Consensus Guidelines: Respiratory Changes in Home Hospice

Key Message: Fifty experts developed consensus guidelines for defining and intervening with the common respiratory changes found in home hospice at the end of life. This session will share the consensus guidelines and facilitate discussion, based on a small pilot study, on implementation.

Abstract: Cheyne-Stokes breathing, noisy breathing (aka death rattle), and agonal breathing are common respiratory changes at the end of life. These conditions present unique and arduous challenges, especially in home hospice care, where the social isolation of family members and the reliance on 24-hour family care, supplemented only by intermittent visits from hospice staff, compound the difficulty of managing these symptoms. In addition to the burden of caring for their loved ones during this death vigil time, family members report great distress at bearing witness to these sights and sounds of dying. 1
Despite its common occurrence, the literature does not consistently define these conditions, and the evidence for intervention is ubiquitous. A recent systematic review found inconsistent descriptions and a lack of agreement on treatments. With a focus on the home hospice population, 50 international, interprofessional hospice and palliative care experts participated in a three-round modified Delphi study to reach consensus on the definitions and interventions for these respiratory changes. A small pilot study has been conducted to identify implementation issues. This session will describe the consensus guidelines and create a forum for feedback, discussion, and follow-up strategies for implementation.
Following the presentation of the guidelines and the consensus process, participants will pair up and share feedback on the consensus findings, focusing on the implementation of the recommendations. The participants will respond to the ethical questions identified in the Delphi study, addressing issues such as family demand for interventions without an evidence base. Family education was the most recommended intervention; yet there was no consensus on when to offer family education, thus participants will discuss the options. Lastly, participants will be asked to identify additional research questions as groundwork for future clinical research in the area.

References: 1. Oliver DP, Donehower A, Washington KT, Benson JJ, Mayahara M, White P. The Secrets of the Backstage: Directing Death Vigils. J Palliat Med. Dec 2024;27(12):1591-1597. doi:10.1089/jpm.2024.0146