Nurses, residents, and their family's perspectives on nursing home end-of-life care

Background: The demand for residential care services is growing as the older population increases. The Elderly Commission suggests that quality end-of-life care can fulfil older patient's choices to live and age in a familiar and attached environment. Aims: An end-of-life care survey was conducted to investigate the perspectives of nurses, residents, and their family on nursing home end-of-life care. Methods: From June to August 2018, a survey using self-rating and open-ended questions was conducted for 35 nurses in a nursing home to assess their perception, attitude, experience, and knowledge on end-of-life care. In addition, individual interviews were conducted for five pairs of mentally sound residents and their family members on their concerns, preferences, and readiness for end-of-life care. Furthermore, the family members were interviewed for their awareness of the corresponding resident's preference of end-of-life care. Results: Five responses emerged from the nurses' experience of end-of-life dialogue with residents: (1) supportive: recognising and encouraging talking, (2) referring: directing the attention to another roles and disciplines, (3) judging and doubts: focusing on the reliability of the resident's words, (4) weighing achievability: recognising the limitations of their roles and avoiding over-promising, and (5) ending the conversation comfortably: using mottos and wishes to end the conversation. In the nurses' experience of caring a dying resident, they had to handle the family's and their own emotional crisis, possible ethical dilemma, and their perceived unpreparedness of death. Although none of the five residents heard of advance care planning, two of them considered their roles significant in advance care planning. However, they would not initiate discussion of end-of-life care and preferred their family members to initiate the talk. The residents were able to express their choices on life-sustaining treatment with photos and explanations provided. Their concerns on end-of-life care were pain, shortness of breath, loss of self care ability, and unattended care. Similarly, none of the five family members heard of advance care planning, but most were willing to participate. Most family members would not raise end-of-life care topics. Compared to residents, family members were more accepting towards life-sustaining treatments. Discussion: Insufficient information on advance care planning is provided to nursing home residents and their f