Improvements needed to out of hours palliative care

28 January 2019

A better understanding of risks and causes of harm for out of hours palliative care is needed to ensure patient safety, a study conducted by the patient safety team at PRIME and funded by terminal illness charity Marie Curie and the RCGP has found. 

Out of hours care refers to care needed by anyone – not only those with palliative care needs - between 6.30pm and 8am Monday to Friday, on weekends and during bank holidays.  Out of hours palliative care is for people with a terminal illness who have end of life care and support needs. 

With General Practice looking after an ageing population with increasingly complex care needs, it is vital to have good palliative care support for patients and their families, out of hours in people’s homes.

People at the end of their lives can suffer from symptoms that need treating such as extreme pain and agitation. Out of hours palliative care for many, can quickly relieve unnecessary suffering for people in their home, who would otherwise they have no choice but to have an unwanted trip to A&E, which can often be a distressing experience for the patient and their family. 

Out of hours care covers two-thirds of the week, with as many as 30 per cent of patients using an out of hours service in the last days of life.  However, the majority of resources go to in-hours services, with fewer staff, services and less funding for out of hours care.

The new research, published in the Palliative Medicine journal and led by Dr Huw Williams, has revealed four key areas of concern and where more can be done to improve the care provided.

Conducted by analysing data from the National Reporting and Learning System over a five year period, the research found that among the 1,072 cases studied, the four main issues requiring improvement were errors in medication provision; securing access to timely care; inefficient transfer of information between healthcare teams; and, problems with non-medication based treatments like urinary catheters and nasogastric tubes (feeding tubes).

In the study, almost two-thirds (n=695, 64.8%) of the patient safety incidents described “actual harm” to patients, with reports citing emotional and psychological distress to patients, families and carers.  These incidents of “harm” included errors in prescribing, dispensing or administering of medications or delays in access to timely care or advice.

Serious harm (moderate harm or worse), highlighted more serious consequences in 129 (12%) of the cases studied, such as hospital admission and untimely death. 

The majority of incidents reported were medication-related.

Dr Williams, an Honorary Research Fellow at the Patient Safety (PISA) Research Group in the School of Medicine, Cardiff University and practicing GP in Cardiff, said safety surrounding this group of patients needs to be thought about far more regularly.

“You only get one chance to get people’s last days of life right, this is an opportunity to make that experience better for people,” he said. 

“This can happen through better planning during in-hours care to make medications more easily accessible when they are needed – while being mindful that controlled drugs do need restrictions in place. Safe access to medications and treatments, more timely care at the end of life and information transfer across care boundaries should be the focus of future improvement initiatives.”

Simon Jones, Director of Policy and Public Affairs at Marie Curie, said the findings were just the tip of the iceberg, and added: “We know that the lack of care and support available out of hours is a huge issue across the UK.  This is a segment of the health service that has been often overlooked and has not connected well enough with the emergency services, which operate 24/7.  The reality is people don’t stop needing care after 6.30pm – they can’t switch their condition on and off depending on what time their GP, pharmacist or district nurse is available. This is why we’re seeing an increasing need for services like the Marie Curie Nursing Service, which gives people living with a terminal illness, and their families, access to vital nursing care at home, through the night and on weekends and bank holidays when other services are often not available. More focus needs to be placed on what care and support is available out of hours, so people can access the right care they need at home to avoid unnecessary hospital admissions and reduce the pressure on an already over-worked emergency service.”

Andrew Wilson-Mouasher, divisional general manager for Marie Curie in Wales, welcomed the findings and added: “Research like this allows us to open up conversations with other healthcare providers and also with patients and families themselves, to allow better planning for end of life care.

“The final days of someone’s life can be difficult enough, without having to navigate complex routes to get the correct medication, or care and support in a timely manner, and continuing to have these conversations can help avoid further distress.”

Dr Catherine Millington-Sanders, Clinical Lead for End of Life Care for the Royal College of GPs and Marie Curie, said: “Patients at or nearing the end of their lives are incredibly vulnerable, and they need and deserve the best possible, safe care around the clock. This is important research that highlights the urgent need for more investment into delivering palliative care out of hours in the community and to support better joined up care right across the NHS, social, community and third sector care." 

In 2015, the number one concern among palliative care professionals and carers was finding the best way of providing support out of hours to avoid crises, and help patients stay in their place of choice – be that at home, in a hospice or a care home.*

Read the full publication:

Williams H, Donaldson SL, Noble S, Hibbert P, Watson R, Kenkre J, Edwards A, Carson-Stevens A. (2018). Quality improvement priorities for safer out-of-hours palliative care: Lessons from a mixed-methods analysis of a national incident-reporting database. Palliative Medicine.