ABSTRACT
Introduction: People living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences. Objective: To describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families. Methods: Focus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis. Results: Fifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours). Discussion: Aged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.
ABSTRACT
BACKGROUND: Chronic obstructive pulmonary disease and lung cancer are both life-limiting diseases that confer burden in the form of symptoms and affect functioning and quality of life. Comparing burden between these diseases is of interest to determine whether people with chronic obstructive pulmonary disease require improved access to Specialist Palliative Care. Access should be based on needs rather than diagnosis or prognosis but is limited for people with chronic obstructive pulmonary disease compared to lung cancer. AIM: The aim of this study was to synthesise research comparing burden from chronic obstructive pulmonary disease and lung cancer to estimate relative need for Specialist Palliative Care. DESIGN: A systematic review was conducted of observational quantitative studies published in English peer-reviewed journals comparing burden from chronic obstructive pulmonary disease and lung cancer (PROSPERO CRD42018108819). No limits were placed on disease stage. Meta-analyses were performed where studies used the same measure; otherwise, synthesis used a narrative approach. Risk of bias was assessed using the Agency for Healthcare Research and Quality tool. DATA SOURCES: Electronic databases were searched in September 2019. RESULTS: Of 790 articles returned, 13 were included, reporting 11 studies. Risk of bias was generally moderate. Except for pain, burden tended to be at least as substantial from chronic obstructive pulmonary disease as from lung cancer, with breathlessness and impacts on functioning being significantly worse. Longitudinal studies suggest that people with chronic obstructive pulmonary disease live with burden for longer. CONCLUSION: Efforts should be made to ensure that access to Specialist Palliative Care is commensurate with chronic obstructive pulmonary disease's substantial and long-lasting burden. Future research should clarify whether managing burden in chronic obstructive pulmonary disease and lung cancer requires different approaches.
