Adverse events arising from a palliative care survey

Area of Science:

• Palliative Care
• Medical Ethics
• Patient Advocacy

Background:

• Cystic Fibrosis (CF) is a life-limiting genetic disorder with uncertain lung transplant outcomes.
• Developing evidence-based practice requires understanding patient, family, and healthcare professional needs, especially in sensitive areas.
• A dual approach integrating transplant preparation and palliative care exploration is essential for CF patients.

Purpose of the Study:

• To investigate patient, family, and healthcare professional attitudes and needs regarding end-of-life care in cystic fibrosis.
• To explore adverse responses and complaints received during a survey on end-of-life care for CF patients.

Main Methods:

• A survey with 60 questions across five domains was distributed to 200 cystic fibrosis patients.
• 82 (41%) patients completed the survey.
• Six complaints from families of seven patients (3.5%) were received by the Institutional Ethics Committee.

Main Results:

• The majority of complaints originated from family members, not patients.
• Reasons for complaints included dissatisfaction with the sensitive topic, insufficient warning, and perceived inappropriateness for the patient's health status.
• Adverse responses to end-of-life care surveys highlight ethical considerations and the impact on researchers.

Conclusions:

• Survey instruments addressing end-of-life care, particularly in conditions like cystic fibrosis, can elicit significant adverse reactions.
• Ethical reporting of such adverse responses is crucial, akin to other investigational studies.
• The process of handling complaints impacts study researchers, underscoring the need for sensitive research design and communication.