HSIB: Variations in the delivery of palliative care services to adults (13 July 2023)

Summary

Health and care services in England are not always able to provide individualised, equitable and coordinated palliative and end of life care (PEoLC) to meet the holistic needs of people and their families.

To understand the impact of inconsistent palliative care, the Healthcare Safety Investigation Branch (HSIB) looked at the case of Dermot, a 77-year-old cancer patient. Dermot's case shows the gap between what is needed and what is available.

HSIB make three safety recommendations to NHS England aimed at improving the delivery of palliative and end of life care.

Content

The reference event

Dermot was 77 years old and lived at home with his wife. He had been diagnosed with a myxofibrosarcoma (cancer of the soft tissues) in his armpit. Following surgery and radiotherapy, which were hoped would cure the cancer, the cancer returned and was found to have spread to other parts of his body. It was no longer possible to cure Dermot’s cancer and so he was referred to specialist palliative care services.

Dermot initially received specialist palliative care at home from a team of specialist nurses. An assessment of his needs identified his main issues as nausea, anxiety, insomnia, and constipation. The assessment also resulted in a referral to a support organisation for Dermot’s wife, but the referral did not progress and so support was not provided.

During the 9 days following his assessment, Dermot’s health deteriorated, and it was not possible to control his symptoms at home. He was admitted for inpatient specialist palliative care at his local community hospital. The aim of the admission was to manage Dermot’s symptoms and then discharge him home. However, his health rapidly deteriorated and he remained at the community hospital until the end of his life. Two days before Dermot died, his consciousness level decreased, and he became more settled and free of pain.

Findings

• Health and care services in England are not always able to provide individualised, equitable and co-ordinated PEoLC to meet the holistic needs of people and their families. They are unable to consistently provide what people have been led to expect from PEoLC.
• Holistic assessments for PEoLC may focus on physical care needs, with more limited attention to identifying, understanding and addressing other care needs, particularly psychological needs.
• The availability of PEoLC across England is variable and inequitable. This is influenced by the location of third-sector organisations, available charitable donations and NHS commissioning, and workforce shortages. There is no stated minimum standard for PEoLC that all people must be able to access.
• There is limited information to help the public and health and care staff to identify, access, and understand the roles of different aspects of PEoLC, with variation in words and definitions.
• PEoLC services are not always able to proactively plan care for people whose condition will deteriorate because of limited inpatient PEoLC and the unpredictability of some diagnoses.
• There is limited, specific guidance to support integrated care boards to identify the PEoLC needs of their populations in line with the expectations of the Health and Care Act 2022, and what could/should be done to address those needs.
• There is limited support available for health and care professionals to have honest conversations with people around death and what to expect, and to plan for the end of life.

HSIB recommendations

1. HSIB recommends that NHS England specifies a palliative and end of life care data set to help integrated care boards to understand their populations’ demographics and needs, in order to support commissioning and improvement of services.
2. HSIB recommends that NHS England develops and promotes a minimum expected service specification for specialist palliative care in England to clarify the minimum services a person can expect to be available to them no matter where they live.
3. HSIB recommends that NHS England commissions palliative and end of life care career pathways, ensuring that they include staff from the allied health professions, in order to build specialist workforce capacity.

Safety actions

HSIB suggests the following actions for integrated care boards:

• Identify and describe the palliative and end of life care services in their areas through engagement with integrated care partnerships and third-sector organisations. This is to provide the public and health and care professionals with accessible and accurate information about available services.
• Support collaboration between health and care organisations to define clear routes of support for people in and out of normal working hours to ensure they know how to access help for palliative care and end of life needs.
• Work with integrated care partnerships to account for capacity and resource in social care when planning palliative and end of life care services.
• Support collaboration between health and care organisations, including those in the voluntary and charitable sectors, to encourage more open discussions about death and dying in their local communities, accounting for their population demographics.
• Include palliative and end of life care in strategic workforce plans to ensure staffing of services is appropriately capable and can provide the capacity needed to meet demand.

Further reading on the hub;

Sarcoma UK: Family insights from Dermot’s experience (reflections on the HSIB report)