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MORECare Capacity – Methods for Researching End of Life care; processes of consent for adults lacking capacity

* Funded by Marie Curie Cancer Care UK

‘Best practice’ to include adults lacking capacity in research on palliative and end of life care

Latest News: July 2014 - We have secured a King’s Undergraduate Research Fellowship and appointed an undergraduate law student, Frances Carpenter, to work with us to pursue our findings on legislative frameworks and the participation of adults lacking capacity in research. This work is led by Professor Penney Lewis, KCL with Dr Catherine Evans, KCL and Dr Marjolein Gysels, KCL asking ‘Research in palliative and end-of-life care in England and Wales: Is the legal framework fit for purpose?’

The evidence base for palliative and EoLC is limited with few trials of interventions or services. Patients with palliative needs commonly experience deterioration in their level of capacity associated with, for example, disease progression and nearness to death. Inclusion of these patients in research on treatments and interventions for palliative care is vital to identify best clinical practice and cost-effectiveness. The MORECare Capacity project aimed to identify, appraise and synthesise ‘best practice’ methods to determine how best to include individuals near to death with limited, fluctuating, diminishing or lack of capacity in research on end-of-life care (EoLC). The project was funded by Marie Curie Cancer Care for nineteen months and jointly led by Dr Catherine Evans (KCL) and Professor Irene Higginson (KCL). The project addressed specific challenges on process of consent for adults lacking capacity in research on palliative and end of life care. The work built on the research study MORECare – Methods of Researching End of Life Care (funder MRC/NIHR)

MORECare Capacity followed the research methods of MORECare. A systematic literature appraisal on research studies involving adults lacking capacity to identify challenges and solutions is in progress. We also conducted a stakeholder consultation to develop recommendations and consensus on the solutions emerging from the literature involving consensus methods of nominal group and online voting, and finally an expert ‘think-tank’ to critically consider the developing methods guidance, particularly focussing on areas of contention/uncertainty.

We are synthesising findings to develop Methods Guidance on Processes of Consent for Adults Lacking Capacity. This will form an addendum to the MORECare Statement on best practice solutions and guidance on undertaking evaluative research on palliative and end of life care

The Methods Guidance addendum will detail best practice on process of consent for adults with impaired capacity in research on palliative and end of life care. The addendum is intended to support the design and execution of research in areas involving ‘vulnerable’ people. The addendum will detail the complexities associated with involving ‘vulnerable adults in research studies and addressing specific challenges in this area to further the MOREcare Statement. This review serves as a resource for people who wish to promote robust research and to facilitate social care practitioners’ engagement with evidence based service improvements.

Publications

Evans CJ, Stone KA, Manthorpe J and Higginson IJ. (2013) NIHR School of Social Care Research Methods Review MRC Guidance Developing and Evaluating Complex Interventions: Application to research on palliative and end of life care. Method review 15. London: NIHR School of Social Care Research, London School of Economics and Political Sciences

Oral conference papers
  • Evans CJ, invited speaker on behalf of MORECare Capacity ‘I can’t tell you I want to participate” ; mental capacity and the processes of consent in research on end of life care’, Marie Curie Cancer Care and the Palliative Care Section of the Royal Society of Medicine meeting, 22nd March 2013 Curie
  • Gysels M, Evans CJ, Lewis P, Speck P, Benali H, Preston N, Grande G, Short V, Owen-Jones E, Todd C, Higginson IJ. on behalf of MORECare (2013). “Obtaining and maintaining consent for research participation from patients with impaired capacity: Best practice recommendations from the MORECare consultation workshop on ethical issues in palliative care research”, Alzheimer Europe Conference, Malta, 11th October 2013
Conference poster presentations
  • Stone K, Evans CJ on behalf of MORECare Capacity, Mental capacity and processes of consent for research on end-of-life care (EoLC); part of the MORECare project. EAPC 2013 1
  • Stone K, Evans CJ on behalf of MORECare Capacity, Mental capacity and processes of consent for research on end-of-life care (EoLC); part of the MORECare project. Marie Curie Conference 22nd March 2013
  • Evans CJ, Stone K, on behalf of MORECare Capacity, Mental capacity and processes of consent for research on end-of-life care (EoLC); part of the MORECare project, International Collaboration for Community Health Nursing Research, 13th March 2013, University of Edinburgh, Edinburgh
Plaudits

From Mr Luis Juste, Director of Santander Universities UK sent to Professor Sir Rick Trainor, Principle and President of King’s College London, date 25th October 2011, stating:

Reading the latest issue of the Times Higher Education magazine I came across really good news for King’s College London and I would like to congratulate you as one of your investigators has received an award from the Marie Curie Cancer Care Research Programme:

- Catherine Evans for her study on mental capacity and processes of informed consent for research on end-of-life care.

This is an important achievement for your institution and shows why King’s College London is renowned worldwide for excellence in education and research.

MORECare Capacity stakeholder workshop December 2012

The workshop aimed to identify best practice recommendations on enabling those with compromised capacity to become involved in EoLC research. 39 participants attended the workshop with representatives from palliative research and clinical practice, ethicists, policy makers, voluntary sector representatives and lay members. The workshop focused on three main areas identified from the systematic literature appraisal as contentious/uncertain comprising:

  1. time, consent and research
  2. proxies and supportive decision making
  3. ethics, resources and expertise

Analysis of the workshop findings generated 29 recommendations on ‘best practice’. We used a two round Delphi involving the workshop attendees, project members and lay members unable to attend the workshop to form a consensus on the priority of the recommendations and identify equivocal areas.

Presentations from the workshop are available below:

MORECare Capacity expert ‘think-tank’ 4th October 2014

The expert think-tank aimed to debate and identify solutions for three main areas identified as equivocal or uncertain from the Delphi survey, comprising:

  1. The involvement of consultees in the consent process
  2. Practitioner training and education; the challenges and solutions
  3. Legislative frameworks; incorporation into practice and limitations.

19 experts attended the workshop, including researchers, clinicians, voluntary sector representatives and lay members. The theme of consultees as the central component pervaded the three areas. Discussion centered on identification, engagement, support and research costs; and education and training for practitioners both on the role of consultees, engagement and processes of assent, and interpretation and application of the legislative frameworks, notably the Mental Capacity Act. The experts debated and agreed top solutions for each area. These will be detailed and critical considered in the publication of the MORECare Capacity addendum.

Presentations from the workshop are available below:

Acknowledgements

MORECare was funded by Marie Curie Cancer Care. MORECare aimed to identify, appraise and synthesise ‘best practice’ methods to determine how best to include individuals near to death with limited, fluctuating, diminishing or lack of capacity in research on end-of-life care (EoLC).

Principal investigator: Catherine J Evans

Co-principal investigator: Irene J Higginson.

The members of MORECare Capacity are:

  • Co-investigators
    • Matthew Hotpf
    • Jonathan Koffman
    • Penney Lewis
    • Bee Wee
    • William Bernal
  • Lay member: Deborah Tanner
  • Project advisory group
    • Gunn Grande
    • Steve Dewar
    • Gareth Owen
    • Claire Henry
    • Rachel Burman
    • Dimitrios Adamis
    • Michael Dunn
    • Scott Kim
    • Simon Woods
  • Researchers
    • Rowena Vohora
    • Katie A Stone
    • Marjolein Gysels.

Reference List

Stone K, Hotopf M, Koffman J, et al. MORECARE CAPACITY: MENTAL CAPACITY AND PROCESSES OF CONSENT FOR RESEARCH ON END-OF-LIFE CARE. BMJ Supportive & Palliative Care 2013; 3(1): 128.

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