Dr Yinting Ta, Palliative Medicine Registrar at St Joseph’s Hospice, London and APM Research & Ethics Committee Trainee Representative
With palliative care becoming a legal right, now is the time to come together and arm ourselves with the evidence to ensure that every person has access to high quality end-of-life care in hospital.
“Dying is easy – it’s not like trying to cure someone!”
This view is one I’m sure many of us have encountered in hospital care (accompanied by varying levels of boiling blood). There is an assumption by some colleagues that if someone is dying, there is “nothing to do”. Thus, if you’re competent to provide life-sustaining treatments, you can handle dying patients with your eyes shut. For others, recognising dying remains a challenge – perhaps due to a lack of clinical exposure, or sometimes because this feels like “admitting defeat”. Still others can readily recognise dying patients, but need more support, to boost their skills and confidence, to really provide the best care for those in their last days.
Every hospital will have every combination of unconscious/conscious incompetence/competence when it comes to generalists and their skillset when caring for the dying. So, what can we, as Specialist Palliative Care Teams (SPCTs), do to ensure that everyone gets the dignified, peaceful and comfortable end to their lives that they deserve?
An anticipatory reality check is needed here. I don’t know of any hospital SPCT that isn’t stretched right now, compounded by two years battling against the COVID-19 pandemic, an aging population with evermore complex health and social care needs and endless SPCT vacancies.
We can’t, and nor should we, be trying to do everything alone. Collaboration is crucial, and our generalist colleagues are invaluable. Where generalists are confident and competent to meet the needs of dying patients, this will allow SPCTs to focus on those with more challenging needs. However, SEECare, a service evaluation project involving four acute NHS hospital trusts published last year1 found that 22% of dying patients receiving end-of-life care (EOLC) by generalists had poorly managed symptoms. Over half of these patients needed urgent prescribing advice and/or holistic support, by the evaluating SPCT. Generally, our colleagues are trying their utmost, but it is apparent that for almost a quarter of their dying patients, there is an urgent need to improve the care they receive.
So, what can we do?
Firstly, we need to capture the scale of the problem. Across the UK and Ireland, how many people in hospital die without receiving palliative care team input? And how many have unmet EOLC needs – how many are dying deaths that aren’t good enough?
The Association for Palliative Medicine (APM) know that the answers to these questions will have huge impacts. The results will inform workforce planning, commissioning, training needs, service delivery models, and ultimately, the quality of EOLC that our patients dying in hospital receive.
This is why the APM are rolling out a single-day, prospective, service evaluation project in each country in late April, and all of us in the hospital palliative care setting can help.
Site registration is already underway, and the straight-forward data collection process will allow a swift turnaround of results. The data will provide new insights into the quality of generalist-led EOLC in hospitals. Learning from good care can be shared, and where change is needed, teams will have the data to support their response – both locally and nationally.
In fact, nationally, the need for such data couldn’t be more critical.
In recent weeks, Professor of Palliative Medicine, Baroness Finlay of Llandaff, has successfully advocated an amendment to the new Health and Care Bill2, which means in England, equitable access to specialist palliative care will be an explicit legal right for the first time in NHS history. This is monumental for charity-dependent palliative care services. And for the hospital setting, SEECare can provide unique, robust data to support calls for further palliative care resources.
As a speciality driven by people who care deeply and give fully, many of us are tired, depleted and worried about taking on more work. The APM are acutely aware of this, and the project is purposefully simple with a quick data collection tool and snapshot design. Furthermore, the data you collect can be used to directly inform quality improvement in your own trust, and by contributing to the national study, you will receive acknowledgement that can be used to evidence your continuing professional development.
In palliative care, we know that high quality care is best achieved when we collaborate. And no matter how big or small your hospital or team, every site and patient included will provide vital information for our speciality moving into the future. This is truly a situation where many drops make an ocean, and where a rising tide floats all ships, so let’s seize this opportunity.
To express your interest or register for the project please email email@example.com with the subject SEECare.
- Tavabie S, Berglund A, Barclay D, Bass S, Collins N, Edwards E, Malik F, Minton O, Peters D, Stewart E, Winter J, Ford-Dunn S. Seeking Excellence in End of Life Care (SEE Care): A Multi-Centered Acute Hospitals Service Evaluation. Am J Hosp Palliat Care. 2021 Jul 1:10499091211027815. doi: 10.1177/10499091211027815. Epub ahead of print. PMID: 34196219.. Available from: https://journals.sagepub.com/eprint/SABHQ2YTHNY9K8BRV7BD/full
- Health and Care Bill: A Bill to make provision about health and social care. https://bills.parliament.uk/bills/3022