The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions
Abstract Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections...
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| Format: | Article |
| Language: | English |
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BMC
2023-03-01
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| Series: | BMC Medical Ethics |
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| Online Access: | https://doi.org/10.1186/s12910-023-00902-3 |
| _version_ | 1797273336759189504 |
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| author | Ben P. White Ruthie Jeanneret Eliana Close Lindy Willmott |
| author_facet | Ben P. White Ruthie Jeanneret Eliana Close Lindy Willmott |
| author_sort | Ben P. White |
| collection | DOAJ |
| description | Abstract Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics. |
| first_indexed | 2024-03-07T14:42:53Z |
| format | Article |
| id | doaj.art-9d2fbeedbf66497087bd06c9c4260d96 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-03-07T14:42:53Z |
| publishDate | 2023-03-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-9d2fbeedbf66497087bd06c9c4260d962024-03-05T20:11:18ZengBMCBMC Medical Ethics1472-69392023-03-0124111210.1186/s12910-023-00902-3The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptionsBen P. White0Ruthie Jeanneret1Eliana Close2Lindy Willmott3Faculty of Business and Law, Australian Centre for Health Law Research, Queensland University of TechnologyFaculty of Business and Law, Australian Centre for Health Law Research, Queensland University of TechnologyFaculty of Business and Law, Australian Centre for Health Law Research, Queensland University of TechnologyFaculty of Business and Law, Australian Centre for Health Law Research, Queensland University of TechnologyAbstract Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics.https://doi.org/10.1186/s12910-023-00902-3Assisted dyingMedical assistance in dyingEuthanasiaAssisted suicideInstitutional objectionPatient experience |
| spellingShingle | Ben P. White Ruthie Jeanneret Eliana Close Lindy Willmott The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions BMC Medical Ethics Assisted dying Medical assistance in dying Euthanasia Assisted suicide Institutional objection Patient experience |
| title | The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions |
| title_full | The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions |
| title_fullStr | The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions |
| title_full_unstemmed | The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions |
| title_short | The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions |
| title_sort | impact on patients of objections by institutions to assisted dying a qualitative study of family caregivers perceptions |
| topic | Assisted dying Medical assistance in dying Euthanasia Assisted suicide Institutional objection Patient experience |
| url | https://doi.org/10.1186/s12910-023-00902-3 |
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