Sex and gender in palliative and end-of-life care: A service evaluation and qualitative analysis

Sex and gender are determinants of health and well-being. A person's sex is assigned at birth while gender identity is culturally determined and influences many aspects of life. Little evidence exists regarding differences in the use or experience of palliative care services between people of different sex and genders in the United Kingdom. To explore differences by sex and gender in (1) time from service referral to death, (2) reason for referral, (3) preference for place of death and (4) place of death in UK hospice and community services. In addition, palliative care staff's views of the impact of sex and gender on end-of-life experiences are explored. Sequential multiple methods design including a service evaluation of routinely collected data from hospices and community nursing services across the United Kingdom (January 2019 to December 2022) and a qualitative study. Quantitative data were extracted from a central database, which collated all data from SystmOne, PatientConnect and EMIS and were summarised using descriptive statistics. Focus groups were conducted with palliative care staff from Wales and Scotland and analysed using reflexive thematic analysis. Hospice inpatient services, community nursing teams. Ninety thousand six hundred and fourteen data points were analysed. High levels of missing data were noted around gender identity, alongside other demographic characteristics. A roughly even split between male (50%) and female (47%) patients was observed. Gender identity was not reported for 25% of the sample. The majority of patients were White British (82%). No differences were noted in other variables explored. In the qualitative study, differences by gender were percieved by palliative care staff in relation to patient and carer experiences. Quantitative data suggest limited differences in access to care or service use while qualitative data suggest differences in experiences of palliative care between sexes and genders. To enable explorations of intersectionality, sensitive data collection is needed to support future research and service delivery.