Most patients dying in hospitals have unmet needs, according to a new multi-centre study from researchers across the UK, who said that even for the 57% of patients with an end-of-life care plan, this was "not enough to independently guarantee the provision of holistic care".
Although most people say they would prefer to die at home, the majority actually die in hospital . Estimates suggest that one in three adult hospital inpatients is in the last year of their life, with one in 10 patients likely to die during admission.
The study, published in BMJ Supportive & Palliative Care, was the first of its kind to conduct a prospective UK-wide evaluation of the care provided to people dying in hospital without specialist palliative and end-of-life care input. People dying in emergency departments or intensive care units were excluded.
The study sample was drawn from 88 hospitals and included 284 adult inpatients recognised by clinical staff on the ward as being in the last days of life. Most patients ( 86 %) were aged 75 and over, 54% were female and 98% of White ethnicity. A majority (60%) had been admitted to a medical ward, with 20% on a frailty ward, 13% on a surgical ward and 7% in an admissions ward.
Each was evaluated on a single day between 25 April 2022 and 01 May 2022 by a specialist in palliative care, using a standardised proforma recording demographic details; diagnosis; presence and severity of physical symptoms; whether psychological, spiritual, and social needs were being addressed, and whether
a plan for hydration and nutrition was in place. In addition, a review of medical and nursing notes was conducted to assess elements of an individualised end-of-life care plan where one was in place.
Almost All Patients Received Insufficient Care
Results showed that almost all (93%) patients had some unmet need:
- Physical symptoms: 75% (moderate to severe in 31%)
- pain: 24%
- dyspnoea: 24%
- respiratory secretions: 21%
- agitation: 23%
- nausea/vomiting: 8%
- Poor mouthcare: 56%
- Unmet holistic care needs: 86%
- spiritual needs: 67%
- psychological needs: 60%
- social needs: 18%
- No plan for hydration/nutrition: 28%
In addition, a locally agreed end-of-life care plan was in place for only 57%, although 85% of relatives had been told that the patient was dying, and "anticipatory prescribing" was in place for 82%.
Over Half of Patients Needed "Immediate Intervention"
More than half of patients (57%) required "immediate intervention" from the specialist palliative care reviewers, including changes in prescribing, psychosocial or spiritual care, mouthcare, end-of-life and advanced care planning, immediate administration of symptom-focused medication, stopping therapies that were no longer appropriate, and rapid discharge.
The team concluded that "significant and poorly identified unmet needs" were "very common among the dying in UK hospitals". Although this was true irrespective of location, patients' needs were significantly less likely to be met in district general hospitals compared with teaching hospitals and cancer centres (98.1% vs 91.2%; P = .02). Also, while most (90.3%) patients with end-of-life plans in place still had unmet needs, this was significantly fewer than for those without a plan (98.3%; P = .006).
"Almost Universal Multidimensional Unmet Need"
The team concluded that their study "demonstrated almost universal multidimensional unmet need". Given that the 2022 Health and Care Act legislated for access to palliative care services "wherever and whenever needed", researchers said the findings should "give service leads and commissioners stimulus to revisit their specialist palliative care strategic planning".
The team plan further research with expanded inpatient numbers, and also urged similar research in intermediate care, residential care environments, patients' homes, and other potentially underserved environments, which they said were also "likely to reveal significant unmet specialist palliative care needs".
BMJ Support Palliat Care. Published online 11 July 2023.