TY - JOUR
T1 - End-of-life decision making in the context of chronic life-limiting disease
T2 - a concept analysis and conceptual model
AU - Levoy, Kristin
AU - Tarbi, Elise C.
AU - De Santis, Joseph P.
N1 - Funding Information:
Declaration of Interest: During the conduct of this study Dr. Levoy was funded, in part, by a Future of Nursing Scholars Award from the Robert Wood Johnson Foundation, a Doctoral Degree Scholarship in Cancer Nursing (131753-DSCN-18-072-SCN) from the American Cancer Society, and a National Institute of Nursing Research Ruth L. Kirschstein National Research Service Award program (T32NR009356). During the conduct of this study Ms. Tarbi was funded, in part, by a National Institute of Nursing Research Ruth L. Kirschstein National Research Service Award program (T32NR009356).
Publisher Copyright:
© 2020 Elsevier Inc.
PY - 2020/11/1
Y1 - 2020/11/1
N2 - Background: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. Purpose: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. Method: Walker and Avant's approach to concept analysis. Findings: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). Discussion: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.
AB - Background: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. Purpose: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. Method: Walker and Avant's approach to concept analysis. Findings: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). Discussion: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.
KW - Advance care planning
KW - Caregiver
KW - Chronic disease
KW - Conceptual model
KW - End-of-life decision making
KW - Measurement
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U2 - 10.1016/j.outlook.2020.07.008
DO - 10.1016/j.outlook.2020.07.008
M3 - Article
C2 - 32943221
AN - SCOPUS:85090943168
VL - 68
SP - 784
EP - 807
JO - Nursing Outlook
JF - Nursing Outlook
SN - 0029-6554
IS - 6
ER -