Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study
Abstract Introduction Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a conne...
| Main Authors: | , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-12-01
|
| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13867 |
| _version_ | 1797633221100306432 |
|---|---|
| author | Ben P. White Ruthie Jeanneret Lindy Willmott |
| author_facet | Ben P. White Ruthie Jeanneret Lindy Willmott |
| author_sort | Ben P. White |
| collection | DOAJ |
| description | Abstract Introduction Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this ‘point of access’ barrier. Methods We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants. |
| first_indexed | 2024-03-11T11:51:01Z |
| format | Article |
| id | doaj.art-9c14be3ec14347c4a4aa4345646e4cf5 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-03-11T11:51:01Z |
| publishDate | 2023-12-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-9c14be3ec14347c4a4aa4345646e4cf52023-11-09T06:54:54ZengWileyHealth Expectations1369-65131369-76252023-12-012662695270810.1111/hex.13867Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method studyBen P. White0Ruthie Jeanneret1Lindy Willmott2Australian Centre for Health Law Research, Faculty of Business and Law Queensland University of Technology Brisbane Queensland AustraliaAustralian Centre for Health Law Research, Faculty of Business and Law Queensland University of Technology Brisbane Queensland AustraliaAustralian Centre for Health Law Research, Faculty of Business and Law Queensland University of Technology Brisbane Queensland AustraliaAbstract Introduction Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this ‘point of access’ barrier. Methods We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.https://doi.org/10.1111/hex.13867access to health careassisted dyingeuthanasiamedical assistance in dyingpatient experiencequalitative study |
| spellingShingle | Ben P. White Ruthie Jeanneret Lindy Willmott Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study Health Expectations access to health care assisted dying euthanasia medical assistance in dying patient experience qualitative study |
| title | Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study |
| title_full | Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study |
| title_fullStr | Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study |
| title_full_unstemmed | Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study |
| title_short | Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study |
| title_sort | barriers to connecting with the voluntary assisted dying system in victoria australia a qualitative mixed method study |
| topic | access to health care assisted dying euthanasia medical assistance in dying patient experience qualitative study |
| url | https://doi.org/10.1111/hex.13867 |
| work_keys_str_mv | AT benpwhite barrierstoconnectingwiththevoluntaryassisteddyingsysteminvictoriaaustraliaaqualitativemixedmethodstudy AT ruthiejeanneret barrierstoconnectingwiththevoluntaryassisteddyingsysteminvictoriaaustraliaaqualitativemixedmethodstudy AT lindywillmott barrierstoconnectingwiththevoluntaryassisteddyingsysteminvictoriaaustraliaaqualitativemixedmethodstudy |