Refusal to provide further treatment, including invasive ventilation
17. Mrs L complained that the Trust did not do enough to treat Miss A on 20 April. Mrs L describes her daughter as an active young lady who was a fighter and had responded to treatment well over the years. She complains the clinical team refused to provide further treatment, including invasive ventilation, which might have saved her daughter’s life.
What national guidance says when treating a patient with COVID-19
18. The NICE COVID-19 rapid guideline: critical care in adults provides advice to doctors when assessing and treating patients with COVID-19. This guidance advises that when health providers admit a patient to hospital with COVID-19, clinicians should:
· complete a holistic assessment including discussion about their treatment expectations and care goals
· document and assess the stability of underlying health conditions, involving relevant specialists as needed
· discuss significant care interventions and involve families and care givers when making decisions about the care of children and young people, people with learning disabilities, or adults who lack mental capacity
· base decisions about escalating treatment within the hospital on the likelihood of a person's recovery
· stop advanced respiratory support or organ support when they consider it will no longer result in the desired overall goals
19. The guidance also says to assess the patient’s clinical frailty score (CFS). The CFS is a system doctors use to assess a patient’s frailty and help predict outcomes for those hospitalised. The minimum CFS is 1 (which means very fit) and the maximum is 9 (which indicates a person is terminally ill).
20. The guidance says doctors should not use the frailty score in patients who have long term disabilities, including learning disabilities or autism. This is because people with such conditions may score highly, even if they are not extremely unwell or approaching end of life.
21. The guidance says when assessing a patient with these conditions, the clinical team should perform an individualised assessment of frailty for the patient instead.
What happened when Miss A attended hospital
22. We considered if the clinical team treating Miss A acted in line with the COVID-19 rapid guideline.
23. We can see that when doctors saw Miss A, they documented a thorough assessment of her clinical presentation. They examined her and noted her previous medical issues (including her learning disability, COPD, and epilepsy).
24. They arranged a chest X-ray which showed significant deterioration in comparison to the chest X-ray taken at Miss A’s previous hospital admission.
25. Miss A did not have mental capacity to provide any information to the doctors treating her. The doctors documented they communicated with Mrs L about Miss A’s medical history, status, and the decision to place her on end-of-life care.
26. We can also see the clinical team sought advice from the ICU team in reaching this decision. The ICU team advised Miss A was not suitable for further invasive ventilation treatment. These actions were in line with the COVID-19 rapid guidance.
27. We can see in the medical records that the clinical team completed a CFS assessment for Miss A. They documented she scored as ‘7’ on the CFS. The scale says that a person with a score of 7 is ‘severely frail’ and completely dependent for personal care.
28. Miss A had a learning disability and so the clinical team should not have used the CFS to help assess whether she would benefit from further treatment. This was not in line with the COVID-19 rapid guideline. Instead, the doctors should have carried out an individualised assessment of frailty for Miss A.
29. The COVID-19 rapid guideline does not state what an individualised assessment of frailty would involve. Our adviser explained an individualised assessment is a holistic assessment of the clinical situation. They explained it includes understanding what medical problems a patient has and what their current clinical status is.
30. The NICE guideline on care of dying adults in the last days of life provides further advice to clinicians when assessing a patient who may be approaching end of life. It says clinicians should gather and document information including:
· current clinical signs and symptoms and recent investigation results
· medical history and clinical context, including underlying diagnoses
· the person’s goals and wishes
· the views of those important to the person about future care
· the views of colleagues with more experience if there is a high level of uncertainty about whether the person is entering the last days of life, or if they may recover
31. As outlined in paragraphs 24 to 27, the Trust carried out these actions. Because of this, although the Trust should not have completed the frailty score for Miss A, we do not consider this to be a failing. This is because despite this omission, the clinical team still carried out an individualised assessment for her in line with the relevant guidance.
32. Our clinical adviser said they agreed with the decision that further treatment would sadly not have been beneficial to Miss A. This is because of Miss A’s medical problems and her current clinical status at the time. While we recognise this information might be distressing for Mrs L, we hope it provides some reassurance to her about the care and treatment her daughter received.
Consideration of previous X-rays
33. Mrs L also complained that the clinical team did not consider her daughter’s previous X-rays when reaching the decision to start end of life care. She says her daughter’s lungs were always in a poor condition. She feels that had doctors compared Miss A’s current X-ray with her past ones, they would have realised this.
34. The GMC guidance says doctors should assess a clinical scenario using all available information. It states that when diagnosing or treating a patient, doctors must ‘adequately assess the patient’s conditions, taking account of their history, their views, and values’.
35. Our adviser explained that a current chest X-ray would form part of this, as would the patient’s clinical history, co-morbidities, and past medical problems.
36. They explained previous chest X-rays would only form a very small part of the assessment. Our adviser explained that in this case, it was Miss A’s current clinical situation, co-morbidities, and her likely response to ventilation (survival chances) which determined if she should receive end-of-life care. However, they explained that if her past X-rays were available, the doctors treating Miss A should have reviewed them.
37. When Miss A attended hospital on 20 April, the clinical team arranged a chest X-ray. The radiologist reported this showed ‘significant deterioration’ when compared with the X-ray taken during her previous admission on 13 April. This suggests the clinical team considered Miss A’s previous X-ray. There was no reason for the clinical team to look back any further than this because the X-ray taken on 13 April reported ‘fairly similar’ appearances to previous examinations.
38. We have not found there were any failings in this aspect of the complaint. This is because although past chest X-rays would only form a very small part of a clinical assessment, there is evidence the clinical team still considered them.
Removal from A&E
39. Mrs L complains a nurse sent her away from A&E despite her being the “voice” for her daughter who had learning disabilities. Mrs L tells us this was because she advised the nurse that she recently had symptoms of COVID-19. However, Mrs L advised us she had almost reached the end of her two-week isolation period.
40. We can see the separation from her daughter was incredibly distressing to Mrs L at an already difficult time.
41. The COVID-19 infection prevention guidance provides advice on allowing visitors into the hospital to see patients. This explains that healthcare facilities should restrict this to essential visitors only, such as for paediatric patients.
42. It also says visitors with COVID-19 must not enter the healthcare facility and staff should encourage visitors who are symptomatic to leave. It says staff must not permit them to enter any areas where there are extremely vulnerable patients.
43. We can see from the medical records that a nurse asked Mrs L to leave A&E because she advised she recently had symptoms of COVID-19. The nurse does not dispute this occurred.
44. We have found the nurse’s actions were in line with the national guidance in place at the time. This is because the guidance said staff should not allow those with COVID-19 into the hospital environment. This is to protect other patients and staff.
45. We fully appreciate Mrs L’s concern that because the nurse sent her away, she was not able to be involved in important discussions about her daughter’s treatment. However, the Trust arranged for Mrs L to go inside a specialised room in the hospital, which prevented infected air entering the hospital environment.
46. We can see from the medical records this allowed the clinical team to keep Mrs L updated on what was happening with her daughter’s care. The clinical team documented conversations in the medical records in relation to the Do Not Attempt Resuscitation order, ventilation, and the start of end-of-life care. The Trust acted flexibly to ensure Mrs L was still able to be involved.
47. We can also see that towards the end of Miss A’s life, the Trust arranged for Mrs L to spend some time with her. This was in line with the policy the Trust had in place for allowing visitors. The policy did not outline an absolute requirement for this to happen and suggests that this was down to the discretion of staff. We have found there were no failings in this aspect of the complaint.