15. 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. We have done this for each component of Ms E’s complaint.
X-ray
16. Ms E complains the Trust should have made further investigations into the shadow seen on the X-ray of Mr E’s lungs taken on 4 February 2024.
17. GMC guidelines set out the principles, values and standards of professional behaviour expected of all medical professionals registered with them. Good Medical Practice says to provide good clinical care, doctors must: • adequately assess a patient’s condition(s), taking account of their history • promptly provide or arrange suitable advice, investigation or treatment • propose, provide or prescribe effective treatment based on the best available evidence.
18. Mr E went to the Trust’s ED on 4 February, presenting with symptoms of shortness of breath and swollen legs. He was examined by a consultant who recorded Mr E’s diagnoses as decompensated heart failure (a sudden worsening of symptoms in people with existing or new onset heart failure) and type 2 respiratory failure (a ventilation problem often seen in people with COPD). The consultant did an ultrasound scan and noted it showed a mild to moderate pleural effusion (an accumulation of excessive fluid in the space that surrounds each lung).
19. A chest X-ray was also taken that day. A radiologist reported the X-ray showed moderate right pleural effusion (which confirmed the consultant’s diagnosis), and opacification (where a normally transparent structure has become cloudy) was seen in the right upper lobe. They said this might represent pleural fluid, but a mass could not be excluded. The radiologist recorded ‘interval after treatment is advised’ (this refers to a rest period after treatment has been completed) and if there were any concerns, consideration should be given to an early computed tomography (CT) scan assessment.
20. The consultant recorded Mr E’s treatment plan was Bilevel Positive Airway Pressure (BiPAP which is a non-invasive medical device that helps people with breathing difficulties by delivering pressurized air through a mask) and intravenous diuretics (medication that helps the body eliminate excess water and salts by increasing urine production).
21. Mr E was admitted to a respiratory ward to continue his treatment. His symptoms improved and he was discharged on 8 February with follow up appointments scheduled to see community heart function nurses. He was told to seek appropriate medical advice from his GP or emergency services if he began to feel more unwell.
22. Our adviser says a clear management plan was put in place during this hospital admission based on Mr E’s diagnosis of pleural fluid, COPD and heart failure. They explain an ‘interval after treatment’ is standard practice to ensure any changes have settled. Our adviser says there is nothing from the information available to suggest an early CT scan (which might have diagnosed Mr E’s cancer earlier) was required.
23. On 8 March Mr E was sent to the ED by his GP, when he presented with symptoms of increased breathlessness. Mr E was admitted to hospital and a referral was made for a CT scan because there was a query about malignancy. The scan was done on 13 March and concluded that Mr E had right sided bronchial carcinoma (lung cancer).
24. We acknowledge how distressing it would have been for Mr E’s family when he was diagnosed with cancer after he was admitted to hospital in March. We have seen no omissions by the Trust in the way it treated Mr E following his earlier hospital admission in February. This is because we can see it acted in line with the GMC guidelines mentioned above.
25. We have seen the Trust treated Mr E for respiratory symptoms he presented with on 4 February, taking into account his medical history. The radiologist advised a period of rest after treatment, and a CT scan only needed to be done if there were any concerns. Mr E’s condition initially improved and there was no need for a CT scan to be done any earlier than 12 March. We will therefore not be considering this matter further.
End of life care
26. Ms E complains the Trust started end of life care for Mr E prematurely. She says Mr E was given morphine and midazolam, and his Implantable Cardioverter-Defibrillator (ICD) was disabled. Ms E says Mr E’s life could have been prolonged with oxygen and breathing treatment.
27. The guidance we have looked at when considering this part of Ms E’s complaint is Good Medical Practice ‘treatment and care towards the end of life’. This says doctors must give early consideration to the patient’s palliative care needs, and take steps to manage any pain, breathlessness, agitation or other distressing physical or psychological symptoms they may be experiencing. It also says doctors should treat patients with kindness, courtesy and respect, including being alert to signs of pain or distress, and taking steps to alleviate pain and distress whether or not a cure may be possible.
28. We have also looked at NICE guidance which covers the clinical care of adults who are dying during the last two to three days of life and includes how to manage common symptoms. The guidance gives information about recognising when a person may be entering the last days of their life and explains how anticipatory medicines can be used for people who are likely to need symptom control in the last days of life.
29. We have seen that during his first hospital admission on 4 February, Mr E completed a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form. The ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they are not able to make decisions or to express wishes.
30. The recommendation recorded In Mr E’s ReSPECT form was ‘balance extending life with comfort and valued outcomes’. It was noted in the event of an emergency he would not be transferred to the Intensive Therapy Unit (ITU) or have cardiopulmonary resuscitation (CPR); he would have non-invasive ventilation and ward-based care.
31. After Mr E was admitted to hospital on 8 March, a CT scan was done on 12 March. A radiologist reviewed the scan the next day and reported there was a large mass in Mr E’s right lung and the findings indicated right sided bronchial carcinoma with adenopathy (cancer which has spread to the lymph nodes). A biopsy confirmed the diagnosis as metastatic non-small cell lung cancer (terminal stage 4 cancer) on 15 March.
32. A doctor noted tests done that morning showed Mr E had Acute Hypoxemic Respiratory Failure (which refers to a lack of oxygen in the blood). This represented acute worsening and was not a reversible pathology which might be amenable to breathing support. The doctor spoke to Mr E and told him the cancer was incurable and would be fatal. They noted the ReSPECT form was already in place, and told Mr E the focus would be on ensuring he was comfortable.
33. The doctor recorded their plan was to prescribe anticipatory medications (anticipatory, or ‘just in case’ medications are prescribed in advance, so the patient has access to them as soon as they need them. They are prescribed for pain, anxiety and agitation, nausea and vomiting and noisy respiratory secretions. Common anticipatory include morphine for pain and midazolam for breathlessness and anxiety) and make a referral to palliative care.
34. The palliative care referral said Mr E was clinically deteriorating and ward staff felt he could be dying. A palliative care clinician visited Mr E and advised ‘just in case’ medication should be prescribed, including an opioid for breathlessness.
35. At 11.30am staff noted Mr E was very unwell and not responding to voices. He sadly died three hours later.
36. Our adviser says the administration of anticipatory end of life medication in Mr E’s case was entirely appropriate given his diagnosis and symptoms on 15 March. They say the Trust followed Good Medical Practice and NICE guidance.
37. Resuscitation Council UK guidance says one reason for considering deactivation of ICDs is to try to spare patients from receiving multiple shocks from their device as they are dying. Such shocks are relatively common during the last few hours or days of life. It says when a device is used as part of a person’s treatment it is important to maintain careful consideration of the relative risks and benefits of deactivation in that individual, compared to the relative risks and benefits of leaving the device fully active. If the person has capacity, they must be involved in this decision-making process. If they do not have capacity any decision must be made in their best interests.
38. Records show a palliative clinician visited Mr E at 2.49pm and they recorded he was actively dying at that time. They read Mr E’s notes and realised he had an ICD in place. They noted they retrieved a magnet from the Coronary Care Unit to place on Mr E’s chest (this would stop the ICD from working) but he died before it could be used.
39. There are limited records to show Mr E’s condition on 14 March. It is clear his condition deteriorated quickly on 15 March. We think the Trust acted in line with Good Medical Practice and NICE guidance when it prescribed anticipatory medication to alleviate his symptoms in the last hours of his life.
40. In the Trust’s complaint response on 7 January 2025, it said the decision to disable the ICD was based on Mr E’s clinical condition and was made in line with standard medical practice to prioritise Mr E’s comfort in his final hours.
41. We have seen Mr E’s ICD was not deactivated prior to his death despite what the Trust told Ms E. We acknowledge Ms E would have been distressed to think the ICD had been disabled prior to Mr E’s death. We think the Trust should have clarified this was not the case in its complaint response. We hope our explanation of events relating to the ICD brings some comfort to Ms E and her family.
42. We have not seen any indications of failings by the Trust in the way Mr E’s end of life care was managed. We think the Trust acted in line with Good Medical Practice and NICE guidance we have explained above. We acknowledge how upsetting it must have been for Ms E and her family not to have been with Mr E when he died. We think the Trust acted in Mr E’s best interests, and in line with his wishes on the ReSPECT form, to ‘balance extending life with comfort’, when it decided to administer anticipatory medication in the hours before his death. We will therefore not be considering this matter further.
Communication on 14 March
43. Ms E complains that on 14 March, during a phone call with a nurse, they told her Mr E’s cancer was early stage and treatable with medication.
44. NMC standards say nurses should provide information and explanation to people, families and carers and respond to questions about their treatment and care. The standards also say nurses should keep clear and accurate records and complete them at the time or as soon as possible after an event.
45. On 13 March a consultant radiologist reviewed the CT scan and reported it suggested Mr E had right sided bronchial carcinoma with adenopathy (lung cancer that has spread to lymph nodes).
46. A doctor spoke to Mr E during a ward round on 13 March and told him the CT scan suggested he had lung cancer. The doctor called Ms E (with Mr E’s consent) and updated her. Records do not show Ms E was told what Mr E’s prognosis was during the call. At this time, the outcome of a fluid biopsy taken on 11 March was still needed for a conclusive diagnosis to be made.
47. The biopsy was reviewed on 14 March and a consultant histopathologist concluded Mr E had metastatic carcinoma (stage four secondary cancer).
48. We have seen no records showing a nurse spoke to Ms E on 14 March. We do not discount Ms E’s recollection that a member of staff told her on 14 March Mr E’s cancer was early stage and treatable. It is unclear whether the call was made before the biopsy results which showed Mr E had terminal cancer were available.
49. We think this indicates a failing. In line with the NMC standards we have mentioned, the nurse Ms E spoke to should have recorded they spoke to her and the information they gave.
50. We are very sorry for how difficult and upsetting this time was for Ms E. We appreciate her expectations about Mr E’s prognosis might have been raised by the information she was given on 14 March, and passed on to Mr E, only to be told the next day he was dying.
51. In its complaint response, the Trust said it could not speak directly to the conversation Ms E was referring to but is possible the member of staff misunderstood or miscommunicated information from a handover. Unfortunately, because of the lack of evidence relating to the call with Ms E, we do not think it is reasonable to consider this matter further. The Trust accepts there might have been a misunderstanding on the part of the nurse. We think it could not do anymore in the circumstances and for this reason we will not be looking at this matter further.
Communication on 15 March
52. Ms E says she was told on 15 March that Mr E’s death was not imminent.
53. A doctor spoke to Mr E in the morning on 15 March and said they would ask the palliative care team to see Mr E to help support him with symptoms and explore his discharge planning wishes, either to home or hospice although the doctor said it was possible he would die in hospital.
54. Mr E asked the doctor to call Ms E. The doctor explained the diagnosis to Ms E and said although at present Mr E was relatively comfortable, the likely prognosis was days to short weeks. Ms E said she planned to visit Mr E on Sunday (two days later) and wanted to be called if he was imminently dying so she could visit sooner.
55. We can see that anticipatory medication was prescribed around the same time as this conversation took place. We have explained earlier that anticipatory medicine is usually prescribed in the last days of a person’s life. It was also recorded at 10.00am Mr E was clinically deteriorating and ward staff felt he could be dying. The notes do not say whether staff thought that was imminent (within the next few hours).
56. Records show Mr E’s condition deteriorated rapidly soon after. A record made at 11.30am says he was very unwell and not responding to voices. Staff called Ms E to let her know and she said she would come to the hospital. Sadly, Mr E died before his family were able to be with him.
57. The doctor spoke with Mr E’s family shortly after he died. They told the family Mr E had deteriorated more quickly than expected and apologised their prognosis was not accurate.
58. The guidance we have looked at to help us with this part of Ms E’s complaint is GMC’s Good Medical Practice. This says doctors must be considerate and compassionate to those close to a patient and be sensitive and responsive in giving them support and information. It also says when providing information to relatives, doctors must do their best to explain clinical issues in a way the person can understand, and approach difficult or potentially distressing issues about the patient’s prognosis and care with tact and sensitivity.
59. We realise how important it was for Ms E and her family to be with Mr E as he was dying. We acknowledge how upsetting it must have been for them when Mr E died before they were able to get to the hospital.
60. We have seen the doctor told Ms E in the morning of 15 March her brother was terminally ill and had a very short-term prognosis (days or weeks). Unfortunately, Mr E died much sooner than expected. Ms E was called as soon as it was clear Mr E’s death was imminent but sadly, due to the distance involved, she was not able to get there in time.
61. We have explained earlier that anticipatory medicine is usually prescribed in the last days of a person’s life. This means Mr E was not necessarily expected to die within the next few hours. That said, the Trust accepted in its complaint response that communication about Mr E’s prognosis was not clear. We think this indicates there was a failing.
62. Our complaints standards say organisations should give fair and accountable responses. Wherever possible, staff should explain why things went wrong and identify suitable ways to put things right for people. Staff should give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.
63. In its complaint response the Trust said it understood its communication about Mr E’s prognosis was not clear, especially when his condition was changing. It said to address this it was implementing a process requiring staff to contact family members as soon as palliative or anticipatory medicines were administered. The Trust apologised for any distress caused.
64. We are satisfied the Trust has acknowledged its poor communication and apologised for the distress caused to Ms E and her family. This is in line with what we would expect in the circumstances and will therefore take no further action.
Summary
65. We recognise how much Ms E’s complaint means to her, and we thank her for bringing it to us. We recognise how strongly she feels about what happened and are very sorry to hear how the death of her brother has impacted her and her family. While we acknowledge Ms E may be disappointed that we will not be considering her complaint further, we hope the information we have provided will go some way towards providing answers about what happened.