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.
Subject(s)
Cystic Fibrosis/psychology , Dissent and Disputes , Family/psychology , Health Care Surveys , Palliative Care/psychology , Adult , Attitude to Health , Female , Health Care Surveys/ethics , Health Care Surveys/standards , Humans , Male , Palliative Care/ethics , Palliative Care/standards , Professional-Family Relations/ethics , Qualitative Research , Stress, Psychological/psychology , Surveys and Questionnaires , Young AdultABSTRACT
The privacy of patients' health information is of paramount importance. However, it is equally important that medical staff and students have access to photographs and video recordings of real patients for training purposes. Where the patient can be identified from such images, his or her consent is clearly required to both obtain the image and to use it in this way. However, the need for consent, both legally and ethically, is much less convincing where the patient cannot, by the very nature of the image, be identified from it. This is the case for many images used in the teaching of clinical medicine, such as videos taken of laparoscopies, images of internal organs and unlabelled X-rays.
Subject(s)
Biomedical Research , Confidentiality/ethics , Confidentiality/legislation & jurisprudence , Diagnostic Imaging , Ethics, Medical , Pathology, Clinical/education , Teaching Materials , Humans , Informed ConsentABSTRACT
Twenty-five patients suffering from unilateral paresis of the vocal cord of differing durations caused by benign diseases and 25 patients with unilateral paresis caused by malignant tumours in the thorax/mediastinum were treated with Teflon injection of the paretic vocal cord. The results of treatment were evaluated by a speech therapist by voice recording pre-operatively, three weeks post-operatively and at a later control. This evaluation together with self-assessment demonstrated a satisfactory result even the long term result. In 2/3 of the patients good voice function was found at later control. The results indicated that the injection of Teflon is effective and should also be offered to patients with malignant diseases in spite of the poor prognosis quo ad vitam. No serious complications were seen in the post-operative period.
