INTRODUCTION
Liu et al[1] observed that family members of patients with late-stage cancer have relatively low awareness of hospice care. Compared to the family members of middle-aged and elderly patients with late-stage cancer, youth family members seem to have a higher awareness of hospice care, a greater attitude of acceptance and compliance, and a greater willingness to choose hospice care. Hospice care involves a comprehensive and demanding care pathway that takes into consideration the various needs of the terminal patient. In addition to clinical care, hospice care includes psychological and spiritual care. The goal of these treatments is to alleviate overall pain; from a medical standpoint, it involves relief from physical pain but is also linked to psychological suffering that results in emotional, adaptive, and behavioral responses[2]. The palliative care team seeks to support the patient by responding to possible doubts and questions and to activate support and assistance aimed at stimulating the process of acceptance. This represents a necessary instrument in facing this particular phase of life and improving the psychophysiological well-being of the person.
Psychological and social intervention at the end of life is extremely important in the perspective of a multidisciplinary work context. In this case, the role of psychological work is to develop a care plan centered on the patient and their needs[3]. Personalized care is necessary and should be adapted for each individual’s specific illness, resources, and needs. The focus is on exploring the patient’s life and family history and identifying the meanings and values that guide individual choices in terms of how the subjects view death and what they are leaving behind. In this perspective, it is very important to establish a good therapeutic alliance to approach both the patient and their caregivers[4].
While there are several strategies for supporting grief and preventing burnout among healthcare professionals, there are still notable gaps in grief support, especially in hospice settings. Many healthcare workers, especially those new to hospice or palliative care, lack formal education on grief and burnout prevention, which can lead to emotional strain and increased turnover rates. Many healthcare organizations provide grief support only on an episodic or short-term basis, which is insufficient in addressing the cumulative emotional toll of caring for terminally ill patients over time. Many hospice teams lack formalized peer support structures, leaving staff without necessary emotional guidance or outlets to express distress in a safe, nonjudgmental environment. Healthcare workers may not be adequately trained in providing grief support that is culturally sensitive, which is especially important in diverse populations[3,4].
This paper explores the experiences of mourning and grief in hospice settings, with a focus on the emotional challenges faced by both patients and caregivers during the grieving process. We conducted a comprehensive literature search to identify relevant studies published between 2010 and 2023. Databases such as PubMed and Web of Science were searched using a combination of keywords including “mourning”, “grief”, “caregivers”, “psychological work”, and “hospice”. To ensure the relevance and quality of the included studies, specific inclusion and exclusion criteria were applied. Studies were included if they were original research or reviews focusing on adult populations and were published in English. Studies that were not in English or that focused on pediatric populations were excluded from the research.
PSYCHOLOGICAL WORK IN FACING GRIEF AND IN THE ELABORATION OF MOURNING
Mourning and grief are intertwined emotional responses to the loss of a loved one. While mourning refers to the outward expression of grief, grief itself is the internal emotional experience that arises from loss. In the context of hospice care, these processes become more complex as they extend over time, beginning long before the patient’s death. By design, hospice care is aimed at providing comfort, dignity, and quality of life to individuals with terminal illnesses, while also offering support to their families and caregivers. Psychological work is directed towards the patient in terms of accepting the illness and the end-of-life process, towards family members in terms of accepting the illness of their loved one and then later dealing with the grieving process, and towards healthcare professionals in terms of preventing burnout, who are exposed daily to the inherent suffering in their work[5]. Working closely with pain and the process of dying involves healthcare workers on a personal and human level before a professional one. If this suffering is not recognized and addressed, it can cause a series of difficulties that affect the health of the worker and the healthcare of the patient and their family. Among these difficulties, there is a form of emotional exhaustion known as compassion fatigue, which is the exhaustion of the operator in maintaining compassionate attitudes, behaviors, relational exchanges, care towards patients, and moral distress, which is a loss of meaning and moral uncertainty regarding one’s work[6,7].
Illness is a terrible experience that can be life-threatening and can sometimes force us to live in fear. It is not easy to elaborate, and it forces us to deeply reflect and not forget our own weakness and fragility or that of our loved ones. Illness represents a threat to each of us for our own physical existence. Therefore, the reaction following any serious diagnosis corresponds to a real “trauma shock”, which leads to a transition from the idea of oneself as a person to the idea of oneself as sick with an uncertain life trajectory and a body that can “betray”[8]. For example, oncological disease embodies a painful and traumatic life experience, causing significant changes for the individual patient and for the patient’s entire family system. In fact, events that create obstacles and difficulties for the family occur throughout the life cycle and are considered real crises. However, oncological disease represents an extremely complex experience, creating new and often unexpected challenges.
There is a significant “reverberation” of emotions within various family systems affected by illness or death. The deep grief, perceived injustice, and strength of the deep bonds within the family system will create emotional, behavioral, relational, or somatic symptoms, which can be understood as channels of expression and communication with the outside world. Considering these changes, the family environment becomes more important, providing the context for the patient to adapt, react to their diagnosis, evaluate the event and their own coping abilities. This all occurs in relation to the meaning that the family carries to the patient, which are learned and transmitted trans-generationally. In these conditions, the history of the illness and the suffering connected to it can become so overwhelming that it disrupts the normal life cycle of all core family members, necessitating the preservation of one’s identity as an individual and as a group member, as well as adapting to consequences that emerge[9].
Grief is a painful state that involves inhibition and limitation of the ego, which can be overcome through genuine psychological work. Processing grief means being able to think about what comes after, to think about something that seemed unthinkable and to start to represent something that seemed unrepresentable. Thinking about what comes after opens the individual up to hope, to something new, and to the possibility of imagining that there is something unknown that is worth getting to know. Overcoming grief challenges us to remain emotionally alive in a world impoverished by the absence of the object of our love. The birth of a new hope comes from a vital force related to our ability to tolerate and accept separation and loss[10]. Grief can also be viewed as a universal or original maturation process as it begins at the very start of life and is inherent to growth. It is a fundamental psychological process that unfolds throughout one’s entire life, in which the Ego is faced with the need to let go of total possession of the object. Working on grief can help an individual do genuine psychological work over time and to engage in authentic contact with reality, to navigate through one’s pain, and to complete the grieving process, which requires one to become more capable of facing internal and external realities, experiencing emotions, and accessing the possibility of change and growth.
The price that the subject pays if they do not do the grieving work is very high; in exchange for escaping the pain of loss, those who do not engage in the grieving work experience a sense of lack of life due to being immersed in a “frozen” reality, without the possibility of processing the loss in the external reality and of authentically connecting with their emotions. Furthermore, the inability to master the pain and attempt to set it aside could transform feelings of disappointment, loneliness, and anger into something resembling “joy, exultation, and triumph” and immerse the patient in a state where omnipotent thinking prevails to the point of leading to a manic reaction[10-12].
Grief is a deeply personal experience, and while there are common elements that unite grieving individuals, it is uniquely experienced by each person. In hospice care, grieving often begins prior to the death of the patient, as family members and caregivers anticipate loss. This anticipatory grief can involve a mixture of sadness, fear, guilt, and even relief, particularly if the patient has been suffering from a long-term or painful illness[13]. Research indicates that anticipatory grief can have both positive and negative effects. On the one hand, it allows caregivers to emotionally prepare for the upcoming loss, providing an opportunity for final goodbyes, reflection, and emotional closure. On the other hand, it can lead to emotional exhaustion and feelings of helplessness, particularly if the caregiving process is long and grueling[14]. Once death occurs, mourning shifts to a more profound emotional experience, one that can last for months or even years. Grief following a death is often described as a series of stages: denial, anger, bargaining, depression, and acceptance. These stages are not necessarily linear, and individuals may revisit or experience multiple stages simultaneously[15].
Post-loss adjustment is a complex and multifaceted process that involves navigating a multitude of emotional, social, and practical changes following the death of a loved one. For caregivers, this period can be particularly challenging as they transition from the intensive demands of caregiving to coping with the absence of the person they cared for. Emotionally, caregivers often experience a profound sense of loss that is compounded by feelings of emptiness and identity disruption. The caregiver’s role, which may have been a significant part of their daily routine and personal identity, suddenly vanishes, leaving a void that can be difficult to fill. Coelho et al[16] emphasize that this sense of loss can lead to a variety of emotional responses, including sadness, anger, guilt, and even relief, each of which needs to be acknowledged and processed. The sense of loss can be compounded by feelings of emptiness and identity disruption, as the caregiver’s role suddenly changes[17]. Providing targeted support during this time is essential to help caregivers navigate their grief and rebuild their lives.
Financial insecurity is another significant challenge in post-loss adjustment. The death of a loved one can lead to immediate financial instability, particularly if the deceased was the primary breadwinner. Moss et al[18] highlight the importance of financial planning and support during this time. Caregivers may need assistance navigating financial matters, such as managing inheritance, dealing with insurance, and adjusting to a new budget. Access to financial advisors and support services can be crucial in mitigating the financial stress that accompanies loss. Social support plays a vital role in helping caregivers adjust after loss. Maintaining social connections can provide emotional support and practical assistance. Support groups and peer support initiatives are effective in fostering a sense of community and reducing feelings of isolation. These groups offer a space for individuals to share their experiences, receive validation, and find comfort in knowing they are not alone in their grief[19]. The physical health of caregivers is another critical aspect of post-loss adjustment. The stress of caregiving, followed by the emotional toll of loss, can have significant impacts on physical health. Lin and Fan[20] emphasized the importance of prioritizing self-care during this period. Caregivers should be encouraged to seek medical attention for any health issues, engage in regular physical activity, maintain a balanced diet, and ensure they get adequate rest. Healthcare professionals can play a key role in monitoring the physical health of bereaved caregivers and providing necessary interventions.
Moreover, caregivers often face additional challenges such as burnout, compassion fatigue, and vicarious trauma. Burnout is characterized by physical, emotional, and mental exhaustion due to prolonged stress and overwork. It can manifest as feelings of cynicism, detachment from work, and a sense of ineffectiveness. To address burnout, caregivers can benefit from implementing self-care routines, such as regular exercise, healthy eating, and ensuring adequate sleep[21]. Seeking professional support through counselling or therapy is also crucial in managing stress and emotional exhaustion. Additionally, respite care, which allows caregivers to take breaks and recharge, plays a vital role in preventing burnout[22].
Another significant challenge is compassion fatigue, which results from the emotional strain of caring for individuals in distress. This condition can lead to feelings of hopelessness and indifference, reducing the caregiver’s ability to provide compassionate care. Practical strategies to manage compassion fatigue include engaging in mindfulness practices, such as meditation and deep breathing exercises, which can help reduce emotional strain. Participating in peer support groups where caregivers share their experiences and receive emotional support can also alleviate feelings of isolation. Furthermore, regular debriefing sessions with colleagues can provide an opportunity to discuss difficult cases and process emotions, preventing emotional numbness[23].
The third major challenge is vicarious trauma, which occurs when caregivers internalize the traumatic experiences of those they care for. This can lead to intrusive thoughts, heightened anxiety, and difficulty managing emotions. To mitigate vicarious trauma, professional counselling is essential, as it helps caregivers process traumatic experiences and develop effective coping mechanisms[24]. Trauma-informed training can educate caregivers about the effects of trauma and how to manage it, thereby reducing the impact of vicarious trauma. Creating a supportive work environment that acknowledges and supports the emotional well-being of caregivers is also critical in preventing and addressing vicarious trauma[25].
THE CAREGIVER BURDEN
In hospice care, grief is not experienced solely by the patient’s family or loved ones. It also impacts the caregivers who provide daily support. These caregivers can be both informal, such as family members, or formal, such as hospice nurses and aides. In either case, caregivers are at risk of experiencing profound emotional strain, particularly when they become emotionally invested in the patient’s well-being and subsequent loss. The concept of the “emotional boomerang” in the context of grief and caregiving is a powerful metaphor that highlights the complex interplay of emotions and behaviors during and after a significant loss. When individuals become deeply invested in caring for a loved one who is ill or dying, they may experience a profound shift in their identity and sense of purpose. Emotional fluctuations can be triggered by various factors such as anniversaries, holidays, or even seemingly unrelated events that remind them of their loss. It is crucial for family members and friends to understand that these emotions are a natural part of the grieving process and to offer continuous support and empathy. Fernández-Alcántara et al[26] discuss new perspectives in bereavement and loss, focusing on complicated and disenfranchised grief along the life cycle. They highlight the complexity of emotions after the loss of a loved one and the importance of recognizing and addressing disenfranchised grief. Seiler et al[27] provide a comprehensive review of the psychobiology of bereavement, examining how grief impacts mental and physical health through the social signal transduction theory of depression. This review emphasizes the importance of understanding the biological underpinnings of grief to better support bereaved individuals. Li et al[28] conducted a bibliometric analysis on grief interventions, exploring the developments in the field and identifying key themes such as bereavement, grief, depression, and palliative care.
As individuals approach the end of life, caregivers find themselves in unique emotional positions, often managing their own grief while supporting their loved ones through the dying process. Family members who take on the role of caregivers, that is, those who actively take care of the sick person, play a crucial role as they respond to the patient’s needs both in terms of basic care and emotional support. This implies that they are exposed to a series of stressful factors that can lead to the development of physical and/or psychological disorders, especially for those who are less adept at using effective coping strategies or who struggle to address the issue of illness. The caregiver burden should be understood as a multidimensional phenomenon that involves the caregiver in their role of caring for a sick family member and can be described as a subjective experience of overload related to caregiving. The burden can involve different dimensions. For example, it can be related to the amount of time spent caring for the patient and taken away from one’s own needs. Evolutionary burden consists of the feeling of being excluded from the opportunities for life, work, career, and fun that the average caregiver’s peers experience. The physical burden represents the negative impact on one’s own health because of the caregiving load.
The caregiver of a chronic or terminal patient live in a condition where neither short-term nor long-term perspectives offer a solution to the disease, which can remain stable for many months or years or end in the short term with an unfavorable outcome. The emotional experience of feeling trapped sets in, as if every personal space were invaded, and taking care of the patient begins to feel like an obligation that is impossible to escape. In this sense, the caregiver experiences their stress as devoid of any possibility of resolution, which only increases their perceived level of stress[9]. This causes psychological suffering as they anticipate the imminent and inevitable death of their loved one. It is the typical form of suffering experienced by family members of terminally ill or terminally diagnosed individuals and covers a very particular time of mourning: The one in which we take time to say goodbye to the loved one, to review the relationship and, above all, to accompany the other towards death.
It is a time when grief manifests itself as a complete dedication to the other and his or her needs, to the point of completely identifying with the loved one and his or her illness. While this is essential to provide the other with the necessary support during moments of physical and psychological vulnerability, it can become an “emotional boomerang” that upon the concrete loss, materializes in a feeling of desolate loneliness and uselessness, exacerbating the caregiver’s sense of despair and longing. Caregivers in hospice settings face a unique set of emotional and physical challenges. Family caregivers, often spouses or adult children, are typically tasked with providing daily care and emotional support to their loved one while managing their own emotional responses to the impending loss. Hospice staff, including doctors, nurses, and chaplains, work to alleviate physical pain and emotional suffering, but they cannot fully shield caregivers from the emotional burden of anticipatory grief and mourning after death.
Caregivers’ grief experiences can be more complicated than those of other family members because they may feel a deep sense of responsibility for their loved one’s suffering. This responsibility can create feelings of guilt, especially if the caregiver is unable to prevent suffering or if there is a sense that the death could have been avoided. The caregiving role is emotionally taxing, with many caregivers experiencing caregiver burnout. This state of physical and emotional exhaustion arises from the constant demands of providing care, particularly in the final stages of life. Caregivers may experience symptoms of depression, anxiety, and social isolation due to the overwhelming responsibility placed upon them[29].
Moreover, the grief process for caregivers is often delayed. Many caregivers suppress their own grief to focus on providing care to the patient. It is only after the death that they can process their feelings of loss. This delayed mourning can exacerbate the emotional toll. Caregivers may also face difficulty in reconciling their roles as caregivers and mourners, as they shift from providing care to experiencing the pain of losing someone they have nurtured for months or years. One of the most crucial steps is to allow oneself to grieve. Suppressing emotions can prolong the healing process. By acknowledging and accepting the full range of feelings, from sadness and anger to guilt and relief, individuals can begin to process their loss. Sharing these emotions with trusted friends, family members, or a therapist can provide valuable support and perspective. Seeking support can be instrumental in the healing process. Support groups offer a safe space to share experiences and connect with others who understand. Additionally, therapy can provide individuals with the tools and techniques necessary to cope with grief, such as cognitive-behavioral therapy or mindfulness-based stress reduction. Self-care is another essential component of the healing process. Engaging in activities that promote physical and emotional well-being, such as regular exercise, a healthy diet, and sufficient sleep, can help restore a sense of balance. Practicing relaxation techniques such as meditation or deep breathing can also be beneficial.
CHALLENGES FOR HEALTHCARE PROFESSIONALS
The focus of this paper is to examine how mourning and grief manifest in hospice care settings, with particular attention to the emotional burdens and coping strategies of caregivers. By understanding these dynamics, better support structures can be developed for both patients and caregivers, ensuring that the process of grief is managed in a healthy and constructive manner. Healthcare professionals should be aware of the complex interaction between biological disease and the psychological state of the patient, as well as the effects that the illness has on psychological and relational levels. A deep understanding of these phenomena would allow for the planning of suitable support interventions aimed at improving collaboration among family members and between the family and healthcare providers, while also promoting better processing of events or critical stages that they are facing. Indeed, it is important to consider how in the development of the disease, individual behaviors and relational styles of each person reciprocally influence each other. This results in values, beliefs, behaviors, and thinking styles of family members interconnected in a complex logic of reciprocal interactions, determining the construction of adaptive, behavioral, and emotional response patterns modulated by each person’s history[30]. Given the emotional complexity of mourning and grief, it is essential that caregivers and patients receive the support they need throughout the hospice process. One of the key elements of hospice care is the provision of psychosocial support, which includes counselling, therapy, and spiritual care. This support is not just for the patient, but also for their family members and caregivers, who are often struggling with their own emotional pain.
Hospice staff, particularly social workers and chaplains are trained to help caregivers navigate the difficult emotions associated with both anticipatory grief and post-death mourning. Offering caregivers a space to express their feelings, reflect on their experiences, and seek guidance can help alleviate the emotional burden they bear. Grief support groups for caregivers are a valuable resource. These groups allow caregivers to connect with others who are experiencing similar emotions, providing a sense of community and shared understanding. Support groups can help normalize the grieving process and offer practical coping strategies, as well as a safe space to discuss the complexities of caregiving and loss. Umphrey and Cacciatore[31] underscore the role of support groups in providing a safe space for bereaved parents to share their stories and find solace in communal healing. Their study reveals how group support can alleviate feelings of isolation and provide a network of empathy and understanding. In addition to formal support, it is critical to acknowledge the role of informal support networks - friends, extended family members, and community groups. These networks provide essential emotional support and can help alleviate feelings of isolation that caregivers often experience. Encouraging caregivers to maintain these relationships during the hospice process is crucial to their well-being[32].
The need for empowerment and support for the family and the patient emerges in psychological work, though its positive potential is limited by personal and interpersonal dynamics that are often dysfunctional[33]. Psychological support, whether group or individual, offers a protected space in which individuals can recognize existing difficulties and address them in the best way possible by focusing on the development of greater communication and exchange skills, on facilitating emotional expressiveness, and on sharing the emotions determined by their lived experience, as well as, in more complex cases, on cognitive restructuring of the experience of illness. Rebuilding one’s identity can be a gradual process. It is important to remember that healing takes time and that everyone’s experience of grief is unique. The emotional journey of a caregiver is often marked by complex and challenging emotions. By recognizing and addressing these challenges, healthcare providers and support organizations can play a vital role in improving the well-being of caregivers and enhancing the quality of care they provide.
In summary, healing caregivers and preventing burnout among healthcare professionals in hospice settings, particularly during the grieving process, require specific strategies: (1) Emotional support, by providing spaces for caregivers and healthcare workers to express feelings, such as counselling services, peer support groups, or supervised reflection time[34]; (2) Adequate training, by educating healthcare professionals about grief stages, recognizing burnout, fostering resilience and offering coping strategies[35]; (3) Workload management, by implementing reasonable caseloads and ensuring time for breaks to prevent exhaustion and allow for emotional recovery[36]; (4) Regular supervision and debriefing, offering opportunities for staff to debrief after challenging cases, sharing experiences and concerns; (5) Creation of a supportive environment, fostering a team-based approach where colleagues provide mutual support and share resources for managing stress and grief; and (6) Recognition and appreciation, acknowledging the emotional and mental strain healthcare workers experience in end-of-life care, showing appreciation for their contributions to prevent feelings of undervaluation[37]. Cultural and social differences significantly influence mourning processes and the implementation of grief interventions. For example, some cultures emphasize collective mourning practices, such as community gatherings and rituals, which can provide social support and validation for the grieving individual[38]. In contrast, other cultures may value private expressions of grief, which can impact the availability and acceptance of certain grief support services[39].
There is a need for culturally competent grief and burnout prevention strategies that acknowledge and respect diverse mourning practices and emotional responses. Understanding how different cultures express grief is crucial for offering effective support. Grief practices and emotional responses can vary widely across cultural groups, so it is important for healthcare professionals to be aware of these differences to avoid misunderstandings and provide respectful care. Healthcare providers should undergo cultural competence training to better understand the grieving processes specific to different cultural, religious, or ethnic groups[40]. This includes acknowledging the importance of rituals, community support systems, and spiritual beliefs in the grief process. For example, understanding how different cultures express grief is crucial for offering effective support, recognizing the importance of family, community, and religious leaders in the support network and involving them in the grieving process when appropriate. It is pivotal to adapt communication style to the needs of the family or patient and to be aware of non-verbal cues and understanding when direct communication may be inappropriate or when cultural taboos need to be respected. Culturally competent grief and burnout prevention strategies are essential for providing effective support to caregivers and healthcare workers in diverse communities. These strategies ensure that grief counselling, burnout prevention, and emotional support are tailored to the unique cultural beliefs, practices, and needs of individuals.
Understanding these cultural nuances is vital for healthcare professionals to appropriately tailor their interventions, ensuring they are respectful and effective within the specific cultural context of the grieving individual[41]. Longitudinal studies that explore how grief impacts healthcare professionals over time, especially those working in high stress, emotionally charged environments like hospice care are warranted. Telehealth and digital resources are being increasingly used to support grief counselling and provide resources for caregivers, particularly in hospice and palliative care settings. These platforms offer accessible, flexible, and often cost-effective solutions for caregivers who may not have easy access to in-person counselling or support services. The use of telehealth and digital tools has grown due to the increasing demand for mental health support and the barriers that physical distance, time constraints, and caregiving responsibilities pose[33,42]. Grief counselling and burnout prevention programs for healthcare workers can also benefit from telehealth and digital tools. Virtual grief counseling, peer support forums, and digital training for emotional resilience can support healthcare workers who experience emotional fatigue from caring for terminally ill patients[43]. As digital health platforms continue to evolve, they hold promises to provide more personalized, continuous, and culturally sensitive support for grief and caregiver burnout.
CONCLUSION
Hospice care providers must offer comprehensive support that addresses the emotional, physical, and social needs of both patients and caregivers throughout the process of grief and mourning. By acknowledging and validating the experiences of caregivers, hospice providers can foster a supportive environment that aids both the patient and caregiver in navigating one of the most challenging periods of their lives.
Provenance and peer review: Invited article; Externally peer reviewed.
Peer-review model: Single blind
Specialty type: Medicine, research and experimental
Country of origin: Italy
Peer-review report’s classification
Scientific Quality: Grade D, Grade D
Novelty: Grade C, Grade C
Creativity or Innovation: Grade C, Grade C
Scientific Significance: Grade C, Grade C
P-Reviewer: Feng HQ S-Editor: Wei YF L-Editor: Filipodia P-Editor: Wang WB
