Family Members' Experience of Discussions on End-of-Life Care in Nursing Homes in Japan

Abstract

In nursing homes, discussions between family members and staff regarding the end of life for residents with cognitive impairment are crucial to the choice of treatment and care consistent with residents' wishes. However, family members experience burden in such discussions, and communication with staff remains inadequate. The purpose of this qualitative descriptive study was to elucidate the meaning of continuous end-of-life discussion for family members. Data were collected using semistructured individual interviews. Thirteen family members of residents from 3 nursing homes in Kyoto, Japan, participated in the study. Data were analyzed using thematic analysis, which focused on both explicit and implicit meanings. Four themes emerged regarding the experience of end-of-life discussion: “the end of life soaking in,” “hardship of making the decision to end my family member's life,” “wavering thoughts about decisions made and actions taken,” and “feeling a sense of participation about the care.” Family members had come to accept the deaths of residents through continuous discussion and experienced strong conflict in facing the death of their family members. Moreover, staff members should understand family members' beliefs and the burden they experience in facing residents' death.

Role of patients’ family members in end-of-life communication: an integrative review

“…Similar findings were observed in Eastern countries, where Asian family members typically preferred to be involved in making EOL decisions together with, or sometimes, on behalf of the elderly patients 25 71–74. In China and nations of proximity such as Korea, where Chinese culture poses significant impact, EOL decision-making tends to be a family-centred practice rather than an individual decision 73 75 76.…”

“… 73 75 76 Alternatively, Kato and Tamura 74 offered relational authority as another dynamic found within East Asian cultures, where family members will leave medical decisions to the clinicians. Kato and Tamura’s 74 study also stresses that family members felt a great responsibility to care for their parents and that failure to continue the care, such as admitting their parents to a nursing home, led to feelings of guilt and abandonment among the family members. This is because the ideology behind it, which is constructed from traditional Confucianist and Buddhist beliefs, largely focuses on collectivism and familial responsibility.…”

“…In China and nations of proximity such as Korea, where Chinese culture poses significant impact, EOL decision-making tends to be a family-centred practice rather than an individual decision 73 75 76. Alternatively, Kato and Tamura74 offered relational authority as another dynamic found within East Asian cultures, where family members will leave medical decisions to the clinicians. Kato and Tamura’s74 study also stresses that family members felt a great responsibility to care for their parents and that failure to continue the care, such as admitting their parents to a nursing home, led to feelings of guilt and abandonment among the family members.…”

“…Filial piety is a key value to maintain social stability and familial harmony. Based on this premise, parents become the recipients of their adult children’s care, and children of dying patients are highly trusted in making treatment plans and EOL decisions for their parents 71 73–75. In addition, in the East Asian context, immediate family members generally possess the power to decide whether to inform the patient of their current medical situations,25 creating a common phenomenon where the doctors would have consultations with the family caregivers prior to speaking with the patients.…”

Reflective based learning for nursing ethical competency during clinical practices

“…Based on our sample, participants reflect on the actions taken by other professionals. Among the inadequate ones, the students value the importance of professional-patient communication, and the importance in the most delicate situations for the patient, such as in the stages at the end of life, which is in line with the literature 34 as well as the importance of having developed communication skill, such as the author 35 points out in his article.…”