Marie Curie and the University of Glasgow are calling for action to improve the care and experience of dying people in hospitals. 

Following a series of seminars with leading experts undertaken before the coronavirus pandemic, the organisations found that despite examples of good care, many hospitals are still not identifying enough patients who could benefit from palliative care, and who are unfairly missing out on the right care at the end of life. With hospital services under pressure due to coronavirus this situation is likely to have worsened over the last six months.

With the Scottish Government’s Strategic Framework for Action running to 2021, Marie Curie and the University of Glasgow have offered 12 themed recommendations for consideration by the next Scottish Government, NHS Boards and Integration Authorities.

Maria McGill former CHAS Chief Executive supports the recommendations as her father was cared for in hospital prior to dying at home from heart failure and did not receive any palliative care.

She shares: “Dad was admitted to hospital through the emergency department via 999 ambulance twice in 10 months. There were missed opportunities. Had conversations been started with him, and importantly including mum and me, instead of the rush to discharge him two weeks later, the second admission might have been avoided and they would have both been in a better position to understand what was happening to dad.

“Early discharge planning and engagement with community services is key, but those conversations should involve the family. Our experience was that dad was told he was being discharged and we weren’t involved in the discussion.

“Staff in all settings having the ability to listen, really listen, and I really do understand that for some staff this might cause them anxiety about what they might hear, that they might not know what to do, or have the time to do anything. However, it is so important this opportunity isn’t missed. Even during that second admission 8 weeks before dad died – there wasn’t a recognition of dad’s deterioration.”

Marie Curie and the University of Glasgow are also calling for the Scottish Government to set aside £15 million for a nationwide Change and Innovation Fund to test new models of integrated care involving acute settings. This could help ensure patients get better care, but also improve efficiencies in care across community and hospital settings.

Marie Curie Head of Policy and Public Affairs Scotland Richard Meade said: “Hospitals are absolutely the right place for some dying people to be, but we need definitive action to ensure people get the care they need when in a hospital. More and more people are likely to present with multi-morbidity and complex needs and by 2040 it is expected that up to 31,000 people could be dying in a Scottish hospital.

“While it’s clear that there are some excellent examples of care across Scottish hospitals, we found a worrying level of inconsistency and gaps in care. It’s particularly concerning that knowledge of palliative care among healthcare professionals was patchy with some not understanding that it can be provided alongside curative treatments.”

Professor David Clark and Welcome Trust investigator at the University of Glasgow said: “Over the last ten years our research has consistently shown that on any given day almost one third of patients in Scottish hospitals are in the last year of life and 10 percent will die on their current admission.

“We are not grasping the opportunity to identify these people and to have conversations about their end of life preferences. Covid-19 has revealed the shocking absence of advance care plans in many cases, making it even more difficult to give the right kind of care in pandemic conditions”.

The 12 recommendations from Marie Curie and the University of Glasgow are:

1. Scottish policy must actively support palliative care in acute settings and appoint clinical and executive leads in each NHS Board for palliative and end of life care.
2. Hospitals are supported to provide consistently high-quality care that improves patient outcomes and experience.
3. Everyone with a palliative care need should be identified if admitted to hospital or attending an outpatient appointment.
4. Hospitals should ensure they have joined-up working across multi-disciplinary teams and specialities to provide palliative and end of life care.
5. IT and technology must support patient centred care and enable those working with patients to have the most up-to-date information about that care and be able to provide appropriate input.
6. An increase in the number of palliative care consultants, doctors and specialist nurses.
7. Scotland should draw upon the power of volunteers to respond to the needs of communities and empower volunteers to support those with palliative needs and approaching the end of life in acute settings.
8. All acute staff should be given training to provide care and support for those living with a terminal condition, coming to the end of life and dying in hospitals, as well their families, friends and carers.
9. All hospital staff should have training and support in communication skills to support them in speaking with people with palliative care needs, and their families.
10. A review of the number of available specialist palliative care beds across Scotland is required.
11. Hospitals should also review the physical environment to ensure it is appropriate for dying people and their families.
12. There is a need for robust data and evidence on patient and carer experience, to allow greater scrutiny of care standards.

The full report is available at www.mariecurie.org.uk/policy/publications