Palliative and end of life care is "variable and inequitable" across the NHS in England, and the agency is unable to consistently provide what people have been led to expect, according to a new report from the Healthcare Safety Investigation Branch (HSIB).
Its inquiry aimed to "improve the experiences" of people accessing palliative and end of life care services in England, explained a spokesperson for the organisation. "National publications have described what people should be able to expect from palliative and end of life care, but they have also highlighted continued concerns about the delivery of services in England."
"Our national investigation findings echo those seen in national publications since 2004," HSIB national investigator Nick Woodier said in a press release. "Standards of holistic palliative and end of life care often fall below expectations and there has been limited progress in improvement."
Using the clinical case of a 77-year-old patient diagnosed with myxofibrosarcoma who required palliative care after his cancer returned after surgery and radiotherapy, HSIB investigators explored the delivery of palliative and end of life care in England. They emphasised that due to the scope of the investigation, the focus was on the palliative and end of life care components of the patient's care and not the diagnosis and treatment of his sarcoma.
The patient initially received specialist palliative care at home, but during the 9 days after assessment, his health deteriorated and his care team deemed it necessary for him to have his symptoms managed as an inpatient in the local community hospital, with a view to him returning home again. However, his health rapidly deteriorated and he remained at the community hospital until the end of his life.
Health and Care Services Inadequate
The investigation found that the patient's holistic care needs, and those of his family, were "not always met" by the services available to them. This seemed to be representative of the findings of the national investigation, that "individualised, equitable, and co-ordinated" palliative and end of life care were not consistently available.
"We know that one in four people dies without the care and support they need," Ruth Driscoll, associate director policy and public affairs at Marie Curie, commented in an email to Medscape News UK. She was not involved in the investigation.
The availability of palliative and end of life care across England was "variable and inequitable", the HSIB warns in its report, and points out that there is "no stated minimum standard" for palliative and end of life care that all people must be able to access.
Assessments for palliative and end of life care tended to focus more on physical care needs, the HSIB investigation found, but less attention was paid to identifying, understanding, and addressing other care needs, particularly psychological needs.
Earlier this month, a prospective UK-wide evaluation of the care provided to people dying in hospital without specialist palliative and end-of-life care input found that most patients dying in hospitals had unmet needs, and that even for the 57% of patients with an end-of-life care plan, this was "not enough to independently guarantee the provision of holistic care".
The HSIB investigation also found:
- Limited information to help the public and health and care staff to identify, access, and understand the roles of different aspects of palliative and end of life care, with variation in words and definitions
- Palliative and end of life care services are not always able to proactively plan care for people whose condition will deteriorate because of limited inpatient palliative and end of life care and the unpredictability of some diagnoses
- Limited, specific guidance available to support integrated care boards to identify the palliative and end of life care needs of their populations
- Limited support available for health and care professionals to have honest conversations with people around what to expect and how to plan for the end of life
Mr Woodier acknowledged that conversations about death and end of life care were "challenging and emotive", but emphasised how it was "crucial" that health and care professionals could discuss the needs and expectations with their patients and families.
The HSIB made a number of safety recommendations to NHS England, aimed at improving the delivery of palliative and end of life care. These focused on developing data sets to support understanding by integrated care boards (ICBs) of their demographic need, developing minimum expected service levels regardless of where patients live in the country, and building a workforce with specialist capacity.
ICBs were also provided with recommendations by the HSIB. These included identifying and describing the palliative and end of life care services available in their areas to provide the public and health and care professionals with accessible and accurate information about available services, and 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.
"Our investigation has highlighted an urgent gap and has shown where more can be done to ensure those at the end of their life are given holistic, consistent, and compassionate care," Mr Woodier declared.
"We recognise that provision of palliative and end of life care is complex, with multiple organisations involved," he stressed, adding that the need for high standards of palliative care would "only increase" as the population grows and people live longer.
"The Government must act urgently and radically to ensure that dying people are able to access safe and high-quality care on a 24/7 basis," commented Ms Driscoll. "Otherwise, by the time the NHS turns 100, it will be overwhelmed," she warned.