Background Certain patient groups can struggle with equity of access to inpatient hospice care. This can include those with significant mental illness (Edwards, Ansley, Coffey, et al. Palliat Med. 2021; 35(10): 1747–1760; Sheridan. The Lancet. 2019; 4 (11) 545 –546).
We describe the case of a gentleman with a diagnosis of paranoid schizophrenia and likely autistic spectrum disorder who developed advanced colorectal cancer. He opted against treatment and was assessed as having capacity for this decision. With progression to subacute bowel obstruction, supported living became untenable. The major issue was declining personal care, on a background of longstanding self-neglect, compounded by worsening gastrointestinal symptoms. Upon reaching ‘crisis point’ hospice admission was offered.
Methods We were anxious we would fail to meet this gentleman’s needs as reluctance for all care persisted. Assessing mental capacity for decision making was complex, we are used to considering this in cognitive impairment, rather than in the context of mental illness and autism. Shared working with the Mental Health Team (Edwards, et al., 2021; Valente, Saunders. Am J Hospice Palliat Med. 2010; 27: 24- 30), joint assessments of mental capacity for specific decisions and interdisciplinary meetings ensured we were using correct legislation and least restrictive approaches (Regan, Sheehy. Nurs Standard. 2016; 31(14): 54–63). Involving his brother as an advocate was crucial, this also facilitated a visit after limited contact.
Results Breakthroughs occurred at unpredictable intervals with the respectful persistence of staff, building trust to accept basic care and medications (Pinto, Pereira, Chaves. Nurs Care Open Access Journal. 2017; 3(6): 331–333). The gentleman eventually commented that this is “the best place he’s ever been”. Care was not always typical, with reluctance around some medications and administration routes, but it was individualised and improved symptom control.
Conclusions Hospices need training, integrated working with mental health services and an innovative approach to meet the needs of patients with significant mental illness. The key here was relationship building and there was a huge sense of pride for the team when gains were made (Pinto, et al., 2017). This case also highlights the value of inpatient hospice beds in supporting complex care.