Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)

Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)

Moore-Hepburn C

Archives of Disease in Childhood

2018

medical care; adult; Canada; Canadian; child; complication; conference abstract; conversation; death; disability; female; human; joint; law; major clinical study; male; morbidity; palliative therapy; pediatrician; public figure; public health; rare disease; young adult

Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foreseeable'. Minor patients (both mature and 'never competent' minors) are currently excluded from the legislation. An independent review of the issue of minor patients and MAID was requested by Parliament. As health professionals, politicians and the public grappled with this issue, never before formally contemplated in Canada, the Canadian Paediatric Surveillance Program (CPSP) sough to provide data on exploratory conversations and explicit requests for MAID from/for minor patients to inform the independent review. Methods The CPSP is a joint program of the Public Health Agency of Canada and the Canadian Paediatric Society. The program conducts national surveillance into diseases that are high in disability, morbidity and economic costs to society, despite their low frequency. The CPSP surveys over 2500 paediatricians and paediatric subspecialists each month to monitor rare diseases, conditions and complications in Canadian children. A one-time survey was sent to all CPSP participants in May 2016. The survey tool can be accessed at www.cpsp.cps.ca/surveillance. Results The survey response rate was 40%. Over one-third of participants reported they provide end-of-life or palliative care (370; 35%). Exploratory discussions with minor patients about MAID were reported by 35 participants, representing 60 patients, the majority of whom were 14-18 years of age. Nine (9) partici-pants recalled an explicit request for MAID, representing 17 minors. Exploratory discussions with patients about MAID, on behalf of minor patients, were reported by 118 participants, representing 419 minor patients, the majority of whom were under 1 year of age. Forty-five (45) participants recalled an explicit request for MAID, representing 91 parents, the majority of whom had children under 1 year. Conclusion CPSP participants from across Canada reported exploratory conversations about and explicit requests for MAID from both minors and parents. Discussion with and explicit requests from parents outnumber those by minors by more than five to one. This study represents an important and innovative use of a paediatric surveillance system to inform a national conversation on a complex emerging ethical issue.

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June 2018 List