Adverse events arising from a palliative care survey

Abstract

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.

Research Participation Experiences of Parents of Children with Cancer Who Were Asked about their Child's Prognosis

“…Review boards tend to be more conservative in judging harm than researchers and even participants, 2 who offer a more nuanced perspective. Although participants may experience distress and anxiety due to studies about medical experiences, [3][4][5] research participation is also perceived as therapeutic or empowering [6][7][8][9][10][11] and an opportunity to help others in the same situation. 7,12,13 Even participants who express feelings of distress often state that they would take part in a study again.…”

Palliative care in cardiopulmonary transplantation

“…Of note, there were no reported concerns from patients about the content of the survey and the majority of feedback was positive. This finding may relate to familial guilt, given the genetic nature of cystic fibrosis, but could also reflect a reluctance to consider the progressive and life-threatening nature of organ failure 37. Furthermore, on occasion, relatives have voiced the opinion that it has been the transplant team who have directed an aggressive management plan 32…”

Reconciling informed consent and ‘do no harm’: ethical challenges in palliative-care research and practice in chronic obstructive pulmonary disease

“…How a clinician or a researcher describes a diagnosis or identifies their field of study has ethical implications. 13 The term 'palliative care' has been applied predominantly in oncology and the understanding of the term amongst patients with non-malignant disease is not well known. Even amongst palliative-care practitioners there remains a lack of consensus on a definition of palliative care as it has undergone a series of transformations in both tasks and goals.…”