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Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives

Published online by Cambridge University Press:  19 March 2019

Brigette M. Hales ,
Sally Bean ,
Elie Isenberg-Grzeda ,
Bill Ford  and
Debbie Selby
Brigette M. Hales*
Affiliation:
Department of Quality & Patient Safety, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
Sally Bean
Affiliation:
Ethics Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada
Elie Isenberg-Grzeda
Affiliation:
Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada Department of Psychiatry, University of Toronto, Toronto, ON, Canada
Bill Ford
Affiliation:
Department of Spiritual & Religious Care, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
Debbie Selby
Affiliation:
Department of Family & Community Medicine, University of Toronto, Toronto, ON, Canada
*
Author for correspondence: Brigette M. Hales, M.Sc., Director, Quality & Patient Safety, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, H238, Toronto, Canada M4N 3M5. E-mail: Brigette.Hales@sunnybrook.ca
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Abstract

Objective

The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.

Method

This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.

Result

Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.

Significance of results

To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Keywords

Medical assistance in dyingPhysician-assisted deathFamily perspectiveQualitative researchQuality improvement
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 5 , October 2019 , pp. 590 - 595
Copyright
Copyright © Cambridge University Press 2019 

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