Experiences with making difficult decisions of the family caregivers of patients on prolonged mechanical ventilation: a qualitative study

Abstract

Background: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.Methods: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semi-structured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?Results: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.Conclusions: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.

Development and testing of the shared decision-making attitudes scale among nurses in Taiwan: a cross-sectional scale development study

“…We applied the KMO test to assess the net correlation coefficient between variables (a KMO value close to 1 indicates a low net correlation between the variables and indicates that factor analysis can be used for the extraction of common factors), and we employed Bartlett’s test of sphericity to examine whether the correlation coefficients in the correlation matrix were significantly higher than 0. 40 The KMO value of the scale was 0.94, meeting the standard of >0.90 (signifying a marvellous result). The result of Bartlett’s test of sphericity was significant (p<0.001), indicating that the pretest data for this scale were suitable for factor analysis.…”

“…Particularly, in traditional Asian families, such as those in Taiwan, patients are more likely to play a silent role in the decision-making process because of traditional cultural pressure. 40 Thus, nurses should be patient and listen to the expectations of patients during the SDM process.…”

Aspectos éticos da aplicação de ventilação mecânica em cuidados paliativos nas Unidades de Terapia Intensiva: uma revisão narrativa

“…Em algumas sociedades, a decisão é frequentemente tomada pelo chefe da família ou pelos anciãos, em vez de ser centrada no paciente. Este aspecto cultural pode entrar em conflito com abordagens médicas mais centradas no paciente, que priorizam a autonomia individual (Lee, Y. W. et al, 2020).…”

A Concept Analysis of Trust Within the Surrogate Decision Maker to Health Care Professional Relationship in the Adult ICU Setting

“…Up to 95% of patients in an adult ICU no longer have decision-making capacity, 1 and another person must be appointed as the patient's surrogate decision maker (SDM). 2 Many SDMs experience significant stress and anxiety in these situations, 3 confounding efforts to build and maintain trust between the SDMs and the health care team.…”

“…High-quality care in the ICU, care that results in the best outcomes for the patient, requires collaboration among a diverse group of health care professionals (HCPs), the patient, and, in many cases, the patient's family. Up to 95% of patients in an adult ICU no longer have decision-making capacity,1 and another person must be appointed as the patient's surrogate decision maker (SDM) 2. Many SDMs experience significant stress and anxiety in these situations,3 confounding efforts to build and maintain trust between the SDMs and the health care team.…”