Sights and Sounds of Respiratory Changes During Hospice Death Vigils: Hospice Caregivers Experience

Context: Research has documented common respiratory changes at the end of life for hospice patients. Some studies have noted these symptoms as distressing and challenging for families, and as a potential reason for emergency room visits and hospice benefit revocation. However, the experiences and emotions of family members regarding these respiratory changes in the final days, particularly when they are alone in a home setting, are not well documented. A recent study found 51% caregivers identified abnormal breathing as a challenge during their vigil experience. Objectives: The study aimed to answer three research questions: 1) How do family members describe the sights and sounds of the respiratory changes experienced during the final days of life? 2) What are the emotions caregivers experience as a result of witnessing the sights and sounds of respiratory changes? 3) What interventions are caregivers using to manage respiratory changes? Methods: A secondary analysis of 22 hospice caregiver interviews from a larger study of family interviews focused analyzing in depth narratives related to respiratory changes during the vigil period. Results: Caregiver narratives distressful sights and sounds related to respiratory symptoms during the final days were described by 27% and 77% of family narratives, respectively. Negative emotional reactions were reported by more than a third of those interviewed. Caregivers expressed frustration at not understanding the reasons behind respiratory changes, with 27% noting they wished for more information on what to expect and how to intervene. There were inconsistencies in the interventions provided by hospice teams in managing respiratory symptoms. Conclusions: Opportunities exist for hospice agencies to better address the caregiver distress caused by witnessing noisy breathing (death rattle), Cheyne-Stokes breathing, and agonal breathing. Further research is needed to identify standard definitions for these respiratory changes, their prevalence in the home hospice setting, and to develop practice standards and effective interventions to relieve caregiver distress.