Family caregivers’ experiences of end‐of‐life care in the acute hospital setting. A qualitative study

Abstract

Background Acute hospital settings are generally not considered adequate places for end‐of‐life care, but terminally ill patients will continue to die in acute medical wards in the unforeseeable future. Aim The aim of this study was to investigate family caregivers’ experiences of end‐of‐life care in an acute community hospital in Iceland. Methods Fifteen in‐depth qualitative semi‐structured interviews were conducted with participants who had been primary caregivers. The transcribed interviews were analysed using thematic content analysis. Findings Findings indicated that the acute hospital setting is not a suitable environment for end‐of‐life care. Effective communication and management of symptoms characterised by warmth and security give a sense of resilience. Three main themes emerged: (1) Environmental influences on quality of care; (2) Communication in end‐of‐life care; (3) The dying process. Each of the themes encompassed a variety of subthemes. Conclusions Findings suggest that effective communication is the cornerstone of quality of care in the acute hospital environment and essential for establishing a sense of security. The severity of symptoms can deeply affect family caregivers’ well‐being. Acknowledging and appreciating the meaning of respect and dignity at the end‐of‐life from family caregivers’ perspective is vital.

Palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families in rural communities of Indiana, USA

“…Caregivers showed hesitancy to disclose home remedies or alternative medical approaches used to manage their patient's pain and symptoms. Similar findings were also reported in previous literature 19,26 . Families need to feel culturally valued in health care settings so they can share their illness experiences and choose treatment options freely, without any fear of being judged or discriminated 20,27 .…”

“…Similar findings were also reported in previous literature. 19,26 Families need to feel culturally valued in health care settings so they can share their illness experiences and choose treatment options freely, without any fear of being judged or discriminated. 20,27 Engaging family in the treatment process would facilitate communication and make difficult conversations easier.…”

“…Caring roles include providing medical and nursing care, handling communication, and supporting daily care activities for their care recipients 5 . It is interesting to note that most of these women have no paid help and have lower education, low household income, and little or no health insurance 18,19 . These factors raise unique challenges for rural caregivers and affect their ability to provide effective palliative care to their frail older adults.…”

Learning needs and perceived barriers and facilitators to end-of-life care: a survey of front-line nurses on acute medical wards

“… 30 However, when death is an expected outcome for seriously ill individuals and a curative approach is either not available or not desired, the focus of care needs to shift. 31 Consensus statements from India and Australia outlined common themes that encompass a ‘good death’. They highlight the importance of communication being open, honest and patient-centred, the need to address individual preferences during the dying process, adequate symptom management and support for loved ones in the perideath period.…”

Teams and continuity of end-of-life care in hospitals: managing differences of opinion

“…Results from the current study show that having inclusive discussions around estimating prognosis and fine-tuning care plans can facilitate team decision-making. Creating opportunities for inclusive discussions allows for an appreciation of patients’ and families’ perspectives around dignity and symptom management 25…”