• Palliative medicine · Oct 2018

    Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences.

    • Charlotte Pooler, Janice Richman-Eisenstat, and Meena Kalluri.
    • 1 Palliative and End of Life Care & Community Programs, Continuing Care, Alberta Health Services, Edmonton, AB, Canada.
    • Palliat Med. 2018 Oct 1; 32 (9): 1455-1464.

    BackgroundIdiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.AimThe purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic.DesignA narrative approach was used, with thematic and content analysis of open-ended interviews.Setting/ParticipantsThe clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children.ResultsFive major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships.ConclusionCollaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

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