Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - Reconciling informed consent and “do no harm”
T2 - ethical challenges in palliative care research and practice in COPD
AU - Gardiner, Clare
AU - Barnes, S
AU - Small, N.
AU - Gott, M.
AU - Payne, Sheila
AU - Halpin, D.
AU - Seamark, D.
PY - 2010/7
Y1 - 2010/7
N2 - The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms ‘palliative care’ and ‘chronic obstructive pulmonary disease’. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients’ ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research.
AB - The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms ‘palliative care’ and ‘chronic obstructive pulmonary disease’. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients’ ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research.
KW - Ethical challenges
KW - informed consent
KW - COPD
U2 - 10.1177/0269216310367536
DO - 10.1177/0269216310367536
M3 - Journal article
VL - 24
SP - 469
EP - 472
JO - Palliative Medicine
JF - Palliative Medicine
SN - 0269-2163
IS - 5
ER -