scholarly journals End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

2018 ◽  
Vol 6 ◽  
pp. 205031211877751 ◽  
Author(s):  
Bo Xie ◽  
Amy S Berkley ◽  
Jung Kwak ◽  
Kenneth R Fleischmann ◽  
Jane Dimmitt Champion ◽  
...  
Keyword(s):  
Decision Making ◽  
Literature Review ◽  
End Of Life ◽  
Family Caregivers ◽  
Full Text ◽  
Decision Aids ◽  
Future Research ◽  
Advanced Dementia ◽  
End Of Life Decision ◽  
Life Decision

Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research. Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps. Results: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers’ preferences for different types and amounts of information necessary to make decisions consistent with patients’ values. Conclusion: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers’ decision making. More diverse samples are needed.

scholarly journals “What Would You Do?”: How Cat Owners Make End-of-Life Decisions and Implications for Veterinary-Client Interactions

Animals ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. 1114
Author(s):  
Katherine Littlewood ◽  
Ngaio Beausoleil ◽  
Kevin Stafford ◽  
Christine Stephens
Keyword(s):  
Decision Making ◽  
New Zealand ◽  
End Of Life ◽  
Companion Animals ◽  
Chronically Ill ◽  
Future Research ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Cats are the most common companion animals in New Zealand. Advances in veterinary care means that cats are living longer and there are many older cats. End-of-life decisions about cats are complicated by owner–cat relationships and other psychosocial factors. Our study explored the ways in which end-of-life decisions were being made by owners of older and chronically ill cats in New Zealand and the role of their veterinarian in the process. Qualitative data were gathered via retrospective semi-structured interviews with 14 cat owners using open-ended questions. Transcripts of these interviews were explored for themes using template analysis and nine themes were identified. Four were animal-centered themes: cat behavior change, pain was a bad sign, signs of ageing are not good, and the benefits of having other people see what owners often could not. Five were human-centered themes: veterinarians understanding owners’ relationships with their cat, normalizing death, the need for a good veterinarian to manage end of life, veterinary validation that owners were doing the right thing, and a strong desire to predict the time course and outcome for their cat. End-of-life decision making is complex, and the veterinarian’s role is often poorly defined. Our owners appreciated the expertise and validation that their veterinarian provided but continuity of care was important. Future research aimed at exploring the veterinarian’s perspective during end-of-life decision making for cats would be a valuable addition to the topic.

scholarly journals Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal

2019 ◽  
Vol 33 (8) ◽  
pp. 985-1002 ◽  
Author(s):  
Georgina Phillips ◽  
Kate Lifford ◽  
Adrian Edwards ◽  
Marlise Poolman ◽  
Natalie Joseph-Williams
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Aid ◽  
Decision Aids ◽  
Patient Needs ◽  
Patient Decision Making ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
End Of Life Decision ◽  
Life Decision

Background: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. Aims and design: This systematic review aimed to (a) identify the range of patients’ decision-making needs and (b) assess the extent to which patient decision aids address these needs. Data sources: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990–January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed ‘addressable’. Results: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 ‘addressable’ needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. Conclusion: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

scholarly journals End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Kristin Levoy ◽  
Elise Tarbi ◽  
Joseph De Santis
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Concept Analysis ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Abstract Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research.

scholarly journals Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography

2017 ◽  
Vol 40 (12) ◽  
pp. 1861-1884 ◽  
Author(s):  
Kyounghae Kim ◽  
Katherine Heinze ◽  
Jiayun Xu ◽  
Melissa Kurtz ◽  
Hyunjeong Park ◽  
...  
Keyword(s):  
Decision Making ◽  
Conceptual Framework ◽  
End Of Life ◽  
English Language ◽  
Future Research ◽  
Advanced Illness ◽  
Patient Centered ◽  
Change Models ◽  
End Of Life Decision ◽  
Life Decision

The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

End-of-Life Decision Making in Pediatrics: Literature Review on Children's and Adolescents’ Participation

2014 ◽  
Vol 5 (2) ◽  
pp. 44-54 ◽  
Author(s):  
Katharina M. Ruhe ◽  
Domnita O. Badarau ◽  
Bernice S. Elger ◽  
Tenzin Wangmo
Keyword(s):  
Decision Making ◽  
Literature Review ◽  
End Of Life ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals Value Awareness: A New Goal for End-of-life Decision Making

2019 ◽  
Vol 4 (1) ◽  
pp. 238146831881752 ◽  
Author(s):  
Baruch Fischhoff ◽  
Amber E. Barnato
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Decision Aids ◽  
Relevant Information ◽  
Life Care ◽  
Policy Tool ◽  
End Of Life Decision ◽  
Life Decision

The principal policy tool for respecting the preferences of patients facing serious illnesses that can prompt decisions regarding end-of-life care is the advance directive (AD) for health care. AD policies, decision aids for facilitating ADs, and clinical processes for interpreting ADs all treat patients as rational actors who will make appropriate choices, if provided relevant information. We review barriers to following this model, leading us to propose replacing the goal of rational choice with that of value awareness, enabling patients (and, where appropriate, their surrogates) to be as rational as they can and want to be when making these fateful choices. We propose approaches, and supporting research, suited to individuals’ cognitive, affective, and social circumstances, resources, and desires.

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