JMIR Publications

ABSTRACT

Background:

Legacy – what one leaves behind and how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness. Preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide comprehensive understanding of how legacy considerations relate to patient choices about their medical care.

Objective:

The objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices.

Methods:

This protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O’Malley, as well as the Joanna Briggs Institute Reviewer’s manual. This scoping review will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO and others and will include legacy-specific grey literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990-present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, two independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on pre-determined exclusion/inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions/exclusions. During the second step, the full texts will be screened by two reviewers and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy.

Results:

This study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact patient treatment choices. The results of this study will be submitted to an indexed journal.

Conclusions:

Very little is known about the role of legacy in treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision making for people facing or living with serious illness.