None listed
Conditions
Brief summary
Over the first three years of the Voluntary Assisted Dying (VAD) legislation, patients, families and clinicians have experienced significant challenges as they seek information, access and a better understanding of the ethical, legal and clinical implications of VAD. Several anecdotal accounts have been shared across services, but no systematic effort has been undertaken to study the in-depth impact of this legislation. We propose applying several lenses which include a clinical, ethical, psycho-existential focus on: patients, caregivers, health practitioners, and services-as-a-whole. We have assembled an experienced team of palliative and psychosocial care providers, ethicists and service leaders to undertake this review. The setting examines the unique interaction where the legal directive of VAD does not clearly align with the ethical and clinical principles of health care delivery in end of life care and palliative care. By sustaining our focus on the quality-of-care provision to patients and families, this research is not driven by polemics. Instead, its focus is on clinical outcomes that embrace both patients and families and care providers and enables an in-depth analysis of this new model of care to be undertaken. The goal is directed towards optimising palliative care, not the delivery of VAD. The potential for moral distress, impact on care provision and unwelcome bereavement outcomes make this focus of study worthwhile and necessary to sustain the model of palliative care delivery. A mixed-methods approach will be employed using qualitative and quantitative methodology and case reviews. We will retrospectively assess socio-demographic, medical and health utilisation data from the medical records of patients (n=120) who have expressed an interest in or pursued VAD, specifically identifying pertinent clinical issues and the utilisation of palliative care services. A qualitative descriptive approach will be used to analyse interviews (n=120) undertaken with clinicians and family caregivers about their experiences of the VAD process, involvement of palliative care and bereavement support. In addition to thematic analysis, the researchers will use these data to construct anonymised case studies that illustrate or exemplify ethical issues or challenges. These will be shared with expert bioethics collaborators who will comment on the issues themselves and on the potential usefulness of case studies, perhaps modified, for the purposes of medical education. Ultimately this information will be valuable to inform policy, future legislation, education and support for our community around end of life care and palliative care provision.
Interventions
This study aims to explore the means by which services continue to deliver palliative care and care for the bereaved considering the ethical, legal and clinical implications in the context of the new legislations, Voluntary Assisted Dying (VAD) which has been passed in all states in Australia. The main objectives of the study is to:
1) assess the clinical decisions associated with the provision of VAD and the overall care delivered to these patients.
2) examine the impact of VAD on care provider
This study aims to explore the means by which services continue to deliver palliative care and care for the bereaved considering the ethical, legal and clinical implications in the context of the new legislations, Voluntary Assisted Dying (VAD) which has been passed in all states in Australia. The main objectives of the study is to: 1) assess the clinical decisions associated with the provision of VAD and the overall care delivered to these patients. 2) examine the impact of VAD on care providers, palliative care teams, family and carers, including evidence for moral distress, ethical challenges, and complicated grief in bereavement. 3) examine whether the possibility of VAD has had an impact on the understanding of ‘outcomes’ or ‘quality’ of palliative care among care providers, palliative care teams, family and carers. 4) identify specific issues pertaining to legislation and its operations that compromise our ability to maintain ethical integrity and seek ways to mitigate these issues. The cohort consists of those patients who have enquired or accessed the VAD process after June 2019. The caregivers and health practitioners who provided care for this cohort of patients will also be eligible. The study will involve the review of 100-120 patient medical records and interviews with 20-30 patients, 20-30 caregivers, 20-30 bereaved caregivers and 20-30 health practitioners. This study will be conducted across eight sites in Victoria and Western Australia. After the qualitative and quantitative data is collected there will not be any follow up or further observations on this cohort of people. Information from patient medical records will include: demographics, diagnosis, health service utilisation, reason and date of death. The medical record will be accessed from the time of expression of interest in VAD until last contact with health services or patient time of death. The interviews will be conducted once for 15-30 minutes either face-to-face or online with a semi-structured interview conducted by a trained project officer.
Sponsors
University of Notre Dame
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Patients who have expressed an interest in or explicitly sought VAD from 19th June 2019 onwards will be identified at each service. Those eligible will include those who have considered VAD and engaged in discussions about its potential use and those who have engaged in the VAD process and who have or have not died using VAD. Caregivers and health practitioners involved in an eligible patient's care will also be eligible to participate in this study.
Exclusion criteria
Ineligible patients will be those who made a fleeting reference to VAD but did not engage in more detailed discussions. These patient's caregivers and the health practitioners who provided care will be ineligible to participate in this study.
Outcome results
None listed