“We Want to Sign It, But We Can't Do It”

Abstract

This study aimed to clarify the experiences of family members of older adult residents regarding the signing of an advance directive in the context of a Chinese culture. Twenty family members of older residents in a long-term care facility participated in face-to-face interviews, and the researchers conducted a thematic analysis of observation field notes and interview transcripts. A content analysis of the interviews revealed 4 themes concerning the refusal to sign advance directives: resident decision, group decision, not entitled to decide, and random decision. Health providers may serve as mediators and pass on the residents' views regarding their end-oflife care to their families after holding discussions with residents and their families separately to ensure that an agreeable decision regarding the modes and objectives of EOL care is reached and that such a decision respects the right of the patient to choose.

Impediments to Signing Advance Directives in Nursing Home Residents

“…9 Attitudes in Taiwan regarding who should make EOLC decisions have recently been changing because of the influence of Western culture and shifts in the socioeconomic environment. [10][11][12] Although family members are still the primary EOLC decision makers, more than half of family members surveyed believed that it should be the patient making such decisions 10 and that patients should sign ADs. 12 Furthermore, although the willingness of NH residents to make their own EOLC decisions has been increasing, the proportion of NH residents who sign an AD remains low, indicating a substantial discrepancy between willingness and the actual signing of ADs.…”

“…[10][11][12] Although family members are still the primary EOLC decision makers, more than half of family members surveyed believed that it should be the patient making such decisions 10 and that patients should sign ADs. 12 Furthermore, although the willingness of NH residents to make their own EOLC decisions has been increasing, the proportion of NH residents who sign an AD remains low, indicating a substantial discrepancy between willingness and the actual signing of ADs. 4 A study showed that after receiving education related to ADs, the willingness of NH residents to sign an AD increased but the proportion of NH residents who actually signed an AD did not change.…”

“…Attitudes in Taiwan regarding who should make EOLC decisions have recently been changing because of the influence of Western culture and shifts in the socioeconomic environment 10-12 . Although family members are still the primary EOLC decision makers, more than half of family members surveyed believed that it should be the patient making such decisions 10 and that patients should sign ADs 12 .…”

Examining the Psychometric Properties of the Taiwanese Version of the Hospice Quality of Life Index

“…However, as Taiwanese patients with cancer generally use hospice care for a median of 13 days, obtaining qualitative data from patients who access hospice care late in their cancer trajectory may not always be feasible 4,5 . In addition, patients and their family caregivers may be hesitant to discuss death-related topics 6 …”

“…4,5 In addition, patients and their family caregivers may be hesitant to discuss death-related topics. 6 The utilization of palliative and hospice care in Taiwan remains relatively low despite the enactment of the Natural Death Act and Hospice Palliative Care Act. [7][8][9] Health care providers and family caregivers have encountered truthtelling, traditional social norms related to filial piety and hospice referral as common ethical dilemmas.…”