Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada.
J Pain Symptom Manage. 2019 Jun;57(6):1099-1105.e3. doi: 10.1016/j.jpainsymman.2019.02.020. Epub 2019 Feb 28.
Functional 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.
The 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.
This 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.
Fourteen 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.
As 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.
生命末期的功能依赖常常使个人需要他人帮助进行个人护理，包括保持大小便自理。目前的大小便自理指南几乎没有为生命末期的大小便自理护理提供指导，而且对于接受姑息治疗的人的观点也知之甚少。
本研究旨在探讨接受姑息治疗的人的大小便自理护理偏好，以了解对他们来说哪些护理方法和护理目标重要。
这是一项定性描述性探索性研究，使用半结构化访谈指南在个人访谈中收集数据。参与者正在接受三级或临终关怀姑息治疗单位的膀胱和/或肠道护理。
共招募了 14 名加拿大患者（7 名女性，7 名男性），其中 6 名来自三级姑息治疗单位，8 名来自临终关怀姑息治疗单位。通过分析，确定了三个主题：失去控制、寻找管理方法和护理人员可以提供帮助也可以造成阻碍。由于需要接受大小便自理护理，尊严常常丧失，大多数参与者遵循工作人员的管理方法建议，因为这是最简单的方法。患者不记得曾被问及过他们对膀胱和肠道的偏好。
随着患者接近生命末期，如果处理导致他们更痛苦的症状（如疼痛）需要放弃尊严，他们会愿意这样做。医疗保健专业人员和家属在围绕大小便自理护理的社交互动中扮演着重要角色。医疗保健专业人员应尽可能地将患者的偏好纳入考虑，并在治疗生命末期的尿失禁时解释各种选择。
