PEG-J procedure
19. We carefully considered the process in which doctors decided to offer and proceed with a PEG-J placement for N.
20. The purpose of a PEG-J rather than a PEG is to reduce the risk of aspiration pneumonia. With PEG feeding, food is passed via a tube in the abdomen to the stomach. When food (in liquid form) goes into stomach, it can come back up the gullet (called gastric reflux) and go to the lungs (aspiration). This can cause an infection, called aspiration pneumonia. N had had aspiration pneumonia numerous times, so it was appropriate to consider a PEG-J to reduce the risk. Aspiration pneumonia can be life-threatening. Unfortunately, while a PEG-J reduces the risk of aspiration pneumonia, it does not remove it. N’s risk of aspiration pneumonia was increased due to a history of tracheo-oesophageal fistula, a condition in which an abnormal connection forms between the oesophagus (the tube that leads from the throat to the stomach) and the trachea (the tube that leads from the throat to the lungs).
21. The decision to offer a PEG-J was made in a multidisciplinary team (MDT) meeting on 23 November 2021. An MDT is a group of various professionals (such as doctors, nurses, therapists) who work together to make decisions regarding the treatment of individual patients. This is in line with Good Medical Practice, which says ‘You must work collaboratively with colleagues, respecting their skills and contributions’. The MDT noted N’s history, including tracheo-oesophageal fistula with recurrent stents and recurrent aspiration pneumonia. The team was also aware that N had an appointment booked for 2 December at UCLH regarding his stents. We consider the decision to offer the PEG-J was appropriately considered.
22. Mrs M says doctors should not have just asked N for his consent to this procedure. In 2011, he had a cardiac arrest during an operation, which caused hypoxia (lack of oxygen) causing damage to his brain. As such, Mrs M says that N did not have capacity to make decisions alone and that she should have been involved with the decision. We acknowledge N had a degree of cognitive impairment and appreciate why she would want to be fully involved with such decisions.
23. The GMC’s ‘Decision making and consent’ guidance says ‘Medical professionals must start from the presumption that all adult patients have capacity to make decisions about their treatment and care. A patient can only be judged to lack capacity to make a specific decision at a specific time, and only after assessment in line with legal requirements.’
24. This is in line with the Mental Capacity Act Code of Practice, which says ‘The Act’s starting point is to confirm in legislation that it should be assumed that an adult has full legal capacity to make decisions for themselves (the right to autonomy) unless it can be shown that they lack capacity to make a decision for themselves at the time the decision needs to be made.’
25. A person with cognitive or mental impairment is not automatically judged to lack capacity to make decisions relating to their medical treatment.
26. It is clear that the team considered N to have capacity. In his report for the Trust’s complaint investigation, the consultant, Dr A, wrote ‘when I was caring for him … I did not feel that he lacked capacity. We knew that we had to present information to him clearly but felt that he understood information as presented.’ From his review of the records, Dr A gave around 70 examples of when N had signed consent forms for procedures. Dr A himself was not responsible for all of these, so clearly other doctors had reached similar conclusions.
27. We have also looked at the records from UCLH, which show doctors there made considered decisions that when he was not under sedation, N had capacity to consent to procedures. Overall, we found evidence that it was reasonable for the Trust to seek consent from N for the procedure.
28. The consent form showed he had appropriately been advised about the potential risks of this procedure; bleeding, failure of procedure, perforation of bowel, aspiration pneumonia.
29. We appreciate that there was an important matter to consider; that of N’s brain injury. We saw a copy of a letter dated 7 March 2016 written by a consultant psychiatrist stating he had assessed N at the request of a solicitor and concluded he did not possess capacity to understand and manage his legal proceedings. Capacity for legal proceedings does not necessarily rule out capacity for consenting to medical treatment. We recognise it would have been helpful if doctor had documented clearly that N had capacity; while it is not usual in a consent form whether the patient has capacity (the assumption is that they do), in N’s case, they knew he had a brain injury even if they did think he had capacity.
30. Following the procedure, N experienced unexpected bleeding. Our adviser said that this appears to have been an unfortunate complication of the procedure. Bleeding is listed as one of the possible side effects on the consent form. It was unusual because they were replacing a PEG with a PEG-J. Bleeding is more likely the first time a PEG is placed (whether to the stomach or jejunum). During N’s procedure, they only changed the tube and passed it through the existing insertion site. Therefore a bleed at the site would be less likely.
31. Our adviser said there is no evidence to confirm where the bleed came from. There was no bleed noted during the procedure, but N was found to be bleeding when he returned to the Intestinal Rehabilitation Unit on the evening of 27 November (the day after the procedure). A CT angiogram scan did not show where the bleeding was coming from.
32. On the morning of 28 November during the gastroenterologist’s ward round, it was noted that he still had a GI bleed and the following morning the ward round record notes ‘no blood in stoma at present’.
33. The bleed stopped by itself and there was no reason to look further into where it had been. We appreciate why it would be frustrating not to know the source of the bleed. Our adviser explained that sometimes, a patient can experience a bleed without doctors knowing where it is originating from. From the evidence we saw, we can reassure Mrs Ms that there is no indication that this had a lasting impact on N, although we appreciate why it would cause so much concern.
34. Our adviser said that such a bleed is not a common complication of such a procedure, and it would not have been considered a significantly high risk when deciding to offer the procedure. In other words, it would not have been a reason not to offer the PEG-J.
35. Mrs M complained of the timing of the procedure as N was due to have stents changed at UCLH soon after. She believes the PEG-J procedure delayed that. A stent is a small tube inserted to keep passageways open within the body. In this case N had received stents in the oesophagus (as well as urinary stents). The records show that N had biodegradable stents which dissolve in time. He had had 33 in the last 9 years, with the last one being in September 2021.
36. Our adviser said that a PEG-J can be done before stent change and as such, we do not consider there was a failure by the Trust in deciding to do the PEG-J procedure at that particular time. There was no indication that it was going to put at risk the planned procedure on 2 December. The PEG-J itself was an important procedure in order to address his recurrent aspiration pneumonia.
37. N was found to have pneumonia after the procedure and he was transferred to the Intensive Treatment Unit (ITU). Although N was discharged on 22 December, he was readmitted on 28 December, with further aspiration pneumonia.
38. Our adviser considered the actual method they used for the PEG-J procedure, which Dr A explained in his report. This involved a scope being passed through N’s oesophagus. There are no published standards or guideless about how it should be done and having considered the record of the procedure, our adviser said it was done in line with what he would expect. The record shows that the stent in the oesophagus was well placed. There is no indication that the procedure caused any injury to N’s oesophagus.
Delays in responding to request for meeting
39. Mrs M first raised concerns about what happened to N after the placing of the PEG-J. On 3 January 2022, she emailed the medical secretary of Dr B, consultant gastroenterologist, asking for a meeting with clinicians involved with the procedure.
40. On 20 January, she sent another email asking for a response. The secretary replied on 14 February saying she did not receive the email and could not say whether Dr B had or not. Mrs M pointed out that on 22 December, she had spoken to Dr B, who advised her to contact the secretary to set up a meeting.
41. She emailed the Trust’s PALS (patient liaison) department on 7 June 2022, after N had died, to say she had never had a meeting with staff to answer her questions. She pointed out that she had tried to arrange a meeting previously but none had been arranged.
42. PALS responded and asked whether she wanted to make a formal complaint and on 15 June, wrote a letter to Mrs M to say it was arranging a meeting. The meeting took place on 22 August. In this regard, the meeting was quite soon after Mrs M raised a formal complaint, given the need to find convenient dates for all parties. We recognise this was after a period of over five months (before contacting PALS) when Mrs M was under the impression that a meeting was already being arranged.
43. On 16 January 2023, the Trust followed up with another letter, which included a copy of a report that Dr A had completed to try to answer her questions. (In part, this was because the records were not all available during the meeting.) In its letter, the Trust acknowledged it had taken around nine months between Mrs M asking for a meeting and it actually taking place. It said that there was nothing on record to confirm the discussion with Dr B and her secretary had found no record of a meeting request so it was not until she contacted PALS in June 2022 that a request for a meeting was logged. This seems to be inconsistent with Mrs M’s email exchange with the secretary in January and February, which shows that the secretary did see at least one email which shows Mrs M wanted a meeting.
44. The Trust wrote again to Mrs M on 14 February 2023, with a further explanation. Dr B had asked Dr A’s team to deal with a request for information. She was then not told of Mrs M’s further communication after that. N was still an inpatient when they spoke and Dr B was unaware that she was coordinating a meeting. The Trust acknowledged that there had clearly been a failure of communication although there had not been a deliberate attempt at delaying meeting. Dr B apologised for the distress and frustration this caused Mrs M.
45. We can see why it was upsetting for Mrs M to try to get the information she wanted about N’s procedure. The Trust acknowledged that it got this wrong and explained why it thought it had happened. It apologised for the upset this caused. We do not think there is much more we can reasonably expect them to do to put things right.