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Multicenter Study
. 2023 Dec;44(12):4349-4357.
doi: 10.1007/s10072-023-06905-7. Epub 2023 Jul 7.

Withdrawal of mechanical ventilation in amyotrophic lateral sclerosis patients: a multicenter Italian survey

Cristina Moglia #  1   2 , Francesca Palumbo #  3 , Simone Veronese #  4 ; M. N. D. Italian Study Group; Andrea Calvo #  3   5
Collaborators, Affiliations
Multicenter Study

Withdrawal of mechanical ventilation in amyotrophic lateral sclerosis patients: a multicenter Italian survey

Cristina Moglia et al. Neurol Sci. 2023 Dec.

Abstract

Background: Law 219/2017 was approved in Italy in December 2017, after a years-long debate on the autonomy of healthcare choices. This Law, for the first time in Italian legislation, guarantees the patient's right to request for withdrawal of life-sustaining treatments, including mechanical ventilation (MV).

Objective: To investigate the current status of MV withdrawal in amyotrophic lateral sclerosis (ALS) patients in Italy and to assess the impact of Law 219/2017 on this practice.

Methods: We conducted a Web-based survey, addressed to Italian neurologists with expertise in ALS care, and members of the Motor Neuron Disease Study Group of the Italian Society of Neurology.

Results: Out of 40 ALS Italian centers, 34 (85.0%) responded to the survey. Law 219/2017 was followed by an increasing trend in MV withdrawals, and a significant increase of neurologists involved in this procedure (p 0.004). However, variations across Italian ALS centers were observed, regarding the inconsistent involvement of community health services and palliative care (PC) services, and the intervention and composition of the multidisciplinary team.

Conclusions: Law 219/2017 has had a positive impact on the practice of MV withdrawal in ALS patients in Italy. The recent growing public attention on end-of-life care choices, along with the cultural and social changes in Italy, requires further regulatory frameworks that strengthen tools for self-determination, increased investment of resources in community and PC health services, and practical recommendations and guidelines for health workers involved.

Keywords: Advance care planning; Amyotrophic lateral sclerosis; End-of-life care; Law 219/2017; Mechanical ventilation withdrawal; Palliative care.

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Conflict of interest statement

Dr. Moglia, Dr. Palumbo, and Dr. Veronese report no conflicts of interest. Prof Calvo has received a research grant from Cytokinetics. The sponsor organization had no role in data collection and analysis and did not participate in writing and approving the manuscript. The information reported in the manuscript has never been reported elsewhere.

Figures

Fig. 1
Fig. 1
Picture showing the similarities (in blue, left) and variabilities (in red, right) in the management of a MV withdrawal request across Italian ALS centers. Abbreviations: MV, mechanical ventilation; MDT, multidisciplinary team; PC, palliative care
Fig. 2
Fig. 2
A Mechanical ventilation withdrawals performed before and after Law 219/2017. *In one case patient’s death occurred during the evaluation of the request. **In one case the patient recanted his wish to withdraw MV, in a second case the request for MV withdrawal was under evaluation at the time of the survey. B Neurologists’ involvement in a mechanical ventilation withdrawal before and after Law 219/2017. ***Statistically significant increase. C Advance care planning discussion before and after Law 219/2017. Abbreviations: MV, mechanical ventilation; ACP, advance care planning
See this image and copyright information in PMC

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