University Hospitals of Morecambe Bay NHS Foundation Trust

5. Mr O complains on behalf of his brother, Mr A, about the care and treatment he received for COVID-19 from University Hospitals of Morecambe Bay NHS Foundation Trust (the Trust), between 10 and 14 April 2020. Specifically:

· the Trust made a ‘Do Not Attempt Resuscitation’ (DNAR) decision inappropriately early in Mr A’s admission due to his pre-existing condition and reduced mental capacity · the Trust did not adequately discuss the DNAR with Mr A’s family or explain the potential impact of what they were being asked to consider. This led to relevant information about his brother’s health and quality of life not being considered by the Trust · When Mr A was struggling to take oxygen, the Trust denied Mr A treatment on its Intensive Therapies Unit despite capacity being available.

6. Mr O says the Trust’s early DNAR decision, and failure to explain the reason for the discussion with the family, led to the Trust concluding that critical care was not appropriate for Mr A. Mr O says this was based on incomplete information.

7. Mr A died from COVID-19 on 14 April, and Mr O believes his brother’s death could have been avoided if the Trust had admitted him to its Intensive Therapies Unit.

8. Mr O wants the Trust to admit its decision making was flawed for his brother, and to apologise for this. He also wants the Trust to review its care of vulnerable people so people with learning difficulties, or reduced mental capacity, can receive equal access to care.

9. Mr A had Down's Syndrome and learning difficulties and was over 50 years old at the time of the events complained about. On 10 April 2020, Mr A was admitted to hospital with shortness of breath, a persistent cough, and a high temperature. As part of the Trust's A&E assessment, it was identified that he had possible COVID-19.

10. Around 7.30pm on 10 April a consultant at the Trust spoke to Mr O and his mother to discuss Mr A’s baseline care. The consultant recorded from this conversation that Mr A lived in supported living, required assistance for all activities of daily living, and could only mobilise for a short distance with a frame. The consultant also noted that Mr A was severely frail.

11. From this discussion, the consultant recorded that they informed Mr O and his mother that further interventions such as ventilation or Continuous Positive Airway Pressure (a machine used to maintain oxygen while someone sleeps to prevent a collapse of the airway) would likely have a poor outcome and Mr A would be unlikely to survive. They also stated that if Mr A’s heart or lungs were to stop functioning, that cardiopulmonary resuscitation would not be in his best interests. The Trust decided from this that Mr A would receive ward-based care only.

12. In his complaint to the Parliamentary and Health Service Ombudsman, Mr O agreed that this conversation took place, and that the information about his brother’s dependence on others in activities of daily living and frailty was accurate. However, he described it was unclear to him and his mother what they were being asked to consider, so they were not able to provide information about Mr A’s quality of life. He informed us that he feels the Trust made the decision not to offer CPR or critical care too quickly, and this was based on his brother’s pre-existing learning difficulties.

13. Mr A was admitted to a ward on 10 April. He was offered oxygen therapy via face mask and nasal cannula to manage his oxygen saturation levels. However, the Trust recorded that he had difficulty tolerating these, despite encouragement, and kept removing the face mask and cannula.

14. Mr A then tested positive for COVID-19 on 12 April. The Trust discussed his prognosis with his family that day. The Trust recorded that it informed the family that Mr A was very unwell and that he had tested positive for COVID-19. It was recorded that it was doing what it could to support Mr A, though it was having difficulty encouraging him to engage with oxygen therapy, and it would inform them if it believed that he was approaching end-of-life.

15. Mr A’s condition continued to deteriorate, and his family were informed on 14 April that they should come into the hospital for an end-of-life visit. Mr A sadly died a few hours later, with his family present.

16. Following Mr A’s death, and a discussion with the Learning Disability Mortalities Review Team, Mr O complained to the Trust on 2 June about how the decision not to attempt CPR for his brother was made. He also complained that the Trust did not refer his brother to intensive care despite a Freedom of Information request showing that capacity was available at that time.

Timing of DNAR decision

21. Our decision is that there is no evidence of a failing in the Trust’s DNAR decision on 10 April. From the evidence we have seen, we consider that this was in line with the relevant NICE guideline, and there is no evidence that Mr A’s learning disability affected the timing of this decision.

22. As set out previously, Mr O complains the Trust made the DNAR decision inappropriately early in Mr A’s admission due to his pre-existing condition and his reduced mental capacity. Further to this, Mr O says the Trust then did not adequately discuss this with Mr A’s family or give further information to explain the impact of what they were being asked to consider.

23. The relevant standard for CPR decisions, in the context of the COVID-19 pandemic, is the NICE guideline NG 159. This guideline was created on 20 March 2020 in response to the COVID-19 pandemic, to maximise the safety of patients who may need critical care at that time. It was amended on 31 March to clarify when the Clinical Frailty Scale should be used. This is a standard assessment tool used to evaluate a patient’s frailty against specific criteria, to score their overall health and how vulnerable they would be to a poor health outcome.

24. In line with section 1.1 of NICE guideline NG 159, NHS Trusts were recommended to assess all patients promptly on their admission to hospital even if they had suspected COVID-19. In the context of the early stages of the COVID-19 pandemic, most NHS Trusts had a policy of assessing all patients on admission to consider whether they would be suitable for escalation to intensive care.

25. As part of our investigation, the Trust provided us with its ‘COVID-19 Advanced Respiratory Support Guideline’ which was published on 8 April 2020. This describes that all patients with a working diagnosis of COVID-19 should be assessed for suitability for invasive ventilation in case their condition deteriorates.

26. NICE guideline NG 159 states that for people with stable long-term disabilities, learning disabilities or autism, then the Clinical Frailty Scale should not be used, and an individualised assessment should be carried out for the patient instead.

27. From the evidence we have seen, the Trust did complete an individualised assessment. Mr A’s baseline needs were discussed with those who knew him best, and his mobility issues and dependence on others for activities of daily living were recorded.

28. In line with section 2.4 of NICE guideline NG 159: if the results of the assessment suggest that that the patient has increased frailty, the guideline recommends that the Trust then sensitively discuss a DNAR decision with the patient.

29. As the Trust considered that Mr A did not have capacity to discuss the decision about CPR, it instead decided to discuss this decision with his family. This was this in line with the GMC’s guidance ‘Treatment and care towards the end of life: good practice in decision making’ regarding CPR and engaging the family members.

30. From the evidence we have seen, our decision is that Mr A’s Down’s Syndrome and learning disabilities did not affect the Trust’s assessment of his frailty, or its decision making around whether to attempt CPR on 10 April. This is because the Trust would have been expected to do this for all patients on admission, in line with its own policy and the relevant NICE guideline.

31. We consider that the Trust also correctly considered Mr A’s learning disability when making this decision, by specifically conducting an individualised assessment rather than relying on the Clinical Frailty Score. As we have found no failings in the Trust’s approach to a DNAR decision, our decision is to not uphold this part of the complaint.

Discussion of the DNAR decision

32. Our decision is that there is no evidence of a failing in how the discussions about the DNAR decision for Mr A were conducted. From the evidence we have seen, the Trust acted in line with guidance from GMC and the BMA in how it communicated this decision.

33. The GMC’s ‘Treatment and care towards the end of life: good practice in decision making’ describes that if a clinician considers that CPR will not be successful, the patient should be sensitively informed of this. If the patient lacks capacity, then any legal proxy or others close to the patient should be informed of the decision and the reasons for this. As outlined earlier, we have seen that the Trust decided to contact Mr O and his mother, as it considered Mr A did not have capacity to discuss this decision.

34. The BMA’s ‘Decisions relating to cardiopulmonary resuscitation’ describes in section 5.3 that where CPR will not be successful, and the patient lacks capacity, the discussion should ‘establish and agree goals of care with those close to the patient’. The aim of the discussion should be to achieve a shared understanding of the patient’s condition and goals of care rather than just inform them of a decision.

35. From the Trust’s record of the discussion, it clearly describes its consideration for escalating Mr A for further treatment, such as ventilation or CPR, would not be in his best interests. The Trust says this would be unlikely to succeed due to his frailty and baseline needs and would be likely to cause him more harm. It also records that oxygen treatment and antibiotics would be provided to Mr A to support him and keep him comfortable. Though we cannot know exactly what was said by individuals during the discussion, on the balance of probabilities, and based on the records, our decision is that the discussion was carried out in line with BMA guidance.

36. There is information within the GMC’s guidance about managing significant disagreement with a DNAR decision, however, as no concerns were raised about the decision at the time it was not possible for the Trust to follow this.

37. We recognise that Mr O and his mother may have found the decision difficult to process, but we have seen that there were other discussions about Mr A’s end-of-life care on 12 and 14 April when any questions or further information could be raised.

38. In line with section 141 of the GMC’s guidance, a clinician or Trust is not obliged to attempt CPR if it considers that this would not be of overall benefit to the patient. Though the relevant BMA guidance relating to whether to attempt CPR include ‘the person’s human rights, including right to life… right to respect for a private and family life’ most are physiological in nature such as the likelihood of restarting breathing for a sustained period, level of recovery that can be expected, and likelihood of the patient experiencing ongoing pain.

39. From the Trust’s records of the discussion on 10 April, it explained that it considered that CPR was unlikely to be successful, and Mr A was unlikely to recover due to his severe frailty. Though we recognise Mr O would have appreciated the opportunity to provide more information about his brother’s quality of life and personality, our decision is that this would not have been likely to affect the Trust’s decision about CPR being unsuccessful and not in Mr A’s best interests.

40. From the evidence, we have seen that the Trust informed the family of the reasons for its DNAR decision for Mr A, in line with the BMA’s guidance. Our decision is that there is no evidence of a failing by the Trust here. As such, we have not upheld this part of the complaint.

Decision not to admit Mr A to intensive care

41. Our decision is that the Trust’s decision not to escalate Mr A to critical care was appropriately made. From the evidence we have seen, the Trust acted in line with the relevant NICE guideline and there is no evidence that Mr A’s learning disability affected this decision.

42. As with the DNAR decision, the relevant standard in this case was the NICE guideline NG 159. This states in section 2.2 that a Trust should involve its critical care team in a discussion about an admission to critical care where either: · The patient has been assessed as less frail, is likely to benefit from critical care support and wants this treatment, or · The patient has been assessed as frailer but there is uncertainty about the likely benefit of critical care support and critical care advice is needed to decide on whether to admit them

43. From the evidence we have seen, neither of these situations applied in Mr A’s case. From the individual assessment, and the description of his functional status (which indicated that his physical fitness was severely impaired), he was significantly frail and was unlikely to recover from his illness. The recorded assessment is thorough and met the standard of assessment that would be expected, in line with section 15a of the GMC’s Good Medical Practice.

44. The Trust’s ‘COVID-19 Advanced Respiratory Support Guideline’ advises that, as a rule, elderly and frail patients, or patients with co-morbidities, have very poor outcomes with mechanical ventilation and that an early discussion about the ceiling of care is vital for these patients.

45. Our decision is that the Trust acted in line with its guideline. This is because there is evidence that the Trust informed Mr O and his mother that Mr A would be unlikely to survive the treatments offered in the Trust’s Intensive Care ward (intubation and ventilation), and discussed that it would be likely to cause him more physical harm than good. It is recorded that it informed Mr O and his mother that the Trust would provide ward level care to Mr A and treat him supportively with oxygen therapy.

46. Though the discussion about Mr A’s ceiling of care happened at the same time as the DNAR decision, to clarify, we have seen no evidence that this inappropriately affected the decision not to escalate Mr A to intensive care. Section 143 of the GMC’s ‘Treatment and care towards the end of life: good practice in decision making’ specifies a DNAR decision would only apply to CPR and does not imply any other treatment would be withdrawn or withheld.

47. Though the decision not to escalate to intensive care was made and discussed at the same time as the DNAR decision, we have seen that the Trust followed the appropriate NICE guideline NG 159 by conducting an individualised assessment. Considering his physical status, our decision is that Mr A would not have been suitable to escalate to intensive care, in line with the NICE guideline NG159. This is irrespective of his Down’s Syndrome and learning difficulties.

48. We recognise Mr O’s view that if there was capacity, then the Trust should have admitted his brother to intensive care, even if the probability of successfully treating Mr A’s COVID-19 was low.

49. In line with section 16i of the GMC’s ‘Treatment and care towards the end of life: good practice in decision making’ the Trust was not obliged to provide this treatment if it felt that it was not clinically appropriate or of overall benefit to Mr A. Though the GMC guidance has a process to follow if there is a disagreement between the doctor making the decision and the patient’s representative/legal proxy, we have seen no evidence that concerns were raised about the Trust’s decision not to admit Mr A to intensive care while he was alive.

50. Mr O developed concerns about the decision not to treat his brother in intensive care following Mr A’s death, and our decision is not meant to diminish those concerns. The focus of the discussion about of end-of-life care with a patient, or those close to them, is to reach a consensus about what treatment and care would be of overall benefit to the patient, as set out in section 46 of the GMC’s ‘Treatment and care towards the end of life: good practice in decision making’. As such, if there was not an indication that those close to the patient disagreed with the planned care at the time, we would not expect the Trust to have proactively followed the process to resolve disagreements, such as offering a second opinion.

51. From what we have seen, the Trust considered and implemented other interventions to keep Mr A comfortable, within the ceiling of care agreed, such as providing him with sedation to minimise the distress he was experiencing because of the oxygen therapy.

52. Considering the all the evidence we have seen our decision is that the Trust’s decision to not admit Mr A to intensive care was in line with its own guidance and the relevant NICE guideline. As we have seen no evidence of a failing by the Trust, we have not upheld this part of the complaint.

1. We were sorry to learn of the devastating impact Mr A’s death had on his family. We recognise the scale of emotional distress this has caused them because of the care and treatment Mr A received. We can also understand the family feel let down by the Trust, in terms of how they treat vulnerable patients.

2. Based on the evidence we have decided to not uphold this complaint and will not make any recommendations to the Trust.

3. We consider that the Trust’s decision to assess whether Mr A was suitable for cardiopulmonary resuscitation (CPR) or intensive care treatment, early in his admission, was in line with the clinical standards at the time. We have seen no evidence that Mr A’s Down’s syndrome or learning difficulties played a part in the Trust’s decision to carry out this assessment.

4. From the evidence we have seen around decision making, the Trust appropriately assessed Mr A’s frailty and considered his learning disability. Its decision not to offer CPR or intensive care treatment was also in line with the relevant clinical standards, and we consider the reasons for this decision were appropriately communicated to his family.