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University Hospitals Sussex NHS Foundation Trust

P-003681 · Report · Decision date: 27 July 2025 · View University Hospitals Sussex NHS Foundation Trust scorecard
Complaint (AI summary)
Miss Q complained that staff did not provide her father with sufficient palliative pain relief when he was at the end of his life, causing him distress and visible injury.
Outcome (AI summary)
Partly upheld. Stopping opioid pain relief was appropriate, but staff missed opportunities to ensure comfort by not referring to specialist palliative care or providing enough pain medication.

Full decision details

The Complaint

7. Miss Q complains that staff did not provide her father, Mr Q, with sufficient palliative pain relief on 1 March 2023 when he was approaching the end of his life.

8. She says that the lack of medication caused Mr Q to thrash around in pain, which caused injury and severe bruising which was distressing for her and her family to witness.

9. To resolve her complaint, Miss Q wants service improvements and compensation.

Background

10. Mr Q was an 80-year-old gentleman who had Chronic Obstructive Pulmonary Disease (COPD), type 2 diabetes, vascular dementia and rheumatoid arthritis. These conditions mean he had difficulties with his breathing, managing his blood sugar levels, memory and mobility. The records show he was admitted to the Trust on 27 February 2023 with decreased responsiveness, meaning he was failing to recognise people and respond to them.

11. When admitted, staff suspected he had an infection from an unknown source. They noted he had severe frailty and placed him on an end-of-life care pathway, as his prognosis was poor and, sadly, it appeared he was unlikely to recover from his illness.

12. Mr Q was moved from the hospital’s Emergency Department (ED) to a ward on 1 March where he sadly died the same day.

Findings

Opioid toxicity 17. When Mr Q arrived at the ED department on the morning of 27 February 2023, staff assessed him and found him to be unresponsive, with small pupils. Blood gas analysis shows he also had a high carbon dioxide level, which we understand from our adviser is a sign of respiratory depression. Respiratory depression means that the patient’s breathing is slow or shallow, and that carbon dioxide is likely increasing in their blood.

18. Staff concluded from Mr Q’s presenting symptoms that he had possible opioid accumulation. This means that staff thought the levels of opioid in his blood had gone up enough to cause toxicity. This means his levels were high enough to put him at risk of complications.

19. Miss Q says that she does not know how her father had developed opioid toxicity as he had not been able to take his morning medication.

20. As well as opioid toxicity, staff thought Mr Q also had ‘likely dehydration’ and AKI. AKI is where the kidneys suddenly stop working properly and is a serious condition that requires urgent treatment. It is usually diagnosed with a blood test to measure levels of creatinine, which is a chemical waste product produced by the muscles.

21. Blood tests taken for Mr Q showed that his creatine levels were 108. Our adviser confirms the baseline level of creatine is 50 and so 108 is very high. We asked our adviser how opioid toxicity may have developed. They explained that in patients with AKI, medications may not be passed out of the body as efficiently as they are when a patient does not have AKI, and those medications then accumulate, increasing the amount of the drugs in the blood and risking toxicity.

22. We understand from our adviser that, given Mr Q’s presentation, staff acted in line with applicable RCEM guidance in reaching a view that he was likely suffering from opioid toxicity. Mr Q was on the opioid oxycodone and had the three cardinal features of opioid toxicity, which are drowsiness, respiratory depression and small pupils, as described in the RCEM Guidelines on Acute Opioid Toxicity.

23. As well as describing the features of opioid toxicity, the RCEM Guidelines give details for the management of acute opioid toxicity. As Mr Q was not very responsive, with low oxygen levels, staff stopped his opioids, and he was treated with naloxone (a medication used to reverse or reduce the effects of opioids) as per the guidelines. As such, the Trust acted in line with applicable guidance in diagnosing Mr Q, deciding to stop his opioids and in treating him with naloxone.

Top up medication 24. Miss Q says that after stopping her father’s pain medication, staff did not give him enough ‘top up’ medication or any medication to manage his pain. As a result, he was thrashing around in pain, causing extensive injury to himself. She says that he sustained extensive bruising to his arms and legs and cut his shin on the bed rails and this was avoidable.

25. The Trust says in its response of 26 July 2023 that Mr Q was not agitated when he moved to the ward, because he had ‘recently been given midazolam to help with his end-of-life symptom’. Midazolam is a medication used for sedation and to reduce agitation.

26. We know that on the morning of his admission Mr Q was drowsy and unresponsive. A nursing entry on 28 February at 11pm notes that he ‘does not appear in pain or agitated’. At 11.40pm, Mr Q was moved to the ward.

27. By this point, Mr Q’s opioid pain medication had been stopped, and he had received a dose of naloxone.

28. At 10am, during the morning ward rounds on 1 March, a doctor described Mr Q as ‘generally comfortable’ noting that he ‘last required 2.5mg sub cut oxycodone [pain relief medication] 27/02/23’ and ‘last required midazolam 2.5 mg on 1/3/2023’.

29. The next entry in the records is at 5.05pm noting Mr Q had a skin tear on his right leg. The Trust’s response to the complaint says that Mr Q became ‘unsettled around lunchtime of 1 March’. It goes on to say that Mr Q’s agitation was intermittent, and that staff needed to be cautious in their administration of medication. Miss Q describes her father as ‘not just agitated but thrashing around in his bed’ when her mother, Mrs Q, arrived at 11am.

30. Although there is a gap in the nursing records from 12.23am to 5.05pm, the medication chart shows that on 1 March Mr Q was given midazolam on six occasions, at 2.10am, 5.05am, 9.38am, 1.15pm, 4.30pm and 6.14 pm.

31. Given that Mr Q sustained bruising to his arms and injury to his leg, we accept on the balance of probabilities that an incident of some kind took place, as the evidence available shows Mr Q had sustained injuries when there were none before. Miss Q’s descriptions of her father’s agitation are further supported by him regularly being given a dose of midazolam.

32. Paragraph 1.5.23 of NICE’s NG31 says that staff should ‘explore the possible causes of anxiety or delirium, with or without agitation, with the dying person and those important to them. Be aware that agitation in isolation is sometimes associated with other unrelieved symptoms or bodily needs for example, unrelieved pain […]’.

33. Paragraph 16 of the GMC Good Medical Practice Guidance also supports NG31, saying that doctors must ‘take all possible steps to alleviate pain and distress, whether or not a cure may be possible’.

34. We know that before Mr Q attended hospital, he was on 80mg of oxycodone twice a day for his pain. As we have already set out, when he was admitted Mr Q showed signs of opioid toxicity and, as we identified in paragraph REF _Ref198122437 \r \h 28, he was given 2.5mg of oxycodone on 27 February 2023.

35. The medication chart shows that Mr Q was given two 2.5mg doses of oxycodone over the whole admission. Our geriatrician adviser says when Mr Q was becoming agitated, despite being given midazolam, this could have been as a result of pain and opioid withdrawal.

36. Given that Mr Q was visibly agitated on six occasions from approximately 12.30am to 5pm, to the extent that he needed to be given midazolam on each of these occasions and as he was also so agitated that he sustained injury to his right shin, we think it is likely that Mr Q was also experiencing some unresolved pain.

37. Paragraph 1.5.9 NG31 says that staff should ‘seek specialist palliative care advice if the dying person’s symptoms do not improve promptly with treatment or if there are undesirable side effects such as unwanted sedation’.

38. On 27 February 2023, the records show that the plan was to involve palliative care and place Mr Q on an end-of-life pathway. We understand from our geriatrician adviser that with NG31 in mind there should have been access to support from the palliative care service, and if a patient is not settling with the treatment being given, staff should ask for advice from palliative care staff. However, we have not had sight of any observation records, and there nothing in the records available to us documenting an end-of-life pathway or that palliative care staff were ever contacted. This is also supported by Miss Q telling us she had to ask for additional support or medication to ensure her father was comfortable when in his final hours of life.

39. We consider that staff missed an opportunity to take all possible steps to alleviate pain and distress as outlined in NG31 and paragraph 16 of the GMC guidance as there is no evidence that staff requested support from the specialist palliative advice team when Mr Q was not responding to midazolam and continued to show signs of agitation. We consider this a failing.

Syringe driver 40. After stopping Mr Q’s opioid medication, Miss Q believes that staff delayed in setting up a syringe driver for her father which would have provided pain relief.

41. The ‘Palliative Care Matters’ guidelines explain that it is common practice to start with medications as required and then switch to a syringe driver if more than two doses are needed within a 24-hour period.

42. For patients with dehydration and AKI, we understand from our adviser that the opioid levels in the blood become unpredictable and so it is difficult to know whether they have come down sufficiently to restart the medication, and how much opioid it may be safe to give.

43. This means that stopping Mr Q’s pain medication and gradually restarting on an ‘as required’ basis would require a small dose to be given in response to his needs. It also means that, based on the opioids required, a syringe driver could be set up to deliver the right amount. We have therefore looked at whether the Trust considered setting up a syringe driver at that time.

44. As explained previously, Mr Q was given six doses of midazolam over a 16-hour period. As set out in paragraphs REF _Ref198201865 \r \h 35 and REF _Ref198201885 \r \h 36, we can see that Mr Q was not given pain relief on an ‘as required’ basis and was only given 2.5mg of oxycodone twice during his admission, despite him showing signs of unresolved pain.

45. It is clear that Mr Q had needed his condition reviewing sooner than it was. Although it is not evident from the records how Mr Q responded to the medication he was given prior to the syringe driver being set up, nor what medications it contained, based on the information we do have, as outlined in paragraph REF _Ref198205272 \r \h 46, it is likely that there was an earlier opportunity to set up the syringe driver. Mr Q required a third dose of midazolam at 9.38am. We consider this is the earliest opportunity that staff could have considered starting a syringe driver in line with the Palliative Care Matters guidelines as this was the third dose he needed in less than eight hours. The lack of consideration of a syringe driver from that time is a failing.

Impact

46. If Mr Q had received additional support from the palliative care team, we consider he would likely not have experienced so much distress and agitation. We know from the records that Mr Q sustained a skin tear on his shin, and we have seen evidence of extensive bruising to his limbs. Miss Q tells us that it was extremely distressing to witness her father in excessive pain and having experienced injury at the end of his life.

47. Knowing that there was an opportunity to make her father’s end of life more comfortable will be a source of distress to Miss Q, and this is an injustice to her. Not only has she been left with the distress of knowing her father could have had a more peaceful death, but she witnessed him upset, agitated and physically injured during her last hours with him. We have considered what action the Trust has taken as a result of her complaint.

48. The Trust has taken some positive steps to address the concerns she raised with it, which we recognise. These are outlined in its complaint response dated 26 July 2023. For the issues she has asked us to consider, the Trust has apologised to Miss Q for the injuries that her father sustained. However, we cannot see that the Trust has put any improvements in place that demonstrate that staff should seek specialist palliative care advice to ensure the patient is in receipt of the correct level of medication to allow a more peaceful death than Mr Q experienced.

49. We understand it has been a difficult time for Miss Q having to relive the events of when her father died. We extend our condolences to her. We hope we have been able to clearly explain how we have reached our views, based on the evidence we have considered.

50. The recommendations we make are detailed below.

Our Decision

1. We found that it was in line with applicable guidance and standards for staff to stop Mr Q’s opioid pain relief. As he was experiencing opioid toxicity, as well as an acute kidney infection (AKI), the Trust acted in line with the relevant guidance by stopping his medications.

2. However, once they had stopped Mr Q’s opioid medication, we found that staff did not act in line with the relevant standards and guidance and missed an opportunity to ensure Mr Q was comfortable by not referring him to the specialist palliative care team or by providing enough pain medication to ease his distress and anxiety. Knowing that there was an opportunity to make her father’s end of life more comfortable will be a source of distress and this is an injustice to Miss Q.

3. We therefore partly uphold the complaint.

4. We recommend that the Trust acknowledges the failings we have identified around not referring Mr Q to the specialist palliative care team, administering insufficient pain medication and in not identifying earlier that a syringe driver may have been required, along with the impact this had on him and Miss Q, and apologises to her for the distress caused by the failings.

5. We recommend the Trust shares evidence that it has taken, or will take, steps to ensure patients are given the medication they require and are referred to specialist teams when necessary.

6. We also recommend the Trust pay Miss Q £600 to acknowledge her distress of knowing there may have been a missed opportunity for the palliative care team to review Mr Q and for a syringe driver to be started earlier, meaning his discomfort in his final days could have been reduced.

Recommendations

51. In considering our recommendations, we have referred to the ‘NHS Complaint Standards’. The Complaint Standards support organisations to provide a quicker, simpler and more streamlined complaint handling service. They have a strong focus on: • early resolution by empowered and well-trained people • all staff, particularly senior staff, regularly reviewing what learning can be taken from complaints • how all staff, particularly senior staff, should use this learning to improve services.

52. In line with this, we recommend that within four weeks of this report, the Trust:

• Acknowledges the failings we have identified around not giving Mr Q the pain relief he needed and this impact this had on him and Miss Q as outlined in this report • Apologises to Miss Q for the distress caused by the failing.

53. We recommend that within eight weeks of this report, the Trust:

• Shares evidence of the steps it has taken or will take to ensure patients are given the medication and pain relief they require and are referred to specialist teams (such as palliative care) when necessary. The document should provide an explanation as to how the Trust will ensure or has ensured staff are equipped and supported to provide care for patients in similar cases to Mr Q.

• The document should show timeframes for those actions and how the Trust will assess the changes made are effective.

54. The Trust should share a copy of the action plan with us, Miss Q, the Care Quality Commission (CQC) and NHS England.

55. To decide on a level of financial remedy, we review similar cases where the person has experienced a similar injustice, along with our severity of injustice scale. Following this review, we recommend that within six weeks, the Trust should:

• pay Miss Q £600 to acknowledge her distress of knowing there was a missed opportunity for the palliative care team to review Mr Q and for a syringe driver to be started earlier, meaning his discomfort and agitation in his final days could have been reduced.

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