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

Abstract

ObjectiveThe 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.MethodThis 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.ResultImprovement 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 resultsTo 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.

Relational influences on experiences with assisted dying: A scoping review

“…24 Nurses found compassionate listening, actively engaging in the conversations, asking open-ended questions, and being transparent were critical to addressing patients’ and family members’ inquiries, expectations, and fears. 22,24 –30 Interprofessional communication and collaboration, when utilized, resulted in positive outcomes of the assisted dying process. 22,25,26,28 –31 Some HCPs were found to view requests for assisted dying as a poor reflection of the care they offered their patients.…”

“…19,20,32,33 When sociocultural contexts such as religious background or professional values of HCPs did not align with the request for assisted dying, there were reported instances of hostility or disinterest, which negatively affected patients and their family members. 17,21,27,34…”

“…15,17,19,21 The possibility of worsening of symptoms and losing the capacity to consent also affected the scheduling of death. 17 –19,21,27,38 Other relational influences, such as lack of resources (availability of space or HCPs), extended the date of death, resulting in prolonged suffering and some patients no longer meeting criteria for assisted dying. 17,18,38 HCPs reported that patients who were on the verge of losing capacity took drastic measures such as refusing medications to remain competent in order to consent for assisted dying and to fulfill their EOL wishes.…”

Medical Assistance in Dying (MAiD): A Descriptive Study From a Canadian Tertiary Care Hospital

“…Even then, many patients noted that the referral was not made by their ongoing physician/health team but rather by a provider at the time of an acute care admission or via the patient independently working to arrange an assessment. A prior quality assessment study at our institution 28 noted distress described by many families regarding the number of times they were required to raise or request information on MAiD before they felt "heard" and had the request acted upon. This may be because practitioners are uncomfortable with exploring a MAiD request or are misinformed about the referral process or patient eligibility criteria.…”

Factors predicting the risk of loss of decisional capacity for medical assistance in dying: a retrospective database review

“…11 Prior work has highlighted the importance that patients place on receiving MAiD once they have made the decision to proceed. [12][13][14] For those who are seriously ill or felt to be at risk of losing capacity to provide final consent, the 10day reflection period can be a source of marked anxiety for the patient, with providers needing to balance patientcentred care with adherence to the legislation. The reflection period can be waived if both assessors feel the patient is at immi nent risk of death or loss of capacity, but to date there are no evidencebased data to help assessors determine who might be at such risk.…”