The Trust did not plan for Mr B’s operation as it should have done
15. Mrs B says the Trust did not plan her husband’s operation in April 2024 as it should have done. She says because of this he suffered excessive bleeding and the operation had to be abandoned. She says Mr B was left with pain and worry he would not have had because of this, as well as having to face the possibility of another operation when he was already very ill. She says she is not sure the operation was ever needed in the first place, as it had to be cancelled and her husband was not operated on again.
16. The Trust says it found during the operation Mr B’s tumour was larger than scans had indicated and it had split in two. This made the operation take longer than expected. Mr B also bled considerably during the operation. The Trust decided because of his excessive bleeding it would be safer for Mr B to have a second operation relatively soon after April 2024. In the event, that did not happen as Mr B’s condition worsened.
17. The relevant standards for this are the ‘EAU Guidelines on Non-muscle-invasive Bladder Cancer’. These say an organisation should organise a cystoscopy (a procedure which provides a detailed look at a person’s bladder) and operate on a patient where there is a chance of success. The operation should be a trans urethral resection of bladder tumour (TURBT). In this is an operation a surgeon will remove (resect) the tumour and take a biopsy to confirm cancer diagnosis.
18. We asked our adviser about this. They said the records show us the Trust had done a cystoscopy of Mr B’s bladder in February 2024. This indicated the Trust should operate on him. It held an MDT meeting where this was considered by the relevant clinical staff in March which decided the Trust should operate on Mr B. The Trust appears to have acted in line with EAU guidance in planning for the operation.
19. We appreciate how distressing it was for Mr and Mrs B that the Trust stopped his operation in April because of his excessive bleeding. This left him possibly needing a further operation and caused them further worry at an already distressing time. We understand why Mrs B is concerned the operation may not have been necessary. The records show the Trust followed the procedures and were right to recommend it operate on her husband. We appreciate it later had to be stopped, but that does not indicate the Trust was wrong to try to operate in the first place.
20. The Royal College of Surgeons of England leaflet ‘Having an Operation? Your Patient Journey’ says after an operation patients will be told what happened, including whether what was planned was achieved. This indicates surgeons cannot be certain exactly what will happen during an operation. We cannot say the Trust got something wrong because it decided not to complete Mr B’s surgery. We are saying we have not seen indications it got something wrong here.
The Trust did not make Mr B aware of the operation’s risks
21. Mrs B says the Trust discussed the surgery with them at Mr B’s appointment in February 2024 when he also signed a consent form for it. But she says neither she nor her husband felt the Trust clearly explained what may happen in and after the operation. She says he therefore agreed to it without really knowing what would happen. She says this means he suffered pain and inconvenience after it that he may not otherwise have had.
22. The Trust told us it did explain the risks of the operation to Mr B when it spoke with him and Mrs B and he signed a consent form for the operation. It told us Mr B specifically signed to confirm he agreed to a blood transfusion should one be necessary. It thinks this should have alerted him to the possibility of significant blood loss in this type of operation. The Trust said it was not possible to predict the exact outcome of an operation. The Trust has acknowledged to us that it did not clearly document its discussions with Mr and Mrs B. In the complaint response, it apologised for the stress and anxiety his unsuccessful operation caused Mr and Mrs B.
23. ‘Consent to treatment’ on the NHS website says any consent must be valid, voluntary and informed. It says consent can be given verbally or in writing. The GMC’s ‘Good medical practice’ says doctors should make sure they give a patient the information they need in a way they can understand and they should check the patient understands this. The BAUS TURBT ‘Information about your procedure’ leaflet describes likely risks of this operation on pages 3 and 4. These include incomplete removal of a tumour, ongoing bleeding leading to delayed or further surgery and that a catheter may be needed after the operation.
24. The records show Mr B signed a consent form for his operation. This listed potential risks of his bladder/urethra surgery. These included bleeding, further surgery and having to have a catheter post-operation. He also consented to a blood transfusion if he needed one.
25. Our adviser said it would be very unlikely for a urologist to do an operation like this without discussing it with a patient. There is a reference to ‘pre and post op (sic) advice given’ on 5 March during his pre-operative checks. This indicates it had some form of discussion with Mr B. We have no reason to disbelieve the Trust when it says it did discuss the likely outcomes of the operation with Mr B. But the records do not show exactly what the Trust said to him, what questions he asked and how it explained the risks. We have not seen any other reference to how or what it told him would and could happen. Our adviser said the surgeon could not guarantee the operation would be successful, but it is not clear whether it told him that.
26. The evidence shows us the Trust did discuss the operation with Mr and Mrs B. And we know Mr B signed a consent form setting out key risks. It appears both the Trust and Mr and Mrs B thought they knew what the upcoming operation and post-operative period entailed. But their later complaints indicate that was not the case, especially regarding him needing a catheter. Their account in the complaint shows they were shocked and upset about his bleeding during the surgery, and that Mr B needed a catheter after it and another operation. These were all mentioned on the consent form and Mr B had failed three trials without a catheter. So the evidence indicates they did not fully understand the risks and potential outcomes.
27. When we weigh up the evidence, it shows us the Trust thinks it gave Mr and Mrs B enough information about the operation. But there is very limited reference in the records to the discussions it had with him. The Trust needed to be confident Mr B had understood the information it had given him, in line with ‘Good medical practice’, and there is no evidence it did this. We have identified a failing here.
28. Mrs B believes her husband may have had an unnecessary operation that caused him pain and inconvenience. There is no indication the surgery was unnecessary or that the Trust did not plan it properly. Clearly the clinical team felt there was a good chance it would be successful. It was very unfortunate that it was not. We could only speculate about what decision Mr B would have made if he had better understood the information it gave him. On the basis of the evidence we have seen so far, we cannot say on the balance of probabilities that he would have decided not to go ahead.
29. But it is clear from Mrs B’s account how distressing it was for them both when he had complications they were not expecting. And Mr B lost faith in the Trust’s care, when he would need more care as time went on. We can understand why what we think the Trust got wrong led to this emotional impact for them.
The Trust did not discuss palliative care as it should have done
30. Mrs B says the Trust did not discuss palliative care until July, even though she and her husband wished to talk about it in May. She says this meant they did not have time to properly plan his end of life care and wishes. She says this was upsetting for her, especially as she says the Trust did not say how long he had to live.
31. The Trust says it had many conversations with Mr and Mrs B, including those led by its clinical nurse specialist (CNS). It says its May letter to Mrs B did give details of who to contact if he wished to discuss counselling and further support for his then potential terminal diagnosis. It says it did provide palliative care information in July once it was certain of his diagnosis and that a further operation would not solve what was wrong with him.
32. Palliative care is symptom relief to improve the quality of life for patients who are facing problems to do with the end of their life.
33. The relevant standards for this are the Trust’s ‘End of life care strategy’ and its ‘Clinical Guidelines for the Management of Bladder Cancer’. The guidelines say the Trust should consider palliative care once it is known someone has a cancer which has spread or is at an advanced stage. It should do this after it has considered the patient’s needs in an MDT meeting. Its strategy says it should have honest conversations with patients and loved ones about end of life care when the patient is ready.
34. We asked our adviser about this. They said the Trust did not consider palliative care after the operation in April because Mr B wanted to have his catheter removed. They said the specimen the Trust had taken at his operation suggested further resection surgery would be the appropriate next step. This is what the Trust planned and was still the situation in May 2024. It held an MDT meeting in May to consider his condition, as we would expect it to have done.
35. The records show the Trust had not confirmed either that Mr B had cancer, or that he was entering a terminal phase, at the time of the MDT in May. Our adviser said the Trust could not reasonably discuss palliative care with Mr B until it knew his actual diagnosis. The records show it did not know that until July 2024. At this point, it did discuss palliative care with Mr and Mrs B. It would not have been able to give practicable advice about palliative and other end-of-life options until then. It could not say how long he might live in May. The Trust still thought his condition was curative then and was treating him on that basis. He was not a candidate for palliative care at that time. Discussions about life expectancy may have been more distressing than helpful for Mr B and would not have been based on the evidence available in May.
36. Mr B died just over two weeks after the Trust confirmed his cancer was terminal. So we can understand why they would have wanted more time to process the information and plan for the end of his life, and why Mrs B has raised this concern. When we weigh up the evidence we have seen so far, we think the Trust discussed palliative care at the appropriate time, in line with relevant guidance. It could not have reasonably done this in May. We have found it did not get something wrong here.