Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit

Abstract

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members’ experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians’ compassionate caring for both patients and families through the “little things” or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient’s death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient’s death. Most importantly, the notion that ACP as a social process may be a “gift” to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

Readiness for advance care planning and its relationship to coping style in patients with chronic diseases in communities: A cross‐sectional study

“…Informal ACP could serve as a preparatory step that leads to a formal type of ACP because such discussions provide an opportunity for the family members and healthcare providers to understand patients’ preferences regarding end‐of‐life treatments during disease trajectory (Hong & Kim, 2020 ). Informal ACP is associated with decreasing the use of life‐sustaining treatments and promoting goal‐concordance care (Johnson et al., 2018 ; You et al., 2014 ) and is beneficial for family members both during the hospitalization and afterwards in bereavement (Bandini, 2020 ).…”

Expressing grief through metaphors: family caregivers’ experience of care and grief during the Covid-19 pandemic

“…During the first wave of COVID-19, it was often difficult to connect with clinicians and thus to feel their compassion. Our results call for support initiatives and interventions aimed at promoting social connections among clinicians, patients and their families, because as we know the social and emotional support of relatives and clinicians is crucial to bereaved persons (Bandini, 2020 ; Chan & Chan, 2011 ; Rodger et al, 2007 ; Wilson et al, 2016 ).…”

“…This story often relied on feelings of closeness, commitment and presence, which had nothing to do with the experience of being cut off during the final weeks of his/her life. Scientific literature indicates that commitment to end-of-life care decisions and preparation for death are beneficial for family caregivers both during the hospitalization and afterwards in bereavement (Bandini, 2020 ; Breen et al, 2018 ; Mitima-Verloop et al, 2021 ). During the first wave of the COVID-19 pandemic, those significant actions were limited, which may have left family caregivers with a strong impression of living a blocked, disrupted relationship with the loved one.…”

“I couldn’t”: A phenomenological exploration of ethical tensions experienced by bereaved family members during the pandemic

“…In that respect, the context of the pandemic raised ethical dilemmas that, in turn, deprived families of the reciprocity that underlies ethical responsibility. Such reciprocity, as part of a meaningful connection with the other as death approaches (Holm et al, 2019 ; Otani et al, 2017 ; Pattison, 2020 ), is, however, important to provide a “good enough” accompaniment and create a sense of accomplishment that gives meaning to the life we had and the life we face now without the deceased (Bandini, 2020 ; Totman et al, 2015 ; Vachon, 2014 , 2020b ).…”