Operationalizing Legal Rights in End-of- Life Decision-Making: A Qualitative Study

Abstract

Background: For a patient’s legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers.

Aim: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia.

Design: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts.

Setting/participants: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers.

Results: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making.

Conclusion: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

Note:
Funding Information: None to declare.

Declaration of Interests: The project was funded by the Australian Research Council Linkage Grant scheme (LP140100883) and the Cancer Councils of Victoria, Queensland, and New South Wales, Australia, as collaborative partners.

Ethics Approval Statement: Approval was obtained from the Human Research Ethics Committees at the Queensland University of Technology (#1600000569 18/07/2016), The University of Queensland (#2016000068 16/08/2016), Cancer Council Victoria (#1610 14/10/2016), Cancer Council NSW (#308 02/12/2016), and UnitingCare Queensland (White20316 16/01/2017). All participants were given prior written information about the study and signed consent forms.

Keywords: Advance care planning, end-of-life decision-making, law, legal rights, palliative care

JEL Classification: I00, I10, I19, K00, K10, K19, K32, K39