Communication with Mrs C
16. Mr C says the Trust failed to engage with his mother’s communication needs, particularly considering her additional needs. Mr C says this was distressing for Mrs C and reduced her engagement with staff, and this caused her to suffer and decline.
17. NICE guidelines on improving patient experience says that staff should aim to understand an individual’s condition and how this affects them, their condition and treatment. It also says that issues such as hearing problems should be addressed so that the patient can participate in consultations and care as much as possible.
18. RNID guidance says nurses should record their patients hearing difficulties in their handwritten or electronic notes, and in their communication care plan. Nurses should also record when they carry out hearing aid maintenance.
19. The records show very little documentation regarding Mrs C’s communication needs. Given we know Mrs C was profoundly deaf, our nursing adviser highlighted there is no indication in the records about whether Mrs C used sign language, lip reading, or another form of communication.
20. There is a note from Physiotherapy in the middle of February which states that Mrs C was unresponsive, and that this may have been due to her hearing impairment. There is also a record from a Speech and Language therapy assessment where the Trust noted Mrs C’s hearing aids were not working correctly and were interfering with communication.
21. We can see it took the Trust three weeks to refer Mrs C to audiology to check her hearing aids were working. There is no mention of her communication needs in the records after the last week in February.
22. We think the Trust’s actions when taking Mrs C’s hearing difficulties into consideration were not in line with guidance. We cannot see the Trust documented Mrs C’s hearing difficulties and communication plan in line with the RNID guidance. We also cannot see the Trust made adjustments to ensure Mrs C could participate fully in her care in line with the NICE guidelines on improving patient experience.
23. We have found a failing in the actions of the Trust here. We have gone on to consider the impact of this failing for Mrs C, and Mr C.
24. Mr C has told us how Mrs C’s mood and engagement had improved after she had been able to have a subtitled video call with her family. He has also provided us with copies of three notes Mrs C had written, which said ‘HELP’.
25. We think the failing here would have hindered Mrs C’s ability to engage with staff, which is supported by the medical records. We appreciate this would have been frustrating and distressing for her.
26. We also acknowledge it would also have been distressing for Mr C to know this was happening, and to worry about his mother being isolated. We also recognise that finding notes asking for ‘help’, and not knowing the context for these would have been distressing for Mr C. We are not able to say whether difficulty in engaging contributed to her clinical decline.
27. We have gone on to consider the Trust’s response to this issue, and whether it has done enough to remedy the impact of this identified failing.
28. The Trust said it considered Mrs C’s hearing difficulties throughout her inpatient stay. It said there was evidence during assessments that her difficulties in following commands could have been a result of her hearing problems rather than physical issues.
29. The Trust said it took her hearing aids to Audiology who checked them and changed the batteries. We acknowledge that it did this, but this was some time after her admission, and after at least one therapy service had commented on Mrs C’s hearing difficulties impacting her care.
30. The Trust said the ward uses alternative forms of communication aids in a communication toolbox which helps staff to understand a patient’s needs. It also said a pen and paper is often given to patients to write down anything they cannot say.
31. This may explain the ‘help’ notes that Mrs C wrote. However, it does not seem these communication tools were sufficient for engaging with Mrs C, given the feedback from the physiotherapy, and speech and language therapy teams.
32. In the Trust’s second response it apologised the support provided was not always at a level it would aim for and the distress this caused. It said Mr C’s concerns were discussed with the team so that lessons could be learnt as a result of Mrs C’s experience.
33. It also said it obtained masks with a clear front to ensure that deaf patients were able to lip read despite the COVID-19 restrictions. Given the Trust did not record whether Mrs C used lip reading, it is not clear whether this was relevant in Mrs C’s situation.
34. Our NHS complaint standards set out how organisations providing NHS care should approach complaint handling.
35. These standards say that organisations should see complaints as an opportunity to develop and improve its services and people. It says responses should be fair and accountable, setting out what happened and whether mistakes were made. It should set out how the organisation is accountable and take action to make sure any learnings are identified and used to improve services.
36. We consider the response from the Trust goes some way to put things right here. It acknowledges mistakes were made, albeit not until the second response to the complaint, and it apologises to Mr C for the distress these mistakes caused. We do also recognise that these events occurred during the COVID-19 pandemic, which was a challenging time for the NHS. However, we do not think the Trust’s goes far enough to put things right here.
37. We can see the Trust explained to Mr C the steps it had taken to ensure lessons were learnt. However, we know a 2023 CQC inspection found the Trust needed to improve its compliance with the Accessible Information Standard.
38. This is a framework designed to ensure individuals with disabilities or impairments receive appropriate information and communication support. The CQC report referred to ensuring communication aids are regularly checked and replenished, and that interpreters are sought for patients who require additional support.
39. This inspection occurred after the events Mr C has complained about, so does not provide reassurance that the Trust’s actions following Mr C’s complaint had been enough.
40. We understand the Trust has made improvements since these events and the CQC inspection to improve its communication with patients with additional communication needs. We therefore do not think the Trust needs to take further action here.
41. But we do think there is more it can do to reassure Mr C that something similar would not happen again. We have set out our recommendation in relation to this towards the end of this report.
Rectal examination
42. Mr C says the Trust failed to carry out a rectal examination on his mother, which he says caused Mrs C to experience confusion, pain and suffering. He is concerned this stopped her from eating and affected her rehabilitation and potentially caused her death.
43. NICE guidelines on how to assess for constipation outline when a digital rectal examination (DRE) should be used. This is a medical procedure where a doctor or nurse inserts a gloved finger into the rectum. It says DRE is to check for pathology around the anus and rectum, the anal sphincter tone, pelvic floor dysfunction, leakage of stool, and rectal or anal pain.
44. RCN guidelines on bowel care says nurses should use a DRE to establish the presence of faecal matter in the rectum, and the amount and the consistency of this. A DRE should evaluate the status of the area before administering rectal interventions, and the need for, and effects of rectal medication. It can also be used to identify the need for further interventions.
45. RCN guidelines say that a DRE should not be used when there is a lack of consent from the patient.
46. The records show the Trust assessed Mrs C for constipation. The Trust’s intention for the DRE was to establish whether an enema was necessary. This assessment clearly states Mrs C was unable to consent at that time, and the Trust’s opinion that it was not appropriate or in her best interests to conduct the DRE.
47. Our geriatric adviser has said that a DRE is a test and not a treatment. They have also said it is not an essential test, and it is generally avoided in a frail person especially when they are unable to give clear consent.
48. Instead, the Trust performed a different investigation for constipation. It conducted an abdominal X-ray. This showed faeces present in the caecum (an area at the beginning of the large intestine) but a small amount of faeces elsewhere in the colon.
49. Our geriatrician adviser said an Xray is a more definitive test for constipation. A DRE would likely have shown no faeces in the rectum and therefore an enema would not have been required. It would not have changed how Mrs C’s constipation was treated.
50. It appears that the Trust’s decision not to do a rectal examination is in line with the RCN guidance. Mrs C could not give clear consent. The Trust still investigated the cause of her constipation, in a more definitive, less invasive way.
51. We acknowledge Mr C is concerned that the lack of an enema impacted Mrs C’s care. We have not found a failing in the Trust’s actions here. We hope this provides Mr C with some reassurance.
Advance directive
52. Mr C says the Trust did not follow his mother’s advance directive, which meant the Trust made a decision to withdraw mobilisation against her wishes.
53. GMC guidelines on decision making and consent says that the person with lead responsibility for a patient who lacks capacity should take reasonable steps to find out the patients previously expressed values and preferences. That person should also find out if there is a legally binding advanced directive or decision. They should also take reasonable steps to find out if someone has the legal authority to make the decision on the patient’s behalf, or has been appointed to represent them.
54. GMC guidelines also set out what happens if there is no evidence of a legally binding advance refusal of treatment and no one has legal authority to make the decision for them. In this case the person with lead responsibility for the patient’s treatment and care is responsible for deciding what is in the best interests of the patient.
55. It says that to do this, doctors should consult with those close with the patient and other members of the healthcare team. Doctors should take account of their views of what the patient would want and aim to reach an agreement with them. It also says doctors should consider what option is closest to the patient’s needs, preferences, values, and priorities and which option would least restrict their options in future.
56. We have reviewed the medical records supplied. We cannot see evidence of any advanced directive. We also cannot see evidence there was any legally appointed person with power of attorney for health matters for Mrs C.
57. Mr C tells us he provided the NHS with a copy of Mrs C’s advanced directive when she was an inpatient in 2020. Mrs C was under the care of another Trust, part of a separate NHS organisation, at this time. He tells us that his particular concern was to ensure that Mrs C’s wishes were taken into account when imposing a DNR.
58. Mr C has also told us that a copy was given to the ambulance that brought Mrs C to hospital in early 2021. He also tells us that he gave a copy to the Trust a few days after Mrs C was admitted. He has said that he has no documentation to prove this.
59. The records show the Trust had conversations with Mrs C’s family about their preferences.
60. At the beginning of February, the Trust told both Mr C and his sister that their mother could potentially deteriorate. The records note that they understood and agreed if active treatment did not work, then the plan was to keep Mrs C comfortable and pain free.
61. Another conversation occurred with Mr C’s sister in the middle of February where the Trust informed her that her mother’s prognosis was likely to be poor. The Trust noted she wished for her mother to be kept comfortable. Five days later, the records show the Trust spoke with Mr C’s sister again, when it explained Mrs C was unlikely to improve. The Trust noted Mr C’s sister agreed that further interventions were not appropriate and she told the Trust Mrs C had previously wished to be kept comfortable.
62. We can see multiple conversations in the notes regarding the family and Mrs C’s preferences. Therefore, while the Trust may not have seen the advanced directive, we think it took steps to find out Mrs C’s and her family’s wishes.
63. We have not seen a failing in the Trust’s consideration of Mrs C’s advanced directive, as we cannot see the Trust had a copy of this. Mr C has told us that he has provided a copy to a different Trust, but this would not necessarily mean the Trust had a copy of it. He also told us he provided this to the ambulance crew (part of another NHS organisation), but we do not know whether they passed this onto the Trust.
64. We acknowledge here Mr C has told us he provided this to the Trust a few days after Mrs C was admitted. We do not know from what Mr C has told us who it was given to, or what happened to it. What we do know is that it was not present in Mrs C’s medical records. We can see that the Trust had conversations to understand both Mrs C’s and her family’s preferences.
65. Mr C has told us the advanced directive contained Mrs C’s preferences in relation to CPR and treatment. We have gone on to consider how the Trust has considered her and her family’s preferences when making the decision not to provide CPR.
66. GMC guidelines on treatment at the end of life say that a decision to put in place a DNR is a clinical judgment made by the doctor responsible for the patient’s care. Doctors are not obliged to offer or provide treatments that are not clinically appropriate, including CPR that is unlikely to be effective or would not be in the patient’s best interests.
67. The guidelines emphasise the importance of involving patients in discussions wherever possible, or consulting with those close to the patient if they lack capacity. All decisions must be clearly documented, and the reasoning behind them should be communicated sensitively and transparently.
68. Mrs C’s records include a Treatment Escalation and Limitation record (TEAL, a form used to document DNR/DNACPR decisions). This form states that Mrs C was not for CPR and is dated 4 February. The form states the reasons for this as frailty and futility. It also says that this had been discussed with the family.
69. The records also show evidence that discharge options were discussed with the family. This included palliative care options, or an End of life (EOL) placement. Another note says that the family preference was for comfort measures only. A note from the middle of February confirms a DNAR was in place.
70. A note two days later also says Mrs C’s deterioration was discussed with family members. This note says that family members were told it was likely that Mrs C was in her last year of life. It goes on to say the family were in agreement that further investigations would not be appropriate, and that Mrs C had previously wished to be kept comfortable.
71. Two days after this, the records show a doctor spoke with Mr C and informed him that his mother had deteriorated. It also says the doctor told him if they did not feel his mother was improving they would stop active treatment, and they would aim to keep Mrs C comfortable.
72. We think the actions the Trust has taken to come to the decision to put in place a DNR for Mrs C are in line with guidelines. It has taken into consideration Mrs C’s prognosis and the likelihood that any attempts of CPR would be successful.
73. Mrs C did not have capacity and therefore it appears the Trust has discussed preferences with her family members. It has also documented its reasons for the decision. We have not found a failing here.
74. We understand that Mr C does not agree that this is the case, and he believes his mother’s preferences were not taken into consideration. We do not discount what he has told us. We think the important factor here is that while the patient and their family should be involved, this was ultimately a clinical judgement made by the clinician. We do not intend to cause any distress with our decision.
Communication with family
75. Mr C says the Trust did not communicate with the family that Mrs C was reaching the end of her life. He says this led them to feeling traumatised when she died unexpectedly.
76. Our orthopaedic surgical adviser has said that there are no specific guidelines regarding communication about a patient reaching the end of their life.
77. GMC Good medical practice guidelines say that doctors should give patients the information they want or need to know in a way they can understand. It also says doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
78. Our orthopaedic surgical adviser has said that medical or nursing staff would immediately inform the family if a patient was near the end of their life so that they could pay their last respects. They also said that Mrs C was receiving full medical treatment but suddenly deteriorated on the day she died.
79. The records show that there was some communication between medical staff and Mrs C’s family. Some of that is set out in the report above. We can also see there were some difficulties due to the COVID-19 restrictions in place at the time.
80. The records show regular conversations occurred with Mr C or his sister over the telephone until the third week of February. There was no contact with the medical team from then until early March. We can see that the family occasionally Skype called with Mrs C, and they spoke to the nursing team, but no substantial updates were provided during this time.
81. We consider that the lack of updates over a ten day period is not in line with guidance. We have found a failing in the Trust’s actions here.
82. It is reasonable to think that a lack of updates would cause distress to the family. We acknowledge regular updates could have made the family aware of her prognosis sooner and have better prepared them when Mrs C sadly died.
83. We have gone on to consider the Trust’s response to this issue. The Trust has said that restrictions in place as a result of the COVID-19 pandemic were challenging for both families and staff members. It said it was not always possible to make contact with the family as staff were caring for very unwell patients.
84. The Trust also said that an audit in March 2021 highlighted answering calls as an area to improve on. As a result, the Trust put in place a patient liaison nurse to facilitate contacting and updating families. The Trust recognised that this would not change Mr C’s experience and it apologised for the distress its actions had caused him.
85. Our Complaint Standards say that organisations should see complaints as an opportunity to develop and improve its services and people. It says responses should be fair and accountable, setting out what happened and whether mistakes were made. It should set out how the organisation is accountable and take action to make sure any learnings are identified and used to improve services.
86. We consider the response from the Trust is in line with the Complaint Standards. It acknowledges it made mistakes, and it was accountable for them. It apologised to Mr C and his family for the distress its actions had caused, and it identified learning and set out actions it had taken to improve services.
87. We acknowledge how distressing these events were for Mr C and his family, particularly the shock caused by Mrs C’s death, which was unexpected for them. We recognise here what our orthopaedic surgical adviser said, that Mrs C had suddenly deteriorated, which would have impacted the Trust’s ability to update Mr C and his family.
88. We are satisfied the actions of the Trust have acknowledged there were failings here, and it has taken steps to prevent something similar happening again.