Communication of the diagnosis 29. NICE guidance on patient experience says at 1.5.11 ‘give the patient information, and the support they need to make use of the information, in order to promote their active participation in care and self-management’.
30. At 1.5.17 it says, ‘ensure that the patient and their family members and carers feel adequately informed, prepared and supported to use medicines and equipment and to carry out self-care and self-management’.
31. Mrs R says during the appointment on 24 April 2019 the Trust did not communicate to her grandmother what her diagnosis was and the severity of it. She says they had a right to know how severe the aortic stenosis was.
32. The Trust said the cardiologist and Mrs L had a detailed discussion about her diagnosis during the appointment on 24 April 2019. It did not consider it got anything wrong.
33. On the GP referral letter to the Trust, it says ‘known aortic stenosis for surveillance’. We consider this indicates that Mrs L and family were already aware of her aortic stenosis diagnosis before the appointment in April.
34. On the clinic letter from the appointment in April, the diagnosis states ‘aortic stenosis’. It says ‘Mrs L’s symptoms may be suggestive of severe aortic stenosis with shortness of breath. There may be aggravation of her asthma as well’.
35. The letter also says ‘had a detailed discussion with her regarding further management plan. One thing she is very clear is that she is not keen for any type of operation’.
36. We do not know from this, exactly what was discussed. We have carefully balanced all accounts, as there are conflicting views on what happened.
37. Our view is the clinic letter indicates it is more likely than not, that the cardiologist, on balance, explained to Mrs L that her likely diagnosis was severe aortic stenosis. We think this on its own indicates the seriousness of the disease.
38. Our cardiology adviser helped us understand that the cardiologist should have discussed the progression and prognosis of the aortic stenosis.
39. Our finding is the cardiologist did not inform Mrs L adequately about the progression of her aortic stenosis or prognosis.
40. Mrs R informed us that they were unaware of the severity of her condition. Further, the clinic letter does not explain what was discussed or specifies that a discussion took place on prognosis, for example. It does not provide any detail of the conversation.
41. On the balance of probabilities, our finding is the cardiologist did not discuss Mrs L’s diagnosis and the severity of it in as much detail as they should have. This is a failing and fell short of the NICE guidance noted above. We explain our finding on the impact later in this report.
Treatment 42. Mrs R says the cardiologist mentioned surgery to her grandmother but did not stress what the disease could do or lead to. She said the cardiologist instead discharged Mrs L back to her GP.
43. The Trust in its response said the surgical replacement of the valve is the only option for severe aortic stenosis. It said if surgery is not the patient’s choice or the recommended option by the cardiologist, the management is for symptoms only. They explained this is medical management only.
44. NICE guidance on aortic stenosis says at 2.2 ‘surgical aortic valve replacement with an artificial (biological or mechanical) prosthesis is the conventional treatment for patients with severe symptomatic aortic stenosis who are well enough for surgery’.
45. It says ‘optimal medical care has traditionally been the only option for those whose condition is unsuitable for surgery. Aortic balloon valvuloplasty is occasionally used as bridging or palliative treatment’. This is a cardiac intervention to open a stenotic or stiffened heart valves using a catheter with a balloon on the tip. It stretches the aortic valve with the aim to improve aortic stenosis symptoms.
46. The guidance goes on to say ‘transcatheter aortic valve implantation (TAVI) is another less invasive alternative treatment’. TAVI is a minimally invasive procedure where a narrow flexible tube is put into a blood vessel in the upper leg or chest and is passed towards the aortic valve in the heart. The tube is used to fix a replacement valve over the top of the old one.
47. NICE guidance on acute heart failure says at 1.6.2 ‘consider TAVI in selected people with heart failure caused by severe aortic stenosis, who are assessed as unsuitable for surgical aortic valve replacement’.
48. We have reviewed the records. We can see during her appointment on 24 April 2019, the letter from the cardiologist at the Trust to Mrs L’s GP says:
‘had a detailed discussion with her regarding further management plan. One thing she is very clear is that she is not keen for any type of operation. I have explained to her that if her symptoms worsen in the future, that as she is not keen for any operation and she would be high risk for any aortic valve surgery in view of her comorbidities, I would just continue with her medications and deal with her symptomatically. I have not arranged for any surveillance echo for her and have discharged her back to your care. However, if she needs further cardiology input in the future please do not hesitate to contact me’.
49. Our cardiology adviser explained to us, that whilst surgery in a patient who is 88 years old would be uncommon, percutaneous interventions (non-surgical procedures used to treat blockages in a coronary artery) would be common.
50. They helped us understand that percutaneous options include TAVI and aortic balloon valvuloplasty, as in the NICE guidance mentioned above.
51. We have carefully reviewed the evidence available to us. The clinic letter does not explain in detail what was discussed. It says Mrs L was not keen for ‘any type of operation’ and that they had a detailed discussion on her management plan.
52. Our cardiology adviser helped us understand that there is only one type of surgery available to treat aortic stenosis. This is surgical aortic valve replacement as mentioned in NICE guidance. Therefore, it is unclear what the cardiologist meant by ‘any type of operation’. Our view is this could indicate that the cardiologist explored other treatment options with Mrs L, such as TAVI.
53. We asked the Trust about this. It said the cardiologist left the Trust some time ago so it could not contact them. They explained TAVI is a significant operation with a high mortality risk. They said it would have explored all options with Mrs L, who at the time was not keen on any type of operation.
54. Our cardiology adviser’s view, which we agree with is that cardiologist included TAVI as ‘a type of operation’.
55. Our finding is the notes show the cardiologist discussed Mrs L’s treatment options available to her. As she said she was not keen for any type of operation, the cardiologist did not explore this further.
56. Our view is the cardiologist followed NICE guidance above. On balance, the evidence shows they explored treatment options during the consultation. Our finding is this was not a failing.
Echocardiogram 57. European Heart Journal guidance says ‘echocardiography is the key diagnostic tool. It confirms the presence of aortic stenosis, assessed the degree of valve calcification, left ventricle (LV, the pumping action of the heart’s left ventricle which circulates oxygenated blood from the left ventricle through the aortic valve to the rest of the body) function and wall thickness; detects the presence of other associated valve disease or aortic pathology and provides prognostic information’.
58. GMC Good Medical Practice says at point 15b, doctors should ‘promptly provide or arrange suitable advice, investigations or treatment where necessary’.
59. Mrs R says the Trust did not arrange a timely echocardiogram from November 2020. She says this could have determined the severity of her grandmother’s condition.
60. The Trust in its response said Mrs L’s GP sent a referral on 3 March 2021 for a repeat echocardiogram appointment which was arranged for 13 April 2021. Sadly, Mrs L died before this was undertaken.
61. It explained as Mrs L was not keen for any heart surgery and a decision was made to manage her conservatively, another echocardiogram was unlikely to change the management plan.
62. During the appointment in April 2019, the cardiologist carried out an echocardiogram on Mrs L. The clinic letter they sent to the GP said ‘I have not arranged for any surveillance echocardiogram for her and have discharged her back to your care. However, if she needs further cardiology input in the future, please do not hesitate to contact me’.
63. Mrs L’s GP then referred her to the Trust for an echocardiogram on 3 March 2021. The Trust scheduled this for 13 April. However, Mrs L sadly died before this.
64. As the GP referred her in March, we have carefully reviewed if the Trust should have prioritised this referral or scheduled to carry out the echo sooner than it did.
65. British Society of Echocardiography at point 2.1b says ‘repeat assessment of known stenosis with change in clinical status’. We are satisfied this guidance was in place at the time.
66. Within the records we can see that the Trust performed a chest X-ray on Mrs L on 12 March 2021 and the results were ‘overall appearances suggest congestive cardiac failure’ (heart failure).
67. NICE guidance on chronic heart failure says at 1.1 where patients have suspected heart failure, an echocardiogram should be arranged within two weeks.
68. The guidance further notes at 1.4.1.3 ‘the frequency of monitoring should depend on the clinical status and stability of the patient. The monitoring interval should be short (days to two weeks) if the clinical condition or medication has changed, but is required at least six-monthly’.
69. Our cardiology adviser explained that because Mrs L’s diagnosis of severe aortic stenosis had already been established at this point, the Trust should have ideally prioritised the referral letter.
70. We also consider because the chest X-ray was suggestive of heart failure, the Trust should have arranged to conduct the echocardiogram sooner than it did. Our view is it should have arranged it within two weeks of the X-ray suggesting heart failure.
71. The Trust should have arranged the echocardiogram to take place at the very latest 26 March. It instead arranged it for 13 April (over two weeks later than it should have).
72. We have found a failing here. We will assess the impact of this later in our report.
Asthma consultation 73. Mrs R says the Trust did not see Mrs L face-to-face, despite knowing how bad her asthma was. She explained the Trust should have seen Mrs L face-to-face as she was struggling to breathe from November 2020. She told us a telephone consultation was not enough. She says the Trust only offered a face-to-face consultation when it was too late.
74. The Trust in its response apologised it was unable to provide routine face-to-face clinic appointments during the COVID-19 pandemic, which affected Mrs L.
75. The Trust’s policy on face-to-face appointments says, ‘possibly patients in vulnerable groups e.g. chronic illness/pregnancy would be better managed via virtual technology rather than face to face to lessen the risk of contracting Covid 19’. We consider this would have been applicable to Mrs L because she had a diagnosis of aortic stenosis and asthma.
76. We understand that Mrs L had routine appointments at the Trust to review her asthma care, which typically took place every six to twelve months from 2007. The respiratory nurse changed Mrs L’s routine appointment on 10 June 2020 to a telephone consultation due to COVID-19 restrictions at the time.
77. The next appointment was scheduled for 30 September 2020; however, Mrs L did not answer so it was rescheduled. It was rescheduled to 4 November 2020, and Mrs L had a telephone consultation with the respiratory nurse.
78. During the appointment, Mrs L reported she had ongoing issues with her nasal sinus’s and has constant congestion with some postnasal drip. She said she needed to take the Symbicort (a prescription combination inhaler used to manage and prevent symptoms of asthma) at an increased amount of two puffs three times a day. She also said she needed salbutamol (a fast-acting inhaler used to quickly relieve symptoms of asthma and COPD such as coughing, wheezing and shortness of breath).
79. The respiratory nurse offered her a nasal spray however Mrs L said she would like to continue with her usual spray. The nurse wrote to Mrs L’s GP following this appointment and said they will arrange to see her face to face because Mrs L had difficulties hearing.
80. The Trust explained it placed her on the follow up schedule for a face-to-face appointment. Mrs L’s GP then wrote to the Trust around February or March requesting an appointment for an asthma review.
81. We can see the Trust arranged a face-to-face consultation with Mrs L for 21 April 2021. Sadly, she died on 13 April.
82. We have carefully reviewed if the Trust should have seen Mrs L for an asthma consultation face-to-face, from November 2020.
83. We sought advice from our nursing adviser. They explained to us that during the appointment in November, Mrs L did not report symptoms to suggest the Trust should have seen her urgently face to face. For example, she did not report shortness of breath.
84. They explained that there are difficulties in assessing patients via telephone. They said that this was in the height of the pandemic and COVID-19 was a high-risk respiratory condition.
85. We consider there were risks involved in seeing patients face to face from November 2020, particularly because COVID-19 is a respiratory condition.
86. Our finding is the Trust appropriately assessed Mrs L via telephone in November, in line with Trust policy noted above. As the policy suggests, patients like Mrs L may be better managed via methods such as telephone consultations.
87. Following the appointment on 4 November, the respiratory nurse arranged a face-to-face consultation due to the difficulties with her hearing. We agree with our adviser, in that Mrs L did not report any symptoms which suggested the Trust should have seen her face to face urgently.
88. From the clinic letter, it does not say Mrs L reported shortness of breath. For these reasons, our view is the Trust should not have arranged the face-to-face appointment earlier than it did.
89. We consider there would have been risks in reviewing her face-to-face. The Trust could instead assess her via telephone. When the appointment presented with difficulties due to her hearing, the Trust then arranged to see her face to face. We have not identified any failing and consider the Trust reviewed Mrs L via telephone when it was appropriate to do so.
Findings on impact 90. We consider the Trust did not do the following in line with the relevant guidelines: • did not communicate to Mrs L the progression on her condition or likely prognosis • did not prioritise Mrs L for an echocardiogram.
91. We appreciate how the Trust’s poor communication around Mrs L’s severe aortic stenosis diagnosis contributed to Mrs L and family not being aware of her prognosis, or the severe nature of her condition. We also recognise that, as Mrs R explained, they could have changed her living arrangements as she was living alone.
92. Mrs R also explained that Mrs L was ‘left guessing’ what was wrong with her. She also said it caused her and family psychological distress as they did not expect her to die when she did. She says they have been left traumatised by what happened.
93. We are very sorry to hear how much this impacted both Mrs L and family. We understand this to have been, and continues to be, very distressing.
94. We have not linked the failing in communication to Mrs L being ‘left guessing’ what was wrong with her. This is because our view is the aortic stenosis diagnosis was already established as it was included within the GP referral letter.
95. The Trust informed us that Mrs L’s aortic stenosis progressed from moderate in 2017 to severe in 2019. This suggests, Mrs L would have been aware of her diagnosis.
96. Our view is the cardiologist, from the clinic letter, explained to Mrs L during her appointment in April 2019 that her diagnosis was severe aortic stenosis. Therefore, our view is Mrs L was aware of her condition.
97. We link the Trust’s failing in not communicating fully to Mrs L, during the appointment in April, to distress. We consider if the cardiologist had this discussion, they could have managed their expectations better.
98. We also consider if the Trust had communicated to Mrs L about the severity of her condition, she may have decided to undergo treatment (such as TAVI). We do not know for certain if Mrs L would have chosen to undergo treatment such as TAVI, if not for the failing we have identified.
99. We have explored the likelihood of Mrs L choosing to undergo treatment, along with what the impact of choosing to undergo treatment could have been.
100. NICE guidance on aortic stenosis explains at paragraph 4.1 about a randomised trial of 358 patients, who were unsuitable for surgical aortic valve replacement. It says ‘patients who had TAVI had significantly lower all-cause mortality and cardiovascular mortality compared with medical management at a follow up of 1, 2 and 5 years (31% compared with 51% at 1 year, 43% compared with 68% at 2 years and 72% compared with 94% at 5 years for all-cause mortality and 21% compared with 45% at 1 year, 31% compared with 62% at 2 years and 58% compared with 86% at 5 years for cardiovascular mortality’.
101. Therefore, this study suggests there may have been a lesser chance of Mrs L dying when she did, had she agreed to undergo TAVI.
102. Our cardiology adviser explained that if Mrs L agreed to TAVI as a treatment option, the Trust would have had to assess her, and agreed she was suitable. They further explained that there would be a high risk of complications due to her age (88 years old). They helped us understand that this treatment option was not as advanced in 2019, due to technology.
103. They further explained to us that due to her age, even after TAVI, she may have not had a good quality of life as other illnesses may have presented. They said in similar patients, the quality of life may be poor even if the quantity is increased.
104. We can also see that the Trust noted she would be ‘high risk for any aortic valve surgery in view of her comorbidities’.
105. We have carefully reviewed the evidence available to us and our cardiology adviser’s view. We have found Mrs L would more likely than not still not have chosen to undergo treatment. This is because the clinic letter states she was not keen for any type of operation. As explained above, we consider this covered TAVI.
106. Due to the risks, particularly with Mrs L’s age at the time, our finding is it is more likely than not that Mrs L would still not have chosen to undergo treatment if the cardiologist explained the progression and prognosis.
107. We consider we can link the failings to distress. This is because we consider Mrs R and family did not expect to lose Mrs L when they did due to the poor communication we have identified. Our finding is if the Trust’s communication was better, they could have been better prepared for Mrs L’s decline.
108. We have also explored the impact of the failing in not prioritising the echocardiogram. Our cardiology adviser explained to us, that it would have added up to date clinical information.
109. They further explained it would be unlikely to change Mrs L’s management plan if she was not willing to have any treatment.
110. Our view on this is if the echocardiogram was done sooner, Mrs L would have still not chosen to undergo treatment. From the clinic letter, as explained above, it seems Mrs L was not keen for any treatment. We therefore have not so far found any clinical impact for the failures we have identified.
111. We have considered our severity of injustice scale. Our view is the clinical impact sits on level three because it includes instances where ‘failures in care which caused moderate distress or discomfort to the patient and/or which added to the family’s bereavement after the patient’s death’.
112. Our finding is it sits on this level because Mrs L’s family experienced psychological distress due to their concerns that the care and treatment fell below expected standards, at an already difficult time.
113. Our finding is that we cannot link the failings we have identified to Mrs R’s loss of wages. This is because we have not found the sad loss of Mrs L could have been avoided, or the outcome could have changed at all. Therefore, we are not recommending the Trust to reimburse her loss of wages.