Measuring, evaluating and improving the quality of care for dying people and their families

The concept of ‘a good death’ is individualised and multi-faceted, yet it is something that impacts us all. The importance of providing high quality care to dying patients and their families has been profoundly highlighted during the COVID-19 pandemic. Poor quality patient care, insufficient communication and being unable to say ‘goodbye’ have negative ramifications for bereaved families’ subsequent grief and mental health.  

Methods for evaluating quality of care for the dying are underdeveloped. Yet, it is only by accurately measuring the current quality of care, we can recognise which areas of care require improvement. Valid, reliable measurement is necessary to facilitate an unbiased assessment of interventions that seek to improve care during this critical period.  

This project aims to place Yorkshire, via the White Rose collaboration, as an international leader in the assessment of quality of care in people (adults and children) who are dying and subsequently enhance bereavement outcomes.  

The objectives of the project are to:  

  1. Establish a collaboration of clinical academics, researchers and patient and carer representatives from across Yorkshire to develop a programme of work on outcomes and novel methods of assessing quality of care in the dying phase.   
  1. Further validate one potential tool, ‘Care Of the Dying Evaluation’ (CODETM) which assesses quality of adult care in the last days of life.   
  1. Explore the scope, validity and suitability of other existing tools for use as an outcome which assesses quality of care for dying people (adults and children).  
  1. Provide opportunities for developing Early Career Researchers within the structure of this network.  
  1. Submit a collaborative NIHR (National Institute for Health Research) funding proposal focused on evaluating care for the dying.  
  1. Leverage existing international collaborations to support development of services focused on improving care for the dying in the context of low and middle-income countries (i.e. India and countries in sub-Saharan Africa). 

Lead Academic at Lead Institution:  
Dr Catriona Mayland – Department of Oncology and Metabolism, University of Sheffield  

Lead academics at other two universities:
Professor Lorna Fraser – Department of Health Sciences, University of York
Dr Lucy Ziegler – Academic Unit of Palliative Care, University of Leeds 

Other staff
Sheffield:  
Dr Sarah Mitchell – Department of Oncology and Metabolism
Dr Paul Taylor – School of Health and Related Research
Dr Clare Gardiner – Health Sciences School
Dr Clara Mukuria – School of Health and Related Research
Dr Anju Devianee Keetharuth – School of Health and Related Research
Dr Phillip Powell – School of Health and Related Research

York:  
Professor Kate Flemming – Professor of Hospice Practice and Evidence Synthesis
Dr Joanne Taylor – Department of Health Sciences

Leeds:  
Dr Matthew Allsopp – Academic Unit of Palliative Care
Professor Mike Bennett – Leeds Institute of Health Sciences

Other partners:
Professor Fliss Murtagh – Hull York Medical School, University of Hull  
Prof Dagny Haugen – University of Bergen, Norway 
Professor Naveen Salins – Manipal, India  
University of Sheffield Palliative Care Studies Advisory Group, facilitated by Dr Clare Gardiner  
Dr Eve Namisango – African Palliative Care Association, Uganda 

Find out more about the White Rose University Consortium




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