Palliative and end of life care

Supporting people with palliative and end-of-life care needs “out of hours”: a mixed-methods study of needs, demands and experiences to inform person-centred service developments

Addressing priority 1: Research grant awarded to Professor Scott Murray, University of Edinburgh, in March 2017, by Marie Curie and the Chief Scientist Office Scotland. Read the results (.PDF).

New research to examine role of Rapid Response Services in supporting end-of-life care at home

Addressing priority 1: Academics at Northumbria University are evaluating Rapid Response Services to improve end-of-life care at home in new research funded by Marie Curie.

Ensuring proactive efficient and effective out of hours palliative care provision: examining the role, contribution and impact of the HCA

Addressing priority 1: Research grant awarded to Dr Felicity Hasson, Ulster University, by Marie Curie.

Understanding and improving community-based palliative care outside of normal working hours

Addressing priority 1: Research grant awarded to Professor Richard Harding, Kings College London, and Dr Fliss Murtagh, Hull York Medical School, by Marie Curie.

A study to improve the quality of out of hours palliative care services for end of life patients

Addressing priority 1: One of two joint Royal College of GPs/Marie Curie Palliative Care Research Fellowships. Awarded to Dr Huw Williams, Cardiff University, 1 January 2017 to 30 April 2019.

What circumstances lead out of hours clinicians to arrange hospital admissions for end of life patients? A systematic review of UK evidence

Addressing priority 1: One of two joint Royal College of GPs/Marie Curie Palliative Care Research Fellowships. Awarded to Dr Sarah Hoare, 1 April 2019 to 31 March 2020.

CARer-ADministration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: a UK study (CARiAD)

Addressing priority 1 and 4: NIHR research published Most people want to be cared for and die at home. As people get weaker in the last weeks or days of life, they usually can’t swallow. In the UK, when this happens, it is standard practice for medicines to be given by a drip under the skin to relieve symptoms. If, despite a drip being in place, distressing symptoms still occur, a family member is advised to call a healthcare professional to give the patient an injection under the skin. This can take time. In Australia, family members are trained to give such an injection. This feasibility study aims to find out more about how acceptable and effective this would be in the UK and how feasible a large-scale trial would be.

Electronic Palliative Care Co-ordination Systems (EPaCCS) in end of life care: evaluating their implementation and optimising future service provision

Addressing priorities 3 and 9: NIHR research in progress

This project, in collaboration with NHS England and Public Health England, aims to develop our understanding of EPaCCS by: a) identifying where and how EPaCCS are currently being used in routine care and b) making suggestions as to how these systems can best be integrated within existing/modified ways of working, in order to maximise patient benefit.

Nutrition, hydration and care for people with dementia at the end of life: How can we best support family carers?

Addressing priority 4: Research grant awarded to Dr Nathan Davies, University College London, by Marie Curie

A prospective observation of secretion problems in motor neurone disease (ProSec)

Addressing PSP priorities 6 and 8 from the Top 10: Research grant awarded to Dr Christopher McDermott, University of Sheffield, in March 2017, by Marie Curie and the Motor Neurone Disease Association.

The palliative care needs of people with motor neurone disease (MND) and their informal care givers

Addressing PSP priority 6 from the Top 10 and number 33 from the long list of questions identified: Research grant awarded to Dr Kate Flemming, University of York, in March 2017, by Marie Curie and the Motor Neurone Disease Association.

Enabling tailored and coordinated support for family carers of people with MND through adaptation of a Carer Support Needs Assessment Tool (CSNAT) Intervention

Addressing PSP priorities 4, 8, and 10 from the Top 10 and numbers 36, 37, 42 and 45 from the long list of questions identified: Research grant awarded to Professor Gunn Grande, University of Manchester and Dr Gail Ewing, University of Cambridge, in March 2017, by Marie Curie and the Motor Neurone Disease Association.

Optimum 'Hospice at Home' Services for End of Life Care

Addressing priority 8: NIHR research published Much effort has been invested in health services to support care at home, including services called Hospice at Home (HAH) which aim to offer hospice care in the individual's home. The aim of hospice care is to improve the quality of life of people who have an incurable illness up to the point of death. This includes medical, emotional, social, practical, psychological, and spiritual care, as well as addressing the needs of the person's family and carers. Currently a range of different HAH services exist in the UK and it is unclear which features of these services enable better care and outcomes at the end of life for patients and families. Therefore the research question being asked by this project is: What are the features of Hospice at Home service models that work, for whom, and under what circumstances?

ENeRgy: Exercise and Nutritional Rehabilitation in patients with advanced cancer: a single centre, randomised (1:1), open label, feasibility study of a rehabilitation programme (exercise and nutrition) versus wait list control, in patients with advanced cancer

Addressing PSP numbers 18, 21, and 73 from the long list of questions identified: Research grant awarded to Professor Marie Fallon and Dr Barry Laird, University of Edinburgh, in March 2017, by Marie Curie and the Chief Scientist Office Scotland.

End of life care in care homes: supporting the workforce and reducing hospitalisations

Addressing priority 18: NIHR research in progress

Care homes provide personal care and support to people aged 65 and over, and may also provide nursing care. Residents are often frail and have lots of complex health problems. Despite their needs, residents often don't get access to end of life care from hospice teams, and so may experience unnecessary and distressing symptoms at end of life. Recent work conducted in Australia tested a new way to provide specialist palliative care to care home residents. The new approach is called 'Palliative Care Needs Rounds' (or 'Needs Rounds'). Needs Rounds are monthly staff meetings where up to 8 residents are prioritised for discussion, focusing on those most at risk of dying without an adequate plan in place. This research aims to help our understanding of whether Needs Rounds will work in the UK.

A phase II RCT of topical menthol gel versus placebo in cancer chemotherapy-related peripheral neuropathic pain

Addressing priority 19: Research grant awarded to Professor Marie Fallon, University of Edinburgh, by Marie Curie

Research Assessment Outcome Measures for Malignant Bowel Obstruction

Addressing priority 19: Research grant awarded to Professor Simon Noble, Cardiff University and Dr Jason Boland, Hull York Medical School, by Marie Curie

ACCESSCare II - bereavement outcomes for LGB (lesbian, gay, and bisexual) and heterosexual bereaved partners: a population-based cross sectional mixed methods study

Addressing numbers 47, 48, 49 and 50 from the long list of questions identified: Research grant awarded to Dr Richard Harding and Dr Katherine Bristowe, King’s College London, in March 2017, by Marie Curie.

A parallel group, double-blind, randomised, placebo-controlled trial comparing the effectiveness and cost-consequence and cost effectiveness of low dose oral modified release morphine (MRM) versus placebo on the intensity of worst breathlessness in people with chronic breathlessness.

Addressing priority 20: NIHR research in progress

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

Addressing priority 26: Research grant awarded to Professor Richard Harding and Dr Steve Marshall, Kings College London, by Marie Curie. Read the results.

Development and pilot testing of a web-based decision aid for people with Motor Neurone Disease considering a gastronomy

Addressing priority 28: Research grant awarded to Dr Sally Wheelwright, University of Southampton, by Marie Curie.

The effectiveness in alleviating pain, anxiety and enhancing wellbeing, and the expectations and experiences of palliative care patients of aromatherapy, massage and reflexology: A multi-level synthesis

Addressing number 80 from the long list of questions identified: Research grant awarded to Dr Bridget Candy, University College London, in March 2017, by Marie Curie.

Accessing and delivering person-centred care in advanced non-cancer conditions: developing and testing a Support Needs Approach for Patients (SNAP) with advanced COPD

Addressing PSP priorities 2 and 6 from the Top 10 and number 64 from the long list of questions identified: Research grant awarded to Dr Morag Farquhar, University of East Anglia, in March 2017, by Marie Curie.

A multi-perspective qualitative study to understand the experience and impact of the Child and Young Person’s Advance Care Plan (CYPACP)

Addressing PSP priorities 3 and 4 from the Top 10: Research grant awarded to Dr Karen Shaw, University of Birmingham, in March 2017, by Marie Curie.

A cluster randomised trial of clinically-assisted hydration in patients in the last days of life (CHELsea II study)

Addressing a priority from the long list of questions identified: NIHR research in progress

This study aims to assess whether giving patients in the last days of life fluids via a drip (clinically-assisted hydration) is effective at preventing them from developing delirium / terminal agitation . This problem often occurs at end-of-life, and causes distress to patients (e.g. confusion, restlessness), families, and healthcare professionals.