Abstract

Simple SummaryGrief is a common emotion felt by advanced cancer patients and their family caregivers, yet little is known of the relationship between grief in patients and caregivers, how grief in patients and caregivers changes as patients get closer to death, and the way advance care planning (ACP) relates to grief in both members of this “care pair.” In a sample of advanced cancer patients and caregivers, we found their grief tended to be synchronized and that, on average, patients’ grief remained stable whereas caregivers’ grief declined. Further, results revealed that completion of a living will (LW) for the patient increased levels of patient grief, while completion of a do-not-resuscitate (DNR) order decreased levels of caregiver grief. Results suggest that grieving may be synchronized between patients and caregivers and that while ACP may promote grief resolution for family caregivers, it is evocative of grief for patients.Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

Highlights

  • A common, nearly universal experience among advanced cancer patients and their family caregivers, grief prior to a loved one’s death remains an understudied topic

  • This is a secondary analysis of these data for the purpose of examining how grief changes in patients and their family caregivers as the patient approaches death and the influence of advance care planning on grief resolution of both patients and their family caregivers

  • Using data from our longitudinal, prospective cohort study of advanced cancer patients and their family caregivers, we found that grief in patients remained relatively stable over months approaching the patient’s death, while caregivers’ grief was shown to decrease over time

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Summary

Introduction

Nearly universal experience among advanced cancer patients and their family caregivers, grief prior to a loved one’s death remains an understudied topic. Grief in this context has been described as the anticipation of one’s own or a loved one’s future death, coupled with the navigation of prior and ongoing losses as a result of a terminal illness [1,2,3]. In contrast to caregiver grief in bereavement, grief near the end of a patient’s life is experienced by both the patient and the caregiver, as both are forced to confront the patient’s loss of functioning, autonomy, future goals, and, their life [12]. Despite a growing body of research examining psychosocial correlates of patient and caregiver grief near the end of patients’ lives, little is known of the course of grief for patients and family caregivers as patients approach death

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