Preferences for Continence Care Experienced at End of Life: A Qualitative Study.

Abstract

Functional dependence at end of life often leaves individuals requiring help for personal care, including maintaining continence. Current continence guidelines offer little direction for end of life continence care, and little is known of the perspectives of people receiving palliative care. The aim of the study was to examine the continence care preferences of people receiving palliative care to understand what approaches to care and what goals of care are important to them. This is a qualitative descriptive exploratory study with data gathered in individual interviews using a semi-structured interview guide. Participants were receiving bladder and/or bowel care on either tertiary or hospice palliative care units. Fourteen Canadian patients (seven female, seven male), six from tertiary and eight from hospice palliative care units, were recruited. From the analysis, three themes were identified: loss of control, finding a way to manage, and caregivers can help and can hinder. Dignity was often lost as a result of having to receive continence care, with most participants following staff recommendations for management approaches as the easiest way. Patients did not recall being asked about their bladder and bowel preferences. As patients approached end of life they were willing to give up dignity if it was required to address symptoms causing them more distress, like pain. Health care professionals and family have an important role in social interactions around continence care. Health care professionals should incorporate patient preferences as best they can and explain the options when treating incontinence at end of life.