17. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. If there is a difference between the two, we consider if this is significant enough to indicate a failing.
Concerns about dialysis treatment
18. There are two main types of dialysis, haemodialysis and peritoneal dialysis.
19. Haemodialysis, which is the most common, is intensive compared to peritoneal dialysis. It can have a significant effect on the heart, including the possibility of causing cardiac arrest (when the heart stops beating). In patients with severe heart failure who have kidney impairment, peritoneal dialysis (rather than haemodialysis) is usually given, because it is gentler, particularly on the heart.
20. NICE guidance explains clinicians should consider starting dialysis when uraemia (high levels of waste products in the blood due to kidney failure) has an impact on daily living or causes uncontrollable fluid overload.
21. If a patient is not suffering from symptoms of uraemia, then clinicians should consider providing dialysis if their eGFR level is between 5 to 7ml/min. An eGFR is a test which indicates how well the kidneys are filtering waste and water.
22. To be clear, this guidance does not say dialysis should be given in those circumstances, only that it should be considered.
23. The records show that when Mr L attended hospital in January, March and May he was experiencing fluid overload. This fluid overload was caused by his heart failure. Staff treated the fluid overload with intravenous (IV) diuretics.
24. Doctors in the renal clinic reviewed Mr L twice during that time. The records show Mr L’s eGFR levels were around 18 or 19 and we have seen no evidence he was experiencing symptoms of uraemia. They discussed dialysis with Mr L and considered it would not be beneficial to him at that stage.
25. When patients have fluid overload, if the kidneys can produce urine, then they will help to get rid of extra fluid. Diuretics assist in the removal of fluid as they increase the urine production in the kidneys. However, if the kidneys are not functioning as well, they are less able to get rid of the fluid from the body as urine. At this stage, patients need support in the form of dialysis.
26. We can see that during those presentations to hospital, staff were able to successfully control Mr L’s fluid overload with diuretics. This meant his kidneys were working and able to remove excess fluid from his body.
27. Renal specialists considered peritoneal dialysis was an option for Mr L in the future, if it is needed. They planned to monitor this closely including reviewing him again in four to six weeks. The focus at that stage was on fluid overload, caused by heart failure, which was the biggest immediate risk to his health. The diuretic medication he was currently on was helping supporting fluid retention.
28. When Mr L was admitted to hospital on 14 July, he had acute kidney injury, which is where the kidneys suddenly are not working properly. This was due to over diuresis, which is where the kidneys filter too much bodily fluid.
29. At that stage Mr L’s eGFR was 12 and he was experiencing uraemia. Although dialysis was not required initially, doctors referred Mr L to surgeons and arranged for him to have a peritoneal dialysis catheter inserted and a hernia repair at the same time. This was so he could receive longer term dialysis when required. This surgical procedure was completed during this admission.
30. As Mr L’s kidney function did not improve, following the acute kidney injury, doctors gave Mr L acute (short term) haemodialysis several times during this admission.
31. Our adviser said the kidneys are usually able to get rid of extra fluid if the function level is above 12, as at this level the kidneys produce urine. This ability becomes impaired once the functions start getting worse and less urine is produced. They said Mr L received dialysis at the right time, and there was no indication he needed dialysis any earlier.
32. During admission on 9 August, doctors treated Mr L’s fluid overload with diuretics and his kidney failure with dialysis treatment.
33. As set out above, Mr L first received dialysis treatment during his admission to hospital in July 2023 when he had acute kidney injury. He did not require dialysis in the months before then because his kidneys were still functioning to remove the extra fluid from his body. In line with the NICE guidance, we have seen no indication the Trust should have provided dialysis prior to then.
34. As we have seen no sign the Trust did anything wrong in the provision of dialysis treatment to Mr L, we will take no further action regarding this complaint.
35. We acknowledge Ms A’s concern that earlier dialysis treatment may have led to greater chance of survival for her father. We appreciate how upsetting it must be to have those concerns.
36. Our adviser explained that due to Mr L’s other diseases and his very poor heart function, the timing of any type of dialysis would sadly not have altered the outcome for her father. We recognise this may be difficult for Ms A to read but we hope it provides her with some reassurance about the timing of her father’s sad death.
Concerns about attempt to switch off the ICD
37. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the event(s) complained about had a negative effect which the organisation has not put right. Having done so we have found the Trust has already done enough to put right the impact of these events.
38. The ICD guidance says decisions about deactivation of any device should be made with full involvement of the person themselves and of the healthcare team caring for them. The decision must be based on careful assessment of a person’s individual circumstances at the time. People should be given all the information they need to allow them to participate fully in shared decision-making.
39. Discussion of deactivation of an ICD as part of end-of-life care should allow ample time and opportunities for explanation and for an agreed, shared decision when the patient is ready to make it.
40. In its complaint response, the Trust said the renal consultant documented that he had a conversation with Mr L about deactivating his ICD.
41. The records show that on 1 September a doctor reviewed Mr L as he become very short of breath. During that review, Mr L reported that for the last week his ICD had been making a noise at around 10am every morning. Part of the plan was to consider if it was appropriate to keep the ICD active.
42. Shortly after, during the consultant ward round referred to by the Trust, there was a discussion about the possibility of needing to stop dialysis. They planned to update daughter. This entry does not refer specifically to discussions about the ICD.
43. A note immediately after this says to contact the cardiac team regarding the ICD. This suggests the doctors may have discussed the ICD with Mr L at that ward round. However, we do not know the content of that discussion.
44. The following day the cardiac outreach team attended the ward to turn off the ICD. Ms A would not allow staff to do this, as they had no knowledge of it so cardiac team left the ward without switching it off. Ward staff discussed this with Ms A and agreed they would not deactivate the ICD.
45. In its response, the Trust acknowledged the deactivation of the ICD was something which should have been discussed as part of the end-of-life decision making. It recognised it will often cause problems if this has not been discussed in sufficient detail.
46. Although, based on the above, we can see some signs the Trust got things wrong in its communication about the ICD. However, we can see it has taken action to prevent a repeat of these events. It has informed the renal consultants of its findings, and the complaint and findings have been discussed at the renal department’s quality and governance meetings for reflection and learning.
47. We recognise it was upsetting for Mr L and Ms A when staff came to switch off the ICD. We can see that when challenged about this, the cardiac team did not switch the ICD off. Therefore, the impact of this was of short duration. Because of this and considering what the Trust has done to prevent a repeat of these events, there is nothing further we need to do here.
Concerns about ReSPECT forms
48. Ms A is concerned that during her father’s final admission to hospital, staff repeatedly discussed putting in place a ReSPECT form. She says patients should be asked once and then not again.
49. A ReSPECT plan is a recommended summary plan for emergency care and treatment. The Resuscitation Council UK website explains that the ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency, when the person is not able to make decisions or express their wishes.
50. This helps patients, families and healthcare team to come to an agreement and knowledge of plans for future care which can be the plans for resuscitation or escalation of treatment. The recommendations are created through conversations between a person, their families, and their care professionals to understand what matters to them and what is realistic in terms of their care and treatment.
51. This is reflected in GMC end of life guidance which says doctors must plan ahead as much as possible to ensure, timely access to safe, effective care and continuity in its delivery to meet the patient’s needs. Establishing a management plan will help to make sure the patient’s wishes and preferences about treatment can be taken into account.
52. GMC good medical practice 2015 also says doctors should give people the information they want or need in a way they can understand. Patients have the right to be involved in decisions about their treatment and care and be supported to make decisions if they can.
53. In line with this, we would expect doctors to keep patients informed about their condition, prognosis and potential limitations or risks of any procedure or treatment.
54. The records show that when Mr L was initially admitted to hospital in August, doctors had several conversations with him about his care and putting a Do No Attempt Cardiopulmonary Resuscitation (DNACPR) order in place. This is a document which says that if a patient’s heart stops beating, staff will not attempt to restart it.
55. As Mr L did not agree with this, staff sought a second opinion and discussed his care with an intensive care consultant (ICU) who advised that Mr L was not an ideal candidate for ICU. Staff then updated Mr L following this discussion and again explained DNACPR.
56. At the end of the month doctors discussed Mr L’s condition and care with Ms A, as they considered his condition was precarious. Although initially, doctors stopped treatment as they believed Mr L was at the end of his life, the following day they agreed to continue with dialysis. Whilst doing so they were clear that the likelihood of this having any positive impact on his condition was low.
57. Following the ICD incident referred to above, a doctor discussed Mr L’s condition with Ms A and, as it was relevant to what had happened regarding the ICD, explained that if her father’s heart stopped, CPR would be futile.
58. On 9 September, doctors explained to Mr L and Ms A that they could not continue dialysis and diuretic treatment. They discussed palliative care and Mr L decided to be discharged home.
59. We recognise that during his admission, staff had multiple difficult discussions with Mr L and Ms A. It was clearly a very upsetting time for them.
60. It is important that patients and families are informed about their treatment, condition and prognosis and that they are involved in decision making which takes places round their care. We do not consider these discussions were in any attempt to coerce her father into agreeing. We think the conversations were done with the best of intentions, to ensure Mr L and his family were actively involved in decisions that were being made and that he was fully informed.
61. We recognise Ms A feels differently about these discussions and that they should not have taken place. In our view, the Trust was acting in line with the guidance at paragraphs 51 to 54 above.
62. Despite this, we are pleased to see that when investigating Ms A’s complaint, the Trust made recommendations around communication for the renal consultants to consider. It has informed the renal consultants of its findings, and the complaint and findings have been discussed at the renal department’s quality and governance meetings for reflection and learning.
63. In summary, we will not take Ms A’s complaint further. We hope our consideration of her complaint provides Ms A with some closure to her concerns.