End of life diagnosis
23. Mr U explains T was taken to the Emergency Department (ED) with poor breathing and a possible respiratory infection. He says within three hours of his arrival, a doctor had diagnosed T as being at the end of his life without taking an X-ray, a sputum sample (a swab of the mucus produced in the lungs and airways), and with no reference to his medical history or ACP.
24. The Trust said it was clear to the doctor T had a severe, life-limiting neurological condition that caused his breathing to be compromised. It said the doctor considered his presentation on the day along with his background, and considered he was approaching the end of his life. The Trust said the doctor could see T was having more problems with intubation from previous admissions to hospital. It said the priority was to keep T comfortable as he approached the end of his life.
25. GMC Good Medical Practice sets out what doctors should do to provide good clinical care. It says when doctors assess, diagnose, or treat patients, they must examine them, adequately assess their conditions, and take account of their history.
26. A doctor in ED examined T and documented a detailed summary of T’s clinical condition and medical history. This included his recent stay with SCH. We can see the doctor discussed T’s clinical situation with Embrace (a specialised transport service provided which offers critical care transport for seriously ill children across Yorkshire) and the SCH’s Paediatric Intensive Care Unit (PICU).
27. The records show the doctor planned for T to remain in the ED until a suitable HDU bed could be found at the Trust or elsewhere. They planned for T to remain on respiratory support and oral antibiotics.
28. The doctor noted they would review the ‘direction of treatment’ should T’s oxygen levels remain below 80%. They documented if T suffered a cardiac arrest, they would start discussions with his family about whether to proceed with tracheal intubation. The records show the doctor also noted they would ‘start discussions’ about palliative care for T should he suffer a cardiac arrest.
29. Our paediatric adviser said the doctor’s assessment was in line with GMC Good Medical Practice. They said the doctor considered the possibility T was reaching the end of his life only after considering his clinical condition and history, as well as Mr and Mrs U’s views. They said it was appropriate for the doctor to consider this possibility, at the same time as developing a treatment plan.
30. We recognise Mr U’s account that the doctor reached their view T was at the end of his life without arranging a chest X-ray or sputum sample. The records show both investigations had taken place by the evening of 28 September.
31. We acknowledge the results of these investigations were not available to the doctor before they shared their view about T’s prognosis with Mr and Mrs U. We do not think it necessary for the doctor to have seen the results of these investigations before considering T’s possible prognosis. The doctor reached their view having examined T, assessed his clinical presentation and considered his medical history.
32. T was transferred to a ward on 29 September. The doctor noted T’s condition had ‘deteriorated’ after his oxygen levels had fallen to below 60% (typically the level of the oxygen in the blood should be greater than 95%). The doctor noted they spoke to Mr U and explained T was getting worse and likely approaching the end of his life.
33. Our paediatric adviser said the doctor’s concern that T was reaching the end of his life did not appear to influence what the Trust did to care for him. The Trust continued to treat T with non-invasive respiratory support, physiotherapy, and continued his regular medications. Our paediatric adviser recognised it took a few days for T’s condition to improve, and suggested this was to be expected considering he was still recovering from his previous PICU admission.
34. Our paediatric adviser noted T’s ACP had not been updated since before his ten-week admission with SCH. The ACP implied it was going to be reviewed but this was not done before T was admitted to the Trust. This means it would not have been appropriate for the doctor to make decisions based only on the ACP as it was not up to date. We have looked at this in more detail between paragraphs 51 and 61.
35. We can understand how deeply worried T’s parents would have felt when the doctor shared their concerns about him reaching the end of his life. We think the evidence shows the doctor was considering all possible treatment options. Sadly, it was reasonable for one of these options to be that T would need palliative care.
36. We have not seen evidence that the Trust limited T’s treatment instead of finding out the underlying cause of what was wrong. As we have seen, the Trust arranged a chest X-ray and took sputum samples which is evidence it was investigating the cause of T’s deterioration.
37. We do not see a failing here. We know how difficult this time was for Mr and Mrs U. We hope we have provided a degree of reassurance that the doctor acted within guidance when they assessed T in the ED.
Treatment
38. Mr U says the Trust provided T with an inadequate form of respiratory support between 28 September and 3 October.
39. For this part of the complaint, we have looked first at whether it was reasonable for the Trust to provide T with high flow oxygen therapy. We have then considered whether the Trust limited T’s treatment by not intubating him.
High flow oxygen therapy
40. High flow oxygen therapy is a type of respiratory support that delivers up to 60 litres of oxygen per minute via a nasal cannula (a tube which sits just inside each nostril). It is typically offered to patients with severe respiratory failure as a non-invasive form of respiratory support. The oxygen is heated and humidified, which helps to break down mucus in the patient’s airways.
41. Mr U said high flow oxygen therapy was inadequate for T. He said T’s oxygen levels were still low despite being treated with the highest level of oxygen possible.
42. Our paediatric adviser said it was reasonable for the Trust to start T on high flow oxygen therapy. They explained this type of respiratory support is recognised as suitable for children who do not require immediate intubation. Our paediatric adviser said this is supported by the review in the Paediatric Journal referenced in paragraph 22, which publishes research articles and clinical reports on various aspects of paediatric health.
43. Our paediatric adviser said high flow oxygen therapy is appropriate for the treatment of children with respiratory failure. They said it is established to be comfortable for a child and is clinically equivalent to other non-invasive types of respiratory support.
44. Our paediatric adviser’s view was that the Trust provided T with the appropriate respiratory care at this time.
Intubation
45. GMC Professional Standards sets out how doctors should involve a child’s family in sensitive and complex situations. It says when assessing what is in a child’s best interests, doctors should consider the child’s clinical condition, the views of the parents, and the views of other healthcare professionals involved in providing care to that child.
46. On 28 September, a doctor documented their concern about intubating T. They noted the possibility that they would not be able to extubate T (that is he would not be able to breathe on his own when doctors removed the endotracheal tube). The doctor considered it would potentially be a burden to T if they intubated him at the end of his life. We can see they also considered the PICU consultants’ view that they might not be able to extubate T successfully.
47. The doctor’s other consideration was that if T was intubated, he would need to be transferred to a PICU unit. As we know, at this time, there were no beds available at SCH, meaning he would have needed to be transferred out of the family’s local area. We can also see the doctor spoke with a doctor from SCH who shared their view it was not in T’s best interests to intubate him.
48. There are several references in the records to the doctors considering Mr and Mrs U’s view about intubating T. On 28 September, the doctor noted Mr and Mrs U’s wish to discuss this option should he deteriorate. The following day, the records show Mr and Mrs U had decided they did not wish T to be intubated.
49. Our paediatric adviser said it was appropriate for the Trust not to intubate T. It is clear from the evidence that the doctors involved in T’s care considered the benefits and risks of intubation, as well as the views of his parents, and the doctors at SCH.
50. We consider the Trust reached its decision about T’s treatment in line with relevant guidance. We think the Trust provided the level of respiratory support T needed.
Advance Care Plan
51. Mr. U said T’s ACP serves as a ‘manual’ for his care in hospital and at home. He said the Trust could not meet the ACP's care standards due to it not having a PICU. He said the Trust knew it could not care for T to the standard set out in the ACP, so drew up a Limitation of Treatment Agreement (LOTA) instead.
52. Mr U said he is concerned the LOTA was based on the Trust's capabilities rather than T's needs and that the Trust continued to rely on the LOTA even after it was clear T was not at the end of his life.
53. The Trust acknowledged there were some aspects of the ACP it was not able to deliver. It said T’s ACP was specific to the care that could be delivered at SCH. It said the ACP should be seen as a ‘live’ and ‘collaborative’ document to support T’s care.
54. Advance Care Planning for children is a process which helps children who are able to, and parents communicate their preferences and priorities for future care. NHS England guidance on advance care planning recommends the ACP should be reviewed annually, and if there are significant changes to a child’s condition, an ‘earlier review should be triggered.’ The guidance says ‘ACPs should be appropriate to the circumstances and continuously updated throughout the delivery of care and support.’
55. Our paediatric adviser said advance care planning should also involve consideration of clinical guidance on treatment and the views of medical professionals caring for the child. They said the ACP should reflect the child’s current needs.
56. T had been in PICU for 10 weeks prior to his admission to the Trust. As we mentioned in paragraph 34, the discharge summary from SCH states his ACP was ‘due to be updated’ by the respiratory consultant. At the time T was admitted to the Trust it had not been updated.
57. Our paediatric adviser said there had been a significant change to T’s condition since the ACP had been written. They said at the time of his admission to the Trust, he had not returned to his baseline clinical condition as set out in the ACP. They also said T’s condition at this time was respiratory, whereas his ACP focused on his neurological condition.
58. The Trust created a new ACP on 28 September and noted it should be used ‘in conjunction’ with the previous ACP. At the same time, it drew up a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plan. A ReSPECT plan differs from an ACP because it focuses specifically on a short-term emergency care situation.
59. Our adviser said it was reasonable for the Trust to review the ACP and draw up the ReSPECT plan. As we have seen earlier in this report, we are satisfied the Trust planned care and treatment in T’s best interest, in line with relevant guidance, and his clinical situation at the time.
60. We have not seen evidence to suggest the Trust changed T’s ACP based on what it could provide. Furthermore, we do not think the new ACP served as a LOTA. It was clearly a reviewed and updated ACP, and the Trust noted it should be considered alongside T’s previous ACP.
61. We have not seen a failing here. We recognise the ACP drawn up in March was incredibly detailed, and still reflected Mr and Mrs U’s wishes and preferences for T’s care. We hope we have helped to explain why it was appropriate for the Trust to update elements of it.
Transfer to another hospital
62. Mr U says the Trust should have transferred T to a hospital with a paediatric intensive care unit (PICU). He says T’s ACP sets out that in the event of an acute deterioration, T should receive care at SCH which knows him and has the facilities he needs. He accepts there were no beds in the SCH PICU at the time T first became ill, but he says the Trust did not do enough to arrange for him to be transferred to a hospital in another part of the country.
63. The Trust acknowledged it does not have the facilities to provide 1:1 nursing care and caring for T was not the ‘preferred option’. It said that T’s clinical condition on 28 September meant the ambulance needed to take T to the nearest emergency department (ED). It said there were no paediatric HDU or intensive care beds available at the time, so T remained in the ED.
64. It said there was no opportunity to transfer T to SCH until 12 October, but Mr U did not want this to happen as he felt T was not stable enough. It said transfer to SCH was considered again on 14 October, but the multi-disciplinary team felt it was not an appropriate time.
65. PCCS Quality Standards set out three levels for paediatric critical care facilities. A level three facility is equipped to care for children who are intubated. Levels two and three facilities can care for children who require non-invasive ventilation, including high flow oxygen therapy as described earlier in this report. The PCCS Quality Standard does not require level one and two units to provide one to one nursing care.
66. The Trust’s HDU can manage children who need level one and level two care. The closest level three unit to T’s home is SCH. As we know, at the time of T’s admission to the Trust, SCH had no PICU beds available. We can see the Trust discussed the options of T remaining at the Trust or being transferred to a PICU unit in another part of the country. We understand that neither of these options felt ideal to Mr U.
67. At the time, the Trust and Mr and Mrs U agreed that T would stay at the Trust until a bed at SCH became available. The Trust reviewed this decision on 4 October and documented that it could safely care for T in its HDU.
68. We can see from an entry in the records on 12 October the Trust talked to Mr U about the possibility of transferring T to SCH. It noted it was ‘at the limits’ of its care ability because it was unable to provide further non-invasive respiratory support options. The records show Mr U felt if SCH was not able to offer any treatment beyond what the Trust could offer, he and Mrs U would prefer T to stay where he was.
69. The Trust held an MDT on 14 October where they discussed the ‘right place of care’ for T. The notes show the MDT considered how safe it would be transfer him, as well as the views of the respiratory consultant from SCH.
70. Our paediatric adviser said the Trust was equipped to provide the level of care T needed. They said T would only have needed to be transferred to a unit equipped to provide level three care if he was to be intubated. They said it was clear from the records the Trust was balancing T’s clinical needs with the risks of transferring him, and the wishes of Mr and Mrs U.
71. We acknowledge Mr U’s view that T needed one to one nursing care. We think the Trust considered T’s needs and made a balanced decision about where he should be cared for. We consider the nursing care was one of the considerations the Trust had, along with the level of respiratory support T needed, the availability of beds in a nearby level 3 unit, Mr and Mrs U’s wishes, and the risks of transferring him.
72. Having considered all the evidence, we are satisfied it was not necessary for the Trust to transfer T. We can see it considered this option throughout his admission and continually balanced his clinical needs with the risks and benefits of him remaining in its care. Ultimately, we think T did not require respiratory support beyond what the Trust could offer.
73. We have not seen a failing for this part of Mr U’s complaint. We acknowledge the concerns he and Mrs U had throughout T’s admission. We hope they feel reassured by our explanation.
Contact with lead consultant
74. Mr U says the Trust failed to contact T’s lead consultant, a neurologist from another Trust, until 4 November. This instruction is set out in T’s March ACP. He says he contacted the lead consultant himself about a month into T’s admission. He says it was only then the Trust started to investigate the cause of T’s deterioration, because the lead consultant had the relevant expertise to advise the Trust based on his understanding of T’s condition.
75. He explains that once he had contacted the lead consultant, a new treatment plan started. T’s clobazam (a drug used to control seizures) was reduced and lansoprazole (a drug to reduce stomach acid) was given to T. Mr U says this treatment plan worked to reduce T’s secretions (excess mucus in lungs) and ultimately helped him get better.
76. The Trust contacted the respiratory consultant from SCH on 28 September. In its complaint response, it said there were no concerns about T’s neurology care at the time of his admission. However, it acknowledged that it could have involved the lead consultant for ‘reassurance’ and ‘adherence to the ACP’.
77. T’s original ACP had been written by the consultant neurologist and the respiratory consultant. It was due to be reviewed by the respiratory consultant. There is no guidance that says all signatories to an ACP should be contacted by the Trust treating a patient.
78. GMC Good Medical Practice says doctors should consult clinical colleagues ‘where appropriate’. This means they should seek advice or collaborate with other doctors when they encounter a situation outside of their expertise or when they need a second opinion.
79. We can see Trust was in contact with T’s respiratory consultant and the PICU team from SCH from the day he was admitted. Our paediatric adviser said as T was in hospital with a respiratory condition, there was no specific requirement to contact the consultant neurologist.
80. We have not seen a failing here. We understand why Mr U would have wanted this to happen and we acknowledge the Trust’s statement that it would have been helpful. We think it was in line with the guidance that the Trust contacted the respiratory consultant, who was a signatory of the ACP.
Antibiotics
81. Mr U says the Trust delayed starting T on antibiotic treatment between4 and 11 October. In his complaint, he specifically referred to T needing an antibiotic that was suitable for the treatment of multi resistant Pseudomonas (a type of bacteria that is resistant to multiple antimicrobials).
82. The Trust said it trialled T on cefidorocol (a type of antibiotic) and had regular conversations with its respiratory team about the best antibiotic treatment for T. It said T had ‘antibiotic coverage’ which was regularly reviewed.
83. The NICE guideline on antimicrobial stewardship sets out recommendations for the safe and effective use of antimicrobials (any medicine used to treat an infection). It aims to slow the rate at which antimicrobials (including antibiotics) become resistant to treatment in individuals and the public.
84. The guideline recommends prescribers should consider the risk of ‘antimicrobial resistance’ when deciding whether to treat an infection with an antimicrobial. It says prescribers should take microbiological samples before prescribing an antimicrobial’.
85. Our paediatric adviser said children colonised with infections do not necessarily need treatment unless they are showing clinical signs of obvious infection. They explained treating colonised organisms can promote antibiotic resistance and general practice is not to treat unless the child is symptomatic.
86. Our paediatric adviser noted T had been prescribed preventative antibiotics before he was admitted to the Trust. He was taking ciprofloxacin (used to treat a wide range of bacterial infections) and azithromycin (prescribed to help prevent bacterial infections). We can see the Trust continued to treat T with these antibiotics when he was in hospital.
87. On 4 October, a doctor contacted the Trust’s microbiology team who had tested T’s sputum sample. The microbiology team said the sample had grown multi resistant Pseudomonas. The doctor’s plan was to continue prescribing ciprofloxacin unless there were signs of a ‘clinical deterioration’ or high temperature’.
88. The records show T developed a raised temperature around 9 October. On 11 October, Mr U reported T had deteriorated over the last 24 hours. We can see the Trust discussed the treatment plan in an MDT and prescribed IV cefidorocol and tobramycin. Our paediatric adviser said it was appropriate for the Trust to start antibiotic treatment at this point because T had started to show signs of infection.
89. We understand why Mr U would have been frustrated at thinking there was a delay. We consider 11 October was the appropriate time for the Trust to prescribe cefidorocol and tobramycin.
Pressure ulcer
90. Mr U complains the Trust did not take appropriate steps to reduce the risk of T developing a pressure ulcer while he was in hospital between 28 September and 22 November.
91. The Trust investigated T’s pressure sore as an incident and shared the outcome of this with Mr U as part of its complaint process. The outcome of its incident investigation was that T developed the pressure ulcer because of his respiratory needs and underlying medical conditions. It said the pressure damage could not have been prevented.
92. A pressure ulcer is an injury to an area of skin and body tissue. They are caused when a body part is placed under pressure that impairs the blood supply. People in hospital and confined to bed for a long time are typically at high risk of developing a pressure sore.
93. The NICE clinical guideline on pressure ulcers sets recommendations for assessing and preventing these in children at risk of developing a pressure ulcer. It also sets recommendations for treating children who already have a pressure ulcer.
94. The guideline says healthcare professionals should complete a pressure ulcer risk assessment for all infants and children in hospital. It says if an infant or child is found to be at high risk of developing a pressure ulcer, healthcare professionals should complete a skin assessment. This should take into account changes to the skin, the temperature of the skin, and any discolouration.
95. We can see the Trust completed regular pressure ulcer assessments for T. He was found to be at high risk of developing a pressure ulcer throughout his admission. Our paediatric nurse adviser said there is evidence nurses assessed T’s skin whenever they repositioned him.
96. The guideline says healthcare professionals should help children who have been assessed as being at high risk of developing a pressure ulcer to change their position ‘more frequently than every four hours’.
97. The records show T’s oxygen levels dropped severely when he was moved from an ED trolley to a bed on the ward on 29 September. We note frequent further references to T’s oxygen levels dropping when he was repositioned. They said T’s clinical condition meant it was not possible for him to be repositioned frequently.
98. Our paediatric nurse adviser said there is some evidence of nurses repositioning T, although not as often as the guidance recommends. They said they could see this was because it was not always in T’s best interests to be moved. Understandably, Mr U’s view was T should not be repositioned if he was settled and comfortable.
99. The records show nurses documented a pressure ulcer starting to appear on T’s left buttock on 3 October. On 4 October, a nurse noted the skin was ‘slightly red’ but intact. A nurse noted no change to the pressure ulcer on 6 October and ‘no broken skin’ on 8 October. Unfortunately, by 11 October, the records show the pressure ulcer had started to get worse. An entry states there was some discharge on the dressing and the skin seemed broken.
100. At this point, T was referred to the Trust’s Tissue Viability Team (a team of healthcare professionals who are focused on preventing and managing wounds). The team came to see him on 11 October and noted an area of ‘deep tissue injury’ to his left buttock. We can see they talked to Mr U about the difficulties of repositioning T and the ‘risk’ of his oxygen levels dropping outweighing the risk of pressure injury.
101. The guideline says if pressure on an affected area of skin cannot be relieved by repositioning, healthcare professionals should consider a ‘dynamic support surface’. While a normal mattress offers constant, static support, a specialised mattress uses air to periodically inflate or deflate individual cells, thereby redistributing pressure to different areas of the body. The records show T was nursed on a hybrid mattress (a combination of foam and air) from his admission to the ward on 29 September.
102. The Tissue Viability Team recommend an air cell mattress for T when they saw him on 11 October. Our paediatric adviser noted it was difficult for the Trust to reposition T even after he had moved to this mattress.
103. We know Mr U was concerned that T should have been nursed on a higher specification mattress sooner than 11 October. Hybrid mattresses are suitable for individuals who are at risk of developing pressure ulcers. When it became apparent to the Trust that the hybrid mattress was not enough to redistribute pressure, it replaced the mattress with an air cell mattress. Our paediatric nurse adviser said it would not have been necessary for the Trust to do this sooner than it did.
104. Our paediatric nurse adviser said unfortunately, T’s clinical condition meant it was impossible for the Trust to provide the care necessary to prevent the pressure ulcer developing. They said the Trust did all it could and acted in line with the NICE guideline on pressure ulcer care throughout T’s admission.
105. We have not seen a failing. We fully empathise with the distress Mr and Mrs U must have experienced when T developed a pressure on top of everything else he was having to cope with. We are sincerely sorry for the pain and discomfort it would have caused T. We hope they feel reassured that having looked at all the information, we consider the Trust cared for T in line with the guideline.
106. We recognise how upsetting it has been for Mr U to feel the did not care for T in the right way. We fully empathise with how difficult this time has been for Mr U and his family and thank him for sharing his experience with us. We hope he can take some reassurance from our findings.