Experienced by nearly all (93%) of those assessed in first of its kind UK-wide evaluation
Deficit more likely in district general hospitals than teaching hospitals and cancer centres
People dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs,” finds a UK-wide evaluation—the first of its kind—published online in the journal BMJ Supportive & Palliative Care.
Nearly all (93%) of those assessed had demonstrable unmet need, with this deficit more apparent in district general hospitals than it was in teaching hospitals or cancer centres.
It is estimated that 1 in 10 patients admitted to UK hospitals will die during their inpatient stay. As specialist palliative care teams often function as a consult service, referral from the managing team is required.
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.
Palliative care specialists assessed how well the holistic needs of 284 adult patients nearing death, but not referred to palliative care services, were being met on one single day between 25 April and 01 May 2022. Patients in emergency care departments or intensive care units weren’t included.
The assessment included the ward specialty; age, gender, ethnicity and diagnosis of the patient; presence and severity of physical symptoms; whether psychological, spiritual, and social needs were being met; and whether a plan for nutrition and hydration was in place.
The medical and nursing notes were also reviewed to check for evidence of an end of life care plan to address identified needs. Any immediate need for specialist palliative care intervention was also noted.
Three quarters (76%) of the dying patients were between 75 and 94 years old; over half (54%) were female; and most (98%) were of white ethnicity. Only 44 out of 284 (15%) had cancer as their primary diagnosis.
The evaluation showed that 3 out of 4 patients (213/284) had physical symptoms—pain 24% (67); breathing difficulties (dyspnoea) 24% (68); respiratory secretions 21% (61); agitation 23% (66); nausea/vomiting 8% (22).
Physical symptoms were moderate to severe in nearly a third (31%, 88). Mouth care was poor in over half (56%,159).
Most (86%, 244) had other unmet holistic care needs. These included spiritual needs in two thirds (67%;190); psychological needs (60%;170); and social needs in nearly a fifth (18%, 51). And there was no plan for nutrition/hydration in 28% (80).
Overall, nearly all (93%, 264) the patients reviewed had demonstrable unmet need, the evaluation revealed.
A locally agreed end of life care plan was in place for 57% (162). And relatives had been told that the patient was dying in 85% (241) of cases, with anticipatory prescribing of meds to ease the symptoms frequently associated with the dying process in 82% (233).
Immediate specialist palliative care intervention was required in over half the patients (57%, 162): prescribing changes in 39% (63); provision of psychosocial or spiritual care in 15% (24); mouth care in 12% (19); implementing aspects of the end of life care plan in 11% (18); and immediate administration of meds for symptom relief in 1 in 10 patients (16).
Other interventions included 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%).
Patients were less likely to need intervention with a higher than average headcount of specialist palliative care staff /100,000 of the population (66% vs 52%); where there was a 7-day specialist palliative care service available (67% vs 54%); and where there was no end of life care plan in place (67% vs 53%).
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 (98% vs 90%).
This is an observational snapshot study, precluding the ability to draw firm conclusions, added to which the researchers didn’t evaluate the care of patients known to palliative care services, nor measure the actual number of those dying in hospitals—factors that may be influential.
Nevertheless, they highlight: “With the Health and Care Act  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.”
Notes for editors
Research: Seeking Excellence in End of Life Care UK (SEECare UK): a UK multicentred service evaluation doi 10.1136/spcare-2023-004177
Journal: BMJ Supportive & Palliative Care
Funding: None declared
Link to Academy of Medical Sciences press release labelling system
Externally peer reviewed? Yes
Evidence type: Observational