Mr P’s care and treatment in the ED
Mr P’s clinical care and treatment:
15. Dr P says an ED doctor initially diagnosed a chest infection. He says he and his wife told the doctor Mr P had not had a fever or cough. He complains the doctor ignored them and their diagnosis was later proved incorrect. He also complains he asked the ED doctor if a respiratory specialist could see Mr P, but this did not happen until days later.
16. The Trust kept Mr P in the ED overnight and tried non-invasive ventilation or ‘NIV’ (the delivery of positive airway pressure to assist breathing). Dr P says Mr P used the mask for several hours at a time and maintained his oxygen level. He also says Mr P did not like the tight fit of the mask so only accepted it intermittently.
17. Looking at Mr P’s clinical records, we can see he attended the ED at 3.04pm and was triaged at 3.12pm. His respiratory rate was 20 breaths/min (normal), blood pressure 137/80 mmHg (high), and oxygen saturation level 75% (low). We understand Mr P was usually on 2 litres of oxygen with saturations in the high 80s.
18. A speciality doctor in emergency medicine reviewed Mr P at 3.30pm. They noted he was tired, short of breath, and his breathing was rapid and shallow. His oxygen saturation level was still 75% but it improved to 92% on 5 litres of oxygen. They also noted he had bi-basal crackles on examination which can be a sign of infection.
19. The doctor’s working diagnosis included community acquired pneumonia (chest infection). We find this reasonable as Mr P had a low oxygen saturation level, reduced air entry and chest crackles on examination. The NICE chest infection CKS says these symptoms can be found in patients with pneumonia.
20. The doctor’s working diagnosis also included pulmonary embolism. We find this reasonable as well as Mr P previously had a pulmonary embolism. The NICE pulmonary embolism CKS says there is a lifelong risk of recurrence with around 25% of people with a pulmonary embolism having had a previous event.
21. The doctor requested blood tests, a chest X-ray, arterial blood gas (ABG) and an electrocardiogram (ECG). An ABG measures the levels of oxygen, carbon dioxide, bicarbonate and pH in the blood. An ECG measures the electrical impulses of the heart. Our ED adviser said the doctor requested appropriate investigations.
22. The doctor also prescribed Mr P intravenous (IV) antibiotics and nursing staff gave him co-amoxiclav and clarithromycin (broad spectrum antibiotics used to treat various bacterial infections) at 4.32pm. Our ED adviser said EDs usually start treatment while investigations are ongoing to prevent delays.
23. Mr P had an ABG at 4.16pm and an ECG at 4.42pm. Another doctor then reviewed him at 5pm. They noted he was no longer visibly short of breath, his oxygen saturation level was 91% on 5 litres of oxygen, and a chest X-ray showed right sided consolidation. They requested a COVID-19 test and slow IV fluids.
24. Consolidation on a chest X-ray indicates air in the small air sacs in the lungs is replaced by fluid, pus, blood or another substance. The BTS guidelines say consolidation on a chest X-ray is suggestive of pneumonia which supports the Trust’s working diagnosis. The Trust did a further ABG at 5.34pm.
25. A consultant then saw Mr P at 6.30pm. They noted he reported no symptoms, but his parents said he had severe lethargy and was sleeping for 22 hours a day. The consultant also noted he had mild oedema (swelling) in both legs. Their working diagnosis was worsening type two respiratory failure and possible community acquired pneumonia.
26. The consultant requested a repeat ABG and asked nursing staff to place Mr P on a venturi mask (a mask that covers the mouth and nose) with an oxygen saturation target of 88-92%. They also said Mr P was for full escalation were his condition to deteriorate. The Trust then did ABGs at 11.53pm and 12.05am (day two).
27. A medical registrar reviewed Mr P at 12.30am. He was on 3.5 litres of oxygen via nasal prongs with oxygen saturation levels of 89-96%. They noted Mr P had poor compliance with his at-home oxygen and had been on NIV in the past but did not like it and was not keen to try it again.
28. The registrar thought Mr P had worsening type two respiratory failure and possibly obesity hypoventilation syndrome (a breathing disorder in obese people where they have excess carbon dioxide and insufficient oxygen). They asked nursing staff to try a venturi mask, give saline and salbutamol nebulisers (to open the airways) and do a repeat ABG.
29. The registrar felt Mr P should be referred to critical care to determine the ceiling of his care in case he deteriorated. They then saw him again at 12.55am. The notes say he was refusing to wear his venturi mask, so they explained the importance of oxygen therapy. However, he could not tell them why he needed it though they explained several times.
30. The registrar felt Mr P was unable to weigh up the pros and cons of oxygen treatment. They were concerned he was not tolerating oxygen options and would likely not do well on NIV based on his objections. They therefore asked a registrar in critical care to review him as they felt he could deteriorate at any time.
31. The critical care registrar reviewed Mr P at 1.30am. They said he should be moved to NIV if his condition deteriorated but noted compliance might be a problem. They said ventilation should be a last resort as his co-morbidities would make weaning him off this extremely difficult.
32. The critical care registrar noted Mr P was responsive to simple explanations and encouragement to keep his venturi mask on, but this needed constant reiteration. They said he did not need a higher level of care at that time but would benefit from one-on-one nursing care to encourage compliance.
33. The medical registrar saw Mr P again at 5.30am following an ABG at 5.28am. They noted he had been tolerating his venturi mask with one-on-one nursing care. The note says it was appropriate to trial NIV though they were expecting compliance to be an issue. They planned to rediscuss Mr P with critical care if NIV was unsuccessful.
34. The registrar then saw Mr P at 6am to explain NIV to him. They noted he became quite agitated when they asked him to explain back what they had told him. They said he was unable to recall any of the details about why NIV was necessary. Mr P then removed his venturi mask and said he wanted a new mask.
35. The registrar did not think Mr P had capacity to decide about NIV. They then telephoned Dr P to explain what had happened overnight. They noted he agreed NIV would be challenging and offered to come to hospital to help. The registrar told Dr P critical care was an option but should be avoided if possible.
36. The registrar’s plan at that stage was to give Mr P nebulisers, continue with the venturi mask, contact critical care to discuss his escalation status, contact next of kin if he became more hypoxic to see if they could persuade him to agree to treatment and to apply Deprivation of Liberty Safeguards (DoLS).
37. DoLS is a legal framework under the Mental Capacity Act 2005. It is designed to protect people who cannot make decisions for themselves. DoLS aims to ensure that when a person is deprived of their liberty in a hospital, it is done lawfully and with appropriate safeguards to protect their rights. The process involves several mandatory assessments.
38. The registrar’s next note is at 8.10am after Dr P and his wife had arrived in hospital. The note says, while Dr P understood the rationale for trialling NIV, he was concerned about intubation. It also says Dr P and his wife agreed to support Mr P to use NIV.
39. The next note is by a different doctor at 9.50am. They noted Mr P’s respiratory rate was 22 (12-20 being normal), his oxygen saturation level 91% on 8 litres of oxygen and his blood pressure 137/99 (high). They said he seemed to be tolerating NIV with reassurance and asked for a repeat ABG. They thought transfer to a ward might be possible.
40. The Trust did an ABG at 11.04am, and the same doctor saw him again at 11.15am. They noted he had been wearing NIV with breaks but had been wearing it for 20 minutes consistently prior to the ABG. They said although his oxygen levels had improved, his ABGs were deteriorating.
41. The doctor thought the deteriorating ABGs, and hypoxia were due to Mr P not using NIV consistently, pneumonia and his obesity. However, they noted Mr P was more compliant with oxygen therapy than he had been earlier that day. They planned to speak with critical care and a respiratory doctor.
42. The doctor’s next note is at 12.20pm. It says Mr P was struggling with compliance though responding to reassurance. It says his oxygen saturation fell to 78% off NIV, increased to 92% on 2 litres of oxygen but then drifted to 86%. It also says his arms were twitching due to carbon dioxide retention. They noted the plan was to move him to critical care.
43. We find the Trust’s decision to trial NIV was appropriate as it is the first-line treatment for respiratory failure. The ABG at 5.28am showed Mr P’s pH was not improving, his carbon dioxide levels were still high, and his oxygen levels low. He had been more compliant with one-on-one care, and his parents were going to support him.
44. NIV should raise pH, reduce carbon dioxide levels and improve oxygen levels. Clinicians would expect to see improvements on a patient’s ABG within 30-60 minutes of being on NIV. At the time of the ABG at 11.04am, Mr P had been on NIV since around 8am with 20 minutes continuous use prior to the ABG.
45. Despite this, Mr P’s ABG results indicated his lungs could not remove enough carbon dioxide from his body leading to increased acidity in the blood. This suggests his body could not meet his respiratory demands and NIV was at risk of failing. This would make a sudden worsening of lung function more likely.
46. Patients with chronic respiratory failure normally have high carbon dioxide levels and a raised bicarbonate. Mr P’s bicarbonate was not very high, but his carbon dioxide was extremely high. This indicates he had an acute rise in carbon dioxide on top of his chronic respiratory issues.
47. The GMC professional standards say doctors must refer a patient to another practitioner when this serves their needs. The Trust’s NIV policy says the failure of NIV to reduce carbon dioxide levels is an indication for referral to critical care. It also says a pH of less than 7.25 (Mr P’s was 7.248 at 11.04am) and new onset confusion are red flags. We therefore find the Trust’s decision to escalate Mr P to critical care appropriate.
48. Overall, we find Mr P’s care and treatment to be in line with relevant guidance. The Trust’s working diagnosis was reasonable, it carried out suitable investigations and started appropriate treatment. It then appropriately responded to Mr P’s worsening condition by trialling NIV and then escalating him to critical care.
49. Looking at Mr P’s ED notes, the Trust triaged him at 3.12pm, doctors saw him at 3.30pm and 5pm and a consultant reviewed him at 6.30pm. The consultant’s note indicates some communication with Mr P’s parents as it says they reported he had severe lethargy and was sleeping 22 hours a day.
50. Doctors saw Mr P at 12.30am, 12:55am, 1.30am, 5.30am, 6am, 8.10am, 9.50am, 11.15am and 12.20pm. The doctor’s notes at 12.55am, 1.30am and 6am detail conversations with Mr P about his condition and treatment. We have already outlined these above.
51. We can also see a nurse contacted Dr P with an update on Mr P’s condition at 1.55am. The doctor’s notes at 6am, 8.10am and 9.50am then detail further conversations with Dr P about his Mr P’s condition and what the plan was at each of those times.
52. We find the Trust’s communication to be in line with GMC professional standards. These say doctors must give patients the information they want or need to know in a way they understand. They also say doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
The Trust’s capacity assessment:
53. Dr P says Mr P had capacity and the Trust is relying on a capacity assessment that is not dated or signed.
54. We can see this assessment within Mr P’s ED records. It is handwritten, and the writing matches the medical registrar who saw him on the first evening. The assessment says he was unable to understand or retain/weigh up information about oxygen therapy due to hypoxia and possible delirium. This reflects the registrar’s note at 12.55am on day two of Mr P's admission.
55. We find the Trust’s capacity assessment is in line with the RCEM guideline. This says a person lacks capacity if they have an impairment of the mind which means they are unable to make a particular decision. It says a person is unable to make a decision if they cannot understand, retain or use information or communicate their decision.
56. Mr P’s ABG results around the time of the capacity assessment show his oxygen levels were low (lower than they were on admission) and he was still significantly retaining carbon dioxide. This indicates he was hypoxic. The NEWS charts from that evening also say Mr P was confused at 2am, 2.30am and 3am.
57. The registrar’s notes say Mr P could not retain information, understand the importance of oxygen therapy or weigh up the pros and cons of treatment. He also refused to wear his venturi mask at times. This led the registrar to complete the assessment which found he lacked capacity in relation to NIV at that point in time.
58. Following the assessment, the registrar continued to try Mr P with a venturi mask before contacting Dr P at 6am to tell him they wanted to trial NIV. Dr P and his wife then came to the hospital to help support Mr P to comply with his treatment. We understand the registrar moved Mr P to NIV at around 8am.
59. It is important to recognise the capacity assessment was completed for a specific purpose. It was to assess Mr P’s ability to make a decision about oxygen therapy at that point in time. We find the Trust’s decision that Mr P lacked capacity to make a decision on NIV was reasonable.
60. Patients with carbon dioxide retention and low oxygen levels often have impaired cognition. High carbon dioxide levels can cause reduced attention, poor insight, agitation, oxygen mask intolerance and drowsiness. This can in turn lead to patients being unable to process information given to them about why they need oxygen therapy.
Mr P’s care and treatment in critical care
The Trust’s decision to sedate and ventilate Mr P on day two:
61. Dr P says he and his wife walked to critical care behind Mr P who was being wheeled on a hospital bed. He says Mr P was not distressed and was alert and talking to them normally. He says Dr A (a consultant in intensive care) spoke with him and his wife on their way to critical care while they were briefly separated from Mr P.
62. Dr P says Dr A told them he wanted to sedate and ventilate Mr P for a short period. He says Dr A said this was to ‘blow off’ some of the carbon dioxide Mr P was retaining and investigate his infection as well as any other cause of his respiratory failure. Dr P says he expressed concern this was dangerous for patients in Mr P’s condition.
63. Dr P says Dr A said they would wake Mr P up after a short period of hours or days so they could consider other options to help him. Dr P says they then arrived in critical care to find Mr P surrounded by around ten members of staff with the staff all shouting at Mr P at the same time.
64. Dr P says Mr P was scared and refusing to be sedated and ventilated. He says Mr P dressed himself and told staff he had power of attorney and was going home. He says staff asked Mr P questions to check his capacity and he answered them correctly. He says he heard staff conclude Mr P had capacity and they could not detain him against his will.
65. Dr P says Mr P then went to leave but security staff stopped him and he returned to his bed space in critical care. He says staff then sedated and ventilated Mr P. He says Mr P did not consent to this and he was intimidated into accepting this treatment against his will.
66. In its complaint response, the Trust said Mr P became agitated soon after moving to critical care and removed his breathing mask. It said staff tried to discuss his treatment plan with him multiple times, but he remained agitated and then disconnected all his monitoring equipment. It said Dr P and his wife were also unable to reason with him.
67. The Trust said Mr P was breathless and unsteady. It said he eventually agreed staff could check his oxygen saturation level using a finger probe and it was 69%. It said this showed he was grossly hypoxic and was therefore likely to be cognitively impaired. It said he tried to leave critical care and security attended to support clinical staff.
68. The Trust said Mr P then became calmer and returned to his bedspace. It said the critical care team spoke with Dr P and his wife and made a joint decision to intubate Mr P to enable investigation and controlled respiratory support. It said the DoLS process was superseded by the clinician’s duty of care.
69. We have seen staff statements taken by the Trust during its investigation of Dr P’s complaint. These include the following staff present at the time Mr P was admitted to critical care and sedated: Dr A, Dr B (a consultant in intensive care), Nurse A and Nurse B. These statements align with the Trust’s complaint response.
70. We can see a significant amount of Mr P’s records from this time are missing from his file. There is a critical care admission document from 12.24pm to 12:45pm which says Mr P was drowsy with oxygen saturation levels of 89-92% on NIV. It says the plan is to admit him to critical care for high flow oxygen with or without intubation.
71. We can see an arterial line insertion checklist from 4pm. An arterial line is a catheter inserted into an artery for continuous blood pressure monitoring and frequent blood sampling. There is then an emergency intubation checklist from 4.30pm and an induction of anaesthesia record from 4.45pm.
72. Our critical care adviser said NIV is the first line treatment in respiratory failure. They said, if pH and carbon dioxide levels do not improve and NIV fails, the next step is intubation and ventilation. They said Mr P was failing to respond to NIV and had been deemed suitable for full escalation to critical care.
73. Our critical care adviser said assessing capacity in critical care is very difficult. They said the most important concern is to preserve life where possible and this means staff must act as the patient’s advocate. They said best practice is to assess a patient’s capacity prior to any intervention if time allows.
74. NICE guideline 108 sets out how clinicians assess capacity. Essentially, to be deemed to have capacity, a patient must be able to understand information given to them and be able to retain and use this information appropriately to make a decision. Our critical care adviser said it is unlikely any patient with respiratory distress and hypoxia will have capacity.
75. NICE guideline 108 says a patient can make, what might be seen by others to be, an unwise decision in relation to their care and treatment and still have capacity. It is clear clinicians should start with the presumption that all patients have capacity until proven otherwise.
76. Our critical care adviser said Mr P’s clinical notes support the Trust’s position he lacked capacity. They pointed to several entries in his ED notes. The entry at 12.55am says Mr P could not tell the doctor why he needed oxygen, and they felt he was unable to weigh up the pros and cons of oxygen treatment.
77. The entry at 1.30am says Mr P needed to be constantly told to keep his venturi mask on. The entry at 6am says the doctor tried to explain NIV to Mr P but he was unable to recall what they had said and removed his mask. The doctor noted they did not think he had capacity. Mr P’s condition then continued to worsen.
78. The statements from the critical care staff present at the time describe Mr P as being hypoxic. This fits with the evidence we have seen. They say a finger probe showed his oxygen saturation level was 69%. This is dangerously low. Our critical care adviser said a patient with hypoxia is unlikely to have capacity.
79. In critical care, doctors must sometimes make decisions in a patient’s best interest. Our critical care adviser said the Trust’s decision to sedate and intubate Mr P was appropriate based on his condition at the time. They believe he would have died without intervention. We agree.
80. It is difficult for us to be sure how the Trust communicated this at the time as key records are missing and we have differing accounts from Dr P and the staff involved. However, all accounts indicate some discussion about the plan to sedate and ventilate Mr P took place with him and his parents prior to the procedure.
81. Mr P’s notes show ED staff discussed the possibility of intubation with Dr P prior to his move to critical care. Dr P has said Dr A discussed the plan to sedate and ventilate Mr P with him and his wife on their way to critical care. In their statements, critical care staff say they discussed the plan with Mr P as well.
82. Overall, we think the evidence shows Mr P likely did lack capacity as his oxygen and carbon dioxide levels worsened in the ED. The evidence suggests he remained hypoxic following his transfer to critical care meaning he very likely still lacked capacity. We therefore find the Trust’s decision to sedate and ventilate him was appropriate.
83. As outlined earlier, there are clinical records missing. We will address this further in paragraphs 126-132.
Mr P’s care and treatment in critical care:
84. Dr P complains the Trust failed to treat Mr P’s presenting conditions (sleep apnoea and obesity hypoventilation syndrome). He says staff told him and his wife investigations confirmed Mr P did not have an infection, so the Trust’s original diagnosis was incorrect.
85. Mr P’s records show the Trust carried out an echocardiogram to establish heart function and a CT pulmonary angiogram to exclude pulmonary embolism, interstitial lung disease (a group of conditions that cause scarring of the lungs) and other reversible causes. It also carried out a bronchoscopy and sent a sample for testing which was negative for pneumocystis (a type of pneumonia).
86. An echocardiogram uses ultrasound to create images of the heart allowing doctors to see how it is functioning. A CT pulmonary angiogram is a CT scan that visualises the blood vessels that carry deoxygenated blood from the right side of the heart to the lungs in order to detect blockages. A bronchoscopy allows doctors to examine the lungs using a camera.
87. The echocardiogram showed systolic function in the left ventricle was very mildly reduced and the right ventricle appeared enlarged with impaired systolic function (the ability to contract and pump blood effectively). The CT showed features of heart failure and bibasal consolidation but no pulmonary embolism. The bronchoscopy showed generally clear airways.
88. The Trust checked Mr P’s BNP (a hormone produced by the heart in response to increased pressure and strain) and troponin (a protein released when the heart muscle is damaged) to monitor his heart. His BNP was mildly elevated at 133.9 (0-125 being normal) and his troponin was 9 (0-45 being normal) indicating no detectible damage.
89. The Trust measured Mr P’s infection markers at regular intervals. CRP (a protein produced in response to inflammation) was measured everyday between day two and day seven of his admission (it was 9, 15, 49, 71, 64 and 75 with 0 to 9 being normal). Procalcitonin (a sepsis biomarker) was measured on day 3 and day six and was 0.20 and 0.15 (0 to 0.04 being normal) meaning the risk of Mr P developing sepsis was low.
90. The Trust also carried out blood tests for connective tissue disease and HIV status. It carried out an extended respiratory PCR test and urine antigen PCR test (all negative). It took a swab of Mr P’s right leg as he had a bacterial skin infection. This showed staphylococcus aureus (a bacteria commonly found on the skin and in the nose which can cause a wide range of infections) sensitive to the antibiotic Tazocin.
91. We can see the Trust carried out a medical review of Mr P at least twice a day. This is in line with NHSE’s critical care service specification. We can also see the Trust completed daily safety checklists and considered sedation holds for Mr P every day during his time in critical care.
92. Our critical care adviser said the Trust’s diagnosis (respiratory failure likely due to his underlying issues exacerbated by infection) was reasonable given Mr P’s clinical history, presentation and the results of investigations. They said the Trust admitted him to critical care as it hoped he had some reversibility of his condition.
93. Our critical care adviser said once the Trust decided to intubate Mr P it was appropriate to keep him intubated whilst it carried out investigations. They said this maintained his safety given he had already failed NIV. They said the Trust then carried out appropriate investigations into his condition.
94. The Trust started co-amoxiclav and clarithromycin on day one for community acquired pneumonia. It switched co-amoxiclav to Tazocin on day two to treat Mr P’s skin infection. It then stopped antibiotics on day three when Mr P’s infection markers were low. It restarted Tazocin on day seven for suspected ventilator acquired pneumonia.
95. Overall, we find Mr P’s care and treatment in critical care was in line with GMC professional standards. These say doctors must adequately assess the patient’s conditions, examine the patient and promptly provide or arrange suitable advice, investigations or treatment.
Mr P’s self-extubation on day four:
96. Mr P removed his breathing tube on day four and Dr P is understandably concerned this happened due to a failing by the Trust.
97. Our critical care adviser said they could see no evidence this happened due to poor care. They explained deep sedation for a prolonged period can be harmful, so patients should ideally be sedated but responsive to voice with some movement. They said keeping patients in moderate sedation means there is always a risk of self-extubation.
98. Sedation scoring is used to measure level of sedation and keep patients comfortable. The aim is for patients to have a Richmond Agitation-Sedation Scale (RASS) score of -3 (moderate sedation). This is set out in ICS best practice. We can see Mr P’s critical care daily reviews on day three and four show his RASS score was -3.
99. Dr P also complains the Trust did not give Mr P the opportunity to breathe on his own when he self-extubated. He says he and his wife were with Mr P and a nurse had earlier said the plan was to wake him up on day six. He says Mr P’s pH and carbon dioxide levels were normal and his oxygen saturation level was 93% at the time.
100. Dr P also says he heard a nurse say Mr P should be kept awake after he self-extubated but when they returned from the family room staff had resedated him. He says a nurse (Nurse C) told them they had done this due to a lack of staff as it was a Saturday. He says nobody said Mr P’s oxygen levels were lethal at the time.
101. In a statement taken during the Trust’s investigation, Nurse C said Mr P suddenly woke up and started grabbing for his tube. They said they tried to hold his arms but were unable to prevent him from grabbing it. They said they shouted for other staff to help and several colleagues arrived within seconds with one of them pulling the emergency alarm.
102. Nurse C said Mr P was in a state of ‘wild delirium’ and staff could not calm or reassure him. They said it was difficult for several nurses to stop him harming himself. They said Mr P was shouting incoherently and struggling against them but was rapidly becoming hypoxic with his face turning purple.
103. Nurse C said a senior registrar arrived within thirty seconds of the emergency alarm being pulled. They said less than three minutes later a second registrar arrived along with an operating department practitioner. They said the doctors took the only safe course of action which was to re-sedate and re-intubate Mr P.
104. Nurse C denied telling Dr P and his wife they had to re-sedate Mr P due to a lack of staff. Looking at Mr P’s critical care daily review on day 4, we can see the plan included keeping Mr P ventilated with a review planned for day six. This suggests there was no definitive plan to extubate on day six.
105. Our critical care adviser said Mr P’s extubation was not medically planned and it was therefore in line with the BJA guidelines to re-intubate him. They said the records show Mr P desaturated rapidly after self-extubation with his oxygen saturation level dropping to 68%.
106. We have seen no evidence Mr P’s self-extubation was due to a failing by the Trust. Mr P was mildly sedated making self-extubation a known risk. We find the Trust’s decision to reintubate was appropriate as Mr P was hypoxic. Our critical care adviser says Mr P would not have survived without re-intubation.
107. Dr P raises a specific concern about the Trust’s decision to add fentanyl to Mr P’s infusion following his self-extubation. He says fentanyl is a respiratory depressant and the Trust clearly added it to prevent him from breathing. He says it was not added for pain relief as Mr P was not suffering from any pain.
108. Mr P’s records show the Trust initially gave him anaesthetics (propofol and ketamine), an opioid (fentanyl) and a muscular paralysis drug (rocuronium). It switched fentanyl to remifentanyl on day three, added midazolam (benzodiazepine) on day four and then switched remifentanil to fentanyl on day five.
109. The BJA guidelines say ketamine is increasingly favoured when sedating and ventilating patients. They also recommend giving patients a muscular paralysis drug. The Trust’s sedation guideline says to give remifentanil when patients are expected to be ventilated for less than 72 hours and fentanyl when it is expected to be more than 72 hours.
110. An opioid is given to control pain and stress while ventilated as a breathing tube is extremely uncomfortable. Even when sedated, a patient can still feel pain, air hunger and anxiety, as well as the urge to cough or pull out their tube. Opioids help patients tolerate the ventilator as they blunt the stress response.
111. Our critical care adviser said the medications and dosages the Trust used to sedate Mr P throughout his admission were appropriate. It is important to recognise patients often build up a tolerance to opioids so the same dose may not control pain or ventilator discomfort over time. We have no concerns about the Trust’s switch to fentanyl on day five.
The Trust’s decision to withdraw treatment and communication around this:
112. Dr P says clinicians told him and his wife Mr P’s heart and lungs were irreversibly damaged due to his embolism, sleep apnoea, chronic hypoxia and pulmonary hypertension. He says clinicians said they should not have ventilated Mr P, and they would not have done so had they known his lung condition was chronic.
113. Dr P says clinicians told them they had decided to end Mr P’s life by switching off his ventilator and keeping him sedated which would stop him breathing. He says he and his wife asked them to allow Mr P the chance to breathe on his own, but the clinicians ignored their wishes.
114. Dr P says a nurse told him and his wife Mr P had developed ventilator acquired pneumonia. He says Dr B and another doctor then told them it was time to end Mr P’s life. He says Dr B turned off Mr P’s ventilator and gave him diamorphine to guarantee his death.
115. Our critical care adviser said the decision to withdraw treatment is a difficult one. They explained it is usually made when the burden of treatment is more than the likelihood of survival. They said it is a decision made as a team alongside discussion with the patient’s family.
116. Our critical care adviser said it is important it is not a family decision as this puts considerable burden on the family. They said the family should understand and agree with the process knowing continuing treatment is of no benefit and carries a greater burden to the patient than a peaceful end to life.
117. The GMC guidance says the benefits of a treatment that may prolong a patient’s life, improve a patient’s condition or manage their symptoms must be weighed against the burdens and risks for that patient, before doctors can reach a view about whether it could be in their interests.
118. The GMC guidance also says it is important doctors acknowledge the role and responsibilities of people close to the patient. It says, as far as possible, doctors should make sure their needs for support are met and their feelings respected although the focus of the care must remain on the patient. It is clear the family’s role is not to make decisions.
119. Our critical care adviser agreed the burden of treatment had become too great for Mr P. Based on what we have seen, we find the Trust’s decision to withdraw treatment was appropriate. Having carefully considered the conversations that took place, we find the evidence shows it was a team decision, and Mr P’s parents were actively involved.
120. Mr P’s records indicate the Trust involved his parents in the decision-making process and spent a considerable amount of time talking through their concerns. The notes suggest that, while they initially had concerns, they agreed with the decision to extubate. We find the Trust’s communication to be in line with guidance.
121. Mr P’s parents asked clinicians to extubate Mr P but stop all sedation to give the chance to breathe. However, we consider the Trust’s position this would cause him unnecessary distress, and an unpleasant death was appropriate. It was the responsibility of the clinicians to act in Mr P’s best interest.
122. Our critical care adviser said the way clinicians withdraw treatment generally depends on the team and patient. They said the aim is to maintain the patient’s comfort and dignity. The FICM guide says extubation and ventilatory withdrawal may involve the prescription of medications to pre-emptively protect from shortness of breath.
123. In Mr P’s case, doctors prescribed diamorphine. In its complaint response, the Trust said a clinician gave 4mg 10 minutes before extubation and then topped this up to 10mg at the time of extubation. The prescription chart says 10mg of diamorphine was prescribed and a note at 14:45 says 10mg of diamorphine was given.
124. The BNF says the initial dose of IV diamorphine should be up to 5mg in heavier individuals. While this is for acute pain, it gives an idea of the general dose requirements. It is important to recognise, if a person is already on an opioid, they develop some tolerance so may need a larger dose.
125. Doses of drugs given when treatment is withdrawn vary according to patient response. Mr P was requiring extra sedation during his stay which likely meant he would require more sedation to keep him comfortable and reduce his respiratory distress. Our critical care adviser said the 10mg dose of diamorphine appears appropriate. We agree.
The Trust’s record keeping
126. Dr P complains the Trust has lost or destroyed records relating to Mr P’s care. He says these are not trivial mistakes but examples of very serious unprofessional misconduct. He believes the Trust has deliberately withheld or misplaced these records due to his complaint.
127. We have seen some of Mr P’s critical care notes are missing. They appear to cover several hours and include records by both medical and nursing staff. The Trust has already acknowledged this and offered its sincere apologies. It said staff remember seeing the records, so it is likely they have been mislaid.
128. The Trust said it has carried out an extensive search including checking records of other patients in critical care at the time. It also said it has raised an incident about this using its internal incident reporting system and reported this to its information governance department.
129. NHSE’s code of practice says records must be kept secure and be available when needed. In other words, the loss of a patient’s records is not acceptable practice and there should be clear policies in place to prevent it from happening. The loss of records should be treated as an incident that requires investigation, governance and corrective action.
130. We have also seen the doctor who completed Mr P’s capacity assessment did not sign or date it. While we have been able to identify who completed it and when, we recognise this is not in line with the GMC professional standards. These say doctors must include who is making a record and when. We can see the Trust has already acknowledged this.
131. We understand why Dr P finds the Trust’s poor record keeping concerning particularly as the missing records relate to a part of his son’s care that he has serious concerns about. The Trust’s poor record keeping has therefore added to his concerns and fuelled his distrust about its actions.
132. We find the Trust has not yet fully considered what went wrong with its record keeping or taken appropriate action to prevent these issues from happening again. We therefore uphold this part of Dr P’s complaint. We have made recommendations to address what happened below.
The Trust’s complaint handling
133. Dr P complains the Trust refused to arrange an independent investigation into his son’s care and treatment and its complaint responses are incorrect and unsound.
134. The NHS complaints regulations say organisations should investigate complaints in a manner to resolve them speedily and efficiently. They say organisations should complete an investigation and then send the complainant a written response that includes an explanation of how it considered the complaint and the conclusions it has reached.
135. While NHS organisations may choose to commission an independent investigation, there is no requirement for them to do so. The NHS complaints regulations say organisations should inform complainants of their right to bring their complaint to us for an independent investigation. We cannot criticise the Trust’s decision to investigate a complaint itself.
136. Dr P also complains the Trust’s complaint responses are incorrect and unsound. We have investigated his concerns, and this report details our findings. We have not found any failings in Mr P’s clinical care and treatment. We therefore do not find the Trust’s responses unsound.