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Methods for Researching End of Life Care - Processes of consent

Aims

Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. The Methods for Researching End of Life Care Capacity project (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). Funded by Marie Curie (September 2011-March 2013) Dr Catherine Evans, Principal Investigator

This progressed the project MORECare that developed evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field, focusing on managing missing data and attrition, outcome measurement, ethical issues, mixed methods and health economics. Funder by the Medical Research Council (November 2009-January 2021), Professor Irene Higginson. Principal Investigator

Methods

MORECare built on the Medical Research Council guidance on the development and evaluation of complex interventions. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation.

MORECare Capacity furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert ‘think-tank’ to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement. 

Summary of findings

MORECare Capacity statement

Details 20 solutions to recruit adults lacking capacity nearing the end of life in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings. Please read the full paper here.

MORECare statement

36 best practice solutions to develop and evaluate complex interventions in palliative and EoLC. Please read the full paper here.

Methods Review

MRC guidance on developing and evaluating complex interventions (NIHR School for Social Care Research Methods Review): Application to research on palliative and end of life care. 

Reference: Evans C, Stone K, Manthorpe J, Higginson I (2014) MRC Guidance on Developing and Evaluating Complex Interventions: Application to Research on Palliative and End of Life Care, SSCR Methods Review 15, NIHR School for Social Care Research, London.

Systematic reviews

Further guidance on specific topics

MORECare Elearning

We have developed a short e-learning course based on MORECare research findings. The course registration is now open. Read more

For more information or questions, please contact Hamid Benalia.

We would like to thank the workshop participants for their time and contributions to developing the guidance statement.

Project status: Completed

Principal investigators

EVANS Catherine

Catherine Evans

Professor of Palliative Care

Irene Higginson

Irene J Higginson

Executive Dean, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care

Investigators

Jonathan Koffman

Jonathan Koffman

Reader of Palliative Care

Somerset House East Wing 160x160

Penney Lewis

Professor of Law

Funding

  • Funding body: Marie Curie
  • Amount: -
  • Period: September 2011 - March 2013

Keywords

  • Palliative
  • care
  • terminal
  • care
  • research
  • design
  • methods
  • evaluation
  • ethics
  • decision-making