Mouthcare
25. Mrs E complains nurses did not provide her husband with regular mouth care.
26. The NMC’s ‘the Code’ says nurses should make sure they deliver the fundamentals of care effectively. This includes making sure those receiving care are kept in clean and hygienic conditions. Our nursing adviser confirmed that mouthcare is a fundamental part of nursing care.
27. NHS Health Education England’s guidance on ‘Mouth Care Matters’ says staff should carry out screening to check for high risk. The guidance contains a form staff can use to assess the patient’s mouth care needs and record this daily. It says the form can be adapted for the organisation’s needs.
28. Our adviser noted staff assessed his mouthcare needs on admission and deemed him as medium risk, meaning staff should have documented mouthcare daily and assessed his needs weekly.
29. Mr E was initially able to eat and drink normally. By 28 November he was unable to take his mask off to eat and drink because he could not breathe without it. This remained the case for most of his admission. Our adviser said if he was unable to take this off for nutrition and fluids, he was also unlikely to be able to remove it for mouthcare.
30. The guidance says staff should provide daily mouthcare unless the patient is nil-by-mouth. The records show Mr E was nil-by-mouth for a large portion of his admission.
31. Our adviser said that even with the best of intentions, doing mouthcare on a patient like this is very difficult and sometimes not possible. They said mouthcare is important for keeping a patient comfortable, but they would expect staff to prioritise keeping Mr E alive. This is what the NIV mask was doing.
32. Documentation of nurses’ attempts at mouthcare are poor. We are unable to see that nurses specifically assessed Mr E’s mouthcare needs beyond the initial assessment. Nor could we see daily documented mouthcare attempts.
33. Our adviser said the rest of nursing documentation is excellent, and personal care is well documented. They said nurses may have considered documenting personal care daily as sufficient, as mouth care is a form of personal care.
34. We considered whether gaps in records impacted Mr E’s care. Our adviser said that even if record keeping was detailed, it was not possible for nurses to give Mr E daily mouth care. Meaning gaps in documentation did not negatively impact his care.
35. Our adviser said nurses followed NHS Health Education England’s guidance in terms of mouthcare provision. They assessed Mr E’s mouthcare needs on admission and provided this when it was possible. This was as good as nurses could have done giving his condition and NIV needs.
36. It is clear Mr E did not receive the mouthcare he needed to keep him comfortable. This was due to his dependency on NIV and not because anything went wrong with his care. We have seen no indication of failing in this aspect of the complaint.
37. We recognise Mrs E is worried that a lack of mouthcare negatively impacted her husband’s breathing. We discussed this with our adviser who explained Mr E’s breathing was impacted from the beginning of his admission as his motor neurone disease (MND) had affected his respiratory muscles. He also had flu and a heart attack. Our adviser explained a lack of mouth care is not known to impact breathing and it was Mr E’s clinical condition that affected his breathing. We hope this provides Mrs E with some reassurance.
Nutrition and fluids
38. Mrs E complains nurses did not provide her husband with adequate nutrition and fluids for four weeks despite him asking for help with this.
39. The relevant guidance for this aspect of the complaint is NICE CG32 on ‘nutrition support for adults’. This says staff must: • carry out a screening for risk of malnutrition on admission • refer for nutrition support when appropriate • consider the use of oral, enteral or parental nutrition.
40. Clinical records show nurses carried out a nutritional risk assessment on admission. Our nursing adviser said Mr E was at low risk of malnutrition and only required weekly weight checks and monitoring and encouragement of oral fluids.
41. Nurses referred Mr E for speech and language therapy (SALT) and dietician input on 28 November. Our adviser said nurses recognised Mr E’s NIV dependency may impact him getting adequate nutrition and hydration. They referred him to appropriately qualified clinicians as per NICE guidance.
42. We can see nurses maintained food and fluid charts throughout the admission. They also kept NG feed charts updated.
43. Staff stopped tracking Mr E’s oral input after 18 December. This was because clinicians made the decision to risk feed which means allowing a person to eat and drink with acknowledged risks. Our adviser said this was normal and in line with best practice as the decision to risk feed signalled he was approaching the end of his life. They said at this point nurses’ focus would be on keeping him comfortable.
44. Mrs E says nurses refused to assist her husband with eating and drinking despite him requesting this. We have only been able to see one instance of nurses denying Mr E food or fluid. This was on 8 December when he was nil-by-mouth and awaiting SALT review. Our adviser said it was clinically appropriate for nurses to wait for SALT’s input before allowing Mr E sips of water as it would be up to SALT to determine if this was safe.
45. We accept there may have been other occasions where Mr E wanted to eat or drink, and nurses could not help him with this. The records suggest this could have been due to his dependency on NIV, him being nil-by-mouth or an NG tube being in place.
46. Mr E’s clinical condition meant he was at risk of aspiration pneumonia if he ate or drank and when he did sadly die, aspiration pneumonia was listed as a cause of death. Our adviser reiterated they would not expect nurses to allow him to eat or drink unless SALT had said it was safe or a decision to risk feed had been made.
47. The evidence suggests nurses followed NICE guidance when supporting Mr E with hydration and nutrition.
48. We appreciate how distressing it must have been for Mrs E to see her husband so unwell, and we understand her concern that nurses did not meet his nutrition and hydration needs. The evidence suggests nurses supported Mr E as much as they could, but his clinical condition meant there were limitations on how staff could provide food and fluids.
49. We consider nurses acted in line with the NICE guidance when providing Mr E support with nutrition and hydration. We have not seen any indication that anything went wrong in this aspect of the complaint. We hope our explanation helps Mrs E understand what happened with her husband’s care.
Management of heart problems
50. Mrs E complains doctors dismissed her husband’s heart problems as untreatable after he had a reaction to medication.
51. The relevant guidance for this aspect of the complaint is NICE clinical guideline 185 on ‘acute coronary syndromes’. This states doctors should carry out a coronary angiography (a specialised X-ray that uses dye to examine the blood vessels that supply the heart muscle) to diagnose the specific heart condition and plan for further treatment. It says doctors should not offer an angiography to patients with a poor prognosis if something other than their heart issues is causing this poor prognosis.
52. A doctor diagnosed Mr E with acute coronary syndrome on 26 November. Acute coronary syndrome is a medical term that describes a range of conditions related to sudden, reduced blood flow to the heart. Doctors decided to manage Mr E’s heart issues with medication as he was too unwell to go through surgery.
53. NICE guidance explains the first stage in treating acute coronary syndrome is to carry out an angiography to diagnose the specific heart condition and plan for further treatment. It says doctors should not offer angiography to patients whose likely clinical outcome is poor for reasons other than their heart issues.
54. Mr E had a poor prognosis prior to his hospital admission as a doctor had given him a prognosis of six months when he received his MND diagnosis.
55. From the beginning of his admission, Mr E also had type two respiratory failure (when the respiratory system cannot adequately remove carbon dioxide from the body) and was dependent on NIV. Our adviser said this meant the decision not to offer him an angiography was in line with NICE guidance as he had a poor prognosis that was not solely due to his heart issues.
56. They said an angiography and surgery were not possible even if Mr E’s clinician condition improved as it would have required him to lie flat, something that his MND prevented. This meant the only remaining treatment option was medication.
57. Clinical records show doctors were treating Mr E’s heart issues with antiarrhythmic medication. These are medications that prevent fast or irregular heart rhythms. Our adviser reviewed the medication Mr E received and confirmed this was in line with NICE guidelines.
58. Unfortunately, the use of these medications caused Mr E to have an irregular heart beat with long pauses. His treating clinicians discussed him with a cardio specialist registrar and cardiologist, both who agreed he should not be on any regular heart rate medication. Staff stopped providing this medication by 1 December.
59. The risks of doctors giving Mr E this medication began to outweigh the benefits when it caused further heart problems. We would not expect to see treatment continuing which was causing harm. Sadly, the evidence suggests Mr E’s heart problems were untreatable as surgery was not an option and medication was no longer safe.
60. We understand Mrs E’s concerns and that she wanted her husband to receive further treatment for his heart issues. The evidence shows the care staff provided for this was in line with NICE guidelines and there were no further treatment options available. We have seen no indication that anything went wrong in this aspect of the complaint.
Nil-by-mouth
61. Mrs E complains doctors made her husband nil-by-mouth without evidence he had swallowing problems.
62. Our physician adviser said there are no specific standards or guidelines doctors should refer to when making a patient nil-by-mouth. In lieu of this we sometimes refer to GMC’s Good Medical Practice.
63. Domain 1, section 6, says doctors must provide a good standard of practice and care. If they assess, diagnose, or treat patients they must adequately assess the patient’s conditions, take account of their history and, where necessary, examine the patient.
64. Section 7 explains doctors must promptly provide or arrange suitable advice, investigations or treatment where necessary, and refer to another practitioner when this serves the patient’s needs.
65. Our adviser said the purpose of making someone nil-by-mouth is to reduce the risk of aspiration pneumonia which can be life threatening. They explained it is standard clinical practice for doctors to make a patient nil-by-mouth if they are concerned about the patient’s swallow. Doctors then usually refer the patient to SALT for a more specialised assessment.
66. Doctors first made Mr E nil-by-mouth on 28 November as nurses were concerned about his ability to safely swallow his medication. The same day doctors referred Mr E to SALT for a swallow assessment.
67. SALT were involved in Mr E’s care from 29 November until 19 December. Documentation from their reviews of Mr E support doctor’s concerns about his swallow as they documented he had a poor and potentially unsafe swallow on multiple occasions.
68. Our adviser raised no concerns about the decision to make Mr E nil-by-mouth and refer him for SALT input on 28 November.
69. We consider the decision to make Mr E nil-by-mouth and refer him to a specialist team was in line with GMC guidance, which says doctors must promptly provide suitable treatment and refer to another practitioner when this serves the patient’s needs. We have seen no indication that anything went wrong in this aspect of the complaint.
70. We understand Mr E’s dependence on NIV meant he was nil-by-mouth for much of his admission. We recognise how uncomfortable this must have been for him. Nowhere in guidance does it stipulate that doctors must confirm a patient’s swallowing problems before making them nil-by-mouth. We hope the contents of this statement provide Mrs E with some reassurance.
Requests for alternative feeding
71. Mrs E says doctors ignored her requests for alternative feeding despite a nasogastric tube giving her husband diarrhoea. This is a thin, soft tube clinicians insert through the nose and into the stomach to provide nutrition, fluids and medication.
72. NICE CG32 says doctors should consider NG feeding when a patient has an inadequate or unsafe oral intake and a properly working digestive system.
73. Our speech and language therapy adviser said in cases where an individual is struggling with their breath and requiring oxygen it is likely there will be significant fatigue, and this will affect swallow safety. They explained the purpose of an NG tube is to consistently provide the person with nutrition and hydration.
74. Clinical records show staff first inserted an NG tube on 1 December as Mr E’s dependence on NIV was affecting his ability to eat and drink safely. Our physician adviser said this meant he met the criteria for an NG tube and the decision to insert this was in line with NICE guidelines.
75. GMC guidance states doctors should give information to patients to help them make decisions about their own care. It says doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.
76. Our adviser noted Mr E was drowsy at times and did not always have capacity to make decisions. They said they would expect doctors to keep his family updated and involve them in discussions about his care.
77. Notes from when staff first inserted the NG tube on 1 December show a doctor had a discussion with Mr E and his daughter. We can see Mr E did not want to risk aspiration pneumonia by eating normally. He agreed with the decision to insert a NG tube and make him nil-by-mouth. Doctors told him he could change his mind at any point.
78. On 6 December doctors referred Mr E for SALT input as he wanted to try eating and drinking normally. SALT assessed his swallow and noted he was able to tolerate sips of thin fluid and small bites of puree diet. They agreed he could try eating and drinking. They noted if Mr E showed any signs of aspiration doctors should make him nil-by-mouth and contact the team again.
79. On 11 December a speech and language therapist noted Mr E and his family did not want the NG tube reinserting. The therapist noted Mr E had clinically improved and they would not reinsert the NG tube.
80. Conversations between Mrs E and clinicians about her husband’s NG tube are well documented in his records. We can see on 12 December a doctor discussed Mr E’s condition with his wife and asked whether they had thought about a percutaneous endoscopic gastrostomy (PEG, a feeding tube inserted into the stomach for people who cannot eat or swallow normally). Mrs E said they had not decided on this as they considered his swallow was ‘ok’.
81. By 13 December doctors wanted to reinsert the NG tube as Mr E had a chest infection and he was struggling to eat normally. A doctor had a discussion with Mrs E who considered the NG tube was not the right decision. The doctor explained the risks involved with feeding and that eating and drinking could lead Mr E to deteriorate further. The doctor agreed not to feed Mr E via NG tube that day and arranged a further review with SALT.
82. On 14 December SALT noted Mr E’s decision to have sips of fluid was likely contributing to his delayed recovery. A doctor had another conversation with Mrs E where they explained there was a serious risk Mr E would develop aspiration pneumonia without an NG tube. Clinicians reinserted the NG tube shortly after this.
83. Several clinicians met with Mr E and Mrs E on 18 December. These included doctors, a physiotherapist and palliative care staff. They reiterated the risks present if Mr E decided to eat and drink. Mr E and his wife decided they did not want the NG tube and decided to proceed with eating and drinking with acknowledged risks.
84. Both our physician and SALT advisers confirmed that doctors involved Mr E in decision making about his care as often as possible. This was in line with GMC guidance.
85. Mrs E says doctors ignored her requests for alternative feeding despite an NG tube giving him diarrhoea. We do not consider this was the case. We can see doctor’s clinical opinions did not always align with Mrs E’s point of view. We have seen evidence that doctors discussed Mr E’s feeding options with Mrs E on more than one occasion.
86. Our speech and language therapy adviser noted that for much of Mr E’s admission he was reliant on NIV. They said this meant it is unlikely he would have been able to sustain his nutrition and hydration orally and would always have needed non-oral feeding. They explained in Mr E’s case there were no alternative feeding methods that would have provided him any benefit in terms of eating and drinking orally.
87. Mrs E also asserts that doctors did not carry out her husband’s NG feeding properly. We have not seen evidence that this was the case. All three of our advisers reviewed the clinical records and saw no issues with the way staff provided Mr E’s NG feeds.
88. We understand Mr E had an NG tube in place for much of his admission and can appreciate how uncomfortable this must have been.
89. We have seen evidence doctors considered Mrs E’s view on her husband’s care. This was in line with GMC guidance which says doctors must be considerate to those close to the patient and be sensitive and responsive in giving them information. We have seen no indication that anything went wrong in this aspect of the complaint.
Speech and language team
90. Mrs E complains the speech and language therapy team did not provide her husband support with nourishment, fluids or medication.
91. We have considered the Royal College of Speech and Language Therapists (RCSLT) guidance on ‘eating, drinking and swallowing. This guidance says the SALT service should triage and assess a person within two working days of receiving a referral. SALT should then carry out a swallowing assessment to determine the safety of oral intake.
92. We recognise the above guidance came out after the period of complaint. It replaced guidance in place at the time, which was RCSLT’s Dysphagia training and competency framework. Our SALT adviser confirmed the best practice and general principles within the new guidance remain the same. Therefore, we have used the newer guidance.
93. The guidance says once SALT has done a swallow assessment, they should develop a management plan based on the assessment findings and agree it with the patient. If they have identified swallowing difficulties they should monitor or review the patient on an ongoing basis, especially if the person's condition changes. They should then communicate their assessment and recommendations to the multi-disciplinary team and contribute to decisions about nutrition, hydration and medication routes.
94. Clinical records show a doctor first referred Mr E to SALT on 28 November who reviewed him the following day. This means they reviewed Mr E within the timeframes set out in the above guidance.
95. Our SALT adviser said speech and language therapists provide support with hydration, nutrition and medication by assessing a patient's swallow. They explained tests such as fibreoptic endoscopic evaluation of swallowing (also known as FEES, a procedure to examine the swallow by inserting a small flexible endoscope through the nose to view the throat) represent the gold standard of swallow assessment. Our adviser said in Mr E’s case this was not possible as he could not go without his NIV long enough to undergo the procedure.
96. SALT were involved in Mr E’s care throughout most of his admission. They reviewed him regularly, assessed his swallow and providing the medical team with advice around eating, drinking and NG tube insertion.
97. Our adviser said the records show the speech and language therapy team provided Mr E with a good standard of care and gave him opportunities to decide how he wished to manage his swallowing issues. This was in line with RCSLT guidance. They said there is no evidence anything went wrong with the support Mr E received from the speech and language therapy team for nourishment and hydration.
98. Mrs E also complains SALT did not provide her husband support with medication. We understand SALT can contribute to discussions about medication with other clinicians.
99. Our adviser said SALT does not provide specific support with medication. They explained in this instance SALT’S role was to assess the safety of Mr E’s swallow and to provide advice on whether he could have food and drink orally or whether he required non-oral nutrition and hydration.
100. We recognise how distressing it must have been for Mrs E to see her husband struggle with eating, drinking and taking his medication. The evidence shows the speech and language therapy team provided Mr E with support in line with RCSLT guidance.
101. We understand Mrs E’s concerns about medication. This does not fall within SALT’s remit as their role in this context focuses on assessing and supporting swallowing safety for eating and drinking. We have seen no indication that anything went wrong with the support SALT provided.
Stopping antibiotics
102. Mrs E complains doctors stopped treating her husband with antibiotics without confirming that aspiration pneumonia had caused his infections.
103. Our physician adviser said there are no specific standards or guidance on the treatment of recurrent aspiration pneumonia in a patient with MND. In lieu of this, we sometimes refer to the GMC’s guidance on ‘good medical practice’. These say doctors must provide a good standard of practice and care. They must prescribe drugs or treatment only when they are satisfied these serve the patient’s needs.
104. We also refer to NICE guidelines on MND which recommend doctors review whether they should move a patient to palliative care if they symptoms appear to be deteriorating. This review should include discussing end-of-life issues with the patient.
105. Mrs E says doctors should have confirmed aspiration pneumonia caused her husband’s infections. Aspiration pneumonia is a type of lung infection, not a cause. We understand individuals with swallowing problems (like Mr E) are at higher risk of developing these infections.
106. Concerns about Mr E’s risk of aspiration pneumonia are well documented in his records. When he did sadly die, a doctor listed aspiration pneumonia as a cause of death. On balance, we consider this meant he had aspiration pneumonia during his admission.
107. British Medical Journal guidance on the treatment of aspiration pneumonia says the primary method of treatment is antibiotics. Clinical records show clinicians treated Mr E’s infections with antibiotics throughout his admission. Our adviser confirmed the choice of antibiotics was in line with the recommendations in British Medical Journal guidance.
108. Mr E had MND which is a neurodegenerative disorder (meaning it causes progressive and permanent damage to cells in the brain and nervous system). The records show his MND had progressed to a point where it had damaged his respiratory system. Our adviser said this meant his repeat infections were unavoidable.
109. The evidence suggests that at the point clinicians decided to stop providing Mr E with antibiotics, he had deteriorated to the point where his infections were sadly no longer treatable.
110. NICE guidelines on MND strongly recommend having discussions about end-of-life issues if a patient is deteriorating. Our adviser confirmed these discussions would typically include potentially stopping antibiotics.
111. Mr E was reliant on NIV, had type two respiratory failure, untreatable heart damage and was deteriorating. This meant doctors acted in line with NICE guidelines when they discussed stopping antibiotics with Mr E towards the end of his admission.
112. As with Mrs E’s concerns about her husband’s heart issues, we understand she wanted staff to continue treating his infections with antibiotics. We recognise she disagreed with the decision to stop antibiotic treatment.
113. GMC guidance states doctors should only provide medication if they are satisfied this meets the patient’s needs. The evidence suggests antibiotics were no longer meeting Mr E’s needs, meaning the decision to stop was in line with GMC guidance. We have seen no indication that anything went wrong in this aspect of the complaint.
Stopping invasive treatment
114. Mrs E complains a doctor convinced her husband to stop all invasive treatment without considering the families concerns or knowledge of his needs.
115. The relevant guidance for this aspect of the complaint is the GMC’s guidance on the treatment and care towards the end-of-life. This says doctors must make decisions about stopping invasive treatment openly and sensitively based on the patient’s wishes and best interests. If the patient has capacity doctors must fully involve them in discussions about their care.
116. The guidance explains doctors should involve those close to the patient in discussions about likely prognosis, options for treatment and what stopping treatment would mean. Doctors should take the family’s views into account but any decision about care should be based on the patient’s best interests.
117. Our physician adviser reviewed the records and said staff appeared to go above and beyond to consider Mr E’s family concerns and acknowledge his needs. Discussions with Mr E and his family are well documented. Some examples include:
• On 12 December a doctor attempted to discuss discharge destinations with Mrs E who said they would potentially prefer a hospice but had not discussed this as a family yet.
• On 13 December Mrs E was adamant that an NG tube was not the way forward. In response to this clinicians delayed reinserting the tube until the following day to allow more time to consider the decision.
• On 17 December a doctor discussed Mr E’s wishes with him. Records note he wanted to focus on comfort care but was worried his family were not there yet and wanted him to keep on fighting.
• On 18 December medical and palliative care staff met with Mr E and his family to discuss the future. Mr E wanted it to be as easy as possible with no pain.
118. Clinical records show Mr E had capacity, meaning doctors acted in line with GMC guidance in discussing stopping invasive treatment with him.
119. We have seen evidence that clinicians gave Mr E the information he needed to make decisions about his care. The records show he understood the implications of his choices. For example, he initially did not want to eat normally due to the risk of aspiration. He later changed his mind and chose to eat with acknowledged risks towards the end of his admission which staff allowed him to do.
120. We can see clinicians discussed the risks and benefits of various treatment options with him throughout his admission. The evidence suggests he told clinicians on more than one occasion he wanted to stop invasive treatment, meaning they were acting in line with his wishes by doing so.
121. During our discussions Mrs E said her husband did not want to stop invasive treatment and felt pressured by doctors to do this. We have compared her account of events to the account in Mr E’s clinical records. On balance we consider the evidence suggests Mr E wanted to stop invasive treatment and was worried that his family was not ready for this.
122. We understand Mrs E considers the Trust should have continued to provide her husband with invasive treatment.
123. As we set out in earlier sections of this statement, Mr E was becoming increasingly unwell despite receiving clinically appropriate treatment. All three of our clinical advisers agreed his decline was sadly inevitable, and he reached a point where doctors keeping him comfortable was the only option remaining.
124. The evidence suggests clinicians took Mr E’s family views into account when deciding to stop invasive treatment. This was in line with GMC guidance, and we have seen no indication that anything went wrong in this aspect of the complaint.
Move to end-of-life care
125. Mrs E complains doctors moved her husband to end-of-life care without informing her or making her aware they had created a care plan for last days.
126. The relevant guidance is GMC’s guidance on the treatment and care towards the end-of-life. As with the above section, doctors make decisions about commencing end-of-life care based on their clinical judgement. They should consider family wishes as part of their clinical decision making. They should not make clinical decisions solely based on what family members want. The guidance does not create any duty on doctors to inform family members before they make a clinical decision to begin end-of-life care.
127. In Mr E’s case a doctor had diagnosed him with MND and given him a prognosis of around six months to live before his hospital admission. We understand early discussions about end-of-life issues are considered good practice for patients with MND. This is because symptoms often deteriorate quickly.
128. Clinical records show clinicians began discussing end-of-life issues with Mr E and his family early in the admission. These discussions included conversations about his preferred place of care and whether he wished to eat with acknowledged risks.
129. The records also show clinicians consistently noted Mr E’s clinical condition was not deteriorating and on more than one occasion made Mrs E aware there may come a point where the only treatment they could offer was keeping him comfortable.
130. On 18 December the medical team, palliative care and physiotherapy met with Mr E and his wife to have a long discussion about moving to palliative care. We can see a palliative plan was put in place, which means clinicians had decided to stop actively treating Mr E’s conditions and solely provide comfort as he was approaching the end of his life.
131. Our adviser noted the records show the medical team informed Mr E’s family of their decision to move to palliative care only. They could not see any shortfalls in communication about this change in treatment.
132. We recognise the distinction between palliative care and end-of-life care can be confusing. Palliative care focuses on relieving distressing symptoms and improving comfort. It can form part of end-of-life care and clinicians can also provide it earlier in a terminal illness.
133. Mr E began receiving palliative care input towards the beginning of his admission when doctors referred him to palliative care so they could insert a syringe driver. He continued to receive palliative care support as clinicians attempted to treat his heart issues and repeated infections.
134. On 18 December clinicians decided to stop active treatment and focus solely on managing his distressing symptoms. Mr E’s MND was terminal and degenerative. This sadly meant he would not have recovered from this regardless of how his hospital admission progressed.
135. The evidence shows clinicians recognised Mr E was nearing the end of his life and acted in line with both NICE guidance on MND and the above GMC guidance by involving him in decisions about his care and ensuring treatment reflected his wishes.
136. Nowhere in guidance does it stipulate doctors must inform family members they intend to move a patient to end-of-life care before doing so. We can see clinicians did discuss this with Mr E’s family the same day they moved him to end-of-life care.
137. There is no requirement for staff to inform family members of documents they have created as part of care planning. This means we cannot say staff should have told Mrs E they had created a care plan for last days.
138. Having looked at the care plan, we do not consider it contained any new information about Mr E’s future care. It focused on keeping him comfortable which was the plan clinicians shared with his wife on 18 December.
139. We understand Mr E’s admission was a deeply distressing time for Mrs E and she may not have realised that her husband was receiving end-of-life care. We recognise how upsetting this realisation must have been.
140. Overall, the evidence shows clinicians involved Mr E’s family in discussions about end-of-life care in line with GMC guidance. We have not seen any indication anything went wrong in this aspect of the complaint.
Syringe driver
141. Mrs E complains end-of-life care focused treatment on medication via syringe driver.
142. The relevant guidance for this aspect of the complaint is NICE guidance on ‘end-of-life care for adults’. This emphasises the importance of managing pain and other distressing symptoms as a priority towards the end of a person’s life.
143. Mr E had a syringe driver in place while the medical team were still actively treating him. At that stage the syringe driver was delivering medications to treat his condition and medications to relieve distressing symptoms.
144. Mrs E is correct her husband’s end-of-life care focused on syringe driver medication. As we set out in an earlier section, the medical team later decided to stop active treatment. From that point Mr E’s care focused solely on keeping him comfortable. This meant the only ongoing treatment he would receive was medication via syringe driver.
145. We understand Mrs E considers clinicians should have continued active treatment for longer. We have already considered these concerns above in paragraphs 51 to 61 and 103 to 114. We understand the decision to stop active treatment was in line with good medical practice.
146. We do not consider Mr E’s end-of-life care overly focused on medication through the syringe driver. Medication to treat distressing symptoms is a part of end-of-life care, where the focus is on comfort not cure.
147. Our physician adviser explained end-of-life care should be holistic, meaning it addresses a person’s physical, psychological, social and spiritual needs. They reviewed the records and said the care clinicians provided Mr E was consistent with NICE guidance. They identified no deficiencies in the way clinicians managed his end-of-life care.
148. Considering all of the evidence, we do not consider anything went wrong in this aspect of the complaint.
Communication
149. Mrs E complains staff did not inform her that her husband had deteriorated on the day he died. She believes staff knew he was going to die as someone laid him out in a darkened room. She says when she arrived on the ward, her husband was already dead.
150. In its response to the complaint the Trust said nurses had been regularly checking on Mr E. It apologised that staff did not call her to inform her of his deterioration and explained he had suddenly become more unwell. Staff were unaware of this until Mrs E arrived. It said the last nurse to check on him had positioned him on his side and apologised if he was no longer in this position when his wife found him.
151. Our role is to consider whether the Trust’s actions were in line with relevant standards. There are no specific standards or guidance that set out exactly when staff must contact family member’s to inform them of a patient’s deterioration. Typically, staff will contact a patient’s family if there is a significant change in their condition.
152. Mr E was receiving end-of-life care. This typically involves fewer routine observations then active treatment, to avoid staff causing unnecessary disruption to a dying person.
153. Clinical records show nurses were checking Mr E every two hours. Nurses observed him at 8am and around 10am and noted no indication that his condition had changed significantly since the previous day. A physiotherapist saw him around 11am and noted he was comfortable and not overly fatigued.
154. The last nursing check took place at 10am, meaning it is likely another was due to take place around 12pm. Clinical records show doctors verified Mr E had sadly died around 1pm. This suggests his wife arrived on the ward before nurses had completed the next check.
155. All of this is in line with the Trust’s explanation that nurses were unaware he had deteriorated. This is because the physiotherapist saw him at 11am and they had not yet carried out their next observation.
156. We understand Mrs E’s belief staff were aware of her husband’s deterioration because the room appeared darkened, and he was lying in a certain position. The available evidence indicates Mr E sadly deteriorated and died between routine checks, and staff were not aware of this until his wife arrived.
157. GMC guidance on good medical practice says doctors should provide family members with the information they want and need to know.
158. In this case, the evidence suggests Trust staff were not aware Mr E had deteriorated or died. Given this, we do not consider it would have been reasonable to expect them to contact Mrs E before she arrived.
159. We recognise how distressing this was for Mrs E and the impact of finding her husband had died without anyone was present. Based on the evidence available, we have not seen enough to show something went wrong in the care or communication staff provided. For this reason, we are not continuing our consideration of Mrs E’s complaint. We thank her for bringing this to us.