A framework for nurses working in partnership with substitute decision‐makers for people living with advanced dementia: A discursive paper

2021 ◽  
Author(s):  
Sarah Jane Cresp ◽  
Susan Fiona Lee ◽  
Cheryle Moss
Keyword(s):  
Decision Makers ◽  
Advanced Dementia ◽  
Substitute Decision Makers

Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1532-1559 ◽  
Author(s):  
Sarah Jane Cresp ◽  
Susan Fiona Lee ◽  
Cheryle Moss
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
End Of Life ◽  
Older Persons ◽  
Decision Makers ◽  
Research Quality ◽  
Advanced Dementia ◽  
Care Plans ◽  
Substitute Decision Makers

Background Substitute decision makers are important for people with advanced dementia, particularly at the end of life. Substitute decision makers report issues in providing support, and physical and psychological consequences from the role. However, there is no synthesised evidence about how substitute decision makers are affected by and experience making decisions for older persons diagnosed with dementia at end of life. Methodology: A protocol for a qualitative systematic review was developed. Seven articles met both inclusion and research quality criteria following a comprehensive search for published and unpublished studies (January 2007–2017, English language). Meta-synthesis was achieved through meta-aggregation of the results from included studies. Results Meta-aggregation of 20 themes into eight categories resulted in five synthesised findings. The findings were: ‘trust’; ‘guilt, mistrust and confusion’; ‘translating quality of life’; ‘negotiating families’; and ‘uncertainty and reactivity’. Trust in healthcare personnel positively affected substitute decision makers and supported their adaptability. Substitute decision makers experienced guilt, mistrust, and confusion as they encountered increased complexity in care and health interventions as social needs changed. Substitute decision makers experienced complexities and struggles as they interpreted quality of life and negotiated end of life treatment decisions. Substitute decision makers experienced practical needs to negotiate family as they fulfilled their support roles. Ambiguity in advance care plans, limited knowledge of dementia, end of life uncertainties, and communication issues reduced substitute decision makers’ proactivity. Implications: Being a substitute decision maker for people with advanced dementia at end of life is stressful. Health professionals need to be cognizant of substitute decision makers experiences and needs, and identify mechanisms to achieve support and education. The findings generate need for further investigation of interventions to meet the needs of substitute decision makers.

scholarly journals Withdrawing Versus not Offering Cardiopulmonary Resuscitation: Is There a Difference?

2015 ◽  
Vol 22 (1) ◽  
pp. 20-22 ◽  
Author(s):  
Simon JW Oczkowski ◽  
Bram Rochwerg ◽  
Corey Sawchuk
Keyword(s):  
Mechanical Ventilation ◽  
Cardiopulmonary Resuscitation ◽  
Health Care Providers ◽  
Case Law ◽  
Decision Makers ◽  
Court Decisions ◽  
Medical Team ◽  
Care Providers ◽  
Substitute Decision Makers ◽  
The Individual

Conflict between substitute decision makers (SDMs) and health care providers in the intensive care unit is commonly related to goals of treatment at the end of life. Based on recent court decisions, even medical consensus that ongoing treatment is not clinically indicated cannot justify withdrawal of mechanical ventilation without consent from the SDM. Cardiopulmonary resuscitation (CPR), similar to mechanical ventilation, is a life-sustaining therapy that can result in disagreement between SDMs and clinicians. In contrast to mechanical ventilation, in cases for which CPR is judged by the medical team to not be clinically indicated, there is no explicit or case law in Canada that dictates that withholding/not offering of CPR requires the consent of SDMs. In such cases, physicians can ethically and legally not offer CPR, even against SDM or patient wishes. To ensure that nonclinically indicated CPR is not inappropriately performed, hospitals should consider developing ‘scope of treatment’ forms that make it clear that even if CPR is desired, the individual components of resuscitation to be offered, if any, will be dictated by the medical team’s clinical assessment.

Addressing bullying behaviour by patients and families

2019 ◽  
Vol 32 (4) ◽  
pp. 224-227
Author(s):  
Renate Ilse ◽  
David Neilipovitz
Keyword(s):  
Environmental Factors ◽  
Patient Experience ◽  
Ethical Dilemma ◽  
Well Being ◽  
Care Team ◽  
Decision Makers ◽  
Ethical Implications ◽  
Health Support ◽  
Substitute Decision Makers

This article explores the ethical dilemma of maintaining patient experience and care team well-being when faced with coercive behaviour, specifically bullying by patients, families and substitute decision-makers, which is directed toward providers and health support workers. We discuss some of the contributing societal and environmental factors, the ethical implications for health leaders, and suggest some practical options for managing bullying situations in hospitals.

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 Does the public feel prepared to be substitute decision-makers? Gaps in preparedness and support for a high school curriculum: a national survey

2020 ◽  
Author(s):  
Michael K Y Wong ◽  
Mengzhu Jiang ◽  
Maria Cassandre Medor ◽  
Katerina Yelle Labre ◽  
Jason R Frank ◽  
...  
Keyword(s):  
High School ◽  
Multivariate Analysis ◽  
Online Survey ◽  
School Curriculum ◽  
Decision Makers ◽  
Secondary Outcome ◽  
High School Curriculum ◽  
Loved One ◽  
Values And Beliefs ◽  
Substitute Decision Makers

Abstract Background Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM. Methods We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis. Results Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it. Interpretation There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.

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.

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