Beate Lie Sverre

Background: Advance care planning provides a structured approach to conversations about values and preferences but is uncommon in clinical practice. We implemented advance care planning as routine at the initiation of an individually tailored palliative care pathway in Norway. An advance care planning conversation formed part of the initial care coordination meeting when palliative care was introduced to older patients with advanced cancer. Healthcare professionals met with the patient and their relatives at home. This study aimed to assess the feasibility and acceptability of including advance care planning with older patients in a home-based palliative-care coordination meeting. Methods: We conducted a longitudinal ethnographic study utilizing ethnographic interviews with patients and their relatives within 1 week and 4 weeks after the initial meeting, and with healthcare professionals immediately before and after this meeting. Data were analysed using content analysis. Results: All patients perceived the advance care planning conversation as useful. Proper preparation and information were prerequisites for successful outcomes. The presence of relatives, the home-based setting and healthcare professionals’ communication skills provided a comfortable atmosphere. Open discussions about sensitive topics were enabled, and the dialogue continued to evolve within the families after the conversation. However, the patients and their relatives perceived the follow-up and documentation as insufficient. Conclusion: Embedding advance care planning in a home-based palliative-care coordination meeting may offer a feasible model of its implementation for older patients with advanced cancer. The conversation was well accepted, but preparation and systematic follow-up were crucial for ensuring high quality.

Background: In today’s healthcare systems, older family caregivers who care for their spouses at home are indispensable providers of healthcare. However, many of these caregivers are at risk of becoming ill themselves. To prevent this and to guide the development of targeted healthcare services, home-care personnel need knowledge on how to promote the health of older family caregivers. The purpose of this study was to understand the health-promoting experiences of older family caregivers who care for their home-dwelling spouses receiving home-care services. Methods: The experiences of older family caregivers were explored using a narrative design that involved narrative interviews and a narrative thematic and structural analytical approach. The sample consisted of four husbands and six wives aged 79–91 years. In the analysis, two storylines of narratives were constructed: one by husbands and one by wives. Findings: In the husbands’ narrative, continuation of everyday life and social support in everyday life were highlighted as being health-promoting. In the wives’ narrative, the importance of having time for oneself and being seen, heard and included by the home-care personnel were emphasized as promoting their health. The husbands’ narrative contained stories of the past and the present, while the wives’ narrative mainly comprised stories of the present. Conclusion: This study has provided insights into the narratives of older husbands and wives acting as family caregivers regarding what promotes their health caring for their spouses at home. Their stories show variations in care style, coping style and experiences of the caregiver burden. These findings suggest that home-care services should consider providing customized health-promoting services to older family caregivers who are providing care to their home-dwelling spouses receiving home-care services. Given the sample size of only ten participants, further qualitative and quantitative research is needed.

The aim of advance care planning (ACP) is to enable patients to define and discuss their values and preferences to ensure that the care they receive is consistent with their needs and wishes. Most studies of ACP with older adults focus on conversations conducted in institutions. This study aimed to explore how ACP with older patients is carried out and experienced by healthcare professionals when the conversations occur in their private homes. The data were obtained from participant observations of ACP conversations in the homes of eight older patients with advanced cancer, which also involved relatives and healthcare professionals. Additionally, ethnographic interviews were conducted with the healthcare professionals. We undertook a narrative analysis of what was said, and how the individuals acted and interacted. The home influenced both the substance and form of the ACP conversations. The patients and relatives welcomed the healthcare professionals as guests and were encouraged to share their perceptions of their current situation, joys and worries. Their values were often implicit in their stories about past experiences. The planning mainly focused on life-prolonging treatment and the preferred future place of care. Several patients were not ready to discuss one or more ACP issues. The palliative-care-team physician addressed the patients’ readiness for ACP by asking for permission to move on to a different topic, shifting between serious and lighter topics, and using elements from the home as ‘door openers’ to continue conversations. ACP conversations were an essential basis for future palliative care and cooperation, giving important additional information about the patient and their relatives. Conducting the ACP conversations in the patients’ homes ensured a homely atmosphere that facilitated a caring approach when sensitive issues were discussed, and in turn supported the identification of important personal values. The healthcare professionals expressed that the ACP conversations represented an essential common reference point and provided a shared awareness of the expected disease trajectory and the values, preferences and needs of the patient. These findings are particularly important given that many older patients struggle to verbalize or form an opinion on issues affecting their future.