Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

Palliative Medicine, 2019 33(8) p.1058-1068

de Wolf-Linder, Susanne; Dawkins, Marsha; Wicks; et al

When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. The group recommended the domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

Fulltext available in Palliative Medicine

Quality improvement in hospice settings: perceptions of leaders

International Journal of Health Care Quality Assurance, 2019 32(7) p.1098-1112

Jitendra Singh, Brandi Sillerud, Marah Omar

The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization using qualitative research methodology. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients and can help improve patient satisfaction. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.

Exploring palliative care nursing of patients with pre-existing serious persistent mental illness

Progress in Palliative Care, 2019 27(3) p.117-121

Brown, Russell; Chambers, Shirley; Rosenberg, John

This paper explores the key concepts of palliative care for people with serious and persistent mental illness (SPMI), the challenges present in nursing practice, and the making of end-of-life decisions, in order to consider how comprehensive, person-centred care might be given. Although some improvements have been reported over the past 14 years, this population appears to remain underserved in palliative care. The need for more specialized education for nurses in both palliative care and mental health care, and better communication and collaboration between the two specialties is needed to ensure that these patients receive the same standard of care experienced by the general population.

A palliative care model and conceptual approach suited to clinical malignant haematology

Palliative Medicine, 2019 33(5) p.483-485
Button, Elise; Bolton, Michael; Chan, Raymond J; et al

In this opinion piece the authors discuss a palliative care model and conceptual approach that are well suited to clinical malignant haematology and can lead to best practice palliative and end-of-life care for this unique population.  Palliative care is still integrated from diagnosis and tailored around the individual’s needs, but, in this model, can lead to death and bereavement care or cure and survivorship care. This model demonstrates the evolution of the palliative care model from terminal care to individualised care that is responsive to patients’ needs and unpredictable illness trajectories. 

Fulltext available in Palliative Medicine

Quality indicators for Palliative Day Services: a modified Delphi study.

Palliative Medicine 2019 33(2) p. 197-205
McCorry, Noleen K.; O'Connor, Sean; Leemans, Kathleen, et al

The aim of this study was to develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. The resulting indicators were compiled into a 'toolkit' and tested in five UK Palliative Day Service settings. The result was the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. The authors suggest that these indicators deliver an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.

End of life care: a briefing paper

Institute of Public Policy Research, 2018

This briefing paper provides a brief summary of issues around end of life care, including an overview of evidence regarding the impact of location on quality and cost of care. It analyses the data on location and cost of care in England and how it compares at a national and international level. It also provides an analysis of the policy agenda in the UK and suggests key areas where improvements should be made.

Download from the IPPR website 

Targeted palliative care day therapy interventions using modified MYMOP2 tool can improve outcomes for patients with non-malignant diseases

International Journal of Palliative Nursing; Feb 2018; vol. 24 (no. 2); p. 92-95
Monnery, Daniel; Webb, Esther; Richardson, Lorna; Isaac, Jane; Chapman, Laura

The authors suggest that using the modified MYMOP2 tool to tailor and measure the outcome of holistic day therapy services results in a more sustained improvement for patients with non-malignant disease.

Barriers to palliative care for people with severe mental illness: exploring the views of clinical staff

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 20-25
Jerwood, Jed; Phimister, Diane; Ward, Gillian; Holliday, Nikki; Coad, Jane

The first in a series of articles exploring inequalities in palliative care provision looks at end of life care for people with severe mental health illness.  It considers the challenges and the opportunities for improving high quality, personalised care for all.

Fulltext available in European Journal of Palliative Care (contact library for login details)
Available in print in Arthur Rank Hospice Library, Cambridge

The state of hospice services in England 2014 to 2017

Care Quality Commission, 2017

This report presents the findings from CQC’s initial programme of comprehensive inspections of hospice services.

Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good. However, there is more to be done to make sure that everyone can access high-quality end of life care, as it was noted services to some groups was variable and that the needs of these people were not always considered and understood.

The state of hospice services in England 2014 to 2017 

One year on: the government response to the review of choice in end of life care

Department of Health, 21st September 2017 This report sets out the progress the national end of life care programme board has made in implementing the government’s choice commitment. Access the report here

Quality standard: Care of dying adults in the last days of life

National Institute for Health and Care Excellence, March 2017

This quality standard covers the clinical care of adults (aged 18 and over) who are dying, during the last 2 to 3 days of life. It describes high-quality care in priority areas for improvement.

Importnat note: This quality standard does not cover care before the last few days of life, such as palliative care or ‘end of life care’ (often defined as care during the last year or so of a progressive disease), or care after death. These are included in NICE’s Quality Standard QS13 for end of life care for adults.

Follow this link for fulltext

Psychological ideas in palliative care: attachment theory

European Journal of Palliative Care, 2017, 24 (1) 24-27
Jenny Strachan

This is the first in a series of articles that explores psychological concepts and translates them into practical advice to promote psychologically informed practice for people working in both clinical and non-clinical palliative care roles.  Here, the author suggests that care should be adapted to meet the needs of patients with different attachment styles and that attachment theory should be among the considerations of policy and process development.

Available in print in  the Arthur Rank Hospice Library, Cambridge

Considering the impact of stigma on lesbian, gay and bisexual people receiving palliative and end-of-life care

International Journal of Palliative Nursing, Jul 2016, vol. 22, no. 7, p. 334-340

Chidiac, Claude, Connolly, Michael

Stigma can have a negative effect on health and wellbeing and can influence the type of care received from health and social care professionals, including those working in palliative care. This paper presents a discussion of the impact that stigma has on LGB people who access and receive palliative and end-of-life care.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Consensus norms for palliative care of people with intellectual disabilities in Europe

European Association of Palliative Care: White Paper, April 2015

This White Paper provides guidance on the care of people with intellectual disabilities and includes background information on its development, research evidence, practice examples and further resources.

Click here to access the document

Palliative care outcome measures resource pack launched

May 2015

The Cicely Saunders Institute and Hospice UK have joined forces to launch a new Palliative Care Outcome Measures Resource Pack. “Outcome measures are essential if hospices are to better understand – and be able to demonstrate to others – the positive difference they make for patients and families.” The packs are intended to help hospices and other palliative care teams learn more about outcome measures, and start to introduce a shared set of outcome measures into clinical practice.

Follow this link for the web article

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role

International Journal of Palliative Nursing, Feb 2015, vol. 21, no. 2, p. 87-95

Cameron, Dee, Johnston, Bridget

Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided.

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

The development and evaluation of an oncological palliative care deprescribing guideline: the 'OncPal deprescribing guideline'

Supportive Care in Cancer, January 2015, vol./is. 23/1(71-8)

Lindsay J, Dooley M, Martin J, Fay M, Kearney A, Khatun M, Barras M

Current data suggests that potentially inappropriate medicines (PIMs) are common in palliative cancer patients; however, there is a lack of criteria to assist clinicians in identifying PIMs in these patients.  A guideline to assist in the de-escalation of inappropriate medications was developed from current literature.

How to conduct research in an independent hospice: practical tips and advice

European Journal of Palliative Care, 2014, Vol/iss 21/5 (236-9)

Paul Perkins, Rebecca Day, Julie Hapeshi, Lorraine Dixon and Rudo Nyakuhwa

Hospices, as centres of excellence, have a duty to drive and initiate research if they are to provide high-quality palliative care but they do face a number of challenges. In this paper, the authors use their experience at Sue Ryder to provide some insight into how independent hospices can become active in conducting research.

Full text available in European Journal of Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital

How can you prove that you are delivering good care? Monitoring the quality of palliative care using quality indicators

European Journal of Palliative Care, 2014, Vol/iss 21/5 (228-31)

Joachim Cohen and Kathleen Leemans

Measuring the quality of palliative care in a systematic and valid manner, so that the results can be used to improve care where necessary, remains a challenge. In this article, the authors argue that quality indicators specifically designed for palliative care can address this challenge and illustrate this using an indicator set recently developed in Belgium.

Full text available in European Journal of Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital