Navigating the path to care and death at home—it is not always smooth: a qualitative examination of the experiences of bereaved family caregivers in palliative care

Abstract

Background: Care and death at home are generally thought to be beneficial for families. However, there may be bereavement experiences and support needs, which are specific to family caregivers providing end-of-life care in their home. The Palliative Care Home Support Program in New South Wales, Australia, provides end-of-life care packages for patients who wish to die at home. These packages provide up to 48 hours of specialized supportive palliative home-based care, day or night, by community workers specifically trained for the task, working as part of existing community palliative care multidisciplinary teams. Care packages may include assistance with personal hygiene, carer respite, and domestic assistance. Methods: As part of a larger longitudinal mixedmethods study, 28 bereaved caregivers who experienced a home death and/or received the care packages undertook in-depth interviews. Narrative thematic analysis was undertaken to explore their experiences at 6 months post death. Results: Twenty-eight caregivers were experienced or planned for a home death and 21 had a package in place. Five themes were identified: "the achievements of a home death"; "taking on the mantle"; "the burden of witnessing the dying process"; "home as our space/their space"; and "resistance or submission to the ideals of best place of care for family caregivers." Conclusions: Bereaved caregivers provided accounts of their interactions with health care providers depicting a complex relationship with the care system. Some families struggled to manage boundaries of home and private space as care needs escalated. Ideals about best care and home death are sometimes conflicted, without easy consensus between patient, family, and service providers. Significance: Models of care based on assumptions that home death is straightforwardly beneficial may cause unintended consequences. For future policy, providing care in the private space of the home requires close attention to family concerns and outcomes.

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

“…The present study found no association between family caregivers’ need for more support and their QoL related to distress concerning the Patient condition , even though almost half reported that they wanted more support with Understanding their relative’s illness . Consistent with the results of other studies [ 45 , 46 ], many family caregivers in the present study commented that they were constantly worried about how the illness would affect them both in the future, whether the patient would suffer, and how they would be able to manage the symptoms. When the illness progresses to a more advanced stage and patient care becomes more complex, the family caregivers’ distress often increases [ 45 , 47 ] as more demands are placed on them [ 48 ].…”

“…Consistent with the results of other studies [ 45 , 46 ], many family caregivers in the present study commented that they were constantly worried about how the illness would affect them both in the future, whether the patient would suffer, and how they would be able to manage the symptoms. When the illness progresses to a more advanced stage and patient care becomes more complex, the family caregivers’ distress often increases [ 45 , 47 ] as more demands are placed on them [ 48 ]. In addition, family caregivers often face further distress when witnessing the dying process, which is often accompanied by physical deterioration and the patient’s loss of dignity [ 13 , 45 ], and the higher amount of time that family caregivers devote to the patient is associated with poorer QoL [ 49 ].…”

“…When the illness progresses to a more advanced stage and patient care becomes more complex, the family caregivers’ distress often increases [ 45 , 47 ] as more demands are placed on them [ 48 ]. In addition, family caregivers often face further distress when witnessing the dying process, which is often accompanied by physical deterioration and the patient’s loss of dignity [ 13 , 45 ], and the higher amount of time that family caregivers devote to the patient is associated with poorer QoL [ 49 ]. In line with this, family caregivers in the present study reported the poorest QoL within the domain related to concerns about the Patient’s condition , which is also highlighted in the comments.…”

Health- and social care in the last year of life among older adults in Sweden

“…Yet, in this study very few received formal support to family and relatives or respite service for informal care givers at home. This can be viewed in light of the commonness of unfinanced informal care givers, not seldom a preference and strive to provide palliative care at home in a private, comfortable and safe environment, instead of in an institution [26,27]. However, in this study hospitalizations due to psychiatric and neurological disorders, demanded a higher number of hospital days compared to other reasons for hospitalization.…”

Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

“…It is much more reassuring to have family members take turns taking care of patients than to seek assistance from foreign domestic helpers (FDHs), and such rotation of care can give each family member enough breathing room to take care of their own health. In addition, caregivers need time to themselves to allow them to maintain the role as care providers [ 30 ]. The psychosomatic symptoms of extended care are associated with the overload caused by the patient’s mental disorder and restlessness [ 31 , 32 ], and the filial duties associated with the long-term critical illness of parents presents a heavy burden.…”