Identification and Prognostication of End-of-Life State Using a Japanese Guideline-Based Diagnostic Method: A Diagnostic Accuracy Study

Abstract

Purpose

Prognostic uncertainty can be a barrier to providing palliative care. Accurate prognostic estimation for patients at the end of life is challenging. This study aimed to evaluate the accuracy of end-of-life diagnosis using our unique diagnostic method.

Patients and Methods

A retrospective longitudinal observational study was conducted through collaboration among three medical facilities in a rural super-aged community in Japan. In 2007, we established a unique end-of-life diagnostic process comprising (1) physicians’ judgement, (2) disclosure to patients, and (3) discussion at an end-of-life case conference (EOL-CC), based on Japanese end-of-life-related guidelines. Research subjects were consecutive patients discussed in EOL-CC between January 1, 2010, and September 30, 2017. The primary outcome was mortality within 6 months after the initial EOL-CC decision. Sensitivity, specificity, and diagnostic odds ratio were calculated using EOL-CC diagnosis (end-of-life or non-end-of-life) as an index test and overall survival (<6 months or ≥6 months) as a reference standard.

Results

In total, 315 patients were eligible for survival analysis (median age 89, range 54–107). The study population was limited to patients with severe conditions such as advanced cancer, organ failures, advanced dementia with severe deterioration in functioning. EOL-diagnosis by our methods was associated with much lower survival rate at 6 months after EOL-CC than non-EOL-diagnosis (6.9% vs 43.5%; P < 0.001). Of the patients, 297 were eligible for diagnostic accuracy analysis (median age 89, range 54–107). The EOL-diagnosis showed high sensitivity (0.95; 95% confidence interval [CI] 0.92–0.97) but low specificity (0.35; 95% CI 0.20–0.53) against the outcomes. It also showed a high diagnostic odds ratio (10.32; 95% CI 4.08–26.13).

Conclusion

The diagnostic process using the Japanese end-of-life guidelines had tolerable accuracy in identification and prognostication of end of life.

Video Abstract

Point your SmartPhone at the code above. If you have a QR code reader the video abstract will appear. Or use:

https://youtu.be/b5OIS2-K_YI

Keywords:

• diagnostic accuracy
• end-of-life
• prognostication
• overall survival
• diagnostic odds ratio

Abbreviations

ACP, advance care planning; ADEPT, Advanced Dementia Prognostic Tool; CCI, Charlson Comorbidity Index; DOR, diagnostic odds ratio; end of life, EOL; EOL-CC, end-of-life case conference; JMHLW, Japanese Ministry of Health, Labour and Welfare; NLR, negative likelihood ratio; NPV, negative predictive value; OS, overall survival; PLR, positive likelihood ratio; PPS, Palliative Performance Scale; PPV, positive predictive value.

Data Sharing Statement

The datasets used and/or analyzed during this study and the study protocol are available from the corresponding author on reasonable request. The data are not publicly available.

Ethics Approval and Informed Consent

This study was approved by the Institutional Review Board of Nanto Municipal Hospital (No. Shiminbyouin-96). In accordance with the guidelines of the Japanese Ministry of Education, Culture, Sports, Science and Technology, the requirement for obtaining participant informed consent was waived. The data accessed complied with the data protection and privacy regulations made by the guidelines, the study protocol, and the affiliation facilities.

Acknowledgments

We thank Diane Williams, PhD, and Audrey Holmes, MA, from Edanz (https://jp.edanz.com/ac) for editing drafts of this manuscript.

Author Contributions

MA drafted the manuscript. MA, HA, and EM made substantial contributions to execution, acquisition of data, analysis and interpretation. SM and YS contributed to the conception and study design. All authors substantially revised or critically reviewed the article, agreed to submit to the journal, and approved all versions of this article. All authors also agreed to take responsibility and be accountable for the contents.

Disclosure

The authors report no conflicts of interest in this work.

Additional information

Funding

There is no funding to report.