Medical Assistance in Dying in patients with advanced cancer and their caregivers: a mixed methods longitudinal study protocol

Abstract

Background The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers. Methods A cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods. Discussion This study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.

Medical Assistance in Dying in Oncology Patients: A Canadian Academic Hospital’s Experience

“…Future work should include prospective studies which longitudinally evaluate patients with terminal cancer and their caregivers using validated questionnaires. An ongoing study at the University of Toronto seeks to better understand the various patient-centred physical, psychological, and social factors involved in the desire for death and MAID completion in Canadian cancer patients through validated questionnaires and qualitative interviews [ 31 ]. Given Canada’s cultural and ethnic diversity, it will be important to understand differences in attitudes and access to MAID and end-of-life care.…”

Symptom Burden and Complexity in the Last 12 Months of Life among Cancer Patients Choosing Medical Assistance in Dying (MAID) in Alberta, Canada

“…Finally, when trying to ascertain why individuals may choose to receive MAID, physical symptom burden and a loss of meaning, autonomy and identity [7] have been identified as predictors. A widely accepted approach to minimizing these types of distress includes the early integration of a palliative approach to care [38].…”

“…Such suffering experienced by patients living with advanced cancer can manifest into the desire for death. This can range from wishing for death to occur sooner than it would naturally, to actively seeking medically assisted death [6,7]. Recognizing the suffering that patients with serious illness often experience, and understanding that some patients may have the desire for death, many jurisdictions and countries have developed legislation around medically assisted death.…”

Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation

“…At that time, community approval for the new law was polled at 88% [ 2 ] and there was widespread interest in public consultations held by government prior to parliamentary debate with 867 participants in community forums and 541 written submissions [ 3 ]. The WA experience of legislative change has also been occurring in the wider national and international context with similar laws already passed in Canada (in 2016, referred to there as medical assistance in dying (MAiD) legislation) [ 4 ], the Netherlands, Belgium, Switzerland, Luxemburg, some states in the United States of America, New Zealand (2019), Spain (2021) [ 5 ] and other Australian states from 2018 to 2021. Many jurisdictions had a defined period for implementation prior to full enactment of their laws, allowing time for dialogue about how healthcare services will respond, however there is minimal literature on the interface between palliative care and legalised VAD to guide services in conversations with both internal and external stakeholders.…”