize the necessity of a cultural shift within LTC settings worldwide. Institutions should embrace EoL care delivery and acknowledge the grief associated with it as an integral part of the caregiving process. Staff should be allowed the space to grieve without guilt or stigma. Studies, such as the one by Marcella and Kelley in 2015 [25], have found that “death is hidden within LTC culture.” Despite some progress, there remains a lack of training and formal mechanisms for grief support, indicating that culture change is still needed in LTC settings. A recent review by Gonella et al. [44] also highlighted that delivering good EoL care involves significant work for staff, especially if they lack training in this area. Thus, education and inter-professional collaboration are crucial for improving EoL care, even though staff turnover remains a challenge. Institutions should develop and enact comprehensive bereavement policies both within LTC facilities and as part of standardized international health and care systems to help care aides process the emotions and grief related to delivering EoL care to residents in LTC.

Societal Level: Demystifying the EoL Experience

On a societal level, there’s a pressing need to demystify the EoL experience, particularly within the context of LTC. The study aligns with the growing body of literature advocating for open discussions about death and EoL, recognizing that these conversations are not commonplace. Initiatives like Death Cafes, community interventions that include education and open discussions, and incorporating discussions of death in university programs are examples of creative mechanisms pushing this dialogue forward. These discussions should also encompass the experiences of care aides, who often deal with significant excess deaths, potentially leading to ongoing trauma. National dementia plans and strategies should incorporate EoL care in LTC and prepare the care workforce to effectively support it [54].

This study provides valuable insights into the perspectives, experiences, and working conditions of care aides delivering EoL care in LTC. To ensure the health and well-being of this essential workforce globally, care aides need appropriate training and preparation for EoL care delivery, along with mechanisms to support their mental health and emotional well-being. Preparation and training should include a focus on the emotional labor associated with the care aide role, and institutions should foster a culture of grief support. At the societal level, it’s time to normalize discussions about death and EoL, recognizing that these are integral parts of the human journey. This study serves as a call to action, emphasizing the need for comprehensive changes that encompass individuals, institutions, and society as a whole to better support care aides in delivering compassionate EoL care.

Limitations

It’s essential to acknowledge the limitations of this study. It is a case study based on a specific LTC floor in a larger care setting. While participants shared their generalized experiences from various facilities, the findings are drawn from diverse experiences across different LTC settings. Additionally, the ethnicity of the participants in this study was predominantly white, whereas the care aide population in Canada, the US, and the UK comprises a more diverse demographic. Future research endeavors should consider the ethnic diversity within LTC to ensure underrepresented populations are heard and adequately supported in scientific literature.

Conclusion

In conclusion, the journey of care aides in the realm of LTC is a testament to their unwavering commitment to providing compassionate care, and their voices deserve to be heard. The insights gained from this study shed light on the challenges faced by care aides and serve as a clarion call for change at multiple levels. By addressing these challenges, we can better support these dedicated professionals in their crucial role of providing comfort and care to those in their final journey of life.

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