Literature DB >> 12881261

Novel consent process for research in dying patients unable to give consent.

Elizabeth Rees1, Janet Hardy.   

Abstract

OBJECTIVES: To develop a process of advance consent to enable research to be undertaken in patients in the terminal phase.
DESIGN: Feasibility study of an advance consent process to support a randomised controlled trial of two antimuscarinic drugs (hyoscine hydrobromide and glycopyrronium bromide) in the management of noisy respirations associated with retained secretions ("death rattle").
SETTING: Palliative care wards in a major cancer centre. PARTICIPANTS: Patients admitted to a palliative care ward who may develop "death rattle" and thus be eligible for randomisation. MAIN OUTCOME MEASURES: Patient accrual; acceptability of the consent process.
RESULTS: Of the 107 patients approached, 58 patients gave advance consent to participate in the study. Of these, 15 patients developed death rattle and were randomised to receive either hyoscine or glycopyrronium; 16 patients died elsewhere; 15 patients died on the palliative care wards but were not randomised; 12 patients are still alive.
CONCLUSIONS: Initial assessment suggests that this is a workable consent process allowing research to be undertaken in patients who are unable to give consent at the time of randomisation. Patient accrual rates to date are lower than needed to recruit adequate numbers in the time allotted to answer the research question.

Entities:  

Keywords:  Biomedical and Behavioral Research; Death and Euthanasia; Empirical Approach

Mesh:

Substances:

Year:  2003        PMID: 12881261      PMCID: PMC166125          DOI: 10.1136/bmj.327.7408.198

Source DB:  PubMed          Journal:  BMJ        ISSN: 0959-8138


  12 in total

Review 1.  Why are trials in palliative care so difficult?

Authors:  G E Grande; C J Todd
Journal:  Palliat Med       Date:  2000-01       Impact factor: 4.762

2.  Consent for trials in palliative care.

Authors:  J Hardy
Journal:  Lancet       Date:  2000-12       Impact factor: 79.321

3.  Using anti-muscarinic drugs in the management of death rattle: evidence-based guidelines for palliative care.

Authors:  Mike Bennett; Viv Lucas; Mary Brennan; Andrew Hughes; Valerie O'Donnell; Bee Wee
Journal:  Palliat Med       Date:  2002-09       Impact factor: 4.762

4.  Clinical issues on consent: some philosophical concerns.

Authors:  R Worthington
Journal:  J Med Ethics       Date:  2002-12       Impact factor: 2.903

Review 5.  Placebo-controlled trials in palliative care: the argument for.

Authors:  J R Hardy
Journal:  Palliat Med       Date:  1997-09       Impact factor: 4.762

6.  Informed consent: the intricacies.

Authors:  R Smith
Journal:  BMJ       Date:  1997-04-12

7.  What influences participation in clinical trials in palliative care in a cancer centre?

Authors:  J Ling; E Rees; J Hardy
Journal:  Eur J Cancer       Date:  2000-03       Impact factor: 9.162

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Authors:  C M Olson
Journal:  JAMA       Date:  1994-05-11       Impact factor: 56.272

Review 9.  Informed consent in emergency research. Consensus statement from the Coalition Conference of Acute Resuscitation and Critical Care Researchers.

Authors:  M H Biros; R J Lewis; C M Olson; J W Runge; R O Cummins; N Fost
Journal:  JAMA       Date:  1995-04-26       Impact factor: 56.272

10.  Acting without asking: an ethical analysis of the Food and Drug Administration waiver of informed consent for emergency research.

Authors:  J G Adams; J Wegener
Journal:  Ann Emerg Med       Date:  1999-02       Impact factor: 5.721

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  10 in total

1.  Patient centred death.

Authors:  Jocalyn Clark
Journal:  BMJ       Date:  2003-07-26

Review 2.  Ethical challenges and solutions regarding delirium studies in palliative care.

Authors:  Lisa Sweet; Dimitrios Adamis; David J Meagher; Daniel Davis; David C Currow; Shirley H Bush; Christopher Barnes; Michael Hartwick; Meera Agar; Jessica Simon; William Breitbart; Neil MacDonald; Peter G Lawlor
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3.  On Power and Freedom: Extending the Definition of Coercion.

Authors:  Sonia M Goltz
Journal:  Perspect Behav Sci       Date:  2020-01-06

4.  Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement).

Authors:  C J Evans; E Yorganci; P Lewis; J Koffman; K Stone; I Tunnard; B Wee; W Bernal; M Hotopf; I J Higginson
Journal:  BMC Med       Date:  2020-07-22       Impact factor: 8.775

Review 5.  Medically assisted hydration for adult palliative care patients.

Authors:  Phillip Good; Russell Richard; William Syrmis; Sue Jenkins-Marsh; Jane Stephens
Journal:  Cochrane Database Syst Rev       Date:  2014-04-23

6.  Quality of transition to end-of-life care for cancer patients in the intensive care unit.

Authors:  Sophie J Miller; Nishita Desai; Natalie Pattison; Joanne M Droney; Angela King; Paul Farquhar-Smith; Pascale C Gruber
Journal:  Ann Intensive Care       Date:  2015-07-25       Impact factor: 6.925

7.  Alternative forms of hydration in patients with cancer in the last days of life: study protocol for a randomised controlled trial.

Authors:  Andrew Davies; Melanie Waghorn; Julia Boyle; Ann Gallagher; Sigurd Johnsen
Journal:  Trials       Date:  2015-10-14       Impact factor: 2.279

8.  Scopolaminebutyl given prophylactically for death rattle: study protocol of a randomized double-blind placebo-controlled trial in a frail patient population (the SILENCE study).

Authors:  Harriëtte J van Esch; Lia van Zuylen; Esther Oomen-de Hoop; Agnes van der Heide; Carin C D van der Rijt
Journal:  BMC Palliat Care       Date:  2018-09-07       Impact factor: 3.234

9.  Consent, including advanced consent, of older adults to research in care homes: a qualitative study of stakeholders' views in South Wales.

Authors:  Fiona Wood; Hayley Prout; Antony Bayer; Donna Duncan; Jacqueline Nuttall; Kerenza Hood; Christopher C Butler
Journal:  Trials       Date:  2013-08-09       Impact factor: 2.279

10.  Collecting biological material from palliative care patients in the last weeks of life: a feasibility study.

Authors:  Séamus Coyle; Aileen Scott; Amara Callistus Nwosu; Richard Latten; James Wilson; Catriona R Mayland; Stephen Mason; Chris Probert; John Ellershaw
Journal:  BMJ Open       Date:  2016-11-10       Impact factor: 2.692

  10 in total

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