Suffering in Relation: Hidden Hospice Work

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Hospices are grounded in providing care and support to people reaching the end of life, as well as to their families and loved ones. We know that such care is pivotal in relieving physical symptoms, emotional pain, and distress. As such, those working in hospices are intimately involved, either in fleeting moments of crisis or through prolonged periods, in illness, pain, and suffering. Hospice workers are therefore routinely exposed to physical and emotional suffering, as well as death, in their everyday work. There is a lack of research that focuses on how hospice workers cope, the types of emotions they feel, and how they experience relationships with patients and families. My PhD research placed the experiences and accounts of those providing end-of-life care at the centre of its focus. The findings extend our understanding about who provides care. It explores day-to-day work in a hospice for the whole range of workers there, from doctors and nurses to care assistants, cleaners, housekeepers, cooks, and therapists. In the fellowship, I will offer a unique contribution by illuminating the experiences of non-medical staff. Their important accounts will sit alongside that of their medical counterparts. This sector of the workforce is currently overlooked, both within academia and public understanding. This research shifts understandings of who provides care, and the forms that this adopts. In this fellowship, I will share findings and further this research agenda. My findings offer insights to moments of care that engage with the different senses: the touch of a housekeeper's hand on a patient's arm as they mop the floors, the careful preparation of a sausage sandwich as a patient's requested 'final' meal, and the use of essential oils to ease a patient's physical and emotional pain. As relationships often alter and fade towards the end of life, hospice workers are nearby figures of support. In the findings that will be shared during the fellowship, I argue that hospice workers, in all their different roles, sometimes suffer with and alongside patients and their families. The research reveals the reciprocal and relational suffering that unfolds in hospice work, as well as the enjoyment the staff gain from their close relationships and bonds with those they meet. These findings are important for hospice staff, patients, healthcare organisations, as well as for all of us, as they tell us about the provision of care at the end of life, and the needs of those that care for us. My PhD findings advance understandings about how those who care for us at the margins of life need emotional support to continue to give support to patients and families. This comes at a time where healthcare systems are increasingly stretched and as death tolls have been thrust into our daily lives through the pandemic. The fellowship builds on the PhD research by sharing the everyday experiences of hospice workers, which were gathered through six months of observations and eighteen in-depth interviews. I will contribute original findings to academic audiences through journal articles and blogs. I will also conduct consultation work with hospice staff to further understand their work and support needs, and, in collaboration with Hospice UK (which has 210 member organisations), communicate this work and PhD findings to initiate national change in how hospice staff are supported in doing their work. Sharing their voices through a video and booklet, the fellowship will emphasise the hidden work of the overlooked non-medical workforce. The training and support needs of this group are particularly neglected, and I will begin to address how they are perceived as providers of care, ensuring recognition for this group. I will develop a research agenda drawing on emergent findings from the PhD to focus specifically on hidden groups of non-medical staff in different sectors to broaden the focus.