Needs of dying patients in UK hospitals not being met

12 July 2023

People dying in UK hospitals without specialist palliative care often have “significant and poorly identified unmet needs,” a UK-wide evaluation involving UCL researchers has found.

An older person and younger person looking a view, Credit: Dominik Lange, Unsplash

The evaluation —the first of its kind— published online in the journal BMJ Supportive & Palliative Care, found that nearly all (93%) of those assessed had demonstrable unmet need. This deficit was more apparent in district general hospitals than it was in teaching hospitals or cancer centres. 

An estimated one in 10 patients admitted to UK hospitals will die during their inpatient stay, the study says.

As specialist palliative care teams often require referral from the managing team. But complexities around recognising that a patient is dying and the stigma associated with palliative care mean these referrals are frequently not made, say the researchers.

In response to the perceived unmet needs of people dying in hospitals, the Association of Palliative Medicine coordinated the first ever prospective evaluation of end-of-life care against set standards in 88 hospitals across the UK: Seeking Excellence in End-of-life Care UK or SEECareUK. 

The project involved researchers from UCL, University College London Hospital, University Sussex Hospitals NHS foundation trust and the University of St Andrews.

Palliative care specialists assessed 284 adult patients nearing death, but not referred to palliative care services, to establish how well their holistic needs were being met.

The evaluation showed that three out of four patients had physical symptoms including pain, breathing difficulties and nausea/vomiting. Physical symptoms were moderate to severe in nearly a third.

A locally agreed end of life care plan was in place for 57%. And relatives had been told that the patient was dying in 85% of cases, with anticipatory prescribing of meds to ease the symptoms frequently associated with the dying process in 82%. 

Other interventions included provision of psychosocial or spiritual care, stopping treatments that were no longer appropriate, advance care planning and rapid discharge to home or residential care.

Patients’ needs were significantly less likely to be met at a district general hospital than they were in a teaching hospital or cancer centre (98% vs 91%). Dying patients in district general hospitals were also significantly more likely to require intervention (71% vs 51%).

Although a high proportion of patients with end-of-life care plans had unmet needs, this was still significantly more likely without any such care plan in place.

The study is an observational snapshot, so it is difficult to draw firm conclusions. However, the researchers said: “With the Health and Care Act [2022] legislating access to palliative care wherever and whenever needed, these findings raise significant questions about the methods of delivery best suited to meeting the complex needs of dying people.”

They add: “Furthermore, expansion into intermediate care, residential care environments, patients’ homes and other potentially underserved environments is likely to reveal significant unmet specialist palliative care needs.”

And at the very least, they conclude: “These findings should prompt further research and give service leads and commissioners stimulus to revisit their specialist palliative care strategic planning.”

Dr Nicola White, senior research fellow, Marie Curie Palliative Care Research Department and the Division of Psychiatry, said: “This research was conducted in hospitals across the UK. It shows that the specialty of palliative care is a science and that recognising dying is a really difficult skill. The high level of unmet needs in this group of people indicates that specialist palliative care clinicians should be included as part of routine care; to ensure that people admitted to a hospital live, and importantly die, as well as they can.”