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Adverse events arising from a palliative care survey

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

J. Philip

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

F. Finlayson

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

H. Tranberg

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

M. Gold

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

T. Kotsimbos

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne

J. Wilson

Cystic Fibrosis Service, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital, Melbourne, john.wilson{at}med.monash.edu.au

Development of evidence-based practice requires investigation of the attitudes and needs of patients, families and healthcare professionals, particularly for sensitive subject areas. Cystic fibrosis (CF) is a recessively inherited life-limiting disorder resulting in early death. Patients with this condition generally expect that lung transplantation will be an available treatment option; however, this is uncertain. A dual approach to care that involves both preparing patients for transplant assessment, while simultaneously exploring acceptable palliative care options is needed. A survey amongst patients with CF, their families and health carers was conducted to understand their attitudes and needs in relation to end-of-life care. The survey encompassed five separate domains, with a total of 60 questions requiring approximately 20 min to complete. Of the 200 surveys sent to patients, 82 (41%) completed responses were received. The Institutional Ethics Committee received six complaints from families of seven patients (3.5% of those surveyed). This article explores the nature of the adverse responses to the survey. The majority of complaints were received from family members rather than from patients. Complaints described dissatisfaction with the topic, little warning about the study and felt it to be inappropriate for their family member’s level of health. Survey instruments used to determine attitudes and needs in relation to end-of-life patient care are likely to elicit adverse responses that should be reported in a similar way to other investigational studies. Also arising from adverse responses and the complaint process, is the impact of criticism on study researchers.

Key Words: adverse effects • chronic disease • cystic fibrosis • family • surveys

This version was published on October 1, 2009

Palliative Medicine, Vol. 23, No. 7, 665-669 (2009)
DOI: 10.1177/0269216309106894


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