‘Maybe I’ve got lost in the system somewhere’ patient experiences of palliative care: a case study of Frances

Palliative care is a complex process of managing holistic care and support needs at a crucial point in a patient’s life. Statistics show many people are not accessing appropriate care when most in need. This case study of one terminally ill cancer patient, Frances, enables an in-depth exploration of the experience of palliative care. This adds a unique perspective to the current research on end-of-life care. Using this novel approach, we aim to increase understanding of palliative care, of ‘being in the system’, through a patient’s lifeworld. Through this lens of Frances, we can learn about the struggles of navigating care, families, friendships and societies, highlighting valuable lessons for those involved in palliative care. Key findings are that the humanistic and emotional support needs of a patient approaching end-of-life were not perceived to be addressed, causing psychological and physical impact. The lack of understanding and awareness of a patient’s emotional experiences at end-of-life impacted on provision of appropriate care and support. Individual perceptions and knowledge of palliative care options also created barriers in applying and accepting non-medical support when needed. This has implications for developing approaches to improve access and quality of care.