Are special ethical guidelines needed for palliative care research?

Title

Are special ethical guidelines needed for palliative care research?

Creator

Casarett DJ; Karlawish J

Publisher

Journal Of Pain And Symptom Management

Date

2000

Subject

Humans; Guidelines as Topic; Research; Ethics; Medical; Death and Euthanasia; Palliative Care/standards; Biomedical and Behavioral Research; Multi-site Ethics

Description

Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients.
2000

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

130-139

Issue

2

Volume

20

Citation

Casarett DJ; Karlawish J, “Are special ethical guidelines needed for palliative care research?,” Pediatric Palliative Care Library, accessed September 23, 2021, https://pedpalascnetlibrary.omeka.net/items/show/12208.

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