When the cause of death does not exist: time for the WHO to close the ICD classification gap for Medical Aid in Dying.

Medical aid in dying (MAID) is a highly controversial ethical issue in the global medical community. Unfortunately, the International Classification of Diseases (ICD) of the World Health Organization (WHO) lacks coding for MAID. Therefore, no robust data adequately monitors worldwide trends that include information on diseases and conditions underlying the patients' request for assisted dying ("MAID gap"). Countries with legalised MAID observe substantial increases in cases, and likely additional countries will allow MAID in the near future. Hence, we encourage the WHO to create specific ICD codes for MAID. According to internationally established practices, a revised classification would require separate MAID-codes for (1) assisted suicide and (2) voluntary active euthanasia including supplemental codings of diseases, clusters of symptoms and function-oriented categories. By addressing these concerns, the WHO could close the "MAID gap" with new codes providing urgently necessary insights to society, public health decision-makers and regulators on this comparatively new social and medical ethical phenomenon. Search strategy and selection criteria: Data for this Viewpoint were identified by searches of MEDLINE, PubMed, and references from relevant articles using the search terms "Medical Aid in Dying", "Assisted Dying", "Assisted suicide", "Voluntary active euthanasia", "End of life decisions" and "Cause of death statistics". Only articles and sources published in English between 1997 and 2023 were included."

ICD-Based Cause of Death Statistics Fail to Provide Reliable Data for Medical Aid in Dying.

Objectives: To evaluate the most recent developments of medical aid in dying (MAID) in Switzerland and to test the reliability of reporting this phenomenon in cause of death statistics. Methods: By reviewing the MAID cases between 2018 and 2020, we compared the diseases and conditions underlying MAID reported by the ICD-based statistics provided by the Swiss Federal Statistical Office (FSO, n = 3,623) and those provided by the largest right-to-die organization EXIT (n = 2,680). Results: EXIT reported the motivations underlying the desire for death in a mixture of disease-specific and symptom-oriented categories; the latter including, for example, multimorbidity (26% of cases), and chronic pain (8%). Symptom-oriented categories were not included in the ICD-based FSO statistics. This led to the fact that the distribution of the diseases/conditions underlying MAID differed in 30%-40% of cases between both statistics. Conclusion: In order to reliably follow developments and trends in MAID, the diseases/conditions underlying the wish to die must be accurately recorded. Current methods of data collection using the ICD classification do not capture this information thoroughly ("MAID gap"). Newly created ICD codes for MAID must include both disease-specific and symptom-oriented categories.