Issue 1: communication about suspected heart attack 20. Ms A says the Trust did not tell her or Mr B that the tests Mr B received at his 16 November 2020 appointment indicated that he had a ‘silent heart attack’ (a heart attack without chest pain). Ms A complains that the Trust did not tell her about this suspected heart attack until 27 November 2020. She says this poor communication caused her to lose the opportunity to make decisions about Mr B’s care and undermined her faith in the NHS.
21. We reviewed Mr B’s clinical records with our advisers to consider this part of Ms A’s complaint. We used the GMC’s professional standards on decision-making and consent and the NHS Constitution determine what should have happened.
22. Our nephrology adviser said the records from Mr B’s 16 November 2020 outpatient appointment showed that he had a heart attack at some point in the past. Our cardiology adviser confirmed that this was likely a perioperative MI (a heart attack during or around the time of his transplant operation). The Trust’s records show that the clinic wrote to Mr B’s GP to inform them of this suspected heart attack on 16 or 17 November 2020. We have not seen any evidence that Trust staff discussed these findings with Mr B or Ms A at the time.
23. The Trust’s records show that a trainee doctor from the Transplant team called Mr B’s son 10 days later, on 27 November 2020, to inform him that Mr B was moving to the ICU. The records we have reviewed show that the doctor mentioned Mr B’s suspected heart attack during this call. Ms A told us she overheard this because she was in the car with Mr B’s son. She says this was the first time she heard about the suspected heart attack. She told us this was shocking news because she attended all of Mr B’s medical appointments with him, and she was the Trust’s main point of contact for information about Mr B’s care. This indicates that in this ten-day period, the Trust had multiple opportunities to inform Ms A and Mr B of the suspected heart attack.
24. During our investigation, we asked the Trust to explain why it did not discuss Mr B’s cardiac symptoms with him or Ms A. The Trust was not able to send us an explanation.
25. The GMC’s professional standards on decision-making and consent says doctors ‘must give patients the information they want or need to make a decision.’ The GMC standards explain that this information includes the patient’s diagnosis and options for further care. These standards are supported by the NHS Constitution, which says compassion should be central to the care the NHS provides. To this end, the NHS Constitution says staff have a responsibility to ‘involve patients, their families, carers or representatives fully in decisions about prevention, diagnosis, and their individual care and treatment.’
26. We consider the Trust’s communication about Mr B’s heart condition to fall below these standards. The evidence we reviewed shows that the Trust failed to inform Mr B or Ms A about Mr B’s suspected heart attack for ten days even though Trust staff frequently spoke to them about developments in Mr B’s care. This shows that the Trust did not fully involve Ms A and Mr B in discussions about his diagnosis and management, as expected under the NHS Constitution.
27. We acknowledge that the Trust informed Mr B’s son about Mr B’s suspected heart attack on 27 November 2020. We have reviewed the records of this communication, and we consider it to have fallen short of the NHS Constitution’s expectation that communication should be ‘compassionate.’ This is because the records we reviewed show that Trust told Mr B’s family about his heart attack as an aside in a broader conversation. We therefore find failings in the Trust’s communication about Mr B’s suspected heart attack.
28. Ms A told us she believes the Trust’s communication caused her and Mr B to lose the opportunity to make informed decisions about his care, which may have contributed to his death. She told us Mr B said he wished his family agreed to withdraw life-sustaining treatment when he was in a coma, and she felt like this decision was taken away from her. She also told us she wished she had the chance to make more informed decisions about Mr B’s follow-up cardiac care.
29. We discussed Ms A’s concerns with our advisers. Our nephrology adviser said although he was in a coma, Mr B was never ill enough for the Trust to legally withdraw life-sustaining treatment. Regarding Ms A’s concerns about cardiac care, our clinical advisers said, based on their review of his records, Mr B’s heart condition likely deteriorated in the months between his discharge from inpatient hospital admission and his death. Therefore, on the balance on probabilities, we consider it highly unlikely that Mr B or Ms A would have been able to make different decisions about Mr B’s care if the Trust informed them of Mr B’s heart attack at an earlier date. We acknowledge that this does not take away from Ms A’s very difficult experience.
30. Ms A also told us that the Trust’s communication failings caused her significant distress and undermined her faith in NHS services. She said this is partly because she believes Trust has been dishonest with her about Mr B’s care. We have not seen any evidence which indicates that the Trust was deliberately dishonest with Ms A. We can equally understand how the Trust’s communication failings could have caused her to feel this way.
31. We appreciate that it is difficult to separate the distress Ms A experienced due to Mr B’s health outcomes and death from the distress she experienced as a result of the Trust’s communication failings. After careful consideration, we have found that the Trust’s communication failings caused Ms A to experience additional distress and worry against the background of her bereavement around Mr B’s and death. This is because the Trust’s communication caused her to lose confidence in the care and treatment it gave Mr B. We therefore uphold this part of her complaint.
Issue 2: cardiac care after 16 November 2020 32. Ms A says the Trust did not provide Mr B with appropriate follow-up care for the heart attack it identified on 16 November 2020. Mr B died of a heart attack in June 2021, and Ms A said she is concerned that this was connected to the care and treatment he received in November 2020. We acknowledge how upsetting this has been for Ms A.
33. To investigate this part of Ms A’s complaint, we reviewed the records of the care and treatment Mr B received from the Trust with our clinical advisers. We used the following NICE Guidelines to assess the care and treatment Ms A described in this part of her complaint: • NG 106 ‘Chronic heart failure in adults: diagnosis and management’, 12 September 2018.
• NG 185 ‘Acute coronary syndromes’, November 2020.
• CG187 ‘Acute heart failure: diagnosis and management’, 8 October 2014.
34. These guidelines say doctors should suspect heart failure if a patient experiences breathlessness and fluid retention. Our nephrology adviser said the guidelines tell doctors to manage acute heart failure with diuretic therapy (water tablets) to reduce fluid retention.
35. The NICE guidelines also instruct clinical staff to measure a patient’s BNP (brain natriuretic peptide) levels if they show signs of heart failure. This is because BNP is a hormone the heart releases when it is under stress, so high levels of BNP are a sign of heart failure. NICE guidelines say doctors should perform a transthoracic echocardiogram (a heart scan on their chest) and arrange ‘urgent specialist assessment’ within 2 weeks if a patient’s BNP levels are above 2,000 ng/litre.
36. The clinical records we reviewed with our advisers show that Mr B visited his local A&E (at a different Trust) on 9 November 2020 due to fluid retention and breathlessness. Our advisers confirmed that these are symptoms of chronic heart failure. The A&E treated him with diuretics. Mr B was under the care of the transplant team, and they continued this treatment once they reviewed him at the transplant clinic, as recommended under the relevant clinical guidelines.
37. The Trust’s records also show that transplant clinic staff measured Mr B’s BNP levels at his 16 November 2020 outpatient appointment. These were very high, at 31,829 ng/litre. According to NICE guidelines, this means clinical staff should have arranged specialist assessment and echocardiography within 2 weeks. The Trust’s records show that the transplant clinic staff followed these guidelines. The doctor who saw Mr B on 16 November discussed his condition with the Trust’s cardiology team on the day of the appointment. Mr B received a transthoracic echocardiogram 9 days later, on 25 November 2020.
38. Our cardiology adviser explained that the NICE Guidelines on acute coronary syndromes recommend using medications such as statins, aspirin, and beta blockers to manage a patient’s heart failure if clinicians decide a ‘conservative’ (or non-invasive/non-surgical) treatment approach is more appropriate. The Trust’s records show that clinical staff decided to take a conservative approach to Mr B’s cardiology care because he had coronary artery disease and renal failure, which meant surgical treatment would not be appropriate. Our cardiology adviser agreed with this decision. The Trust’s records also show that the clinical staff treated Mr B with the medications the NICE Guidelines on Acute Coronary Syndromes recommend for the management of heart failure.
39. Based on this evidence, we have determined that the Trust followed the relevant guidelines in its clinical response to Mr B’s 16 November 2020 cardiac symptoms. We therefore do not find failings in the clinical care and treatment Ms A described in this part of her complaint. This means we do not uphold this part of her complaint. We recognise that our findings do not take away from how upsetting Mr B’s health complications and death have been for Ms A.
Issue 3: Decision to send Mr B home on 19 November 2020 40. Ms A complains that the Trust sent Mr B home from his 19 November 2020 outpatient appointment but then asked to urgently admit him for inpatient treatment later that evening. She says Mr B was so unwell during his outpatient appointment that the Trust should have immediately admitted him for inpatient care instead of sending him home. Ms A also told us she was not able to arrange transport to the hospital at such short notice that evening, which delayed his admission until the next morning. We recognise that this was a very stressful and upsetting situation.
41. We used the above-referenced NICE guidelines on chronic and acute heart failure to assess this part of Ms A’s complaint. We also reviewed the Trust’s records of Mr B’s outpatient appointment and inpatient admission with our advisers.
42. Ms A told us Mr B was short of breath, struggled to walk, and retained fluid at his 19 November 2020 outpatient appointment. The Trust’s records from this appointment say Mr B reported experiencing chest ‘tightness’ in the two days leading up to the appointment, but not at the time of the appointment. Clinic staff sent Mr B home with instructions to report to his local A&E if his chest pain returned. They also ordered blood tests, made plans to review his condition in 3-4 days, and referred him for an urgent outpatient ECG.
43. As discussed under issue 2 above, Mr B’s symptoms indicated that he was experiencing heart failure. Our nephrology adviser reviewed the Trust’s clinical records and explained that Mr B did not show signs of acute heart failure (a heart attack) on 19 November 2020. This meant he had symptoms of chronic heart failure.
44. The NICE guidelines do not include specific guidance about when a patient should be admitted for inpatient treatment for heart failure. However, its guidelines on chronic heart failure say it is preferable to treat patients in the community because admitting a patient for inpatient treatment can ‘have a negative impact on their quality of life…[and] management in the community can minimise disruption for the person.’
45. The records we reviewed show that Trust staff decided to manage Mr B’s chronic heart failure in the community while keeping him under close review, as recommended under NICE guidelines. Our nephrology adviser confirmed that this was appropriate. We have therefore found that clinic staff followed the relevant guidelines when they decided to send Mr B home on 19 November 2020. This means we do not find failings in this part of Ms A’s complaint.
46. We acknowledge Ms A’s concern that the Trust asked to admit Mr B for inpatient treatment later in the evening of 19 November 2020, which was shortly after he returned home from his outpatient appointment. We recognise that this situation was very stressful, as Ms A and Mr B struggled arrange transport back to the hospital at such short notice.
47. The evidence we reviewed shows that the Trust asked Mr B to return to the hospital because clinic staff received test results later that evening which showed signs of an infection. We acknowledge that this sudden change was distressing for Ms A. We equally recognise that the Trust was responding appropriately to rapid changes in Mr B’s medical situation. This means we cannot link Ms A’s stress and distress to any failings on the part of the Trust.
Issue 4: delayed heart scan and delayed diagnosis of endocarditis 48. Ms A complains that the Trust delayed arranging scans of Mr B’s heart when he was admitted for inpatient treatment. Although Mr B was admitted for inpatient treatment on 20 November 2020, he was not diagnosed with endocarditis until 10 December 2020. Ms A says the Trust took too long to reach this diagnosis.
49. We used the European Society of Cardiology’s Guidelines for the Management of Infective Endocarditis (the ESC guidelines) to assess this part of Ms A’s complaint. We also reviewed the records of the care and treatment Mr B received during his inpatient hospital admission with our advisers.
50. The ESC Guidelines explain that it is very difficult to diagnose endocarditis. They say doctors should investigate endocarditis when patients have elevated CRP levels (C-reactive protein, which increases when there is inflammation in a patient’s body and can be a sign of infection), as was the case for Mr B. The guidelines instruct doctors to carry out blood tests to identify the type of infection present in the bloodstream of patients with suspected endocarditis, and to complete echocardiography (heart scans) to look for vegetations (infected masses) in the patient’s heart.
51. The ESC guidelines explain that a patient can be diagnosed with endocarditis when blood tests show positive cultures (i.e. bacteria in the patient’s blood) and echocardiography shows vegetations on their heart. The guidelines also say echocardiography should be repeated within 5 days if initial scans do not show vegetations on the heart of a patient with suspected endocarditis.
52. As discussed above, Mr B was admitted for inpatient treatment on 20 November 2020 because his blood tests showed a spike in his CRP levels. He also displayed symptoms of heart failure, and the Trust completed a transthoracic echocardiogram (or TTE, a heart scan on his chest) on 25 November 2020, as recommended under the NICE guidelines on heart failure.
53. The evidence we reviewed shows that neither the initial blood tests nor the 25 November echocardiogram showed signs of endocarditis. This caused the Trust’s cardiology team to think Mr B’s cardiac symptoms were caused by chronic heart failure and coronary artery disease rather than endocarditis. The evidence we reviewed with our cardiology adviser shows that the Trust gave Mr B the appropriate treatment for these heart conditions.
54. The records we reviewed show that Mr B continued to deteriorate despite this treatment. Blood tests from 26 November 2020 showed e coli cultures in his blood. This caused the Trust to suspect that he was deteriorating due to sepsis (an infection in the blood stream), so they started treating him with antibiotics. The Trust did not know the source of Mr B’s sepsis at this time, so they decided to run further tests for endocarditis.
55. The records we reviewed show that the Trust planned to carry out a transoesophageal echocardiogram (or TOE, a heart scan in which the scanner in inserted down the patient’s throat) to investigate whether Mr B had endocarditis. This is the investigation recommended under ESC guidelines when a TTE does not provide clear results, as was the case for Mr B. The ESC guidelines recommend completing a TOE within 5 days of an inconclusive TTE. The Trust did not complete a TOE until 10 December 2020, which was more than five days after his TTE. This means the Trust did not follow the time frames set out in the ESC guidelines. We considered the reasons for this delay.
56. The Trust’s records show that staff decided Mr B was not well enough to tolerate a TOE until 10 December 2020. This is because Mr B was ventilated, intubated, and sedated (i.e. he was put to sleep and a tube was placed down his throat to support his breathing). Our cardiology adviser agreed with the Trust’s judgement that it would have been too high risk to remove Mr B’s breathing support in order to complete TOE. Mr B began responding to antibiotics and he improved enough for the Trust to remove his breathing support by 10 December 2020, at which point the Trust completed a TOE. This showed vegetations on his heart, and the Trust diagnosed him with endocarditis.
57. We have considered whether the Trust’s delay in arranging a TOE amounts to a failing. Although the ESC guidelines recommend completing echocardiography within 5 days, they also acknowledge that ‘echocardiography can be challenging in the intensive care setting’ because clinicians need to balance these investigations with the patient’s other urgent care needs.
58. The evidence we reviewed shows that in this case, Mr B’s other urgent care needs prevented clinicians from completing a TOE while he was intubated. The Trust’s records also show that they completed a TOE as soon as Mr B was well enough to tolerate the investigation. Furthermore, when patients with suspected or confirmed endocarditis are in intensive care, the ESC guidelines recommend treating them with antibiotics. The evidence we reviewed shows that the Trust started giving Mr B antibiotic treatment on 26 November 2020, as recommended under the ESC guidelines.
59. We therefore find that, in the round, the Trust provided Mr B with care and treatment which was consistent with the relevant clinical guidelines. Mr B presented with a complicated clinical picture. While the Trust delayed completing the heart scan required to diagnose Mr B’s endocarditis, we are satisfied that this decision was in line with good clinical practice, as it balanced Mr B’s immediate treatment with the need to complete further investigations. The ESC guidelines make room for clinical staff to exercise this type of judgement in cases such as Mr B’s.
60. We can also see that the Trust’s decision to treat Mr B with antibiotics was in keeping with clinical guidelines. Our cardiology adviser confirmed that this treatment would not have changed if the Trust completed an earlier heart scan which showed endocarditis. We therefore do not propose to find any failings in the Trust’s actions Ms A described in this part of her complaint. We hope Ms A will be reassured to hear that Mr B’s delayed endocarditis diagnosis did not impact his care.
Issue 5: type of heart scan 61. Ms A complains that the Trust used echocardiography, rather than an angiography (or coronary angiography/angiogram, a more detailed type of heart scan), to diagnose Mr B’s endocarditis. She says this decision prevented the Trust from identifying the extent of Mr B’s heart damage, which could have contributed to his death from a heart attack in June 2021.
62. We reviewed the Trust’s clinical records and the ESC guidelines with our clinical advisers to investigate this part of Ms A’s complaint.
63. As discussed above, the ESC guidelines recommend using a transthoracic echocardiogram (TTE) to diagnose endocarditis. If this is not conclusive and the treatment team still suspect endocarditis, then the guidelines recommend using a transoesophageal echocardiogram (TOE). As discussed above, the Trust diagnosed Mr B with endocarditis after they saw vegetations on his heart during a TOE on 10 December 2020. This means the ESC guidelines did not recommend further investigations, such as an angiography.
64. The medical records we reviewed also show that Mr B had coronary artery disease. At one point during his inpatient admission, the Trust considered using an angiography to assess this condition. However, the cardiology team decided that there was no urgent need for this investigation because they were able to manage his heart disease with medication.
65. Our cardiology and nephrology advisers confirmed that the Trust’s decision to use echocardiography (the TTE and TOE) was consistent with the NICE guidelines referenced above, in paragraph 33. The Trust’s records show that the doctors who treated Mr B were concerned that he was not well enough to tolerate a coronary angiography. This is because this type of heart investigation involves injecting dye into a patient’s arteries. Our advisers explained that when a patient has endocarditis, there is a risk that the dye could dislodge the vegetations in their heart valves. Our cardiology adviser was also of the view that the risks of an angiography outweighed any potential benefits, as the investigation would not have provided the Trust with any additional information about Mr B’s diagnosis or clinical outcomes.
66. We therefore do not find failings in the Trust’s decision not to complete an angiography. The evidence we reviewed shows that the Trust completed the heart investigations recommended under the relevant clinical guidelines, and that these guidelines did not recommend an angiography.
67. Ms A asked us why the Trust did not carry out an angiography after Mr B recovered from his endocarditis. She told us she thought this investigation would have allowed the Trust find out whether his endocarditis damaged his heart. She told us she believes this would have allowed Mr B to make more informed decisions about his cardiac care after he was discharged from inpatient treatment.
68. We discussed this with our clinical advisers. They explained that Mr B had type 1 diabetes and renal disease, which can cause heart damage at any point. They said this means an angiography during Mr B’s inpatient admission may not have necessarily shown the heart damage a cardiologist found at the time of his death. We recognise that Mr B experienced significant health complications after he was discharged from inpatient treatment, and that this was extremely difficult for Ms A to witness. We hope our investigation has provided her with some reassurance that he received thorough and appropriate care from the Trust. We equally acknowledge that this does not take away from Ms A’s profound loss.