Nurse Perspectives on Urinary Incontinence in the Home Hospice Setting - Beyond the Abstract

Home hospice (HH) has become an increasingly attractive option for patients nearing the end-of-life (EOL). Patients cite a desire to be at home in a familiar environment; ability to have a “normal” life; ability to spend time with family members, friends, and pets; and wish to avoid hospitals and nursing homes as reasons for pursuing HH.1 However, patient and family caregiver expectations of EOL care in the HH setting may not always be congruent with reality, as many lay-people may not have experience caring for patients who become increasingly dependent on caregivers as they approach the EOL.

The development of urinary incontinence (UI) near the EOL is well documented, affecting up to 72% of patients enrolled in hospice.2 However, very little is known about UI in the HH setting, and literature describing patient and caregiver preferences for UI management at the EOL is sparse. Therefore, we conducted a qualitative descriptive study on UI management in the HH setting by interviewing 32 HH nurses employed through a HH agency in a major metropolitan area.

Nurses were interviewed by the study investigator, who later transcribed the interviews and analyzed them with the assistance of a second study investigator. Nurses shared their strategies for the identification and management of UI in HH patients. Additionally, nurses related that UI could result in poorer outcomes (i.e. skin breakdown, urinary tract infection, falls, and others) for HH patients if not managed properly. Nurses stated that patients with intact cognitive function were generally more bothered by their UI, describing patient discomfort, loss of dignity, and increased need for caregiver assistance as reasons for increased bother. Additionally, UI management was approached in a patient-centric fashion in which nurses encouraged patients to self-manage UI whenever possible and took into account patient preferences when discussing management options with the patient and caregivers. Although treatment decisions were made in patients’ best interests, no formal guidelines for UI management in the HH setting exist. Therefore, management strategies varied widely among nurses, highlighting the need to develop evidence-based management recommendations.

This study demonstrates that UI is a common condition facing HH patients at the EOL, and can present challenges to patients and caregivers. Additional studies are needed to fully characterize the prevalence, clinical course, and outcomes of patients with UI in the HH settings. UI in the HH setting is an understudied condition that merits additional investigation with the goal of developing evidence-based guidelines for management.

Written by: Michelina D. Stoddard, PhD, Twitter: @michelina8687, and Bilal Chughtai, MD, Twitter: @ChughtaiMD, Department of Urology, Weill Cornell Medicine/New York Presbyterian, New York, New York


  1. Tang, Siew Tzuh. "When death is imminent: where terminally ill patients with cancer prefer to die and why." Cancer nursing 26, no. 3 (2003): 245-251.
  2. McCARTHY, M. A. R. K., J. U. L. I. A. ADDINGTON‐HALL, and D. A. N. Altmann. "The experience of dying with dementia: a retrospective study." International journal of geriatric psychiatry 12, no. 3 (1997): 404-409.
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