Highlights
- •End-of-life decision making is a process, not a discrete event, spanning the chronic illness.
- •It involves three phases: preparation, decisions, outcomes; caregivers are vital throughout.
- •Preparation occurs in the chronic illness, and decisions (which are many) in the terminal illness.
- •Preparation includes clinically modifiable factors for improving end-of-life decision making.
- •Measurement of the process is needed; including the dose, content, and quality of all factors.
Abstract
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.
Keywords
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Article info
Publication history
Published online: September 15, 2020
Accepted:
July 10,
2020
Received in revised form:
June 26,
2020
Received:
September 25,
2019
Footnotes
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).
Dr. De Santis has nothing to declare.
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