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

Uwe Güth1,2, Christoph Junker3, Marion Schafroth4

  • 1Department of Breast Surgery, Brust-Zentrum Zürich, Zurich, Switzerland.

International Journal of Public Health
|August 28, 2023
PubMed

Insights

Medical Aid in Dying (MAID) reporting in Switzerland shows significant discrepancies between official statistics and right-to-die organizations. Current ICD codes fail to capture crucial symptom-oriented reasons for MAID, creating a data gap.

Area of Science:

  • Medical Ethics
  • Public Health Statistics
  • Gerontology

Background:

  • Medical Aid in Dying (MAID) is a growing phenomenon in Switzerland.
  • Accurate data collection on the underlying causes of MAID is essential for understanding trends.
  • Existing cause of death statistics may not fully capture the complexities of MAID motivations.

Purpose of the Study:

  • To evaluate recent developments in MAID in Switzerland.
  • To assess the reliability of MAID reporting in official cause of death statistics.
  • To identify discrepancies between statistical data and data from a leading right-to-die organization.

Main Methods:

  • Comparative analysis of MAID cases between 2018-2020.
  • Review of data from the Swiss Federal Statistical Office (FSO) using ICD-based statistics.
  • Comparison with data from the right-to-die organization EXIT.

Main Results:

  • EXIT reported motivations including symptom-oriented categories like multimorbidity (26%) and chronic pain (8%), which are absent in FSO statistics.
  • Significant differences (30-40%) in the distribution of underlying diseases/conditions were observed between the two data sources.
  • The ICD classification's limitations create a "MAID gap" in capturing comprehensive reasons for seeking MAID.

Conclusions:

  • Accurate recording of both disease-specific and symptom-oriented reasons is crucial for reliable MAID trend analysis.
  • Current ICD codes inadequately capture the full spectrum of conditions leading to MAID.
  • Development of new ICD codes for MAID is recommended to include diverse motivations.

Keywords:
ICD classificationcause-of-death statisticsend of life decisionsmedical aid in dyingphysician assisted suicide

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