End-of-life Respect and Care
In a groundbreaking study published in the prestigious journal Palliative Medicine, researchers from Flinders University, Peter MacCallum Cancer Centre, Monash University, and SA Government agencies have underscored the profound impact health professionals can have on a person's dignity, particularly when assisting with intimate tasks like showering and going to the toilet.
The study, with the DOI 10.1177/02692163211017388, aims to raise awareness of how to provide better care for people at the end of life. Co-author Celia Marston emphasises the importance of understanding what a person wants their care to look like, or not look like, and creating opportunities for them to voice their preferences.
The research, which involved interviewing 18 people receiving palliative care about how they feel about losing independence with self-care, specifically their intimate hygiene, found that effective two-way communication and providing opportunities for the person to influence how they receive care is crucial.
Dr Deidre Morgan, the lead researcher and an occupational therapist with 26 years of clinical experience from Flinders University, explains that 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.
A 65-year-old professional woman with advanced cancer, who participated in the study, found it confronting to ask for help with her intimate hygiene due to a loss of agency. However, when given the opportunity to express her preferences, she felt more comfortable and in control.
The study serves as a vital reference for health professionals to raise awareness about their responsibilities to enable agency and even support partial independence. It underscores the importance of hearing what a person wants their care to look like, or not look like, and providing opportunities for them to voice their help they want.
The findings of this study are particularly relevant in today's healthcare landscape, where an ageing population and increasing prevalence of chronic illnesses have made end-of-life care a significant concern. By focusing on effective communication and empowering patients, healthcare professionals can make a profound difference in the quality of life for those at the end of their lives.
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