Torbay and South Devon NHS Foundation Trust

6. Miss R complains about the following issues during her father Mr R’s inpatient admission at the Trust between 29 April 2023 and 5 May 2023. She says:

• the Trust failed to provide Mr R with adequate hydration and mouth care • the Trust failed to adjust the medication in the syringe pump to adequately manage Mr R’s pain and this was not reviewed by the clinical team • the Trust reinserted a catheter into Mr R’s bladder without first consulting her or a family member.

7. Miss R believes the failure to provide adequate hydration contributed to her father’s death. The medication administered by the syringe pump was not effective, and this resulted in her father experiencing agitation and pain. The reinsertion of a catheter caused her father agitation and distress.

8. To resolve her complaint, Miss R seeks service improvements.

9. On 28 April 2023, Mr R attended the Trust’s Emergency Department (ED) at 11.15am with difficulty breathing, and a possible chest infection and sepsis.

10. A doctor assessed Mr R, he appeared drowsy. His chest had widespread crackles and dyspnoea, which is shortness of breath and a frequent sputumous cough, which produces mucus.

11. Mr R was diagnosed with a lower respiratory tract infection and congestive cardiac failure, a chronic condition where the heart cannot pump blood effectively, leading to fluid buildup in lungs and tissues. A chest X-ray showed likely infective and pulmonary oedema, an infection within his lungs.

12. The doctor noted Mr R had advanced clinical frailty, multiorgan failure and that he had likely started the end of life process. The plan was to keep him comfortable to ensure he had a peaceful death. The doctor agreed a treatment plan to begin the end of life pathway, provide PRN (as needed) medication, a catheter to monitor his urine output, mouth care, and to refer him to the palliative care team for symptom management.

13. Mr R’s individualised end of life care plan outlined that he was not to receive intravenous or subcutaneous (under the skin) fluids.

14. On 28 April, Mr R had a scan on his bladder. The results showed 776mls of urine in his bladder and a catheter was inserted to relieve any discomfort. He was later transferred to an inpatient ward to continue with the treatment plan.

15. On 29 April, the nursing team provided mouthcare to Mr R and he appeared settled after receiving PRN medication.

16. A specialist Palliative Care Nurse (PCN) reviewed Mr R and recommended starting a syringe pump. A syringe pump is commonly used in end of life care to deliver a steady dose of medication under the skin over a set period. Shortly afterwards he was given 100mcg of fentanyl through the syringe pump to control his pain and keep him comfortable. He was regularly reviewed by doctors and the PCN to assess his pain management.

17. On 30 May, Mr R’s family reported that he was pulling at his catheter and asked the nursing team to remove it. A nurse removed it after explaining the risks and benefits.

18. On 1 May, a PCN reviewed Mr R’s medication administered by the syringe pump after the nursing team reported he was agitated and distressed.

19. On 2 May, the Trust adjusted his regular fentanyl medication following concerns that he had been ‘over-opiated’.

20. Mr R’s care plan was updated to provide regular mouthcare with uralieve, which is typically used to relieve discomfort from mouth ulcers, sore gums or other oral irritations and maintain oral hygiene. Clinically assisted hydration was not recommended, as the risks were considered to outweigh the benefits (believed to be referring to the risks of fluid overload).

21. On 3 May, Mr R had a bladder scan. The scan showed he had urinary retention and a catheter was inserted into his bladder to remove the urine and relieve any discomfort.

22. On 5 May, the family met with a PCN and a doctor to express their concerns about the effectiveness of the syringe pump and that Mr R had not been given fluids.

23. Shortly after this meeting took place, Mr R’s breathing changed and sadly he died.

Mouth care 27. Miss R complains the Trust failed to provide her father with adequate mouth care.

28. On 28 April, part of Mr R’s treatment plan was to keep him comfortable in his final days by providing him with regular mouthcare.

29. The nursing team documented the times when Mr R was given mouth care on a ‘comfort rounding for patients in the last days of life’ chart. It is expected that staff check if a patient’s mouth is moist and clean and give appropriate care as required. This chart includes an hourly section covering a 24 hour period.

30. Mr R was given mouth care at certain times between 29 April and 5 May. The date and frequency he was given mouthcare over a 24 hour period is as follows:

• 29 April – frequency 24 • 30 April – frequency 17 • 1 May – frequency 17 • 2 May – frequency 12 • 3 May – frequency 21 • 4 May – frequency 16 • 5 May – frequency 7

31. Our Nursing Adviser told us the records indicate mouth care was not given consistently. Some days it was provided more frequently than others, while on particular days mouth care was not carried out for many hours. Our Nursing Adviser says patients should not be left for hours without mouth care unless a reason for this is recorded.

32. It is recognised that on a few occasions when the nursing team offered mouthcare to Mr R, they were unable to provide it due to his increased agitation and these instances were appropriately recorded. However, these instances were minimal and did not significantly impact the overall frequency and do not account for the wider gaps identified in the records.

33. On 30 April, Miss R told us she complained to the nursing team that her father, Mr R, was not receiving mouth care. She reported that his mouth was exceptionally dry, with visible blisters and a thick, cracked coating on his tongue.

34. Miss R told us to her knowledge, no oral care had been provided prior to her complaint. She stated that shortly after she raised the issue, a member of the nursing team entered the room carrying several pink foam sponges and cups and proceeded to provide mouth care. She told us she does not recall any other occasion when the nursing team provided him with mouthcare.

35. In its complaint response, the Trust says it consulted several members of staff regarding providing mouth care to Mr R and they have provided assurance that this essential aspect of care was carried out.

36. RCN guideline for mouth care explains that during end-of-life care, mouth care should be carried out hourly or as tolerated by the person to maintain comfort and manage dryness. Miss R consistently reported that mouth care was not provided. She was present at the hospital regularly and repeatedly visited the ward at night and did not observe nursing staff providing mouth care. Given the gaps in the mouth care records, her consistent presence and opportunity to witness routine care, these factors support her account that this aspect of care may not have been carried out as expected.

37. Although we cannot say that hourly mouth care would have prevented Mr R’s blisters and cracked tongue, opportunities were missed to ensure mouth care was optimised to make him as comfortable as possible during his last days. We recognise that seeing Mr R experience these symptoms would have been very distressing for his family.

38. Our view is that there were occasions when mouth care was not carried out in accordance with the RCN guideline. We will uphold this aspect of Miss R’s complaint.

Hydration

39. Miss R says she was upset her father was not getting any fluids and the last time he received fluids was on the evening of 27 April 2023, the day before his admission to the ED.

40. She says her father was unable to swallow, but the provision of hydration does not require a responsive swallow and a bag of intravenous fluid can be slowly administered to meet a patient’s needs.

41. In its complaint response, the Trust says ‘administering fluids, even slowly, can cause distress and increase agitation in patients at this stage. It says given Mr R’s history of congestive cardiac failure, additional fluids could have led to chest congestion and discomfort from increased secretions.’

42. NICE guideline NG31 states for a person who is in the last days of life, clinically assisted hydration may relieve distressing symptoms or signs of dehydration, but may cause other problems. The guideline advises clinicians to consider the potential risks, such as fluid overload, when deciding whether to initiate clinically assisted hydration.

43. On 28 April, the clinical team completed an individualised end of life care assessment and care plan for Mr R. The plan specified that clinically assisted hydration including intravenous or subcutaneous fluids would not be provided given due to his condition as the risks outweighed the benefits.

44. Our Nursing Adviser told us it is good practice to assess every patient to determine if fluids are appropriate. In Mr R’s case, the potential side effects could have worsened his symptoms. Given his heart related history and kidney failure, the risks of fluid overload outweighed any potential benefits.

45. The records show that on 4 May, a PCN and a consultant in palliative medicine spoke with Mr R’s family members. Upon reviewing the notes, the date may have been recorded incorrectly and the conversation likely took place on 5 May.

46. During the conversation, the clinical team explained to the family that giving Mr R fluids would be inappropriate as he would become chesty and oedematous (swollen due to fluid retention).

47. Our Nursing Adviser told us there is currently no research evidence to show that giving subcutaneous fluid, to patients at the end of life is beneficial. It is not common practice to give sub subcutaneous fluids in the last days of life.

48. Our view is that given Mr R’s condition, the clinical team acted in accordance with NICE guideline NG31 when it decided not to provide Mr R with clinically assisted fluids due to the risk of fluid overload.

Syringe pump

49. Miss R complains the Trust failed to adjust the medication in the syringe pump to adequately manage Mr R’s pain and this was not reviewed by the clinical team. She says even though her father was on a syringe pump, he was often agitated or in pain and believed the medication administered via the pump was not keeping him comfortable.

50. NICE guideline CG140 recommends when providing palliative opioid pain relief medication, clinicians should monitor the patient and adjust the dose of medication provided until a good balance exists between acceptable pain control and side effects.

51. Before Mr R’s admission, he was receiving codeine. When planning ongoing opioid therapy, previous opioid use must be taken into account, as the total opioid dose needs to reflect both current and prior opioid exposure. Patients who have already been taking opioids may have developed some tolerance, meaning a higher dose of opioids may be required to achieve adequate symptom control.

52. On 29 April, a PCN recommended commencing Mr R on a syringe pump.

53. NICE guideline CG140 recommends a starting dose of 20mg to 30mg of oral morphine over 24 hours for patients requiring regular strong opioid medication who do not have a kidney or liver impairment. Fentanyl is also listed as a strong opioid for palliative care pain relief.

54. Due to Mr R’s significant kidney impairment, oral morphine was considered unsuitable. Following NICE guideline CG140, the PCN recommended regular fentanyl through a syringe pump, therefore 100mcg was prescribed over 24 hours, with the first dose given at 2.05pm.

55. Shortly after starting fentanyl, Mr R appeared settled and comfortable. The syringe pump was in place and effectively controlling his pain.

56. In addition to the fentanyl administered via the syringe pump, the clinical team also prescribed Mr R 25mcg of fentanyl as a PRN (as-needed) injection to manage any breakthrough pain. This allows additional pain relief if symptoms arise between the regular doses.

57. The records show Mr R was reviewed regularly by a doctor and a PCN between 29 April and 5 May and his fentanyl delivered through a syringe pump was adjusted on two occasions.

58. Our Consultant Adviser told us there is no absolute ‘correct’ dosage and prescribing is based on a multitude of factors, including kidney and liver function, prior opiate usage as well as response to treatment.

59. The first occasion the clinical team adjusted Mr R’s fentanyl syringe pump was on 1 May, after a doctor assessed him and noted he appeared to be in distress. Shortly afterwards a PCN reviewed him and noted he appeared agitated, distressed and Mr R nodded when asked if he was in pain. His abdomen was tender when gently pressed. The PCN adjusted his dose of fentanyl in the syringe pump from 100mcg to 150mcg over 24 hours to manage his pain.

60. The second occasion the clinical team adjusted Mr R’s fentanyl in the syringe pump was on 2 May when the PCN reviewed him and found him to be agitated and distressed. The PCN considered whether Mr R had received excessive opioid medication and discussed this with a doctor. The team then adjusted the dose of fentanyl in the syringe pump back down to 100mcg.

61. Our Consultant Adviser told us it is not clear from the records why the Trust felt Mr R had received excessive opioid medication at this time. There is no information in the records to indicate Mr R demonstrated the usual signs of opioid excess such as ‘pinpoint’ pupils or slow breathing.

62. On 5 May, Mr R’s family expressed concerns about the syringe pump, asking why he had become more agitated since the pump commenced. A consultant in palliative medicine explained to the family that a small number of patients can require more medication to manage distress effectively and recommended a review of Mr R’s syringe pump and an increase in medication to alleviate his distress. Sadly, Mr R died before his syringe pump could be reviewed or his medication increased.

63. An important consideration in guiding prescribing decisions is the patient’s reported pain level. A patient symptom observation chart is a tool used to record and monitor a patient’s symptoms and comfort levels in a way that focuses on the patient’s own experience. For pain assessment, if the patient is alert and orientated, they should be asked to score their pain on a scale.

64. The chart uses a scale and colour coding with 0 on the scale meaning no pain and 10 meaning worst possible pain as follows:

•0-2 (none or mild pain) – green – no urgent action needed •3 -6 (moderate pain) – amber – may need intervention •7-10 (severe pain) – red – requires prompt action.

65. The Trust uses this tool and symptom observation charts to help balance effective pain control. The nursing team commenced a daily symptom observation chart for Mr R on 29 April, using ticks in the appropriate box. However, the charts are not fully completed, have significant gaps and do not contain any pain scores to show the level of Mr R’s pain at various times.

66. As a result, it is difficult to determine from the records how the Trust monitored Mr R’s pain level, or the precise level of pain he was experiencing at any given time. It is also difficult to understand the circumstances which prompted the Trust to adjust the dose of fentanyl back to 100mcg provided to Mr R through the syringe pump.

67. Our Consultant Adviser says it is possible that if Mr R’s pain was more closely and accurately recorded then his syringe pump dose may have been adjusted better to manage his pain.

68. We think it is more likely than not that Mr R’s pain was not consistently monitored in line with NICE guideline CG140. The daily observation charts contain gaps, including the absence of pain scores, making it unclear how his pain was assessed or managed. As a result, it is reasonable to conclude that he may not have received adequate pain relief at all times to manage his pain and agitation, and that adjustments to his syringe pump may have been needed.

69. We will uphold this aspect of Miss R’s complaint.

Catheter

70. Miss R complains the Trust reinserted a catheter into Mr R’s bladder without first consulting her or a family member.

71. Mr R was catheterised in the ED on 29 April when he was found to be in urinary retention. He had a significant amount of urine in his bladder, approximately 800mls and was unable to pass it naturally.

72. On 30 April, his family asked for it to be removed as Mr R was pulling at it. The nursing team explained the benefits and the risks of removing his catheter.

73. On 3 May, Mr R was agitated. A palliative care nurse assessed him and noted he was in discomfort when pressure was applied to his lower abdomen. A bladder scan was conducted and showed he had urinary retention.

74. To relieve potential pain and discomfort, a catheter was inserted into Mr R’s bladder. The urine output was 500mls. The normal urinary bladder can hold approximately 300mls of urine before one has the feeling that one needs to pass urine, a volume above this indicates urinary retention and this feeling can be uncomfortable.

75. A doctor assessed Mr R after the catheter was reinserted. The doctor noted that although Mr R was still agitated, he did not appear to be in pain at this time and he was not indicating any urinary discomfort.

76. Our Nursing Adviser told us if he had not been catheterised or this had been further delayed this would have led to further agitation and distress for Mr R.

77. RCN guideline for catheter care states health care professionals must ensure that catheterisation is based on a balanced decision with more benefits than disadvantages and in consultation with the patient, where possible.

78. The clinical team are responsible for making timely decisions based on a patient’s immediate needs. Miss R says the clinical team did not speak to her about re-inserting a catheter into her father’s bladder.

79. Our Consultant Adviser told us the ward team made a clinically appropriate decision to insert a catheter to alleviate distress. While it is recognised that catheterisation can be uncomfortable, the benefits outweighed the harm of added distress. The medical team made a decision in his best interest and did not need to consult with the family.

80. Our view is that clinicians did not need to consult Mr R’s family before reinserting a catheter and did so to alleviate his discomfort in accordance with RCN guideline.

1. Miss R complains about several issues during her father, Mr R, inpatient admission at the Trust between 29 April 2023 and 5 May 2023. Mr R very sadly died on the 5 May 2023. We extend our condolences to Miss R and recognise these events continue to cause her and her family significant upset and distress.

2. We have identified two failings in Mr R’s care following his admission to the Trust. The Trust did not adequately monitor and record his pain levels, which may have impacted adjustments to his fentanyl dose administered through a syringe pump and the Trust did not provide him with adequate mouthcare. We will uphold these parts of Miss R’s complaint.

3. The evidence shows that whilst there were some failings in the care provided, we cannot say that the Trust’s actions contributed to or caused his sad death.

4. We have found the Trust acted appropriately in inserting a catheter into Mr R’s bladder without prior consultation with family members. We have also found the Trust did not fail to provide him with hydration. We will not uphold these parts of the complaint.

5. We will partly-uphold this complaint and have outlined the recommendations we will make at the end of this report. These include service improvements and action taken to ensure these events do not happen in the future.