• J Pain Symptom Manage · Jun 2019

    Preferences for continence care experienced at end of life: a qualitative study.

    • Nicholas Smith, Kathleen Hunter, Saima Rajabali, Robin Fainsinger, and Adrian Wagg.
    • Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada. Electronic address: nismith@ualberta.ca.
    • J Pain Symptom Manage. 2019 Jun 1; 57 (6): 1099-1105.e3.

    ContextFunctional 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.ObjectivesThe 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.MethodsThis 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.ResultsFourteen 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.ConclusionsAs 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.Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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