TY - JOUR
T1 - Caregiver experience with decision-making difficulties in end-of-life care for patients with cardiovascular diseases
AU - Shinada, Keitaro
AU - Kohno, Takashi
AU - Fukuda, Keiichi
AU - Higashitani, Michiaki
AU - Kawamatsu, Naoto
AU - Kitai, Takeshi
AU - Shibata, Tatsuhiro
AU - Takei, Makoto
AU - Nochioka, Kotaro
AU - Nakazawa, Gaku
AU - Shiomi, Hiroki
AU - Miyashita, Mitsunori
AU - Mizuno, Atsushi
N1 - Funding Information:
This research is supported by the “Practical Research Project for Lifestyle-related Diseases including Cardiovascular Diseases and Diabetes Mellitus” from the Japan Agency for Medical Research and Development, AMED (18ek0210072h0003), and Grant-in-Aid for Scientific Research (JPSS KAKENHI, 17K09526, 20K08408).
Publisher Copyright:
© 2021
PY - 2022/4
Y1 - 2022/4
N2 - Background: The decisional burden on caregivers in the end-of-life (EOL) care for patients with cardiovascular diseases (CVD) is unknown. We aimed to evaluate the frequency and circumstances of caregiver difficulties in decision-making during EOL care for CVD patients, its determinants, and associations with psychological distress in the bereaved caregivers. Methods: We conducted a cross-sectional survey using a questionnaire for bereaved caregivers of CVD patients who had died in 10 tertiary care centers. We assessed their overall and situation-specific decision-making difficulties during EOL care. The questionnaire also covered the attitudes of patients, caregivers, and attending physicians during EOL care and the respondents’ depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire). Results: We enrolled 266 bereaved caregivers [median age, 65 (57-72) years; 38.4% male] of CVD patients. Overall, 28.9% of them experienced difficulties in decision-making. The most difficult decision-making situations involved informing the patient of the prognosis (18.2%), life-prolonging treatment (17.9%), and discontinuation of hydration and artificial nutrition (15.6%). Difficulties were associated with patient and/or caregiver factors (poor understanding of disease status and the patient's wishes, caregiver's emotional inability), physician factors (poor understanding of the patient's and/or caregiver's values, inadequate support for decision-making), and both (insufficient communication, conflict of opinions and wishes). Decision-making difficulties were associated with subsequent depression (20.5% vs. 10.3%, p=0.029) and complicated grief (27.0% vs. 9.0%, p<0.001) among bereaved caregivers. Conclusions: Approximately 30% of bereaved caregivers experienced decisional burdens during EOL care of CVD patients. The caregiver's decisional burdens were associated with subsequent psychological distress.
AB - Background: The decisional burden on caregivers in the end-of-life (EOL) care for patients with cardiovascular diseases (CVD) is unknown. We aimed to evaluate the frequency and circumstances of caregiver difficulties in decision-making during EOL care for CVD patients, its determinants, and associations with psychological distress in the bereaved caregivers. Methods: We conducted a cross-sectional survey using a questionnaire for bereaved caregivers of CVD patients who had died in 10 tertiary care centers. We assessed their overall and situation-specific decision-making difficulties during EOL care. The questionnaire also covered the attitudes of patients, caregivers, and attending physicians during EOL care and the respondents’ depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire). Results: We enrolled 266 bereaved caregivers [median age, 65 (57-72) years; 38.4% male] of CVD patients. Overall, 28.9% of them experienced difficulties in decision-making. The most difficult decision-making situations involved informing the patient of the prognosis (18.2%), life-prolonging treatment (17.9%), and discontinuation of hydration and artificial nutrition (15.6%). Difficulties were associated with patient and/or caregiver factors (poor understanding of disease status and the patient's wishes, caregiver's emotional inability), physician factors (poor understanding of the patient's and/or caregiver's values, inadequate support for decision-making), and both (insufficient communication, conflict of opinions and wishes). Decision-making difficulties were associated with subsequent depression (20.5% vs. 10.3%, p=0.029) and complicated grief (27.0% vs. 9.0%, p<0.001) among bereaved caregivers. Conclusions: Approximately 30% of bereaved caregivers experienced decisional burdens during EOL care of CVD patients. The caregiver's decisional burdens were associated with subsequent psychological distress.
KW - Cardiovascular diseases
KW - Caregiver
KW - Decision-making
KW - End-of-life
KW - Palliative care
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U2 - 10.1016/j.jjcc.2021.11.001
DO - 10.1016/j.jjcc.2021.11.001
M3 - Article
C2 - 34815135
AN - SCOPUS:85119478399
SN - 0914-5087
VL - 79
SP - 537
EP - 544
JO - Journal of Cardiology
JF - Journal of Cardiology
IS - 4
ER -
