United Lincolnshire Teaching Hospitals NHS Trust

4. Mrs E complains that during her mother Mrs R’s admission to the Trust from 18 October 2021, the Trust failed to identify or act upon clear clinical indicators that she was reaching the end-of-life stage.

5. Very sadly, Mrs R died at the Trust on 13 November 2021. As a result of the above failing, Mrs E says appropriate palliative care planning, symptom relief and communication about end-of-life was not initiated in a timely manner. She says her mother lost the opportunity to decide how and where she wished to receive care at the end of her life, that instead of being able to be at home with family, she died alone in hospital.

6. Mrs E has experienced profound emotional distress and is left with deep anguish and trauma having been denied chance to ensure her mother’s final wishes were respected and to be with her at the end.

7. To resolve her complaint, Mrs E would like the Trust to acknowledge its failing and to apologise for the impact. She seeks improvements, for lessons to be learned and action taken so these failings do not happen to anyone else in future.

8. Mrs R was admitted to the Trust on 18 October 2021, reporting a decline for the past month. She presented with lethargy, shortness of breath, increased leg swelling, and had not been eating or drinking well for the past week with three days of flank pain.

9. Mrs R had chronic kidney disease, and a recent scan reported the left kidney was not functioning and an obstruction in the right kidney.

10. She was admitted with a plan to have conservative (less invasive) treatment initially. It was decided Mrs R would not be a candidate for dialysis whilst there remained an obstruction in the right kidney. A nephrostomy was sited (a tube that lets urine drain from the kidney through an opening in the skin) to clear the obstruction and she was transferred to the hospital where the nephrology team were based.

11. Throughout her admission, Mrs R received input from various specialists including urology, haematology, renal, nephrology, oncology and dietetic teams. There were occasions when the nephrostomy tube required repositioning and changing.

12. At 4.40am on 13 November, a healthcare support worker went to assess Mrs R and sadly found her deceased. Records note she was last seen alive at 2am. A cardiac arrest call was made, and it was agreed it would be futile to commence attempts at resuscitation.

13. Records note the medical examiner concluded the cause of death as acute renal (kidney) failure secondary to obstructive nephropathy (kidney damage caused by blockage of urine flow). Remaining unhappy with the responses received, Mrs E asked us to investigate.

17. Guidance from the National Institute for Health and Care Excellence contains recommendations to help healthcare professionals recognise when a person may be entering the last days of their life. It recommends that healthcare professionals:

‘Assess for changes in signs and symptoms in the person and review any investigation results that have already been reported that may suggest a person is entering the last days of life. These changes include the following: • signs such as agitation, Cheyne–Stokes breathing [an abnormal pattern of breathing], deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss • symptoms such as increasing fatigue and loss of appetite • functional observations such as changes in communication, deteriorating mobility or performance status, or social withdrawal.’

18. We know how concerned Mrs E is, to think the Trust failed to identify her mother was reaching the end-of-life stage. We have considered the evidence carefully, and do not find that Mrs R presented with any of the changes in the signs and symptoms listed in the guidance, to have suggested Mrs R was, at any point, reaching the last days of life.

19. Whilst it is documented on admission Mrs R had lethargy, our adviser explains this is not the same as the increasing fatigue listed in guidance. They explain that lethargy as a symptom alone is not indicative of someone being at the end of their life, and it is not an uncommon or unexpected sign for someone at Mrs R’s age with reduced kidney function and the other conditions she had.

20. We also see on admission it is noted Mrs R had not been eating or drinking well for the past week. Our adviser explains this is not the same as a loss of appetite. It was short-term in nature and not demonstrated throughout the admission as an acute matter. Records note that whilst her intake was reduced, Mrs R was eating and drinking a normal diet during the admission. This does not indicate a changed symptom of loss of appetite as listed in guidance.

21. We know Mrs E is specifically concerned about indicators being present from 1 November. The records show that later that day, Mrs R had raised inflammatory markers and a low eGFR (indicating reduced kidney function). Our adviser explains these were because of her ongoing clinical problems and not indicative of an end-of-life state.

22. Appropriately, the Trust was actively treating Mrs R’s clinical presentation. As our adviser explains, active treatment is not given where there is any evidence of futility. This further shows there was nothing to suggest Mrs R was nearing the end of her life.

23. Records throughout the admission support this. They show Mrs R was communicating with the treating team about her care and she was involved in her treatment decision-making.

24. As examples, on 10 November, Mrs R voiced that she did not want to be transferred hospitals for a further nephrostomy change. The treating team acted by involving her in the decision-making and proceeding in line with her wishes. That same day an entry notes Mrs R declined to be weighed, further demonstrating that she was able to communicate her wishes, and these were acted upon.

25. There is nothing here, before or after, to suggest she Mrs R was deteriorating in accordance with the guidance we have outlined, or in any manner, to suggest she was nearing the end-of-life stage. We cannot see anything to have warranted a discussion around end-of-life or any additional or alternative action.

26. We know Mrs E’s strength of feeling, that it was apparent to her that her mother was reaching this stage, and more should have been done. We hope our report can provide her the assurance that we do not see evidence to show this was the case, or that the Trust failed in this regard.

1. We have carefully considered Mrs E’s complaint, that the Trust’s failure to have identified her mother was reaching the end-of-life stage had considerable impact upon her care planning and choices in her last days of life.

2. We do not see any evidence of failings in the complaint Mrs E has raised with us. From the evidence we have seen, we have decided to not uphold this complaint.

3. We recognise the distress Mrs E experienced due to her mother’s sad death in these circumstances. We hope our report provides her assurance in the matter we investigated and fully explains our decision.