Older people with severe frailty talking about their palliative care needs: An interview and survey study during the covid-19 pandemic

ABSTRACT

Background: Older people with severe frailty (OPWF) are an unrepresented group in receiving palliative care (PC). Aim: A modified e-Delphi study nested in a wider mixed method study aimed to understand the most important PC needs for community-residing OPWF. Methods: The views of OPWF were collected by video-recorded interviews (N=10) and open questions in a facilitated survey (N=10), undertaken October-November 2020. OPWF's ages ranged from 70-99, 11 men, 9 women, living in owned, rented or sheltered accommodation, with Clinical Frailty Scores of 6 (N=8), 7 (N=9) and 8 (N=3). 9 of these participants have now died. Data was analysed using the 5 domains of PC need physical, psychological, spiritual, practical and social. Results: Meeting care needs was challenging across all domains. Acute physical needs were responded to, yet important longer-term needs, e.g. mental well-being, rehabilitation, and managing long-term conditions were harder to address. The pandemic caused or worsened distress and anger about being housebound, loss of social contact, increased loneliness and feeling ignored. Access to health and social care was a struggle for OPWF, where previously received services were withdrawn and lack of resources and exposure to telehealth put a high reliance on families to facilitate virtual consultations. OPWF relied on unpaid carers to coordinate and deliver care, which intensified when health deteriorated. Carers vividly detailed the strain and unsustainability of this provision. Conclusions: Post-Covid learning must take account of the impact on this less-often heard PC population. Prolonged loneliness and reduced activity will have significant consequences for physical and mental health and wellbeing. Unpaid carers are vital to the provision of personalised care to OPWF, they need to be listened to and resourced in their caring work, and to have their own needs assessed and addressed. Funder HEE/NIHR UK.