Midazolam
20. NICE guidance says any drugs used for end-of-life care to help control symptoms, including their actions and side effects should be fully explained to patients and their families.
21. Section 33 of GMC Good medical practice says to be considerate to those close to the patient and be sensitive in giving them information and support. The NMC Code says to treat people with kindness, respect and compassion.
22. The BNF guidance explains respiratory depression (slow and ineffective breathing) and drowsiness are common or very common side effects of midazolam. When given with opioids (such as morphine) it increases the risk of respiratory depression and the sedative effects.
23. Our adviser said patients who are at the end of their life may deteriorate quite quickly. They said although it is certainly not the case that all patients will deteriorate quickly, nurses experienced in end-of-life care would be aware this was a possibility.
24. There are records of staff conversations with Mr S and his daughters. In the conversation with the family, a nurse explained the focus was on keeping Mr S comfortable and they had begun end-of-life focused care. But, there is no record of the anticipatory medication and their side effects being explained to the family at that time. This is not in line with the NICE guidance.
25. The Trust has acknowledged there was no discussion with the family about the possibility that Mr S’s condition may change quickly or about the best approach to maintaining communication.
26. The records show that around 10pm staff gave Mr S midazolam because he was distressed. This was effective in calming him down and settling him.
27. Unfortunately, staff did not contact the family when giving this to him. We would not expect staff to notify family each time any medication is given for symptom control, as they had already told the family they would focus on keeping Mr S comfortable.
28. But, the sedative effect of midazolam means a family may be unable to speak to their relative after this is given. There is also the potential for deterioration because of its effect on the respiratory rate.
29. The Trust has said it would have been good practice for staff to call the patient’s family when they gave the first dose of midazolam, because this is a sign his condition had changed.
30. Considering staff had not explained the side effects of midazolam to the family earlier, we agree this was another opportunity for staff to make sure they understood what might happen. This would have been in line with the guidance above about the need for sensitivity and compassion in dealing with patients and relatives.
31. Not discussing the anticipatory medications and their side effects with Mr S’s family is a failing.
Impact of this failing
32. If the Trust had told the family about the side effects of midazolam, Mrs M would have come to the hospital when it was given to her father. We know when it called her later, she arrived at the hospital within about 30 minutes.
33. We think if staff had called her at about 9.45pm, she would have arrived before her father sadly died at around 11.30pm.
34. The failure to explain the side effects of midazolam to Mrs M when discussing the end-of-life care plan or when giving the medication, meant she was denied the opportunity to be with her father when he died. We can see this added to Mrs M’s distress when she was already grieving for her father.
35. The Trust should act to put this right. We address this is our recommendations section at the end of this report.
One to one supervision
36. The Trust’s enhanced care policy says the role of the CSW when providing care is to keep the patient safe from harm. They would be expected to provide personal care and physical care. The CSW will be responsible for doing observations, making sure of good hydration and nutrition, observing for symptoms of delirium and recording and reporting to supervisory registered nursing staff.
37. It says staff providing enhanced care should sign, date and time when they provided the care in the enhanced care activity log.
38. We have not seen an enhanced care activity log and the Trust has told us there are no other one to one care records. This lack of records is not in line with the Trust’s enhanced care policy.
39. But, we can reassure Mrs M there is some evidence that Mr S was having one to one care on the day he died. There is an entry from a nurse at shift handover that notes Mr S was still getting one to one care.
40. There is also evidence in the complaint file where a nurse provides some detail of the CSW’s involvement with Mr S at different times throughout the evening.
41. Although there are no direct records of the care being provided by the CSW, there is enough evidence to say Mr S was receiving one to one care. We have not found a failing here.
Deterioration
42. Mrs M is concerned staff missed signs of deterioration. We can understand why she has this concern when her father died so soon after staff contacted her.
43. The NMC Code says nurses must accurately identify, observe and assess signs of normal or worsening physical health in the person receiving care. It also says to treat people with kindness, respect and compassion.
44. As there are no records from the CSW providing one to one care, there is no direct evidence about when Mr S’s condition deteriorated.
45. We know staff gave him midazolam at 9.45pm because he was agitated and a short time later staff moved him from his side room to a bay. There is no information in the records to provide any detail about what happened after that.
46. In the complaint file a record says Mr S had been snoring before the CSW told the nurse his breathing had then suddenly changed.
47. We know the nurse immediately reviewed Mr S and saw he was having agonal breathing. Our adviser said a patient was unlikely to go from breathing normally to agonal breathing. There would likely have been changes in breathing to indicate a change in condition, before the agonal breathing began.
48. Marie Curie (an end-of-life charity) describes how breathing can become loud in the last days or hours of life. This is due to the build-up of mucous in the throat or airway. Our adviser said a snoring sound is a clear sign of an upper airway obstruction and can indicate deterioration in the condition of a patient at end-of-life. We accept a snoring sound can be due to other causes.
49. We know the Trust gave midazolam at 9.45pm and this is a respiratory depressant. We know a patient is unlikely to go from breathing normally to agonal breathing. There is evidence Mr S’s breathing had become noisy, which the CSW identified as snoring.
50. It is more likely than not this ‘snoring’ sound was a change in Mr S’s breathing that indicated deterioration. Unfortunately, the CSW did not recognise this. This was not in line with the guidance in paragraph 43.
51. Staff were aware the family wanted to be with Mr S when he died. In line with NMC guidance, staff should have contacted Mr S’s family at this point. They did not and this is a failing.
Impact of this failing
52. When Mr S’s condition deteriorated staff should have contacted Mrs M. Unfortunately, due to the lack of records of one to one care, we do not know when Mr S’s breathing changed to indicate his deterioration.
53. Our adviser said there is no set amount of time a patient would have a reduced breathing rate, or upper airway obstruction before they enter the final stage of agonal breathing.
54. So, we cannot say at what time staff should have contacted Mrs M. But, this was a missed opportunity for Mrs M to have been made aware of her father’s deteriorating condition.
55. The Trust should act to put this right. We address this is in our recommendations section below.