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East Suffolk and North Essex NHS Foundation Trust

P-001418 · Report · Decision date: 16 June 2022 · View East Suffolk and North Essex NHS Foundation Trust scorecard
Communication Record keeping and management Treatment Choice and Consent Care plan failures
Complaint (AI summary)
Mr L complained the Trust reduced his COVID-19 father's oxygen and stopped antibiotics, commenced palliative care against his will, and failed to include the family in important discussions or provide vital information.
Outcome (AI summary)
The complaint was upheld. While some clinical decisions aligned with national guidance, there were likely failings concerning communication with the family and their involvement in end-of-life care decisions.

Full decision details

The Complaint

14. Mr L complains about the following aspects of care the Trust provided to his late father, Mr A, in March and April 2020: • his father (who had COVID-19) deteriorated on 31 March, but the clinical team advised against Intensive Care Unit (ICU) interventions and kept him on ward-based care • on 31 March, the clinical team reduced his father’s oxygen therapy, despite him having shown improvements • on 1 April, the clinical team stopped his father’s antibiotics and oxygen to help fight his infection • the clinical team commenced his father on palliative care and a syringe driver against his father’s will • the clinical team did not give vital information to the family which prevented them from questioning his father’s care. He says the clinical team did not include the family in important discussions about end-of-life care and placed a DNAR order in his father’s records without discussion. He also complains about poor communication when he went to visit his father towards the end of his life. He says nurses advised him against entering the ward due to lack of Personal Protective Equipment (PPE) but told his father he was downstairs and going to visit.

• Mr L says there is no record of the time his father died or if someone was with him at the end of his life.

15. Mr L feels that if his father had better care, he may not have died when he did. He says he is devastated by his father dying alone with no one at his side. He said the poor communication was stressful and made the situation more difficult. He says the poor record keeping also leaves him with unanswered questions.

16. Mr L would like to know the truth of what happened. He would also like service improvements and financial compensation.

Background

17. Mr A was over 80 years old. He lived with his other son and was independent. He had high cholesterol, but otherwise had no other underlying medical conditions.

18. On 29 March 2020, an ambulance took Mr A to A&E. He had been feeling generally unwell for a week. He had been unable to get out of bed and had not been eating or drinking. The paramedics noted his other son, who he had been isolating with, had been in contact with a confirmed COVID-19 patient two weeks earlier.

19. In A&E, Mr A had a chest X-ray which suggested he had an underlying infection. The A&E team noted they suspected he had COVID-19 and referred him to the medical team.

20. On 30 March, Mr A had a swab for COVID-19 and the clinical team commenced him on antibiotics for a possible secondary bacterial infection. He was also receiving oxygen. By the evening of the same day, the medical team noted he had deteriorated.

21. Following a discussion with the ICU team, the medical team decided Mr A should not receive further active treatment. Mr A sadly died in the early hours of 2 April.

Findings

Decision against ICU interventions

25. Mr L complains his father deteriorated on 31 March, but the clinical team advised against ICU interventions and kept him on ward-based care. We understand why the decision not to provide further treatment to his father has been highly distressing for Mr L.

The NICE guideline 159 and NHS England guidance

26. We have considered the national guidance regarding the treatment of COVID-19, which was in place at the time of these events. It is important to note that Mr A was admitted to hospital during the early stages of the COVID-19 pandemic.

27. At this time, national guidelines on the treatment of the virus were only just being developed and were changing frequently. The guidance outlined below was only issued a short time before Mr A was admitted to hospital.

28. NICE guideline 159 provided advice to doctors around patients with COVID-19 who required critical care. This guideline said that on admission to hospital, doctors should assess patients for frailty using the clinical frailty scale (CFS) as well as considering comorbidities and underlying health conditions of the patient.

29. It said staff should discuss the risks, benefits, and possible likely outcomes of the different treatment options with patients, families, and carers. This would allow them to make decisions about their treatment wherever possible.

30. It also said staff should involve the critical care team in discussions about admission to critical care if: • the frailty assessment suggests the person is less frail (for example if they have a CFS score of less than five) and they are likely to benefit from critical care support, or • if the assessment suggests they are frail and there is uncertainty regarding the likely benefit of critical care organ support.

31. It said to consider the impact of underlying conditions, comorbidities, and the severity of the acute illness on the likelihood of critical care treatment being beneficial. It said to base decisions on admission to critical care on the likelihood of the patient’s recovery.

32. The NHS England guidance also outlines three levels of care for COVID-19. These are: • ‘level 1’ which involves delivering oxygen therapy, usually on a ward • ‘level 2’ where single organ support is given usually on a high dependency or respiratory support unit. This can include CPAP or high-flow nasal oxygen (HFNO) therapy (a type of respiratory support where warmed and humidified oxygen is delivered to the patient). However, the guidance advises against the use of HFNO stating it has no survival benefit compared to level 1 care treatment • ‘level 3’ which involves mechanical ventilation in ICU.

33. At the time Mr A was in hospital, it appears clinical staff at the Trust were delivering level 2 care in ICU. The Trust explained that at the time of the events, it was not able to provide level 2 care outside of ICU. It said its respiratory support unit had not been developed at this stage.

Decision regarding mechanical ventilation

34. We can see that in line with NICE guideline 159, the ICU assessed Mr A on 30 March at 6:30pm. They documented he was a fit and well for his age and that his exercise capacity had been good before he developed symptoms. They noted he was stable and speaking in sentences.

35. The ICU consultant noted Mr A should remain on ward-based care. They noted the ICU team should review him again if he deteriorated. They also noted the outcome was likely to be poor for Mr A if he required mechanical ventilation.

36. Our adviser said this decision was in line with his symptoms and observations at that time. Taking this advice into account, we have found this decision was in line with NICE guideline 159.

37. On 31 March at 1am, a medical doctor noted they spoke to a different ICU doctor over the phone. The ICU consultant did not come to see Mr A in person. Our adviser said the ICU consultant (or a member of the ICU team) should have come to see Mr A in person at this stage. This is because the previous ICU consultant who saw him had said the ICU team should review him again if he deteriorated further.

38. The medical doctor noted the ICU consultant advised the outcome of ventilation is worse in patients of a higher age. They noted Mr A was in a good condition before his hospital admission. However, they noted that in the ‘current situation’ he was not to receive invasive ventilatory support or non-invasive ventilation (NIV). NIV involves delivering oxygen to a patient through a mask.

39. Our adviser explained that NIV is not the same as the level 2 treatments outlined in paragraph 28 (CPAP and HFNO). However, they said the doctor might have been referring to level 2 care treatments when using the term ‘NIV’ and using it as an umbrella term.

40. It is not clear from the notes what the ICU consultant meant by noting Mr A was not for invasive ventilatory support in ‘the current situation’. It is not clear if the doctor was referring to the current clinical situation or the overall situation presented by the pandemic and the resource limitation in the hospital. We acknowledge this was an unprecedented situation for NHS hospitals and resources were stretched.

41. Our adviser said the resource limitation should not have been a factor in deciding if someone should receive ICU care. They explained that if a patient requires ICU care, but a bed is not available, the hospital should consider approaching other hospital Trusts.

42. As outlined above, the NICE guideline 139 says that when reaching decisions about whether to continue with treatment, the clinicians should take account of the patient’s clinical frailty and comorbidities.

43. We can see no evidence the clinical team formally assessed Mr A for frailty at any stage. We acknowledge the NICE guideline 139 had only been in place for ten days at this point though. This means the Trust had not had long to begin implementing this guidance. However, our adviser said Mr L’s CFS score would have been a ‘2’ which meant he was ‘well’. He had no comorbidities and his pre-hospital state had been good.

44. Our adviser said the only risk factor for Mr L’s father was his age as he was over 80 years old. The later published Intensive Care Society guidance suggested the chance of intensive care survival for a patient with COVID-19 was 33% if the patient was over 80.

45. On the balance of probabilities, it was likely Mr L’s father would not have survived invasive ventilation. The Trust’s decision not to move to this treatment is therefore in line with the NICE guideline 159. This says clinicians should base decisions to admit patients to critical care on the likelihood of the patient’s recovery.

CPAP treatment

46. Regarding non-invasive ventilation devices, the NHS England guidance in place at the time said: • use of CPAP or NIV should be confined to short periods using a well-fitting interface as a bridge to invasive ventilation • for some patients, NIV will form the appropriate ceiling of care.

47. Initially, our adviser said this means the clinical team should still have considered CPAP treatment for Mr A as a ‘ceiling of care’. A ceiling of care is the maximum level of care which a patient should receive.

48. The Trust explained the NHS England guidance was only published a short time before Mr A was admitted to hospital. The Trust explained that, at the time, it had not had all its CPAP equipment delivered. In addition, that even implementing guidelines which involve no equipment still require the creation of a locally implemented policy which requires approval. It also said it required communication to and upskilling of staff. On this basis, our adviser felt it was reasonable the Trust had not implemented level 2 care with CPAP treatment at the time.

49. The Trust also explained that at the start of the pandemic it had set up a clinical reference group (CRG) of executive managers and clinical leaders who held meetings twice weekly throughout the first wave of the pandemic. It explained it had a team reviewing guidelines daily and presenting them to the CRG for discussion, approval, and rapid implementation.

50. Taking into account this advice and the Trust’s comments, we conclude there was not a failing here. This is because guidance for COVID-19 was issued rapidly, and the Trust would not have had any advance notice of what the guidance would include. As such, we cannot have expected the Trust to begin implementing the guidance immediately.

51. We can see from the Trust’s explanation it was taking appropriate steps to ensure it was complying with the changing guidance. Once the NHS England guidance was issued, the Trust only had a short period of time to implement it before Mr A was admitted to hospital. During this time, it did not have all the specialist equipment it needed to deliver this care.

52. The Trust has explained that following the arrival of the equipment it developed capacity for level 2 care outside of ICU and that it was able to successfully deploy this for all subsequent COVID-19 waves. We recognise this does not change things for Mr L or his father. However, we hope this provides Mr L with some reassurance the Trust has taken action to ensure it is providing treatment for COVID-19 in line with the latest national guidance.

X-ray and prone position

53. We have identified some areas of concern regarding the care the Trust provided to Mr A at the time.

54. GMC Good Medical Practice says when doctors are assessing, diagnosing, or treating patients, they must arrange suitable advice, investigations, or treatments where necessary.

55. We can see the clinical team only took one chest X-ray for Mr A on 29 March. This did not show any changes consistent with COVID-19 infection. Our adviser said the clinical team should have taken a repeat X-ray for Mr A, around 31 March, when he began to deteriorate. This would have helped the clinical team decide if he would benefit from further treatment. Not doing this was not in line with the GMC guidance.

56. However, we cannot conclude this failing would have altered the treatment Mr A received. This is because Mr A would not have benefited from mechanical ventilation and CPAP treatment was not available in the hospital at that point either.

57. We have also seen no evidence the clinical team considered lying Mr A in the ‘prone’ position. This is a recognised treatment for people who will not benefit from further treatment and could have been used to help stabilise Mr A.

58. Again, the NHS England guidance recommending the prone position had only been published on 14 March, a short time before Mr A was admitted. Our adviser explained that although this treatment would not require any specialist equipment, it can depend on factors such as experience and training of staff.

59. Our adviser accepted that implementing the guidance within two weeks was a short timeframe and so they did not feel we could be too critical of the Trust for not implementing this treatment at the time.

60. We have taken account of the Trust’s comments regarding the limited time it had to implement the guidance as well as the comments from our adviser. We agree that not implementing proning at this early stage of the pandemic does not amount to an overall failing.

Oxygen

61. Mr L complains that on 31 March, the clinical team reduced his father’s oxygen therapy, despite him having shown improvements.

62. The NHS England guidance says the clinical team should provide oxygen therapy and aim for oxygen saturation levels (the percentage of oxygen in a person’s blood) of between 92 and 96 percent. The guidance says the target may be lower in some patient groups.

63. We have not seen any evidence the Trust reduced the oxygen therapy for Mr A on 31 March. We can see there are two treatment escalation plans within his records. One says his target rate for his oxygen saturations were 94 percent. Later, the medical notes say his target was 88 percent and above.

64. The nursing records show that nurses gave Mr A 15 litres of oxygen per minute continuously on 31 March. Our adviser explained this was the maximum amount. Our adviser said the nurses measured his oxygen saturation range and they were in the target range at this time.

65. We have not seen any evidence the Trust stopped providing oxygen to Mr A on 31 March. As such, we have not identified any failings here.

Antibiotics and oxygen

66. Mr L complains that on 1 April, the clinical team stopped his father’s antibiotics and oxygen to help fight his infection.

Oxygen therapy

67. We can see that on 1 April, Mr A experienced a dip in his oxygen saturation levels. At 2am they fell to 88 percent and at 5:18am they fell further to 70 percent.

68. Our adviser said the documentation regarding oxygen stops halfway through 1 April. However, despite this there is still no evidence the clinical team stopped giving oxygen to Mr A at this time. The Trust said in the complaint response that it continued to give this up to Mr A’s death.

69. Our adviser explained the documentation likely stopped because nurses often stop taking observations towards the end of the patient’s life. This is to avoid causing the patient any additional distress.

70. On the balance or probabilities, it is likely the nursing staff continued to give oxygen to Mr A during this time. We cannot see any evidence anyone made a clinical decision to stop this treatment. The nurses caring for Mr A have also said they continued to give him oxygen up to his death. We have not identified any failings here as this was in line with the NHS England guidance.

Antibiotics

71. We can see from the drugs chart, doctors prescribed Mr A two antibiotics. The first was co-amoxiclav which the doctors prescribed three times a day. The second antibiotic was clarithromycin which the doctors prescribed twice daily. Our adviser said the records show nurses gave both antibiotics up to 1 April but then appear to have stopped.

72. NICE guideline 31 says that when a patient is entering their last days of life, doctors should review their current medications. They should have a discussion with the patient and stop any previously prescribed medicines that are not providing symptomatic benefit.

73. By 1 April, the doctors treating Mr A recognised he may be approaching the end of his life. Our adviser also explained doctors usually only give antibiotics to patients with COVID-19 as a precaution to treat possible secondary bacterial infections. As such, the antibiotics were not providing any symptomatic relief to Mr A, nor were they beneficial to his condition.

74. We have not identified any failings in relation to this area of the complaint as the Trust acted in line with national guidance by stopping the antibiotics.

Palliative care and syringe driver

75. Mr L complains the clinical team commenced his father on palliative care and a syringe driver against his father’s will.

Syringe driver

76. The GMC guidance says doctors should ensure they have consent or valid authority before carrying out any examinations or investigations or when providing treatment.

77. Mr L tells us his father advised him he had informed the nurses he did not want a syringe driver. Mr L also tells us a nurse had advised him his father had refused the syringe driver they were trying to fit and had pulled it out.

78. In the morning of 1 April, we can see a palliative care doctor noted ‘feels better since dose of morphine at 6am’ and ‘agreed to syringe driver to keep him comfortable’.

79. In the nursing notes from later that day, a nurse documented that the ward doctor had advised to give midazolam and morphine through a syringe driver. Shortly afterwards, the nurse noted they had started the syringe driver.

80. That evening the nurse entered a further note saying ‘stopped syringe driver as patient does not want to have it anymore’.

81. We recognise there is a discrepancy between what Mr L recollects his father telling him and what is documented in the medical records.

82. We have carefully considered all the information we have seen. We cannot robustly conclude that nurses forced Mr L to have the syringe driver against his will. There is no documentation to support this occurred but there is documentation which supports that Mr A initially agreed to the syringe driver.

83. Although we have considered what Mr L has told us, Mr L was not present at the time of the events and so he is only able to provide a second-hand account.

84. In addition, we can see the medical records show the clinical team respected Mr L’s wishes once it became clear he did not want the syringe driver. They prescribed medication on an as required basis instead only a matter of hours after the syringe driver was started.

85. We have found the clinical team acted in line with GMC guidance. We have not identified any failings here.

Palliative care

86. NICE guideline 31 says that if a person is entering the last days of life, the clinical team should discuss the persons goals and wishes with them, as well as the views of those important to the person about future care.

87. The guidance says the clinical team should discuss the dying person’s prognosis with them as soon as it is recognised they may be entering their last days of life.

88. We can see that following the review from the ICU consultant on 31 March, the medical consultant documented they had not discussed the decision not to provide further treatment with Mr A. They documented this was because they did not want to distress him due to his current health status and time of day. They documented they may need to discuss it with him the following day.

89. On the morning of 31 March, a doctor documented they discussed a DNAR decision with Mr A. A further discussion took place with him on the morning of 1 April. A doctor explained to him that he was very unwell, that there was nothing further they could do for him, and that he was likely to die.

90. We can see evidence Mr A was understandably upset when the doctor told him he was dying. The clinical team subsequently commenced him on a palliative care plan.

91. Although the clinical team did not discuss the decision to commence end of life care with Mr A initially (due to the time of day and his current clinical condition), a doctor discussed this with him a short time later. We consider the Trust acted in line with the NICE guideline here.

Communication

Discussions about end-of-life care and DNAR order

92. Mr L complains the clinical team did not give vital information to the family which prevented them from questioning his father’s care. He says the clinical team did not include the family in important discussions about end-of-life care and placed a DNAR order in his father’s records without discussion.

93. As outlined earlier, NICE guideline 31 says that in the last days of life, the clinical team should discuss the persons goals and wishes with them as well as the views of those important to the person about future care.

94. We can see that around the time of decision making, Mr A’s other son (who was the documented next of kin) was also in hospital with COVID-19. Mr L was at home but could not visit due to visiting restrictions.

95. In the early hours of 31 March, when the clinical team made the decision not to provide further treatment, the doctor noted they could not discuss it with family. This was because one of the sons was in hospital and they did not have the contact number for the other. We also acknowledge this occurred in the early hours of the morning and so it would not have been appropriate to contact the family at that time.

96. Later that morning of 31 March, a doctor discussed a DNAR decision with Mr A. Following the discussion, they completed a DNAR order form. In the DNAR form, the doctor ticked ‘no’ on the part of the form that asked if the decision had been discussed with the family. There was a box beneath this question to explain why it had not been discussed but the doctor left this blank.

97. Early on 1 April, a doctor discussed the decision not to provide further treatment with Mr A. A doctor left a further note saying that they needed to discuss it with his family. They documented that they would go to the ward where his other son was staying to inform him.

98. Shortly afterwards, a doctor noted they discussed the decision with Mr L over the phone.

99. There are therefore numerous occasions where the clinical team recognised that a discussion with the family needed to happen, but it did not happen until 1 April.

100. We acknowledge the Trust were under incredible pressure at the time and the restrictions in visiting may have contributed to this not happening. We also acknowledge the next of kin was in hospital being treated for COVID-19 and there were some difficulties in contacting Mr L due to not having his contact telephone number initially.

101. Although ideally these discussions should have taken place prior to decisions being made, if Mr L’s father had wanted this, we recognise there were several factors which contributed to this not happening. In addition, we note there were discussions about the decisions the following day, which is not a significant delay. As such, we conclude there was not an overall failing in communication here.

Poor communication when visiting

102. Mr L also complains about poor communication when he went to visit his father towards the end of his life. He says a consultant advised him against entering the ward due to lack of PPE but told his father he was downstairs and going to visit.

103. The Trust explained in its complaint response that its policy during the COVID-19 pandemic for patients nearing the end of life was to allow one visitor to see the patient. As such, in line with its own policy, we would have expected the Trust to have allowed Mr L to visit his father and to have PPE available to him to allow him to do so.

104. We can see that instead it seems Mr L was encouraged to stay away from the hospital. At the same time, it seems a consultant told his father he was downstairs waiting to visit. This was not in line with GMC guidance which says doctors should communicate effectively. We consider this to be a failing which the Trust already appear to have accepted.

105. We can see that telling Mr L one thing and his father another was very upsetting to Mr L. He has been left distressed knowing his father believed he was about to visit due to the Trust’s poor communication.

106. We can see the Trust has apologised to Mr L for the distress this caused him. It has also explained it had discussed the incident with staff during a staff session and during the daily safety huddle discussions. However, we have made an additional recommendation to the Trust in recognition of the distress this incident caused Mr L.

Record keeping

107. Mr L says there is no record of the time his father died or if someone was with him at the end of his life.

108. GMC Good Medical Practice says: • documents you make (including clinical records) to formally record your work must be clear, accurate and legible • you should make records at the same time as the events you are recording or as soon as possible afterwards • clinical records should include who is making the record and when.

109. The NMC Code also says nurses should keep clear and accurate records and should complete them at the time or as soon as possible after an event.

110. In line with this guidance, we would have expected the doctors and nurses caring for Mr A to have documented the time he died and whether anyone was present with him or not.

111. After 6:30pm on 1 April, there is little documentation from the doctors or nurses regarding Mr A. In the early hours of 2 April, a doctor noted that Mr A had sadly died and that they had informed Mr L and his brother. A doctor then verified the death an hour later.

112. It is not clear from this note what time Mr A died. There are no corresponding nursing notes around this time which show if anyone had been with Mr A or who had found him.

113. Our overall view is the record keeping leading up to and at the time of Mr A’s death is poor. We consider this to be a failing. We can see this leaves Mr L with unanswered questions around the circumstances of his father’s death and that this is a source of distress to him.

114. We can see the Trust has already apologised to Mr L for the impact this has had. We have made additional recommendations to the Trust to recognise the impact of this on Mr L and to help prevent similar mistakes happening again.

Our Decision

1. We have considered Mr L’s complaint about the care provided to his late father, Mr A. This report sets out the findings of our investigation.

2. We were very sorry to hear Mr A sadly died from COVID-19. We can see the death of his father has had a devastating impact on Mr L.

3. We consider the Trust’s decision not to provide mechanical ventilation to Mr A was in line with national guidance. The evidence we have seen suggests mechanical ventilation is unlikely to have been beneficial to him.

4. Continuous Positive Airway Pressure (CPAP) treatment may have been beneficial to Mr A. This is where a device is used to keep airways open and improve breathing. However, we found that not providing this treatment does not amount to a failing.

5. This is because the national guidance recommending this treatment was only published a short time before Mr A was admitted to hospital. The Trust explained it only had a very short amount of time to implement this guidance and also did not have all the necessary equipment. We recognise this information will be upsetting for Mr L.

6. Similarly, we found the Trust did not place Mr L’s father in the prone position. However, again, due to the guidance advising this treatment only being published shortly before the time of events, we do not consider this was a failing either.

7. We did have some concerns the Trust did not request a further X-ray for Mr L’s father. However, we cannot conclude this had any impact on his treatment pathway.

8. We have not found the Trust stopped Mr A’s oxygen therapy on either 31 March or 1 April 2020. We have also found the decision to stop antibiotics on 1 April was in line with national guidance as Mr A was approaching the end of his life. We do not uphold these aspects of the complaint.

9. We have not found the Trust started Mr A on palliative care or on a syringe driver against his will. We do not uphold these complaints.

10. We have found no failings in how the Trust communicated with Mr L about his father’s care. This includes its decisions about end-of-life care and about the Do Not Attempt Resuscitation (DNAR) Order.

11. We found the Trust poorly communicated with Mr L and his father when he tried to visit towards the end of his father’s life. We can see this caused distress to Mr L at an already difficult time. We will uphold this part of the complaint.

12. Finally, we found the Trust’s record keeping, prior to the death of Mr L’s father, was poor. This has caused Mr L uncertainty around the circumstances leading to his father’s death which is an additional source of distress for him. We uphold this aspect of the complaint.

13. Our overall decision is to partly uphold this complaint. We have found failings in relation to some areas of the complaint and not others. Where we have found failings, we have made some recommendations to the Trust to address these. We have asked the Trust to explain how it will improve its service and to pay Mr L £500 in recognition of the impact these failings had on him.

Recommendations

115. Our principles say that public organisations should look for continuous improvement and should use the lessons learnt from complaints to make sure they do not repeat maladministration or poor service. In line with this, we recommend the Trust should explain what it has been doing differently, or what it will do differently in future to address the failure in record keeping towards the end of Mr A’s life.

116. Our principles state that public organisations should put things right and, if possible, return the person affected to the position they would have been in if the poor service had not occurred. If that is not possible, they should compensate them appropriately.

117. To decide on a level of financial remedy, we review similar cases where the person has experienced similar injustice, along with our severity of injustice scale. Following this review, we recommend the Trust should pay Mr L £500.

118. This payment is to acknowledge the stress and uncertainty the Trust caused him due to its failings in communication and record keeping.

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