A better understanding of risks and causes of harm for out of hours palliative care is urgently needed to ensure patient safety, a study 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 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.”
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.
Commenting on the study, Carole Walford, Chief Clinical Officer at Hospice UK, said:
“It is a real concern that people approaching the end of life are not able to get the round-the-clock care they need.
“It is not acceptable that palliative care grinds to a halt out of hours. This creates unnecessary worry and distress for patients and their families. It puts more pressure on our overstretched health service as more people are forced to seek support in hospitals out of hours when they could receive more appropriate care in other settings.
“Hospices are working with hospitals and care homes to help ensure more integrated working between care providers to ensure that vital care is available to more people whenever they need it and in a place of their choice.”