Prevalence of Ethical Issues in Patients with Advanced Cancer: Secondary Analysis of Pooled Data from the Development and Validation Cohorts of the PALCOM Scale for the Complexity of Palliative Care Needs

Abstract

Introduction: The life experience of patients with advanced cancer and limited life expectancy is unique and profoundly complex, often leading to moral discrepancies among the various individuals involved in decision making. There are no data in the literature on the prevalence of ethical issues in the end-of-life care of patients with advanced cancer.

Objectives: The primary objective of this study is to identify the overall and specific prevalence of ethical issues in the end-of-life care process for patients with advanced cancer.

Method: We performed a secondary analysis using pooled data from the prospective development and validation cohorts of the PALCOM scale, focusing on the complexity of palliative care needs. This was performed to determine the overall and specific prevalence of ethical issues, describe their evolution over a 6-month follow-up period, and analyze their association with the level of palliative care complexity.

Results: A total of 607 patients with advanced cancer and a life expectancy of 6 months or less were included. The consistency in clinical data and the frequencies of the PALCOM scale domains between the development and validation cohorts, conducted in various settings and times, confirmed the reliability of the pooled data sample. Systematic application of the PALCOM scale identified 126 patients (20.7%) who experienced at least one ethical issue. A total of 204 ethical issues (1.6 per patient) were recorded, related to the following: the proportionality of healthcare intervention (15.6%); information (13.0%); research (2.9%); the desire to hasten death (1.8%); and palliative sedation (0.15%). The monthly probability of presenting an ethical issue was significantly higher at the baseline visit (24.0%) compared to the rest of the 6-month follow-up period (14-17%) (p < 0.001). The prevalence of ethical issues was notably higher in patients with greater palliative care complexity as measured by the PALCOM scale: 4.5% in low complexity, 19.5% in medium complexity, and 30.8% in high complexity (p < 0.001).

Conclusions: The prevalence of ethical issues in patients with advanced cancer is high. Most of these issues are directly or indirectly related to the preservation of patient autonomy in the decision-making process. The presence of ethical issues is significantly associated with the greater complexity of palliative care needs. In this context, it is crucial for healthcare professionals to strengthen both communication skills and basic competencies to effectively identify, assess, and manage these ethical issues.

Keywords: advanced cancer; complexity of palliative care needs; early palliative care; ethic issues.

Figure 1

Flow diagram of pooled data from PALCOM cohorts: prevalence of ethical issues in advanced cancer patients.

Figure 2

Overall frequencies of ethical issues during follow-up in validation cohort (%). The prevalence of ethical issues at baseline was significantly higher than that observed in the subsequent follow-up months (p < 0.001).