Perspectives on End-of-Life Treatment among Patients with COPD: A Multicenter, Cross-sectional Study in Japan

Abstract

Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality. Since patients with severe COPD may experience exacerbations and eventually face mortality, advanced care planning (ACP) has been increasingly emphasized in the recent COPD guidelines. We conducted a multicenter, cross-sectional study to survey the current perspectives of Japanese COPD patients toward ACP. “High-risk” COPD patients and their attending physicians were consecutively recruited. The patients’ family configurations, understanding of COPD pathophysiology, current end-of-life care communication with physicians and family members, and preferences for invasive life-sustaining treatments including mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) were evaluated using a custom-made, structured, self-administered questionnaire. Attending physicians were also interviewed, and we evaluated the patient–physician agreement. Among the 224 eligible “high-risk” patients, 162 participated. Half of the physicians (54.4%) thought they had communicated detailed information; however, only 19.4% of the COPD patients thought the physicians did so (κ score = 0.16). Less than 10% of patients wanted to receive invasive treatment (MV, 6.3% and CPR, 9.4%); interestingly, more than half marked their decision as “refer to the physician” (MV 42.5% and CPR 44.4%) or “refer to family” (MV, 13.8% and CPR, 14.4%). Patients with less knowledge of COPD were less likely to indicate that they had already made a decision. Although ACP is necessary to cope with severe COPD, Japanese “high-risk” COPD patients were unable to make a decision on their preferences for invasive treatments. Lack of disease knowledge and communication gaps between patients and physicians should be addressed as part of these patients’ care.

Keywords:

• Chronic obstructive pulmonary disease
• end-of-life care
• advanced care planning
• shared decision making
• patient–physician communication

Acknowledgements

All the authors wish to acknowledge and would like to thank all the medical staff involved in the management of the patients in clinical practice.

Disclosure statement

No potential conflict of interest was reported by the authors.

Author contributions

Fuseya contributed to the conception and design of the protocol, to the collection and analysis of the data, and to the writing of the manuscript. Muro contributed to the conception and design of the protocol, to the delineation of the hypotheses, to the collection, analysis and interpretation of the data, and to the writing the manuscript. S. Sato is responsible for the integrity of the data and contributed to the collection, analysis and interpretation of the data and to the writing the manuscript. A. Sato contributed to the data analysis and manuscript review. Tanimura contributed to the analysis and interpretation of the data and revision of the manuscript prior to submission. Hasegawa contributed to the data analysis and manuscript review. Uemasu contributed to the data analysis and manuscript review. Hamakawa contributed to the analysis and interpretation of the data and to the revision of the manuscript prior to submission. Takahashi contributed to the protocol design, to the analysis and interpretation of the data and to the editing of the manuscript. Nakayama contributed to the protocol design, to the analysis and interpretation of the data, and to the editing of the manuscript. Sakai contributed to the data collection and manuscript review. Fukui contributed to the data collection and manuscript review. Kita contributed to the data collection and manuscript review. Mio contributed to the data collection and manuscript review. Mishima contributed to the data analysis and supervised the study. Hirai contributed to the data analysis and supervised the study.