Communication
18. Mrs U told us she thought the Trust gave misleading information when her dad needed to be readmitted. She explained they had been told to bring him back in because he had an infection, but the doctors then told them he had cancer. She said they felt under pressure to bring him back in.
19. Mrs U said if they had known their dad had cancer they would have kept him at home, as she feels his symptoms would have been better treated at home, with family he knew. We understand what a confusing and upsetting time this was for the whole family.
20. The records show the Trust held a neuro-oncology MDT meeting (a multi disciplinary team meeting for brain cancer that involves relevant staff to make decisions) on 27 May. This meeting concluded the imaging could show infection, not cancer. It recommended the Trust review whether Mr O had an infectious disease. Our physician adviser explained this was important, as infection is usually fully treatable, whereas cancer spread to the brain is not.
21. The Trust consultant emailed his colleagues on 11 June, outlining the discussion he had had with Mr O’s daughter that day. The consultant explained infection was a possible cause of what was seen on the scan and for Mr O’s deterioration, although cancer was also still possible. The email stated Mr O had agreed to come into hospital via A&E for further tests.
22. We have seen correspondence between the treating professionals, recognising how difficult this was for the family. These emails commented on the unfortunate delays caused with readmitting, as COVID-19 meant all admissions had to pass through A&E.
23. The relevant guidance is GMC good medical practice. This says:
‘You must work in partnership with patients, sharing with them the information they will need to make decisions about their care, including: a. their condition, its likely progression and the options for treatment, including associated risks and uncertainties b. the progress of their care, and your role and responsibilities in the team c. who is responsible for each aspect of patient care, and how information is shared within teams and among those who will be providing their care’
24. The Trust’s communication with Mrs U, acting as Mr O’s advocate, on 11 June regarding the reason for readmission was in line with the above guidance. We understand the distress the family experienced as a result of the developing medical picture. We think the Trust tried to manage this as much as it was able.
25. Our adviser reviewed the records and noted there were frequent discussions with Mr O’s family while he was an inpatient, about the need for further investigations. They said the documentation of the discussions was of a high standard. We consider the Trust’s communication about Mr O’s needs and treatment plan was in line with the GMC guidance on good practice in handling patient information, which says ‘You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support, while respecting the patient’s right to confidentiality’.
Treatment plan
26. Mrs U said there was no overarching plan that looked at all the issues her dad was facing. She told us it felt like the Trust was doing lots of separate tests, without any recognition her dad was at the end of his life.
27. We asked our physician adviser to give an account of the treatment plan once Mr O had been admitted.
28. The Trust carried out a neurology review on 15 June. This concluded Mr O’s weakness could be due to a post-infection issue, myasthenia gravis (muscle weakness due to block of signals from nerves) or cancer.
29. The Trust decided it needed to carry out further tests, including a lumbar puncture (a thin hollow needle is inserted into the lower part of the spine to collect a sample of cerebrospinal fluid). It was initially unable to undertake a lumbar puncture because Mr O was on clopidogrel treatment. This is a strong blood thinner and has to be stopped for a week prior to undertaking any deep needle tests. The Trust carried out the lumbar puncture test on 22 June.
30. On 16 June the neurosurgical team advised a repeat of the MRI head scan. The repeat scan showed improvement in the brain lesions. The Trust consultant discussed Mr O’s case with the infectious disease team who advised further tests for infection. These infection tests came back clear.
31. On 24 June the Trust’s palliative care team reviewed Mr O and agreed with his family to start him on a syringe driver (a device that administers medicines subcutaneously over a selected time period), for symptom control. The Trust consultant documented they would call with the results of any further tests. The Trust discharged Mr O on 24 June with input planned at home from the community palliative care team.
32. The relevant guidance is the GMC good medical practice, which says:
‘[Doctors] must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: a. adequately assess the patient's conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient b. promptly provide or arrange suitable advice, investigations or treatment where necessary refer a patient to another practitioner when this serves the patient's needs.’
33. We consider the medical treatment and investigations were in line with this guidance. Our physician adviser explained this was not a straightforward case. Certain aspects of the scan results raised the possibility of infection, which is a treatable condition. The Trust appropriately involved relevant specialised teams. The Trust’s ward consultant undertook additional coordinated tests to check if Mr O’s condition was treatable.
34. For these reasons, in relation to Mrs U’s concern that there was no overarching care and treatment plan that recognised all aspects of Mr O’s condition, we have not identified any failings.
Care planning
35. Mrs U complains care planning was poor and did not recognise her dad’s particular needs, as he could not see or communicate. We looked to see if the nursing care was in line with guidance.
36. The NMC’s the Code says nurses must:
‘Treat people as individuals and uphold their dignity. To achieve this, you must: make sure you deliver the fundamentals of care effectively. The fundamentals of care include, but are not limited to, nutrition, hydration, bladder and bowel care, physical handling and making sure that those receiving care are kept in clean and hygienic conditions. It includes making sure that those receiving care have adequate access to nutrition and hydration, and making sure that you provide help to those who are not able to feed themselves or drink fluid unaided.
Listen to people and respond to their preferences and concerns. To achieve this, you must: work in partnership with people to make sure you deliver care effectively.
Recognise and respect the contribution that people can make to their own health and wellbeing’.
37. Our nursing adviser said there is clear evidence in the records the nurses met the requirements of the Code in relation to nursing evaluation and care planning. We have looked at how the team managed Mr O’s nutrition and hydration in paragraphs 42 to 56 of this report.
38. The nursing team assessed Mr O’s needs in relation to personal care in line with the guidance. The records show Mr O was alert and able to mobilise adequately with his stick. They show he was independently able to manage his own personal care and toileting. We can see the nursing team checked this with him on a daily basis.
39. We recognise and accept the family’s account that Mr O could not see or communicate well. There is no information in the records to suggest Mr O’s impaired communication and vision affected his ability to manage his own personal care or daily living needs. There is mention he had difficulties closing his eyes, but not that this affected his vision. There are clear records of him communicating with the teams providing his care and treatment. This evidence supports the view that he was able to communicate about, and meet, his own care needs.
40. To summarise, the medical and nursing records show no evidence Mr O’s comprehension was impaired. The nursing team carried out an assessment of care needs and produced a care plan in line with the guidance. The nursing staff checked with Mr O on a daily basis and he was independently managing his own daily living needs. There is no evidence he raised any concerns about this on any of the occasions the nursing staff checked him.
41. For these reasons, we do not find any failings in relation to the nursing and care planning to recognise and meet Mr O’s needs.
Nutrition, hydration and SALT
42. Mrs U told us she kept telling the Trust that her dad needed help to eat. She said the family put him on a soft diet at home, and so they told the hospital when he was admitted that he was on a soft diet. Mrs U said the hospital should have followed this up with an assessment to see what extra help he needed. She told us she kept asking for this and her dad lost a lot of weight in hospital.
43. The NICE guidance says patients must have a MUST assessment (a screening tool to identify adults who are malnourished or at risk of malnutrition) undertaken on admission. This happened and so was in line with the guidance. The Trust assessment noted Mr O had unintentionally lost 9kg over the previous 3 months. It also noted he had problems with swallowing. The NICE guidance says.
‘Nutrition support should be considered in people who are malnourished, as defined by any of the following: • a BMI of less than 18.5 kg/m2 • unintentional weight loss greater than 10% within the last 3 to 6 months • a BMI of less than 20 kg/m2 and unintentional weight loss greater than 5% within the last 3 to 6 months.’
And
‘Healthcare professionals should consider using oral, enteral or parenteral nutrition support, alone or in combination, for people who are either malnourished or at risk of malnutrition […]. Potential swallowing problems should be taken into account’.
44. Our nursing adviser told us Mr O had unintentional weight loss greater than 10% and problems swallowing. He was correctly assessed on 13 June as being at high risk of malnutrition because of this. This should have prompted a referral at that point to a dietician and SALT (speech and language therapists provide treatment, support and care for patients who have difficulties with eating, drinking and swallowing). This would have provided ‘coordinated care from a multidisciplinary team’, as required by the NICE guidance. Mr O was not seen by a dietician until 21 June, and by SALT until 23 June.
45. The records do not provide evidence that Mr O’s nutrition and hydration needs were met. The food and drink charts that are present are not properly filled in and he continued to lose weight over the period he was an inpatient. There is no evidence from the records that nurses helped him to eat and drink. The Code says the fundamentals of care ‘includes making sure that those receiving care have adequate access to nutrition and hydration, and making sure that you provide help to those who are not able to feed themselves or drink fluid unaided’.
46. The records do not assure us this happened and this is a failing. The Trust did not follow its own care plan of 13 June which said the Trust needed to commence food and drink charts and Mr O needed nutritional supplements and referral to a dietician.
47. To summarise, there is insufficient evidence to show the Trust met Mr O’s nutrition and hydration needs in line with the expectations of the Code. The Trust did not undertake SALT or dietician referrals when it should have to be in line with the NICE guidance. We have considered the impact of the delay in this support being arranged.
48. Our physician adviser said there was no evidence Mr O had a poorer outcome as a result of these failings. They noted there was no evidence of aspiration pneumonia on the imaging, and no evidence Mr O’s death was hastened due to the care he received by the Trust. He explained that following extensive and appropriate testing, Mr O was diagnosed with metastatic lung cancer spread to the brain which carries a very poor prognosis.
49. Whilst we cannot say the management of Mr O’s nutrition and hydration needs led to a poorer outcome for Mr O, it is clear this affected his quality of life. We can see also how distressing this was for his family to witness, from the many mentions within the records where they raised their concerns about his oral intake.
50. The reasons for the failings and the delay are not clear from the records. The explanation the Trust gave in the complaint response is not reasonable. It said ‘initially, your dad managed these well, however over the subsequent days the facial dropping gradually became worse affecting both sides of his face, including his entire jaw. It was then that a referral to the SALT team was made for assessment on 22 June 2022. Your dad was reviewed by the team on 23 June 2022’.
51. The complaint response acknowledges there was a missed opportunity for earlier referral to SALT. It says: ‘it will be discussed in the Respiratory Medical and Nursing Quality and Clinical Governance Meeting for learning and wider awareness’.
52. The Trust complaint response does not provide sufficient reassurance to Mrs U that it has fully recognised the failings, what led to the failings or put improvements in place to remedy this. We would expect to see an analysis of what caused the failings (which are wider than the delayed referral), and an action plan to remedy what is identified.
53. The Trust complaint meeting notes are difficult to follow. The summary at the end of the meeting says: ‘• [Matron] updated on changes made: • nutritional charts now electronic, • red tray • menu better • hostess receives a note identifying what diet patients have - soft, normal etc. If an issue hostess will speak with nurse.’
54. This list of improvements gives more details of improvements, but again does not show any analysis of what led to the failings. It does not explain the reason for the delay in making a SALT and dietician referral and so does not provide reassurance this would prevent a recurrence.
55. The Trust shared information with the Ombudsman after this investigation had started. This gives a better account of the improvements made and provides some reassurance of service improvements. This information has not been shared with Mrs U, and does not acknowledge, or describe service improvements, for the failure to help Mr O eat and drink and ensure the records are there to check this happens.
56. We have made recommendations to remedy the impact of this failing on Mrs U in paragraphs 66 to 69.
Palliative care
57. The Trust were actively investigating the cause of Mr O’s symptoms until 23 June, undertaking tests to rule out infection as a cause for his illness and scan findings. Our physician adviser explained this was important as the neuro-oncology team had raised the possibility the brain lesions could have been due to infection, and infection is a treatable condition.
58. When the infection tests subsequently came back clear, the Trust organised for Mr O to see the palliative care team on 24 June who arranged end of life treatment.
59. This was in line with the GMC’s good medical practice quoted in paragraph 32, and our physician adviser said it would not have been compliant to have put Mr O on an end of life pathway sooner.
60. We also looked to see if there was more the nursing team should have done to start end of life care sooner. The Code explains the need for nurses to make sure that ‘people’s physical, social and psychological needs are assessed and responded to. To achieve this, you must… recognise and respond compassionately to the needs of those who are in the last few days and hours of life’.
61. Our nursing adviser explained in this case there was no indication Mr O was at the end of his life, as the Trust were still providing active care and trying to identify a firm diagnosis. There was nothing to suggest the nursing team should have advocated for end of life care.
62. We can understand why the family has been left with questions, as the meeting notes are confusing about palliative care and whether the Trust considered this should have been arranged sooner than 24 June.
63. There will always be circumstances where, with retrospective knowledge, organisations can look at things that could have been done differently. It is positive the Trust has provided the Ombudsman with information on the service improvements it has made for end of life care.
64. Whilst we do not find failings in relation to the Trust’s actions to arrange palliative care, the improvements it has outlined are positive in helping keep families informed about their options through the Acute Intervention Team, and in helping staff keep palliative care and the forefront of their minds by mandatory training and palliative link care nurses.
Summary of care and treatment
65. In retrospect, the diagnosis of lung cancer with brain metastases may seem clear cut, but this was not the case based on Mr O’s scan results at the time. The Trust appropriately undertook specialist assessments and tests to ensure that a diagnosis of infection was not missed. It was only when these tests came back clear that a diagnosis of cancer became more certain. We recognise how difficult the uncertainty it was for the family. They advocated for Mr O when he was in hospital and wanted to make they could give him the care he needed in his last days.