Operation
20. Mr O told us the Trust contacted him to say Miss I had kidney stones and needed an operation. He said the Trust then contacted him again later to say Miss I was too ill to have the operation.
21. When there is a blockage preventing urine from draining, the pressure in the kidneys can rise, which can damage the kidney. The EAU guidelines say urgent decompression (relieving the pressure) is often necessary to prevent further complications. It says there are two options for decompression, one of which is the placement of an indwelling ureteral stent.
22. We can see from the medical records the Trust had identified Miss I had an infection in her kidney, which had led to an obstruction. The Trust planned to do the operation when it was in Miss I’s best interest to do so. It noted the stent would offer preferable drainage to other treatment options, but there was a mortality risk to the procedure.
23. In line with the EAU guidelines, the Trust had assessed Miss I’s condition and decided to operate and place a stent.
24. However, we can see Miss I’s clinical condition then deteriorated. Her heart rate had increased to 176 (a normal range is around 50 to 90). She was in respiratory distress meaning her breathing rate was high, at 42 (a normal range is around 12 to 20), she needed a high dose of oxygen (15 litres), and she had crackles in the base of both lungs (crackles are caused by the opening of the small airways of the lungs which have collapsed).
25. Miss I’s skin was mottled and clammy. Her lactic acid level (produced by muscle cells, red blood cells, the brain, and other tissues during oxygen deficient energy production, usually present in low concentrations in the blood) had increased, and venous blood gas level (determines whether there is an imbalance in the amount of oxygen or carbon dioxide in the blood, or if the blood is too acidic or alkaline) had decreased.
26. The GMC guidance says doctors must weigh the benefits, burdens, and risks of treatment. This means they must weigh the benefits of a treatment that may prolong life against the burdens and risks for the patient before reaching a view about its overall benefit.
27. The guidance says it may be of no overall benefit to provide potentially life prolonging, but burdensome, treatment in the last days of a patient’s life, when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.
28. After Miss I’s condition deteriorated, the Trust decided she was too unwell for surgery and was not suitable for anaesthesia. It thought Miss I was close to dying and therefore the operation would not be in her best interest.
29. Our adviser reviewed Miss I’s medical records. We found the Trust acted in line with the GMC guidance when it decided not to undertake the operation.
30. We saw the Trust had noted there was a mortality risk to the operation before Miss I’s condition deteriorated. The deterioration Miss I experienced would have further increased the risk of her having a poor outcome from the surgery. The operation was therefore likely to have little benefit.
31. We did not uphold this part of the complaint.
32. We considered whether the decision to move Miss I to palliative care was in line with relevant guidance below.
End-of-life care
33. Mr O told us the Trust told him that Miss I’s condition was ‘fatal’ and that she would die imminently. He said the Trust wanted to start palliative care, which he felt pressured to agree to.
34. There is no guidance which specifically sets out how to recognise when a patient is dying. The NICE guidance is to supplement the individual clinical judgement doctors need to make decisions about the level of certainty of prognosis.
35. The NICE clinical knowledge summary says it can often be difficult to be certain that a person is dying, but that it is essential to recognise the signs of dying to appropriately care for people at the end of life. The terminal phase may last hours to several days.
36. The Trust’s view at the time was that Miss I had overwhelming sepsis which was not reversible. It discussed with microbiology whether to consider further antibiotics. The Trust noted that without surgery to release the obstruction from the kidney stone, her prognosis was not good. It also noted Miss I appeared to be in distress.
37. Our adviser considered Miss I’s medical records. As set out in paragraph 24 and 25 of this report, we can see Miss I’s condition deteriorated.
38. The Trust considered whether it could provide further treatment for the sepsis which had caused Miss I’s condition to deteriorate. But it decided there was nothing further it could do about this. It also considered her need for an operation, but decided she was no longer a suitable candidate (which we have considered in the previous section).
39. Given it appeared the Trust could not reverse the deterioration caused by either of these conditions, the Trust’s decision that Miss I was dying was in line with the NICE guidance and NICE clinical knowledge summary. We did not uphold this part of the complaint.
40. Mr O was also concerned the Trust did not re-evaluate Miss I’s condition. He said it was clear after a number of days that Miss I was not as seriously ill as he had been led to believe. He believes the Trust should have considered the possibility of stopping palliative care and restarting active medical care when Miss I did not die as anticipated.
41. The NICE guidance says clinicians should be aware that improvements in signs and symptoms, or functional observations, could indicate the person may be stabilising or recovering.
42. We can see from the medical records that the Trust undertook assessments of Miss I’s condition. Our adviser said there was no indication during any of these assessments that Miss I’s condition was improving.
43. It is difficult to refer to the medical records because the electronic version we received does not include dates. However, we saw the palliative care team regularly reviewed Miss I.
44. The Trust noted Miss I was receiving 15 litres of oxygen and appeared to be ‘actively dying’. Later, Miss I was reviewed again, when it was noted that she was ‘unrousable’ and her breathing was more laboured. Later still, the Trust noted Miss I’s breathing had changed and her pulse had felt weak before it returned to normal.
45. We could understand Mr O’s concern about Miss I’s condition, particularly when he had thought she would die within a couple of days. We saw no failing in the Trust’s actions. It assessed Miss I’s condition in line with the NICE guidance, but there was no indication her condition was improving.
46. We did not uphold this part of the complaint.
47. Mr O was concerned the Trust did not undertake blood tests which could have helped assess Miss I’s condition. He believes the blood tests could have shown whether Miss I still had sepsis.
48. The NICE guidance says clinicians should avoid undertaking investigations that are unlikely to affect care in the last few days of life unless there is a clinical need to do so. For example, when a blood count could guide the use of a transfusion to avoid catastrophic bleeding.
49. Our adviser said there was no indication a blood test was needed. Sepsis was only one of the issues Miss I faced. She still had the blockage in her kidney, which the Trust could not release. Therefore, even if the sepsis had resolved (we have not reached a view about whether it had), Miss I would still have needed an operation which she was not well enough to have.
50. We found the Trust acted in line with the NICE guidance in not undertaking an unnecessary blood test. We did not uphold this part of the complaint.
51. Mr O says he stayed by Miss I’s bedside for 13 days and nights and watched her fade away from having no liquids or food.
52. The NICE guidance says the dying person’s hydration status should be assessed and the possible need for starting clinically assisted hydration should be reviewed.
53. However, it also says that for someone who is in the last days of life, clinically assisted hydration may relieve symptoms related to dehydration, but may cause other problems. It is uncertain whether giving clinically assisted hydration will prolong life or extend the dying process. It is also uncertain whether not giving clinical assisted hydration will hasten death.
54. We saw from the medical records that Mr O raised his concerns about the lack of fluids and nutrition with the Trust at the time. It appeared the Trust discussed the risks and benefits of clinically assisted hydration with Mr O, and that the aim for treatment was to keep Miss I comfortable.
55. Our adviser said that if the Trust had provided IV fluids, they would not have been particularly helpful for Miss I’s clinical condition. It is possible they could have made her breathing worse.
56. The Trust could have considered providing these for comfort, but there was no evidence Miss I was in discomfort without them.
57. We could understand why Mr O was concerned, particularly given how long Miss I lived for. However, we found the Trust acted in line with the NICE guidance. We did not uphold this part of the complaint.
Treatment
58. Mr O believes the Trust treated Miss I lesser than she should have been. He said although she had been in a care home, she had been fit and well until she suffered a series of falls. Mr O said the Trust made an assumption about Miss I's condition due to the Korsakoff syndrome and dementia, the Do Not Attempt Resuscitation (DNAR) that was in place at the care home, and her previous positive covid status.
59. The GMC’s Good Medical Practice says doctors should treat patients fairly and without discrimination.
60. Miss I’s age and dementia did have an influence on the care the Trust provided. However, this was only insofar as both factors had an influence on what the outcome of any treatment would likely have been, and hence what was in her best interest.
61. Our adviser said there was no evidence to suggest Miss I had received detrimental treatment due to her age or dementia.
62. We saw the Trust was initially prepared to undertake surgery, despite Miss I’s age and dementia. It was only when her clinical condition changed, that the Trust decided it was not in her best interest to have surgery. This was because the burden and risks had moved to outweigh the possible benefits of the treatment.
63. We found the Trust acted in line with the GMC’s Good Medical Practice. We did not uphold this part of the complaint.
Complaint handling
64. Mr O also complained about how the Trust handled his complaint, which he said was not open and transparent. He said it was not clear how the Trust had investigated his complaint, who the Trust had spoken to, or what information it had considered. He said it had taken some time and the Trust had delayed things.
65. Mr O also said he had asked the Trust for its palliative care policy, but the Trust initially declined to provide this. He said the Trust told him he would need to ask for it by making a Freedom of Information (FOI) request.
66. The NHS Complaints Regulations say that after completing the investigation, the organisation must write to the complainant, explaining how it has considered the complaint and the conclusions reached.
67. Our Principles of Good Complaint Handling say organisations should be open and accountable. This means they should give clear, evidence-based explanations, and reasons for their decisions.
68. We can understand to some extent why Mr O feels it was not clear how his complaint had been investigated. The Trust’s first response refers to the Medical Examiner (ME) process and the subsequent Structured Judgement Review (SJR).
69. It says the role of the ME is to consider the care and treatment received, and to scrutinise the cause of death, but it does not explain how this was done. The response also says the SJR ‘delves deeper’ into a patient’s treatment and care, but again, does not explain what was involved.
70. The second response explains the Trust had spoken with two Consultants, but the role of these doctors was not clear. For example, it was not clear whether these doctors provided care to Miss I, or whether they were undertaking an independent review of the care provided.
71. Having read the complaint responses and the medical records, we can see the Trust has referred to the medical records when responding to the issues raised in the complaint. However, it is not always clear where the Trust has relied on the medical records, and where it is providing an explanation after the event.
72. However, we did not have any concerns about the conclusions the Trust has reached. As we have set out above, we found the Trust acted in line with the relevant guidance.
73. Our Principles of Good Administration say organisations should be open and accountable. This means organisations should be transparent and information should be handled as openly as the law allows. Policies and procedures should be transparent, while respecting the privacy of personal and confidential information, as required by law.
74. We accept Mr O could have asked for the palliative care policy using an FOI request. However, there seems to be no reason why the Trust could not have provided it without a formal request being submitted, particularly as this related to the concerns Mr O had raised.
75. We would not expect a general policy such as this to contain personal information which would need confidentiality to be maintained. Many organisations have general policies such as this widely available on their website.
76. We found the Trust failed to respond to Mr O’s complaint in line with the NHS Complaint Regulations, and Our Principles of Good Complaint Handling and Good Administration. We did not think the Trust’s investigation was as open and accountable as it could have been.
77. Mr O told us how the Trust’s handling of his complaint caused him frustration. The Trust did not tell him how it investigated his complaint, or what information it considered. Asking Mr O to submit a formal FOI request appeared unnecessarily onerous.
78. We could understand why these issues have caused Mr O frustration. We uphold this part of the complaint, and made recommendations to address the injustice caused to Mr O. Details about our recommendations can be found in paragraphs 82 to 85
79. The NHS Complaint Regulations say an organisation should send a complainant a response ‘as soon as reasonably practicable’ after completing the investigation. If it is not able to send a response within six months of the date the complaint was received, the organisation should write to the complainant and explain why. It should provide a response as soon as possible after this.
80. We saw Mr O submitted his first complaint in July 2020, which the Trust responded to in November 2020. This was four months after Mr O had complained. Mr O submitted a follow up complaint in November 2020, which the Trust responded to in February 2021. This was three months after Mr O had complained.
81. We could understand Mr O’s frustration and desire to resolve the complaint, particularly given its distressing nature. However, we found the Trust responded to the complaint within a timescale that was in line with the NHS Complaint Regulations. We did not uphold this part of the complaint.