17. Miss K has concerns the Trust did not consider her grandad’s past medical history and he needed a catheter to prevent urinary retention. She has concerns about his discharge on two occasions, and that the appropriate follow up was not in place. The Trust says the best course of action for Mr Y was for his catheter to be removed.
22 January 18. Mr Y was taken to the Trust via ambulance, as his catheter was blocked in the care home. The Trust re-catheterised him and he pulled this out on multiple occasions. The Trust was able to catheterise him again, and he was discharged to the care home.
19. Our urology adviser says it would have been appropriate to hold a best interests meeting at this point to determine the next steps in Mr Y’s catheter care. This is because the situation was becoming extremely difficult, with significant risks and he lacked capacity.
20. The BMA toolkit provides guidance to help doctors make decisions in the best interests of adults when they lack capacity. It sets out the decision making process that should be followed, the different factors to consider, and how these should be balanced.
21. The toolkit sets out a collaborative approach for decision making. It says the approach should be multidisciplinary and involve all members of the care team. It also sets out those involved in caring for a person must be consulted about their views on a person’s best interests. This is also set out in the NICE best interests standards.
22. In these circumstances, a best interests meeting would usually involve a senior member of the urology team, a senior urology nurse, a relative, a member of the community nurse team, a care home representative and a geriatric representative. The purpose of the meeting would be to describe the clinical dilemma, determine the possible next steps and make everyone aware of the situation.
23. This was a very complex issue. The probability of Mr Y causing himself serious harm was high if he continued to self-remove his catheter. This is because this could result in an infection, urethral injury and sepsis. However, without the catheter Mr Y was very likely to go into retention.
24. Our urology adviser explains there were no straightforward options. Mr Y could have been left without a catheter but would have required monitoring in hospital for retention. Mr Y could have been kept with a catheter, with the risks being accepted by all parties considering the likelihood of this causing injury and harm.
25. This is why a best interests meeting was needed. The clinical issues, options and risks would have been explored and explained with the professionals and family, to determine an option going forward. The decision to discharge Mr Y in this clinical situation without involving the relevant professionals and family was not in line with the above standards. There is a failing here.
26. There was a lost opportunity for a best interests meeting to have happened and the family to have been involved in Mr Y’s care. Involvement of the family is essential as he had no capacity to input into decisions about his management.
27. It is understandable that Miss K and her family not being fully involved or informed about the decision making would cause distress. If they had been, they would have been more aware of the full picture of how difficult the situation was. They would have had the opportunity to have their views heard and considered moving forward. We recognise this decision was taken away from them and how important it was for them to be involved in Mr Y’s care.
28. The Trust has not acknowledged this or taken any steps to put this right. Our complaints standards say organisations should give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned. They also say they should take action to make sure any learning is identified and used to improve services.
29. We have not seen action has been taken to sufficiently remedy the distress we identified. We therefore recommend the Trust take further action to put this right.
24 January 30. Mr Y was taken to the Trust as he had ripped out his catheter. The Trust A&E doctor discussed this with the urology registrar who recommended the discontinuation of the catheter. Mr Y was discharged back to the care home three hours later.
31. The above guidance is also applicable here. There was a second lost opportunity to carry out a best interests meeting to determine the next steps, and involve the family. The evidence suggests there was no attempt to find out about Mr Y’s urological history, or an understanding of the full picture.
32. The history from Mr Y’s daughter indicates he developed urinary retention two and a half years prior to this and was catheterised from that time. He had undergone trials without catheter, but these were unsuccessful. He was managed thereafter with a long-term catheter. Mr Y’s history was not properly considered.
33. GMC guidance says when assessing or treating patients doctors must adequately assess a patient’s condition, including taking account of their history. It also says you must be considerate to those close to the patient and responsive in giving them information.
34. The decision to leave Mr Y without a catheter was a major decision. The decision should have been made by a senior clinican with at least one close family member. The decision was not made by a consultant, or senior member of staff. The Trust should have contacted the family to explain Mr Y’s history and talk through the options. The family would then have had the opportunity to relay his past medical history, known what was happening, and be better prepared for a possible poor outcome. As a result, the decision to remove the catheter was not in line with GMC guidance.
35. In addition to this, the NMC TWOC guidance sets out a trial without catheter should take place in a supervised environment if urinary output is a concern (because of health problems such as renal failure), functional issues are a concern, the likelihood of re-catheterisation could be difficult, or continuous supervision is needed because of cognitive impairment (for example dementia).
36. The decision to discharge Mr Y without a catheter was also not in line with the NMC TWOC guidance. Mr Y was not able to express what was happening and had a history of retention. Given his age and history, there was a high probability of developing urinary retention. If the Trust was going to trial Mr Y without the catheter, he should have been kept in hospital, and his progress monitored with bladder scans. There is a failing here.
37. Our urology adviser has carefully considered the impact of the decision to discharge Mr Y without a catheter, specifically if the outcome could have been avoided. We acknowledge Miss K has very serious concerns about this. We will explain our findings in full below.
38. We are not able to know what the outcome of the best interests meeting would have been. However, there are two possible outcomes we will go on to explain.
39. If a best interests meeting had taken place, based on the evidence showing the family’s views from that time, it is likely another catheter would have been inserted. This is because there is evidence to show the family had serious concerns about Mr Y’s retention, and its preference was for him to have a catheter. The family’s views would have been considered as part of the best interest process.
40. It is recognised that if this option had been taken, there were risks surrounding this and it was likely to become a serious issue at some point in time, with repeated admissions and catheterisation. If this option had been chosen, Mr Y could still have seriously injured himself or suffered an episode of sepsis. The family would have been advised of these risks and the team would have worked together to make a decision everyone was informed on.
41. It was also an option to trial Mr Y without a catheter. If he was trialled without a catheter, in line with the guidance he would have remained in hospital and been monitored. This means it would have been recognised that he had gone into urinary retention, and he would have been re-catheterised.
42. The retention Mr Y experienced is directly related to him being left without adequate bladder drainage. We recognise that Mr Y being left without a catheter meant he went on to go into retention.
43. We obtained advice from a geriatrician to understand more about Mr Y’s chances of recovery, the treatment options that were available and if there is evidence the outcome could have been avoided. We have thought very carefully about this, whilst it may seem a clear and direct link, there are numerous additional important factors to consider in Mr Y’s clinical circumstances.
44. Our geriatric adviser explains this was a very complicated and difficult situation. Mr Y had been frequently and more increasingly pulling out his catheter, despite the fact he was on appropriate medication to try to alleviate this.
45. Based on this, the evidence suggests if the catheter had been re-inserted, he would have continued to try to pull this out. As a result, he was at very high risk of causing himself a trauma or developing infections or sepsis. He was also on an anticoagulant medication and was at high risk of significant bleeding. These are all extremely difficult situations to manage, which could have caused him to have become very unwell and/or death.
46. Mr Y had lots of admissions in a very short space of time. Even though his catheter had previously been in for two and a half years, the catheter admissions were becoming recurrent. This was most likely triggered by his progression of dementia.
47. Our geriatric adviser explains if the catheter had been reinserted, whilst we cannot know exactly what would have happened, this would not have alleviated all of the issues and he was at high risk of injury, complications, deterioration or death.
48. Mr Y’s hospital admissions were causing him to be delirious, and repeated episodes of delirium can mean dementia progresses more rapidly.
49. There was a wider picture of frailty and with Mr Y repeatedly pulling out his catheter the options were limited and complicated. Each solution was challenging with risks. Based on this, it is highly likely Mr Y would have sadly gone on to deteriorate as he was becoming more and more unwell. If he had been catheterised, we cannot be confident the catheter would have remained in situ to have avoided him going into retention.
50. Medical records from Mr Y’s hospital admission in a different Trust recognise Mr Y had been generally deteriorating over the recent weeks. There is a note to say as a result of all the problems he was experiencing, he had a poor quality of life and pursuing very intensive treatments would not be appropriate for him. This is evidence to show prior to the incident Mr Y had been deteriorating with increasing frailty and was not going to recover from the issues that were becoming more complicated.
51. Based on this we cannot say Mr Y would not have gone on to deteriorate or experience complications that put him at high risk of death. The problems Mr Y were experiencing were life limiting problems.
52. In conclusion, Mr Y had numerous comorbidities, progressively worsening dementia and a known history of removing his catheter. We cannot say that reinstating the catheter at that time would have avoided his death due to the risks and complications. Whilst it remains that the Trust made mistakes in how it managed Mr Y’s catheter, his clinical circumstances meant we cannot say on the balance of probabilities, Mr Y would have had a better outcome.
53. We recognise this means Miss K is left not knowing if things might have been different. We are mindful this will cause significant distress. We also acknowledge if the complexity and difficulty of the situation had been communicated sooner, she would have had more time to process and prepare for the outcome. It is understandable this exacerbated the grieving process.
54. We recognise it will be distressing for Miss K to learn there were wrongdoings. This alongside the worry Miss K experienced having to worry there was a direct link in the care to Mr Y’s death. We do not underestimate how distressing it must have been to navigate these worries.
55. We have looked to see if the Trust have taken any steps so far to put this right. We recognise this was a complex situation. We are reassured the Trust has explained it was going to discuss Mr Y’s case in the monthly urology audit meeting with a view to improving practice in a similar situation. It has acknowledged there were some issues, it has not recognised the failings we have identified, or impact of these.
56. Our complaints standards say organisations should take action to make sure any learning is identified and used to improve services.
57. We have not seen action has been taken to sufficiently remedy the impact we have identified. We therefore recommend the Trust takes action to put this right.