Author: Dr Simon Tavabie, Transforming End of Life Care Fellow @UCLH & Palliative Care Doctor (on behalf of the authors of the SEECareUK study)
Dr Tavabie summarises the findings from the recently published Seeking Excellence in End-of-Life Care UK (SEECareUK) study
It’s a Saturday morning at your local District General Hospital and sadly, as you come onto shift, one of the patients you’re looking after is recognised to be dying. You really want to do right by this person but there isn’t an in-person specialist palliative care team over the weekend and besides, she’s dying without complicated symptoms. You should be able to manage. Through your shift you feel uneasy. You can’t put your finger on exactly what is wrong, but you feel that things aren’t as good as they could be…
Later, it’s time for the annual audits and the hospital specialist palliative care team goes back and reviews your notes. You had gone through all the domains of holistic assessment and documented the care you’d given. They mark the care as good and feed this back to the national team who score your hospital as delivering better than average end of life care. This is of little reassurance as you care for the next person, and the next person, dying in your department while you remain uneasy.
The above vignette describes the situation for so many NHS staff providing some of the most stress inducing care possible under increasingly difficult pressures. Seeking Excellence in End-of-Life Care UK (SEECareUK) is a project aimed at looking at the care of dying people differently.
The group formed at the Association of Palliative Medicine collaborated to run a UK wide prospective service evaluation whereby specialists in palliative care reviewed the care of dying people they wouldn’t normally meet, bringing their expertise to fill the gaps in assessment that exist in reviewing case-notes and retrospective surveys.
88 hospitals collected data from one day in a specified window looking at the presence and severity of symptoms, psycho-spiritual care and demographic factors amongst others. Significantly higher levels of need was reported through this approach than through traditional retrospective review. 93% of the identified patients had unmet need in some area of their care, with 75% being physically symptomatic and 86% having areas of unmet psycho-socio-spiritual need.
Significant inequity was identified with patients cared for in District General Hospitals worse off than those cared for in teaching hospitals or cancer centres (Unmet need 98.1%v91.2% p0.02; Need for specialist intervention 70.9%v50.8% p0.001). If your local hospital doesn’t use structured individualised care plans for dying people, you are also more likely to experience a greater degree of suffering and need for immediate intervention (Unmet need 98.3%v90.3% p0.006; Intervention 67.2%v53.3% p0.02). In fact, without an end-of-life care plan it was almost impossible for you to have all your needs met (NPV EOLCP on all needs met 0.98, CI 0.94-0.997).
There has been a real dearth of exploration in the best way to structure these care plans, despite the controversy around previous national efforts. This reluctance to engage with the potential learning here leads to huge variance between hospitals’ practice and, ultimately, patients suffering.
So, the stats are stark and tell us a lot about what the current situation is, but what does it mean for us and for our patients? The 2022 Health and Care Act in England legislates for access to high quality palliative care across all settings. We are clearly failing on this front. With 88 hospitals teams participating and finding the prospective methodology acceptable (and many continuing with this approach outside of the project), we need to ask the question as to whether it is appropriate to rely solely on retrospective data which clearly underestimates the suffering experienced by dying people.
As a specialty, Palliative Medicine needs to evaluate its approach to ‘simple dying’. As SEECareUK demonstrates – people are rarely ‘simple’. Significant investment is needed in research to evaluate what *actually* makes a difference and services need to reflect on how they structure their offer and whether they could be doing better.
Do NHS Hospitals care for you when you’re dying? Yes, in my experience, every single member of staff will care for you as best they can.
Could we in palliative care be doing more? No doubt. We need a sea change.