Balancing hope at the end of life organisational conditions for spiritual care in palliative homecare in Sweden

Abstract

The aim of this article is to examine how norms and values related to culture, religion, and spirituality were experienced and expressed by healthcare professionals caring for patients at the end of life in Advanced Care at Home (ACH) in Sweden, with a focus on how organisational aspects enabled or hindered spiritual care. Founded on participant observation with physicians and exploratory short-term fieldwork conducted between June and December 2019, findings show that physicians experienced communication problems relating to both religion and culture, yet were skilled in balancing hope and existential needs, medically and practically. However, all healthcare encompassed a secular bias complicating abilities to “read” religious and spiritual needs, reflecting a general lack of religious literacy among healthcare providers. ACH physicians and the palliative care team were facilitated by several organisational and structural conditions necessary for person-centred and spiritual care, including the non-hierarchical and interprofessional composition of care teams, continuity of care, space for physicians' reflection, and engagement in dialogue with patients and their relatives. Furthermore, the 6S palliative care ideology was promoted within the team, as was a creative outlook in supporting patients and their relatives' hope at the end of life. Nevertheless, interest varied. Some physicians were more skilled in dialogue, creativity and including the patient in medical decisions. Others were less focused on the person and maintained a strong emphasis on medicine, practicalities, and biomedical testing. Further, structural and organisational hindrances to person-centred and spiritual care were illuminated, including a lack of routines surrounding protecting the patient's needs in transitions from hospital to ACH. Even though the organisation of care in ACH provided conditions for person-centredness, the lack of religious literacy caused further hindrances to spiritual care. We conclude that, without religious literacy, and the ability to holistically meet patients' spiritual needs, care cannot be truly person-centred.