A study by occupational therapists details dignity-preserving best practices for providing intimate hygiene assistance at the end of life.

The loss of privacy and independence can feel upsetting for palliative care recipients whose self-care abilities may decline as their disease progresses, according to Deidre Morgan, Ph.D., a 26-year OT veteran and senior lecturer at the College of Nursing and Health Sciences, Flinders University, Australia.

In interviews with 18 people receiving such care, it emerged that each individual requires opportunities to decide or at least influence how they receive intimate care such as showering or toileting. It’s incumbent upon the caregiver to help provide those opportunities, which requires effective two-way conversation, Morgan and colleagues concluded.

One 65-year-old professional woman with advanced cancer, for example, told the researchers that the loss of agency and intimate hygiene dependency was so difficult for her that it prevented her from asking for the help she actually wanted. Clinicians and caregivers must enable what the investigators call “moments of micro-competence” to help give the patient a voice and restore dignity, Morgan and co-authors explained.

“Asking a person which parts of their intimate hygiene they want help with, which parts they want to do themselves, and how they want this help to be provided can boost a person’s sense of agency and control over their care,” Morgan said.

Four themes emerged from the interviews, she and her colleagues said. These are: 

  • There’s a way of doing and a way of asking
  • Putting each other at ease
  • It’s just how it is
  • Regaining and retaining control

Clinicians can refer to additional details available in the study. “Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study” was published in the journal Palliative Medicine.