Access to voluntary assisted dying in Victoria: a qualitative study of family caregivers’ perceptions of barriers and facilitators

Abstract

ObjectivesTo investigate barriers to and facilitators of access to voluntary assisted dying in Victoria under the Voluntary Assisted Dying Act 2017 (Vic).Design, setting, participantsQualitative study; semi‐structured interviews with people who had applied for voluntary assisted dying or their family caregivers, recruited via social media and interested advocacy groups; interviews conducted 17 August – 26 November 2021.Main outcome measuresBarriers to and facilitators of access to voluntary assisted dying.ResultsWe interviewed 33 participants about 28 people who had applied for voluntary assisted dying; all but one of the interviews were with family caregivers after their relatives’ deaths, and all but three were conducted via Zoom. The major barriers to access identified by participants were finding trained and willing doctors to assess eligibility for voluntary assisted dying; the time required for the application process (especially given how ill the applicants were); the prohibition of telehealth consultations; institutional objections to voluntary assisted dying; and the prohibition of health practitioners raising voluntary assisted dying with their patients. The major facilitators mentioned were care navigators (both the Statewide service and local navigators); finding a supportive coordinating practitioner; the Statewide Pharmacy Service; and system flow once the process had been initiated (although not during the early days of voluntary assisted dying in Victoria). Access was particularly difficult for people in regional areas or with neurodegenerative conditions.ConclusionsAccess to voluntary assisted dying has improved in Victoria, and people generally felt supported while navigating the application process once they found a coordinating practitioner or a navigator. But this step, and other barriers, often still made patient access difficult. Adequate support for doctors, navigators and other facilitators of access is vital for the effective functioning of the overall process.

Voluntary assisted dying in Australia: emerging questions

“…Caution imposes burdens on applicants for voluntary assisted dying, their families, and participating doctors. In this issue of the Journal, White and colleagues discuss the barriers and facilitators of voluntary assisted dying for Victorians, as reported by family caregivers 11 . The main barrier was finding doctors willing to assist, especially during the early days of legal assisted dying, when few doctors had completed the mandatory training.…”

“…The main barrier was finding doctors willing to assist, especially during the early days of legal assisted dying, when few doctors had completed the mandatory training. The need for one of the two assessing doctors to have expertise in the illness of the applicant also caused delays, particularly for people in regional areas with neurological diseases 11 …”

“…White and colleagues found that institutional objections blocked access to voluntary assisted dying services for some Victorians, causing distress; some people had to leave their usual place of residence to gain access 11 . The balance between a person's right to voluntary assisted dying and an institution's objection to it was not addressed in the Victorian, Western Australian, or Tasmanian legislation, but it has been defined in more recent state laws 8 .…”

“…White and colleagues also found that, as the voluntary assisted dying system became more established, the application process was generally less difficult 11 . Many participants lauded the helpful personal and professional qualities of the doctors, care navigators, and pharmacists.…”

“…Our communities will grapple with questions about voluntary assisted dying matters well into the future. Discussions will be informed by research of the kind published in the MJA 11 . We will have the opportunity to learn how legislative variations and nuances produce different outcomes across Australia.…”