scholarly journals Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e034594 ◽  
Author(s):  
Jacob Crawshaw ◽  
Justin Presseau ◽  
Zack van Allen ◽  
Livia Pinheiro Carvalho ◽  
Kim Jordison ◽  
...  
Keyword(s):  
Decision Making ◽  
Organ Donation ◽  
Self Regulation ◽  
Theoretical Domains Framework ◽  
Decision Makers ◽  
Sampling Frame ◽  
Theoretical Frameworks ◽  
Deceased Organ Donation ◽  
Substitute Decision Makers ◽  
Regulation Model

IntroductionIn Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation.Methods and analysisSDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient’s death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks—the Common-Sense Self-Regulation Model and the Theoretical Domains Framework— to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis.Ethics and disseminationThis study has been approved by the Centre Hospitalier de l’Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation.Trial registration numberNCT03850847.

scholarly journals Operationalizing legal rights in end-of- life decision-making: A qualitative study

2021 ◽  
pp. 026921632110401
Author(s):  
Cheryl Tilse ◽  
Lindy Willmott ◽  
Jill Wilson ◽  
Rachel Feeney ◽  
Ben White
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Decision Makers ◽  
Legal Rights ◽  
Terminally Ill Patients ◽  
Health Care Practitioners ◽  
Substitute Decision Makers ◽  
End Of Life Decision ◽  
Life Decision

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.

scholarly journals Sexual Expression in Alberta’s Continuing Care Homes: Capacity, Consent, and Co-decision-making

2020 ◽  
pp. 1-10
Author(s):  
Julia Brassolotto ◽  
Lisa Howard ◽  
Alessandro Manduca-Barone
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Care Staff ◽  
Cognitive Capacity ◽  
Sexual Expression ◽  
Continuing Care ◽  
Relational Dynamics ◽  
Sexual Autonomy ◽  
Substitute Decision Makers

ABSTRACT In this article, we explore the role of substitute decision-makers (SDMs) in matters of sexual expression for continuing care residents with diminished cognitive capacity. We examine how Alberta’s current use of SDMs can enable an “all-or-none” approach to competence, wherein a person either has capacity to make all decisions or is incapable of making any. Three factors facilitate an environment in which this approach can influence residents’ sexual expression. These include the wording of current legislation, lack of resources for SDMs, and relational dynamics between SDMs and care staff. We provide a critical review of existing legislation and empirical evidence of its challenges in practice. Though we focus on the Alberta context, there is reason to believe that similar issues persist in other Western jurisdictions. We offer several recommendations for how we can better support residents’ sexual autonomy in continuing care and avoid pitfalls of the “all-or-none” approach to competence.

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