Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.
Meena Kalluri, Sara Orenstein, Nathan Archibald and 1 others
PMID 34433294WHAT IT FOUND
Patients with idiopathic pulmonary fibrosis, caregivers and clinicians said advance care planning was too late and information was too scarce.
They wanted early, open, honest conversations about breathlessness, dying, home and hospice options, with caregivers included.
Key findings
01Patients and caregivers wanted advance care planning to begin early, with honest information about progression and death.
02Clinicians reported conversations often happened late or during crises, and patients and families were unprepared.
03End-of-life planning was recommended, including home death and alternatives to hospital.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Participants were recruited by convenience and snowball sampling, so they may not represent all patients with IPF, caregivers or clinicians. Twenty participants were interviewed, and the sample was mostly Caucasian, so findings may not transfer widely. Some health care professionals had previous training in an integrated palliative approach, and they may have been more confident about advance care planning than clinicians without that background. The study reports perceptions and recommendations, not outcomes of a tested intervention.
Declared interests
The authors declared no potential conflicts of interest. Funding was reported as the University of Calgary 2016 Summer Studentship of the Health Professions Education Grant Program, and the funder named was the University of Alberta.
The easy way to misread this
Do not conclude that early advance care planning improves patient outcomes. This qualitative study reports what participants said they wanted and experienced, not what an intervention achieved.