A systematic review defining non-beneficial and inappropriate end-of-life treatment in patients with non-cancer diagnoses: theoretical development for multi-stakeholder intervention design in acute care settings

Abstract

Background Non-beneficial treatment is closely tied to inappropriate treatment at the end-of-life. Understanding the interplay between how and why these situations arise in acute care settings according to the various stakeholders is pivotal to informing decision-making and best practice at end-of-life. Aim To define and understand determinants of non-beneficial and inappropriate treatments for patients with a non-cancer diagnosis, in acute care settings at the end-of-life. Design Systematic review of peer-reviewed studies focusing on the above and conducted in upper-middle- and high-income countries. A narrative synthesis was undertaken, guided by Realist principles. Data sources Cochrane; PubMed; Scopus; Embase; CINAHL; and Web of Science. Results Sixty-six studies (32 qualitative, 28 quantitative, and 6 mixed-methods) were included after screening 4,754 papers. Non-beneficial treatment was largely defined as when the burden of treatment outweighs any benefit to the patient. Inappropriate treatment at the end-of-life was similar to this, but additionally accounted for patient and family preferences. Contexts in which outcomes related to non-beneficial treatment and/or inappropriate treatment occurred were described as veiled by uncertainty, driven by organizational culture, and limited by profiles and characteristics of involved stakeholders. Mechanisms relating to ‘Motivation to Address Conflict & Seek Agreement’ helped to lessen uncertainty around decision-making. Establishing agreement was reliant on ‘Valuing Clear Communication and Sharing of Information’. Reaching consensus was dependent on ‘Choices around Timing & Documenting of end-of-life Decisions’. Conclusion A framework mapping determinants of non-beneficial and inappropriate end-of-life treatment is developed and proposed to be potentially transferable to diverse contexts. Future studies should test and update the framework as an implementation tool. Trial registration PROSPERO Protocol CRD42021214137.

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“…Caregivers should also be involved in the decision-making process to help clarify the patients’ wishes as legitimate surrogates. 33 …”

Futility and poor outcomes are not the same thing: A clinical perspective of refined outcomes definitions in liver transplantation

“…Impaired decision-making and the lack of prognostic awareness for patients, and provider ambiguity and prognostic uncertainty contribute, as does a lack of consideration for resource utilization. [38] In transplantation, the latter factors in heavily. Studies on intensive care unit patients at the end of life showed that gravely ill patients wanted to know the full truth relating to their disease and wanted respect for dignity, rather than experience unnecessary and distressing symptoms.…”

“…A recent systematic review defining “nonbeneficial” and “inappropriate end-of-life care” for gravely ill, noncancer patient care attempted to address multistakeholder perceptions and roles in performing futile care. Impaired decision-making and the lack of prognostic awareness for patients, and provider ambiguity and prognostic uncertainty contribute, as does a lack of consideration for resource utilization 38 . In transplantation, the latter factors in heavily.…”

Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers

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“…The terms, potentially inappropriate treatment and non-beneficial are not synonymous ( 4 ). Nonbeneficial treatment emphasizes the lack of expected benefit and the imbalance between the burdens and expected benefits while potentially inappropriate treatment acknowledges that perceptions of appropriateness or benefit are influenced by the preferences, culture and values of patients and providers ( 4 ). What constitutes potentially inappropriate is open to interpretation and the associated subjectivity and ambiguity thus prevent objective measurement of potentially inappropriate treatment.…”