Investigation highlights gaps in care for those with life-limiting illnesses

HSIB – 13th July 2023

Palliative and end of life care is ‘variable and inequitable’ across the NHS in England, says our latest report.

The report sets out an investigation we undertook examining the quality and consistency of palliative care provided to adults. Since 2004, and even with a national strategy in place since 2008, numerous publications have highlighted concerns about the limitations of the delivery of palliative and end of life care. These limitations may be more noticeable in areas where funding for services is limited or where care is being delivered across wide geographical areas.

Our investigation offers a system-based lens on the delivery of palliative and end of life care, and why that delivery does not always meet people’s needs or what they should expect to receive.

Read the Report – Variations in the delivery of palliative care services to adults

Improving palliative care for patients with respiratory disease

This case study from NHS England looks at how the Royal Wolverhampton NHS Trust and Compton Care made sure that patients with chronic obstructive pulmonary disease (COPD) who were approaching the end of their life were accessing the services available to them and had the right support to best manage both their condition and emotional wellbeing.

Full detail at NHS England

Improving Palliative Care: The Conversation Project

This project introduced by the Palliative Care Team at the Royal United Hospitals Bath NHS Foundation Trust aims to support the education, development and support for staff to increase the quality of end of life care for patients, families and staff across the Trust |  NHS England | The Atlas of Shared Learning

Nursing leadership in the Palliative Care Team at the Royal United Hospitals Bath NHS Foundation Trust identified that staff had more confidence in supporting patients with palliative and end of life care in the last few days of life compared to the weeks and months prior to a patient dying. This unwarranted variation led to the Palliative Clinical Nurse Specialists initiating a response with ‘The Conversation Project’.

The Conversation Project was developed to support and provide the focus for change that had been identified as needed.

The things that needed to change included:

• An earlier recognition that the patient is approaching the end of their life or is facing an uncertain future;
• To facilitate and raise awareness for the need for earlier conversations with patients and families about their current situations;
• To improve the documentation of those important conversations;
• To include these discussions in the ward multidisciplinary team (MDT) meetings to support a shared involvement and understanding of the needs of the patient and family;
• To improve the transfer of information pertaining to a patient’s end of life on discharge or transfer of care;
• To bring about a cultural shift in how their hospital recognised and engaged in the care of the dying;
• To ‘normalise’ end of life conversations and to help staff recognise that anyone of us could be with patients when they wish to discuss their fears and wishes as their condition deteriorates.

Full detail about the project at NHS England

Tackling inequalities in end of life care

Access to hospice and other forms of expert palliative and end of life care is currently inequitable. Hospice UK is working to tackle this inequality and widen access to hospice and palliative care | via Hospice UK

A recent review into end of life care in England by the Care Quality Commission found that some groups experience poorer quality care because their specific needs are not always fully understood or considered. These groups include:

• Certain faith groups;
• Gypsies and Travellers;
• LGBT people;
• People experiencing homelessness and prisoners.

Image source: http://www.hospiceuk.org

Hospice UK along with Marie Curie, Together for Short Lives and others, have produced a resource outlining work in progress to improve personalised end of life care for Gypsies and Travellers, LGBT people and people experiencing homelessness.

Offering top tips and describing simple effective approaches for success, this practical guide is intended for commissioners, service providers and those involved in caring for and supporting children, young people and adults living with advanced illness towards the end of their lives.

Full document: Care committed to me.  Delivering high quality, personalised palliative and end of life care for Gypsies and Travellers, LGBT people and people experiencing homelessness. A resource for commissioners, service providers and health, care and support staff. 

End of life care

End of life care in England: a briefing paper | IPPR

Image source: http://www.ippr.org

This paper provides a brief summary of issues around end of life care including the impact of location on the quality and cost of care; analyses data on the current location and cost of end of life care in England; and appraises the current policy agenda in this area, suggesting key areas where improvements should be made.

Full briefing: End of life care in England: a briefing paper

 

End of life care collaborative

NHS Improvement have published information about the End of life care collaborative.  They ran a 150-day programme, involving 16 volunteer trusts, to improve end of life care across a number of settings to improve the experience and quality of care received by patients at end of life.  They have published the following case studies:

• Chesterfield Royal Hospital NHS FT
• Sheffield Teaching Hospitals NHS FT
• Rotherham NHS FT
• Hillingdon Hospitals NHS FT
• St George’s University NHS Trust
• Cumbria Partnership NHS FT
• Colchester Hospital University NHS FT

 

Choice in end of life care

How the National End of Life Care Programme Board is delivering personalisation and choice in care for people at or near the end of life. | Department of Health

This report sets out the progress the National End of Life Care Programme Board has made in implementing the government’s choice commitment.

The measures include:

• supporting the roll-out of digital palliative and end of life care records to all areas by 2020
• inspecting and rating NHS hospital and community services for end of life care
• providing support to trusts to help them improve end of life care services
• testing personal health budgets for people approaching the end of life to give them choice and control over their care
• developing metrics to assess quality and experience in end of life care
• working to change the nursing and medical undergraduate and postgraduate curricula to improve patient choice and quality of care

Full report: One Year On: The Government Response to the Review of Choice in End of Life Care

End of life care for people who have a learning disability

This guidance document provide resources and tips for commissioners, service providers and health and social care staff providing, or delivering care to people with a learning disability at the end of their lives. | NHS England

The resource provides a number of ‘ambitions’ regarding end of life care for people who have a learning disability, and contains ‘top tips’, resources and good practice examples to support the achievement of each ambition.

Full document: Delivering high quality end of life care for people who have a learning disability: Resources and tips for commissioners, service providers and health and social care staff.

Improving hospital-based end of life care processes and outcomes

A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings | BMC Palliative Care

A total of 416 papers met eligibility criteria. The number increased by 13% each year (p < 0.001). Most studies were descriptive (n = 351, 85%), with fewer measurement (n = 17) and intervention studies (n = 48; 10%). Only 18 intervention studies (4%) met EPOC design criteria. Most reported benefits for end-of-life processes including end-of-life discussions and documentation (9/11). Impact on end-of-life outcomes was mixed, with some benefit for psychosocial distress, satisfaction and concordance in care (3/7).

More methodologically robust studies are needed to evaluate the impact of interventions on end-of-life processes, including whether changes in processes translate to improved end-of-life outcomes. Interventions which target both the patient and substitute decision maker in an effort to achieve these changes would be beneficial.

Full reference: Waller, A. et al. (2017) Improving hospital-based end of life care processes and outcomes: a systematic review of research output, quality and effectiveness. BMC Palliative Care. Published: 19 May 2017

New go-to website for resources and learning in palliative and end of life care

Nicola Spencer introduces the enhanced Ambitions for Palliative and End of Life Care website which will be the new go-to place for resources and learning | NHS England

Struggling to keep up to date and informed on changes impacting on palliative and end of life care? Not sure where to find the latest resources and improvement examples?

Then you will be pleased to hear we have launched a tailor made national End of Life Care (EoLC) Knowledge Hub providing you with a ‘one stop shop’ of palliative and EoLC information.

This hub provides anyone involved in the commissioning or provision of palliative and end of life care with a quick and easy way to source information, including helpful tools and resources to drive delivery of the Ambitions for Palliative and End of Life Care – a national framework for local action.

Read the full overview here

Find the website here