Discharge 17. Mrs B complains the Trust discharged Mr B on multiple occasions in November and December 2022 when he was seriously unwell. She explains he then needed to be admitted again very soon after. We will go on to address each discharge in turn. The discharge guidance is applicable here. Annex D of the guidance lists the criteria to reside in hospital. Generally, if a patient does not meet any of these criteria, there can be an active consideration for discharge. The criteria is listed as: • ‘requiring ITU or HDU care? (intensive care or high dependency unit) • requiring oxygen therapy/NIV? (ventilation) • requiring intravenous fluids?
• NEWS2 greater than 3? (clinical judgement required in persons with AF and/or chronic respiratory disease) • diminished level of consciousness where recovery realistic?
• acute functional impairment in excess of home or community care provision?
• last hours of life?
• requiring intravenous medication > b.d. (including analgesia)?
• undergone lower limb surgery within 48 hours?
• undergone thorax-abdominal/pelvic surgery with 72 hours?
• within 24 hours of an invasive procedure? (with attendant risk of acute life- threatening deterioration) Clinical exceptions will occur but must be warranted and justified. Recording the rationale will assist meaningful, time efficient review’.
1 - 2 November 18. Our physician adviser explains discharge is a very complex and nuanced process. There is a complicated balance between a patient needing treatment in hospital and aiming to get them home with support in place if needed. Often when a patient remains in hospital, they can become deconditioned and there is a risk of infection.
19. For this specific discharge, Mr B presented on admission with a six-week history of intermittent diarrhoea. The records support he was otherwise well, with no weight loss, abdominal pain, change in appetite, fevers, or other symptoms.
20. The discharge summary is thorough and considers Mr B’s history and symptoms. As part of the discharge, the Trust considered a LACE score. This is a scoring system recommended by the British Geriatrics Society and looks at length of stay (L), acuity of admission (A), comorbidities (C) and emergency department use (E).
21. A LACE score is a tool used to predict the risk of readmission to hospital within 30 days, or a risk of death based on the four variables above. When a patient is discharged, there is always a risk of readmission. As set out above, this needs to be balanced with the risk of keeping a patient in for too long and the risks that surround this.
22. At the point of discharge, Mr B was not considered to be frail, he had been in hospital for one day and had a LACE score of ten. This means, at that point in time he was not deemed to be frail or at an increased risk of deterioration in the future compared to other people of his age. He had a clinical frailty score (CFS) of two to three. The CFS is a score of one to nine for over 65s, where one is very fit, eight is severely frail and nine is terminally ill.
23. Mr B had reported he felt better, and his diarrhoea had resolved, which was recorded to be the reason for his admission. He had undergone a computed tomography (CT) scan, a medical imaging procedure, to rule out a perforation or build-up of fluid in the bowel. He was treated with antibiotics, safety netting advice was given and follow up was arranged with a repeat CT scan in two weeks and bloods in the community. This was appropriate based on the symptoms he was presenting with at the time. He did not meet the criteria to remain in hospital. Based on this, it was safe and in line with the discharge guidance to discharge him on this date.
9 - 18 November 24. Mr B presented on this occasion with a head injury following a fall. Tests showed he had a deranged liver function, and a raised CRP.
25. A LACE score was not recorded on this discharge summary, which is inconsistent compared to the previous summary. His LACE score would have been higher this time, and Mr B had received IV fluids during the admission. His frailty score had also risen to four. If a LACE score had been carried out, this may have triggered a more robust plan going forward.
26. This aside, the reason for this admission was following a fall. The Trust caried out the appropriate investigations to be sure it could safely discharge Mr B. Therefore, on balance completing a LACE score is not likely to have changed the management. Our physician adviser recognises the raised levels such as CRP but explains this was carefully considered and follow up was put in place as a result.
27. The Trust sought input from the neurology team because of the fall and carried out investigations. It arranged a CT thorax and abdomen, an MRI scan and prescribed Mr B with antibiotics. It planned for follow up with the GP to repeat kidney function. Mr B’s MRI scan was reported to be fine, and he was discharged with antibiotics, safety netting and the appropriate follow up.
28. Our physician adviser explains there was a risk to Mr B becoming unwell in hospital, and sometimes this can lead to further harm. It is a finely balanced decision. The records from the time show Mr B was clinically improved, it was therefore appropriate and line with the discharge guidance to continue the investigations in a community setting.
28 - 8 December 29. For this admission, Mr B was admitted with complaints of a dry cough, shortness of breath and feeling unwell. On admission he was found to be Covid-19 positive. Our physician adviser explains this admission could not have been foreseen when Mr B was previously discharged.
30. On his discharge summary for this attendance, neither a LACE score nor a CFS score were recorded. These scores would have been valuable and may have triggered a chance to consider the overall picture more thoroughly. Mr B underwent various investigations and treatment during this admission, including an endoscopy.
31. At the time of discharge, Mr B did not require oxygen or fluids. His presenting symptoms settled with treatment. An outpatient colonoscopy had been arranged to continue investigations relating to his blood test results. He was discharged with antibiotics, a repeat CT in three months, a respiratory follow up and a GP review in the community.
32. As Mr B was not needing hospital treatment for Covid-19 by discharge, it was safe and appropriate to try to get him home. As set out above, this is always a finely balanced decision based on clinical judgment at the time. There is evidence to show the Trust put the appropriate safety netting in place and this was in line with the discharge guidance.
33. We recognise why Mrs B has concerns about these admissions. It was understandably a very worrying time for her to experience Mr B having repeated admissions in a short space of time. We do not underestimate how difficult this must have been for her. Our physician adviser explains for the above admissions, at the time, Mr B went in with different and very specific medical problems which were treated: diarrhoea, a fall and Covid-19.
34. We acknowledge with hindsight, there were clearly other things going on at the time, with things such as Mr B’s high CRP, as she has rightly told us. With some conditions, it can take a while for a wider clinical picture to form, and it is easier to recognise this with hindsight. This is because something such as a CRP marker can be raised due for lots of different reasons, and it is a nonspecific marker (a test or measurement indicating a general condition, like an infection or inflammation) without pointing to a specific cause or disease.
35. It is not possible to look at a raised CRP and immediately get to a diagnosis, and there can be lots of reasons for it being raised. For these admissions, when Mr B presented with something specific, that specific issue then started to resolve through the course of the admission. This mean he did not need to remain in hospital for that specific issue, and efforts were made to get him home. Based on all the evidence, we are satisfied at this time it was in line with the discharge guidance and reasonable to discharge him at these points, with appropriate follow up in place. We are incredibly mindful of why Mrs B had worries about this, and we hope this offers some reassurance about why these decisions were made.
10 - 16 December 36. The next admission shows Mr B was admitted to the Trust with confusion. The records show he was started on antibiotics for a likely hospital acquired pneumonia given his recent admission. His CRP was raised.
37. The records suggest Mr B made a good recovery on the ward, and his CRP was dropping although it was still high. It is documented Mr B was keen to get home and felt much better. We recognise a hospital would be concerned keeping a patient in longer than needed due to deconditioning or further infection.
38. At this point in time, although the admissions may have appeared to be initially unrelated and Mr B improved, our physician adviser explains given the number of admissions so close together, the Trust should have started to think about if something else had been going on. Mr B had only been discharged two days prior, and this was his fourth admission in just a few weeks.
39. The Trust did not carry out a LACE score or consider Mr B’s frailty on discharge. It had been documented earlier in the admission on 10 December he had ‘advanced frailty’, supporting that this should have been more carefully considered upon discharge. If the Trust had considered a LACE score and frailty here, given the earlier documentation, it is likely this would have prompted a more thorough discharge consideration.
40. On discharge there were quite a large number of discharge actions directed to the GP, including monitoring Mr B’s haemoglobin and atrial fibrillation post colonoscopy. Our physician adviser explains a more proactive approach could have been taken to put something more robust in for future care planning.
41. It is possible the decision may still have remained to discharge Mr B, but with a plan to start thinking about care planning and next steps. The Trust does not appear to have thoroughly thought about the likelihood of Mr B needing to come back into hospital at this point.
42. We can see a do not resuscitate order (DNACPR recommendation) had also recently been put in place. Mr B had changed from for resuscitation, to not. This suggests a different approach had come into place, acknowledging Mr B had become more frail. As this decision was made, this emphasises the need for more robust and advance care planning at discharge.
43. Overall, our physician adviser explains we cannot say the Trust should not have discharged Mr B. However, it should have considered advance care planning, started to think about palliative care, and recognised Mr B was becoming increasingly more frail. There is a failing here.
44. Our physician adviser explains at this discharge there was an opportunity for the Trust to think about things more holistically as a whole and taken a more proactive approach. Mr B’s frailty score had previously gone from a two to a four, but then was not considered further, despite that it was getting higher. A RESPECT form was also filled in, but key questions were missed such as ‘what matters to me?’ were blank.
45. A discussion at this stage about these points may have avoided future distress from invasive procedures and investigations, as well as empowered Mr B to make decisions and potentially die at home if that was his wish.
46. We think there was a missed opportunity to support Mrs B and prepare her for the possibility of Mr B’s decline, and to support Mr B. Our physician adviser explains this would not have changed the eventual outcome, however Mrs B could have anticipated palliative care and advance care planning. We will go on to consider more about palliative care below.
47. We recognise Mrs B’s account, and that she has suffered distress in wondering if investigations could have been stopped sooner, or different decisions made. We think she lost the opportunity to have these discussions, be more informed and possibly make different choices. We understand how important it is that as much is done as possible at the end of someone’s life to make sure if possible this is in line with their wishes. We have asked the Trust to make changes as a result.
Management of condition 48. Mrs B has concerns the Trust was not taking the appropriate steps to manage Mr B’s condition or diagnose or treat him. The Trust says Mr B’s condition was difficult and complex to diagnose. It recognised he was put through many diagnostic procedures to reach a diagnosis.
49. Our physician adviser explains this was a very complex medical picture. As set out above, initially Mr B appeared to be presenting with specific and differing acute medical issues: diarrhoea, a fall and Covid-19.
50. We recognise Mr B had raised inflammatory markers and various symptoms. The records show the medical team were trying to tie these together to look for a cause. Despite various scans, investigations, and treatments it did not get to this.
51. A raised CRP has to be taken in the clinical context at the time. A patient’s blood markers can change for various reasons, and this needs careful clinical judgement. During each admission, the Trust was working through Mr B’s history, symptoms and test results based on how he was presenting each time. It was taking the appropriate steps to rule things out, in the absence of any obvious diagnosis.
52. It can be an extremely difficult clinical decision in knowing when to ‘pull back’ or keep trying all investigations and treatment when a cause is unknown. Our physician adviser explains it does not have to be an ‘either or,’ you can continue investigations, whilst giving due consideration to advance care planning or palliative care. This is difficult and finely balanced, and the Trust has recognised it is not as good as it would like to be in recognising end of life.
53. Our physician adviser explains the investigations and treatment were all appropriate, in line with the good medical practice guidance. Good medical practice guidance says ‘to diagnose or treat patient 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 and promptly provide or arrange suitable advice, investigations or treatment where necessary.
54. For each admission, the Trust was carefully considering Mr B’s symptoms, history and arranging investigations and treatment to rule things out and to try to get closer to a diagnosis.
55. We recognise very sadly Mrs B was left not knowing why Mr B was so unwell. We do not underestimate how distressing this must have been. From our careful consideration of the evidence, we are reassured the Trust was appropriately trying to get to a diagnosis and offer the right treatment throughout each admission.
56. It is worth recognising the Trust may have been ‘over investigating.’ For example, carrying out a position emission tomography (PET) scan in February would not have changed the management at this late stage. If there was a diagnosis of something such as cancer at this stage, it was not going to treat this. We are mindful of why the Trust was doing what it could to try to find a diagnosis. Due to the complexities of the diagnosis, the Trust did a large amount of investigations and tests.
57. We recognise the Trust was carrying these investigations and treatments out in good faith, wanting to turn the clinical situation around and find out a reason for the issues. It is also easier to look back with the benefit of hindsight.
58. We think the investigations were appropriate in the clinical context and in line with guidance. We recognise the Trust has acknowledged it possibly carried out too many investigations. Although we cannot say it did not follow guidance here, we are reassured to see it has reflected on what Mrs B has told it and implemented learning from this.
Palliative care 59. Mrs B raises concerns the Trust delayed the decision to start palliative care. The Trust has recognised it should have talked to Mrs B sooner regarding input from palliative care.
60. The NICE end of life guidance sets out information about identifying adults who may be approaching the end of their life. This is to help start discussions around advance care planning and to support people’s preferences for where they would like to be cared for and die.
61. In line with this guidance, we think there was an opportunity for the Trust to have considered this during the admission of 10-16 December. This is because as set out above, the evidence shows Mr B was becoming more frail at this point, his DNACPR recommendation decision had changed, and he had been in hospital a number of times in a small space of time. The Trust could have started to think about things differently at this stage, and had more of discussion about what was proportionate, and what the next steps would look like. It did not act in line with this guidance and there is a failing here.
62. We do not know what these discussions and decisions would have looked like. However, it is possible some of the later investigations and treatment may not have gone ahead. There therefore would have potentially been the opportunity to start palliative care sooner and have conversations about advance care planning.
63. This would have meant there was an opportunity to consider what Mr B would and wouldn’t want as he approached end of life, alongside the views of Mrs B. This would include the preferred place of care, with a focus on where he would want to be at the end of his life. We are mindful these conversations would still have been difficult at any given point. Earlier conversations may have prevented shock and distress to Mrs B and given her the chance to feel better supported and better prepared. We acknowledge she has continued to worry about if Mr B was suffering and if there were more opportunities to support him.
64. Mrs B has explained how in February 2023, she had to take time away from Mr B to look for a nursing home. She also had to take Mr B to a PET scan in a taxi when he was extremely unwell. We are mindful if these discussions were had sooner, it could have been considered if this was proportionate or appropriate.
65. Overall, we cannot say this would have changed the clinical outcome but recognise the opportunity to make better informed decisions may have prevented some distress and suffering. Mrs B is left not knowing if different arrangements could have been put in place and how these conversations would have went, which we think is distressing in itself.
66. We have looked to see what the Trust has done so far to recognise this. The Trust has acknowledged this, and we are reassured to see it has apologised. We can see the Trust has already accepted this failing and said it will support staff to recognise when a patient is dying and to make earlier referrals to the supportive palliative care team. We are pleased to see this however think the Trust needs to go further to explain how any improvements will prevent a repeat of these mistakes in the future. We therefore recommend the Trust take further action.
67. Mrs B also has concerns about the standard of palliative care once it was put in place on 28 February 2023.
68. The Trust says it is satisfied the palliative care that was in place was appropriate.
69. The relevant guidance here is the last days of life guidance. It says:‘If it is thought that a person may be entering the last days of life, gather and document information on: • the person's physiological, psychological, social and spiritual needs • current clinical signs and symptoms • medical history and the clinical context, including underlying diagnoses • the person's goals and wishes • the views of those important to the person about future care’.
70. Our palliative care adviser also confirms this was an extremely challenging case. The medical team were questioning whether Mr B had a malignancy. This is something that is potentially treatable, so it is very difficult to know the right time to stop investigations and think about palliative care.
71. When it was decided palliative care would be started, the guidance says to provide access to highly skilled people. The Trust transferred Mr B to a special end of life unit. This type of a unit has a higher intensity of specialist palliative care. This happened shortly after the decision was made, and this was appropriate in line with the guidance.
72. The palliative care team then created an individualised care plan, which accounted for comfort and dignity. There are entries throughout the records to evidence comfort was maintained. There are entries to show Mr B had ‘no signs of distress and his privacy and dignity was maintained’. All entries for this period of palliative care make refence to Mr B’s comfort and dignity in line with the NICE care of dying adults guidance.
73. We recognise that despite the above, end of life can be distressing to witness, and it very sadly can vary for patient to patient. Despite treatment sometimes patients can become distressed or agitated, and we do not want to take away from what Mrs B has told us about how difficult this was for her. We were sorry to learn about this.
74. Specifically, regarding fluids, the GMC decision making guidance provides practical support around hydration. It explains there should be an individualised approach to fluids. It states it is not appropriate for all patients to be placed on IV fluids at the end of life, it says: ‘If a patient is expected to die within hours or days, and you consider that the burdens or risks of providing clinically assisted nutrition or hydration outweigh the benefits they are likely to bring, it will not usually be appropriate to start or continue treatment’.
75. The BMA guidance sets out that many people approaching death do not need hydration or nutrition, and it would be inappropriate and unnecessarily invasive to routinely start this in every patient who loses the ability to swallow. We are mindful Mrs B has significant concerns around an IV drip. We hope this has helped explain this is not necessarily standard practice and this is not always deemed appropriate, particularly if a patient is eating and drinking.
76. The documentation a few days before Mr B died suggests he was eating and drinking. We are mindful Mrs B has explained Mr B was not eating well, although she would take food in, he would eat and drink very little.
77. Overall we cannot say it was not in line with guidance for Mr B to not have IV fluids, as it is not always clinically appropriate. It is clear from the records Mrs B was really worried about this, so it would have been appropriate to consider her concerns and have a clear discussion around fluids.
78. The BMA guidance sets out if a patient has requested nutrition or hydration be provided until their death, or those close to the patient are sure this is what the patient wanted, the patient’s wishes must be given weight, and when the benefits burdens and risks are finely balanced this will be the defining factor. This did not take place and there is no evidence of any communication with Mrs B about this, so we think there is a failing here.
79. We think there was a lost opportunity to provide support and these conversations would have allowed her to be part of the decision making and have more knowledge about the situation. This may have avoided some of the stress, and we have asked the Trust to make changes as a result.
80. We understand Mrs B also has concerns about oxygen not being used. In line with the guidance this is also not routinely used at the end of life unless a patient is in significant respiratory distress without it. The evidence does not suggest Mr B was in significant respiratory distress.
81. Mrs B also has very serious concerns around how the Trust administered Mr B’s morphine medication. Our palliative care adviser has carefully considered this.
82. Our adviser explains Mr B had been started on quite a conservative dose of morphine, 10mg over 24 hours. This is a small proportion of what he was having as a ‘PRN’ dose, this means ‘as and when is needed’. The PRN dose is one sixth of the total 24-hour dose. Our adviser explains a starting dose of 10mg is on the lower side. His morphine was appropriately in place when he was started on palliative care.
83. We understand Mrs B’s concerns around Mr B having a large dose of morphine before his death. Our adviser explains a syringe driver (a pump used to deliver medication continuously) delivers medication more slowly than a PRN dose. Therefore a patient is not more likely to develop side effects or complications from the syringe driver than a regular oral dose.
84. Our palliative adviser explains there is no evidence that morphine hastens death. A syringe driver is often used when it has been identified someone is in the last days of life. As a result, this is why patients often die shortly after this medication is commenced. This is not because it hastens death, but because a person is already dying. We have carefully considered the evidence and have seen Mr B’s medications and doses were all appropriate and in line with the NICE care of dying adults guidance, and hope this can offer Mrs B some reassurance.
85. We are mindful Mrs B has significant concerns around the nursing care. We acknowledge her account and what has told us. We have not seen any omissions with the records around Mr B’s end of life care, including around fluids and medication. Although we recognise the notes are sparse in places, so it can be difficult for us to know exactly what happened at all times. We are not intending to detract from Mrs B’s account.
86. We have seen the Trust acted in line with above guidance in providing clinical care, but recognise there were lost opportunities to provide support to Mrs B and make sure it was communicating everything she needed to know, particularly the rationale for not providing intravenous fluids towards the end of life.
87. To summarise, we have found failings in how the Trust considered Mr B’s discharge on 16 December. We think it was reasonable to start to consider advance care planning and discussions around end-of-life care at this stage. We have seen the palliative care that was put in place was in line with guidance but recognise there were opportunities for this to have potentially taken place sooner. We think this caused Mrs B distress and have set out the actions we are asking the Trust to take as a result.