Although grieving is mainly defined as post-loss mourning, another type of grief might be experienced over a long period before the death of a loved one. The diagnosis of potentially fatal health conditions, such as COVID-19, may cause many critical reactions in dying persons and their relatives (Singer et al, 2020). The period between diagnosis and death is usually full of grief, anxiety, uncertainty, and fear. Anticipatory grief (AG) is the kind of grief experienced by a dying person and their loved ones before death occurs, and is similar to post-death grief (Simon, 2008; Holley and Mast, 2009).
As with the grief occurring after a person's death or loss, AG may result in somatic, emotional, cognitive or spiritual reactions (Simon, 2008). Somatic symptoms include sleep disorder, headache, nausea, fatigue, loss of appetite, confusion and amnesia, as well as poor concentration, decision-making, and problem-solving (Moon, 2016; Shore et al, 2016). There might be additional emotions experienced, such as denial and shock, concern and stress, separation anxiety, fear, annoyance, anger, helplessness, and a sense of guilt in patients or their families. Family relationships and dynamics might be affected, as well as relationships in the workplace and elsewhere (Kehl, 2005; Simon, 2008).
Prior to the COVID-19 pandemic, this grief was commonly experienced by terminally ill patients and their families. However, the researchers' personal experiences suggest that there appears to be an intensified rate of AG throughout the COVID-19 pandemic, exacerbated by quarantines and people's experience of isolation in their homes or institutions. The existing guidelines for the management of COVID-19 spread have led to limited physical contact between people who are following social distancing protocols. Given the current circumstances, it is to be expected that AG has increased, namely due to: the enormous pathogenic potential of this virus; burial ceremonies proceeding without family attendance and a lack of rituals to help process grief; hospital vistitation restrictions; constant news developments relating to COVID-19; the lack of any opportunity to say goodbye before the death of loved ones; and growing numbers of sudden deaths. The increasing AG rate during this pandemic may also be associated with: inaccurate information about disease progression and treatment; the actual treatment process; quarantining protocols; transportation restrictions; and impacts on income.
Therefore, grief and fear of death, leading to AG, appears to be an inevitable consequence of the COVID-19 pandemic, with family members of a patient diagnosed with the virus becoming distressed and mournful at the possibility of the death of their loved one (Singer et al, 2020). This grief is intensified if family members perceive this unexpected death as an unfair incident that cannot be stopped, or a sudden ending that gave no time to say goodbye. Patients with COVID-19 are usually in a critical condition at the time of admission to hospital wards, such as the intensive care units (ICUs), and may require therapeutic approaches that are either intrusive or inconsistent with the preferences of the patient and their family. Therefore, feelings of AG may be significantly aggravated by a patient's hospital treatment in an ICU (Glick et al, 2018; Carr et al, 2020).
Experiencing the death of a loved one, generally considered to be one of the most stressful and painful challenges one can face, can be rendered even more acute during a pandemic. Witnessing a loved one experiencing pain due to a fatal illness that may lead to their death is bound to invoke AG in family members. However, it is not only patients and their families that undergo these emotions; healthcare professionals also indirectly experience such grief. The high mortality rate among COVID-19 patients increases anxiety about death. Death anxiety is defined as emotional distress and worry that emerges as people feel threatened by imminent death or anticipate the dying moment, which can lead to psychological disorders and complicate the grieving process (Menzies et al, 2020). Healthcare professionals and frontline workers may also experience death anxiety due to the increased mortality rate of patients and their daily struggles with the impact of the pandemic on both services and their individual clinical practice. No study has yet been conducted on this particular topic, given previous research on death anxiety in healthcare professionals.
Given the prevalence of patients with various conditions (Soleimani et al, 2017; Lau et al, 2018) and the critical and complex conditions engendered by COVID-19, the possibility of death anxiety being present in healthcare professionals of COVID-19 patients is very likely. The death anxiety experienced by family caregivers and healthcare professionals may be complicated by the AG caused by their interaction with dying patients or obsession with a potential COVID-19 diagnosis in their family members or colleagues.
Signs and symptoms of anticipatory grief
Mental health support, palliative and psychiatric care and similar strategies should be taken into account when planning and allocating resources during the COVID-19 pandemic, recognising the impact of grief, especially AG. Supporting patients, families and healthcare professionals to face AG facilitates adaptation to probable losses. End-of-life care given during the COVID-19 pandemic could potentially identify individuals who are experiencing AG or are at high risk of a strong grieving reaction. More studies are needed on AG in response to COVID-19, owing to the several ways the pandemic impacts on people's lives. Otherwise, mental health providers will encounter higher rates of psychological disorders, such as complicated, long-lasting grief, depression, anxiety, and post-traumatic stress disorder (PSTD) caused by uncontrolled AG.
Recommendations for grief management in the context of the pandemic include:
- Healthcare professionals and family members should help individuals at risk of infection or infected patients with exacerbating clinical symptoms to accept that AG is expected under these conditions and allow them to express their feelings, cry and share their experiences with others. Patients must be aware of the restrictions imposed by their physical and mental conditions and should receive supportive resources. Patients should also take advantage of this opportunity to think realistically about what they are able to achieve considering the current situation, to say goodbye to their relatives, and to express their desires about how they intend to manage this end-of-life period. The dying patient can take part in future family planning to ensure that any problems after their death are alleviated (Simon, 2008)
- Initimate relationships between the patient's family members and healthcare professionals could lead to a reduction in long-term psychological distress and AG. It is important to manage the level of AG through clear planning for possible death. Social distancing has been a considerable barrier to free communication during the pandemic. The rate of readiness for death will be increased and the risk of pre-loss grief will be reduced if telemedicine platforms, telehealth services and other means of communication are used to expand the connections between patients, families, therapists and healthcare professionals (Singer et al, 2020; Wallace et al, 2020). The pandemic should not create a gap between patients, their families and healthcare professionals. Therefore, it is necessary to find innovative solutions and alternatives to keep communication open and prevent the risk of post-loss psychological disorders
- Improved communication between patients and their family members positively affects management of AG. Bereaved people require social and emotional support by their friends and families; however, the capacity to offer support has been seriously challenged during the pandemic. Many older people are shielding; in this case, emotional and physical needs might not be sufficiently met (Carr et al, 2020). Family-focused grief therapy can be used as an appropriate method to prevent complications by improving family functioning, examining integration and communication (thoughts and feelings), and managing conflict. This therapy frequently serves to mitigate distress and depression (Patinadan et al, 2020). In the context of the pandemic, many useful measures can be taken, such as spending a part of the day to make visual and audio calls that connect family members
- Psychotherapeutic approaches, including cognitive-behavioral therapy (CBT), narrative therapy and dignity therapy, can be adopted to manage AG (Coelho et al, 2018). CBT therapists usually employ techniques such as recognising and naming experienced losses, expressing relevant feelings and learning to accept losses. These may alleviate the intense emotional involvement of healthcare professionals and increase empathic care given to patients. Dignity therapy is another method compatible with the experimental model of dignity care. Dignity therapy aims to alleviate pain and to improve quality of life and dignity. Dignity therapy meetings give the patients an opportunity to express their most critical issues, especially when at the end-of-life period. As an auxiliary method, dignity therapy improves spiritual wellbeing, increases self-esteem, changes familial relationship, and reduces grief and depression (Patinadan et al, 2020). By attending different online psychotherapy meetings and reflection groups during the pandemic, patients, families and healthcare professionals can adjust to the grief of loss and prevent complications that may arise from poor grief management
- Inaccurate information about COVID-19, including regarding its cause, prevention methods, infection rates and potential treatments, may adversely affect the pre-loss grief severity (Singer et al, 2020). Therefore, accurate news and data can contribute to the reduction of AG
- AG may also stem from uncertainty and striving to understand the meaning of the future. Meaning-centred psychotherapy can facilitate a sense of comfort by helping patients and family members find meaning and purpose in adverse situations. Raising and discussing significant life questions make human beings seek self-actualisation and purpose, particularly when in pain and experiencing grief. Individual meaning-centred psychotherapy (IMCP) is an intervention that helps patients who are at the end of life to preserve their sense of meaning, comfort and purpose by using psychotherapy techniques and adaptation (Patinadan et al, 2020). This intervention can lead to improved spiritual wellbeing and quality of life. Strengthened perception of life meaning and purpose enables people to continue living despite significant adverse life events or impending death, which is more likely to occur during the pandemic
- Cultural, spiritual, philosophical and religious systems offer many ways to help people face different types of deaths. In response to pain, grief and loss, faith and spirituality can teach ways of managing feelings of hurt and grief (Bayod, 2020). The development of spirituality can affect problem-solving and coping strategies. As a form of social support, spirituality creates a sense of meaning, power and hope to cope with adverse events, leading to a decline in isolation and loneliness. Scholars have introduced spirituality as a fundamental aspect of coping with illness that can contribute to improved quality of life, important decision-making in end-of-life care, increased resilience and reduced pain (Shirkavand et al, 2018). Religion, spirituality or faith are used to cope with stress, life problems and ill health; therefore, spiritual coping strategies can be used to tackle the impact of COVID-19. The spiritual needs of patients and their families may be met by referring them to spiritual healthcare professionals
- Music therapy is used as an adjuvant treatment in palliative care centres and hospitals. Music therapy sessions provide recreational opportunities and creative expression for patients; In addition, music therapy empowers the therapeutic team to more effectively address problems related to quality of life and certain conditions and emotions, such as AG, depression, anxiety, and hopelessness. Spiritual issues can be expressed through the singing of religious songs (Hilliard, 2003). As a palliative approach, music therapy helps patients, families and healthcare professionals involved in AG express their feelings and cope better with grief.
- Alternative treatments, such as massaging, relaxation techniques, guided meditation and artistic expression, can be used to encourage being present, reminiscence, thoughts on any potential ‘afterlife’ and planning for the future. These interventions can reduce anxiety, stress and depression caused by fear of death and AG (Peryakoil and Hallenbeck, 2002; Cheng et al, 2010), thereby improving quality of life for patients and families.
AG, as experienced by patients, family members, and healthcare professionals, is to be expected in an uncertain life-threatening or end-of-life situation. The COVID-19 pandemic, however, has aggravated AG, due to both the impact of the virus itself and relevant infection control guidance, such as quarantining and isolation periods, which could hinder or problematise the usual forms of support that often ameliorate AG. Consideration should be given to the range of interventions noted here, to strengthen the resilience of patients, families and healthcare professionals.
- The nature of COVID-19 puts people at risk of anticipatory grief (AG)
- AG can have many emotional, psychological and physical effects for the patient, their family and healthcare professionals
- With proper planning, healthcare professionals, caregivers, community nurses and psychologists can alleviate this grief
CPD reflective questions
- How can levels of resilience in patients and their families be increased to prevent or manage AG?
- What is the role of the community nurse in preventing or addressing AG?
- How can this type of grief be prevented or addressed in healthcare professionals?