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

Gardiner, Clare; Barnes, Sarah; Small, Neil; Gott, Merryn; Payne, Sheila; Seamark, David; Halpin, David

doi:10.1177/0269216310367536

Cited by 25 publications

(23 citation statements)

References 20 publications

(23 reference statements)

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“…On the one hand, this might be a source of bias. On the other hand, it is well known that there is poor communication between clinicians and patients about the life-limiting nature of COPD and the terminal prognosis in advanced stages of the disease [42]. As "palliative care needs" are associated with mortality and death, we assume that patients would most probably deny them.…”

Section: Limitationsmentioning

confidence: 99%

Palliative care needs in COPD patients with or without cancer: an epidemiological study

Meffert

Hatami²,

Xander

et al. 2015

Eur Respir J

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Chronic obstructive pulmonary disease (COPD) is a growing cause of morbidity and mortality worldwide. However, many patients with severe COPD do not receive adequate palliative care. The main goals of our study were to identify the percentage of hospital patients with palliative care needs, particularly those who suffer from COPD.Data were collected prospectively from inpatients at the University Medical Centre Freiburg (Freiburg, Germany). Based on the World Health Organization definition of palliative care, the treating physician reported for each patient discharged whether the patient had palliative care needs or not. Data from 39 849 patients could be analysed, of which 1455 were suffering from COPD.Of all COPD patients, 9.1% had palliative care needs. In COPD patients with palliative care needs, hospital stay was significantly longer (13.7 versus 10.3 days) than in the group without palliative care needs, and significantly more patients died during their hospital stay (8.3% versus 3.7%). The presence of metastases was the highest risk factor for developing palliative care needs (OR 4.18). Furthermore, a main diagnosis of COPD implied an increased probability of palliative care needs (OR 1.87).Our results show that COPD patients have a high risk of developing palliative care needs. Further efforts are required to provide palliative care to COPD patients. @ERSpublicationsPatients with COPD as a main diagnosis or a comorbid condition have a high risk of developing palliative care needs

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Section: Limitationsmentioning

confidence: 99%

Palliative care needs in COPD patients with or without cancer: an epidemiological study

Meffert

Hatami²,

Xander

et al. 2015

Eur Respir J

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“…Laws protecting the rights and privacy of the public have led to restrictions on the use of personal data and this has had an impact on research design and, in particular, recruitment [10,13,14]. For instance, the identification of potential research participants is more challenging if researchers are only permitted to approach individuals who formally ‘opt in’ to a study, thereby signalling an active willingness to participate [10].…”

Section: Introductionmentioning

confidence: 99%

Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches

Hunt

Shlomo

Addington‐Hall

2013

BMC Med Res Methodol

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BackgroundAlthough in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an ‘opt-in’ system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an ‘opt-out’ system. The effect of this approach on response and distress is unknown. We sought to investigate this in a survey of end of life care completed by bereaved relatives.MethodsOut of a sample of 1422 bereaved relatives we assigned potential participants to one of two study groups: an ‘opt in’ group (n=711) where a letter of invitation was issued with a reply slip to request a copy of the questionnaire; or an ‘opt out’ group (n=711) where the survey questionnaire was provided alongside the invitation letter. We assessed response and distress between groups.ResultsFrom a sample of 1422, 473 participants returned questionnaires. Response was higher in the ‘opt out’ group than in the ‘opt in’ group (40% compared to 26.4%: χ2 =29.79, p-value<.01), there were no differences in distress or complaints about the survey between groups, and assignment to the ‘opt out’ group was an independent predictor of response (OR=1.84, 95% CI: 1.45-2.34). Moreover, the ‘opt in’ group were more likely to decline to participate (χ2=28.60, p-value<.01) and there was a difference in the pattern of questionnaire responses between study groups.ConclusionGiven that the ‘opt out’ method of recruitment is associated with a higher response than the ‘opt in’ method, seems to have no impact on complaints or distress about the survey, and there are differences in the patterns of responses between groups, the ‘opt out’ method could be recommended as the most efficient way to recruit into surveys, even in those with a sensitive nature.

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“…5,19,20 For example, researchers involved in a recent study conducted with a palliative care population argued that 'the requirements imposed by the ethics committee resulted in a research study where the highest standards of transparency of purpose and informed consent were compromised in the context of a wish to 'do not harm''' ( p. 471). 21 They identified that the heightened degree of protection and sensitivity afforded to palliative care patients can serve as a source of conflict between researchers, ethics committees, and health care practitioners. In a study conducted by Stevens et al 22 the researchers highlight the problems faced by research committees in reviewing palliative care research proposals; risks of harm or breaches of confidentiality and privacy are assumed to be likely to occur unless particular procedures are followed.…”

Section: Introductionmentioning

confidence: 99%

‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research

Bellamy

Gott

Frey

2011

Progress in Palliative Care

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Background: There is a paucity of studies which explore palliative care patients' involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim: To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods: Based on a larger pilot study to examine patients' satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results: The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a 'social death'. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research.

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

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Cited by 25 publications

References 20 publications

Palliative care needs in COPD patients with or without cancer: an epidemiological study

Palliative care needs in COPD patients with or without cancer: an epidemiological study

Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches

‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research

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