An evaluation of the needs of patients in the last days of life

By Dr Anja Berglund, Internal Medicine Trainee at University Hospitals Sussex

 

As I’m sitting down to write this, we are exactly one week from so-called “Black Wednesday” – a new cohort of Foundation Year 1 doctors starting on the wards. As always, I’m reminded of my own experiences in those first few months. Our first year as doctors is often a whirlwind of emotions and an overwhelming number of new experiences: new hospital, new colleagues, new knowledge, new skills. For me, the biggest adjustment was the sense of responsibility which medical school doesn’t quite give you – these were now MY patients. I think that is why the incident I’m about to share has stayed with me for so many years.

I was about 1 month into my foundation year, and frequently worked alone on a 26-bed ward. Arriving one morning I was handed over that a patient had become unwell overnight – breathless – she was having a chest x-ray but when she returned she would need a CT scan. “Simple enough” I thought, “I can handle that”. But when my patient was wheeled onto the ward she looked grey, unresponsive, and gasping for breath. I can’t deny that in that moment I panicked, and that sense of responsibility weighed heavily on me. This woman was elderly and frail with multiple comorbidities, right now she was acutely unwell and definitely not fit to go for that CT scan. Everything happened very quickly. There was no senior on the ward, the porters were coming to get her for the CT, but she was MY patient, she was suffering, and someone had to make a decision.

Recognising a dying patient was introduced to me abruptly – the start of a steep learning curve. With the support of an experienced matron I cancelled the CT scan, I phoned the patient’s family to come in, and I phoned the consultant to explain. By that afternoon she had died. 5 years on I still remember her name, and the care of dying patients is an issue that feels very close to my heart.

I have sought out jobs and projects which address this. This year I participated in a study looking specifically at patients dying in hospital. Large national audits collecting data on end-of-life care rely on retrospective case-note reviews1 which means quality of end-of-life care is only assessed in hindsight, after patients have died. In other words, there will be patients dying in hospital as you read this who could have unmet supportive and palliative care needs. These were the patients we were hoping to reach with this study.

Our study was conducted across four acute hospital trusts in the South of England. On four separate occasions we performed a prospective service evaluation across all wards in those four hospitals. We reviewed all patients identified as in the last days of life, and collected data on symptom burden, medication use and their multi-professional care plans.2 From our research we found that 73% of patients who were dying had an end-of-life care plan in place, and that 78% of patients had well controlled or absent symptoms. This leaves 22% of patients with symptoms that needed to be addressed by the palliative care team on the day. For these patients we were able to make immediate changes to improve their care. Overall, our reviews triggered interventions in 56% of patients.2

With this study we have shown that there is significant unmet palliative care need within the inpatient population across several acute hospitals. The results of this inform us as a team what kind of care our dying patients are receiving, and what we should be doing to improve their experience.2

When I identified my patient as dying, she had never been discussed with the palliative care team, there was no escalation plan in place, and she certainly did not have anticipatory medications prescribed. Several barriers have been identified to discussions around prognosis, palliative care, and end of life. Doctors may lack confidence or support to have these conversations; there is no time or no appropriate place to have them; or they may perceive that the patients or their families do not want to have these conversations.3 These barriers delay referrals to the supportive and palliative care team.3 Yet we have highlighted here the unmet care needs of many dying patients in acute hospitals. With new junior colleagues about to start work, I hope to help them have better experiences than I did when caring for patients in their last days of life. This research emphasises the need for further quality improvement in this area, and future research will involve a wider scale evaluation and a more sustained intervention.

 

References

  1. National audit of care at the end of life (NACEL). Available from: https://www.nhsbenchmarking.nhs.uk/nacel [Accessed 29/7/21]
  2. 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 [Accessed 29/7/21]
  3. Royal College of Physicians. Talking about dying: How to begin honest conversations about what lies ahead. RCP, 2018. Available from rcplondon.ac.uk/projects/outputs/talking-about-dying-how-begin-honest-conversations-about-what-lies-ahead [Accessed 30/7/21]

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