Hypothesis / aims of study
Functional dependence at the end of life often leaves individuals requiring help for personal care with bladder and bowel control. Urinary incontinence (UI), constipation and faecal incontinence (FI) are common at the end of life, occurring in up to 77% of older patients with cancer receiving palliative care . Evidence suggests that the burden of incontinence for nursing home residents and those dying in their own home may surpass that of pain. A study of 213 cancer patients receiving palliative care were asked to rate their sense of dignity on a seven-point scale; those who indicated that ‘loss of dignity was a significant concern’, were statistically significantly more likely to have difficulty with bowel functioning and heightened dependence . A review of textbooks and articles found a common sense approach to continence care at end of life, with little research-based evidence . Generic end of life guidance states that symptom management should focus on minimising the impact of symptoms to maintain quality of life in accordance with the patient’s values and preferences. While the importance of maintaining dignity at the end of life is clear, very little is known about patient preferences for continence care. This qualitative study sought to examine the continence care preferences of people receiving palliative care in order to understand what approaches to care and what care aims were important to them.
Study design, materials and methods
This qualitative, exploratory study used individual semi-structured interviews. Adult participants were recruited using purposive sampling. Participants were patients in receipt of palliative care either in tertiary palliative care or hospice palliative care units. Participants had sufficient cognitive function to take part, as determined by their treating physicians and nurses’ clinical judgement and by their ability to complete a 30 minute interview. All participants were in receipt of some care for either bladder or bowel continence or constipation. Informed consent for all interviews was gained. Interviews focused on continence care preferences of the participants and were conducted until saturation was reached. Interviews were recorded and transcribed verbatim. Following a conventional content analysis approach, two researchers coded the interviews independently, and then collaborated to develop the coding framework and identify categories and themes.
Seven men and seven women were interviewed (mean age, 73 years). Six participants were recruited from the tertiary palliative unit and eight were from the hospice palliative unit. Current bladder/bowel issues included: urinary incontinence (3), fecal incontinence (2), double incontinence (4), constipation (2), urinary retention (2), and urinary incontinence with constipation (1). Thirty-four codes were identified and subsequently collapsed into 7 categories and 3 themes. The three overarching themes were: “Losing control”, “Finding a way to manage”, and “Caregivers can help and can hinder”. Themes, categories and exemplar quotes are in Table 1.
Interpretation of results
Loss of dignity was commonly reported but, in contrast to previous research, it was not perceived as greatly important at end of life compared to other issues participants faced. They did not want to surrender dignity and would try to preserve it in challenging situations. However, their illness was seen as “a journey,” and dignity could be surrendered in order to address more important concerns such as managing pain and staying clean. Kindness and communication skills of healthcare providers as formal caregivers was important to preserving dignity and maintaining quality of life. Almost all participants had used pads, and although not ideal, many found them a suitable way to manage continence. Catheters were perceived to be an unacceptable option, but at times, this was seen as a convenient solution, which increased comfort. Participants had little recollection of alternative treatments being offered. They were rarely consulted about management preferences but when asked, felt their preferences were followed. Patients commonly trusted the healthcare professionals’ opinions or did not want to think about the problem, accepting what was offered as a solution as long as it worked. What might be considered less than optimal management by health care professionals (e.g. containment rather than toileting) was accepted and sometimes the choice of participants. To ensure best patient care, healthcare professionals need to ask patients about what is most important to them and prioritize this.