The Practice
Delay in identifying stroke
20. In line with section 15 of the General Medical Council’s (GMC) Good Medical Practice guidelines, the GP(s) should have:
• adequately assess Mrs T’s condition, taking account of her history and, where necessary, examined her • promptly provided or arranged suitable advice, investigations, or treatment where necessary.
21. On 16 January the care home staff called the Practice because Mrs T appeared unwell and had vomited. They told the GP her blood pressure had spiked, returning to normal less than an hour later, and she was shaky and lethargic.
22. The care staff documented a GP advised them the increase in blood pressure may have occurred due to vomiting and to encourage Mrs T to drink fluids. The GP advised the care home staff to call back if they were still concerned, and a GP could visit that evening. They added that they would review her the following day when the GP was undertaking a ward round at the care home.
23. The GP’s notes of this call align with what the care staff recorded, with some additional details. The GP also documented Mrs T had incoherent speech but that this was normal for her and that it was not unusual for Mrs T to have periods of vomiting. The GP recorded that the care staff reported Mrs T was not showing signs of pain, did not have diarrhoea, and her abdomen was not reported as being distended.
24. Our GP adviser explained that based on the information provided to the GP over the telephone, it was appropriate to advise the care staff to administer fluids and call back if there were further concerns.
25. The telephone assessment appears to have been in line with the GMC’s guidelines because the GP took account of Mrs T’s reported condition and her history of prior vomiting episodes and incoherent speech. The GPs were also going to be attending the care home the following day and offered to review Mrs T as part of that ward round. The GP also offered to review her sooner if the care staff continued to have concerns. Notably, there were no symptoms reported that could have indicated Mrs T had experienced a stroke. The advice provided appears to have been appropriate and provided in a timely manner.
26. The care staff did not contact the Practice to raise further concerns on 16 January and the GP reviewed Mrs T in person during the ward round the following day. They examined her, and noted she was looking around the room, following the people in the room with her eyes, and smiled at one point. She was rousable and responded to touch on examination. Our GP adviser said that the examination documented appears to have been appropriate based on her presentation and in line with the GMC’s guidelines.
27. Our GP adviser said that if Mrs T had suffered a stroke at this point, it would have been clearly visible when she smiled because she would have been unable to smile properly with the right side of her mouth. This was a symptom documented by the GP on 19 January, when the stroke was identified. Our adviser also added it is unlikely she could have followed people in the room with her eyes if she had suffered a stroke. This indicates that at this stage, Mrs T had not yet had the stroke, and this is supported by evidence from the carers’ notes which we explain later in this consideration.
28. During the consultation on 17 January the GP noted Mrs T may potentially have aspirated (inhaled stomach contents into her lungs) when she vomited and prescribed antibiotics to prevent a chest infection.
29. The carers’ notes of this encounter are less detailed but align with the notes made by the GP.
30. Based on the medical evidence it appears that as of 17 January it is unlikely that Mrs T had suffered a stroke as she did not show any neurological deficit, noticeable facial droop, or right-sided weakness on examination. The examination appears to align with the GMC’s guidelines in that the GP adequately assessed Mrs T’s condition. Further, the interventions provided appear to have been appropriate to her needs at that time.
31. We reviewed the records of Mrs T’s condition, as documented by her carers, to consider when she most likely experienced the stroke. The first point at which the carers documented symptoms that align with symptoms of a stroke was at 9.40pm on 18 January.
32. At this time, the carers documented ‘[Mrs T] is extremely weak particularly on her right side/arm . . . needs to be hoisted at present. . . I am going to contact the GP again in the morning’. This was in contrast to an entry at 7.32pm where the carers documented an account of her being able to transfer as normal without the hoist. This was consistently documented throughout that afternoon and the preceding days, with no concerns about ride-sided weakness or being unable to mobilise properly documented during this time. It appears this right sided weakness appeared within the two-hour window between 7.32pm and 9.40pm.
33. At 10.19am on 19 January the carers rang the Practice, and a GP attended that afternoon. The GP documented that Mrs T had likely experienced a stroke.
34. Based on the medical evidence available, the GPs appear to have examined Mrs T and provided advice and treatment that was appropriate to her needs on 16 and 17 January. They were not asked to review Mrs T on 18 January. Both assessments appear to have been in line with the GMC’s Good Medical Practice guidelines and we have seen no indication of service failure. Furthermore, the evidence indicates it is more likely than not that Mrs T’s stroke occurred in the evening of 18 January.
The Trust
Preparation for end-of-life care
35. The DN team should have acted in line with NICE guideline NG142 (end-of-life care for adults), the NMC Code and the local guidelines published by the Nottinghamshire Partnership.
36. Section 1.3 of NG142 states that the professionals managing and delivering services should think about what practical and emotional support can be provided to carers of adults approaching the end of their life and review this when needed. These guidelines do not specify what this support should look like or when it should happen.
37. The NMC Code says that nurses should communicate sensitively with carers when a patient is at the end of their life. It also says that nurses should respect the skills and expertise of colleagues and refer matters to them when appropriate. This means that in addition to providing advice and support, if the DNs identified the family needed more specialist support, they should have referred them to colleagues who could provide this.
38. The local guidelines published by the Nottinghamshire Partnership state that open and honest communication with those important to a person approaching the end of their life is ‘critical’ and staff should listen to their views. They should also provide written information on what to expect in the final days of life.
39. Mrs T’s medical records show a GP identified she was approaching the end of her life on 19 January, and prescribed anticipatory medications. These medications could not be administered by the care staff where Mrs T was living and a referral to the DN team was required. This did not happen until 27 January, which means we cannot say that any failure to prepare the family between 19 and 27 January was due to the actions of the Trust. The DN team had no opportunity to communicate with the family or consider what practical and emotional support the family might need during this period.
40. Mrs T’s medical records show that the DNs spoke to the family on 29 January and 1 February regarding what to expect. On 29 January the conversation focused on explaining that they could only administer pain relief when the patient was showing signs of pain, the ethics of dosing morphine at the end of life, and that the aim of palliative care is to keep someone comfortable whilst ‘nature takes its course’.
41. On 1 February the DN team talked through the family’s concerns with them in a face-to-face meeting. During this meeting they discussed what to expect during the end-of-life process, including a discussion around ‘the normal pattern of breathing at the end of life.’ They also discussed the family’s fear of repositioning Mrs T and stayed to observe repositioning to assess for any distressing symptoms. The family were given the attending DN’s direct mobile phone number in case they ‘needed any further support/conversation’.
42. Mrs T’s records also show that following the visit on 1 February 2023, the DNs emailed the Macmillan nursing team that day and asked for support in addressing the family’s anxieties around end-of-life symptoms. On 2 February a joint visit was held between the DNs and the Macmillan team to provide further advice and support on the end-of-life process.
43. The family kept contemporaneous notes of their experience, and we have also reviewed their account of events. We can see that it was only from 25/26 January the family documented that they became aware that their mother was unlikely to recover. It appears that they also began to have discussions with the care home staff about Mrs T being at the end of her life at around the same time. The DN team could not have provided further information at this time because Mrs T had not yet been referred to its service.
44. On 27 February, it is clear from the notes the family made at the time they were struggling with the end-of-life process and they documented they felt ‘stressed’ about this process. There is not much documented from the family’s perspective about the meetings with the DN team on 29 January, though there is a brief reference to the meeting on 1 February.
45. This is a difficult issue to balance because, on the one hand, it is clear from the family’s notes written at the time, and their family Whatsapp group chat, that they were really struggling with the emotional impact of witnessing a loved one at the end of their life. On the other hand, there is little statutory guidance or standardisation of the advice and support that should be given to families when a loved one is dying, or at what point this should happen.
46. The process of watching a loved one die is stressful and distressing in and of itself, which means the fact it was such a difficult experience does not necessarily mean the family were not adequately prepared. First-hand accounts of loved ones’ experiences of witnessing end-of-life care, available on the Marie Curie website, indicate that even when the best advice and support is provided, it is difficult to truly prepare loved ones for this experience.
47. The evidence indicates that when the DN team became aware of the family’s concerns, it held multiple meetings with them to explain the end-of-life process, enabled them to share their views, and provided a point of contact for further advice and support. This aligns with NICE guideline NG142. Notably, what support and advice looks like and when this should happen is not outlined in NG142 and is left to the discretion of the professionals. The Trust’s local guidance requires written literature be provided and the Trust has acknowledged it did not do this.
48. The DN team also involved the MacMillan nursing team to provide further advice and support to the family, which aligns with the NMC Code. MacMillan nurses are nurses who specialise in palliative care, and it was appropriate to refer to them in this instance as they have specialist knowledge of preparing families for the end-of-life process and what this care should look like.
49. The evidence indicates that the advice and support provided to Mrs T’s family aligns with the national guidance and we have seen no indications of service failure. In its response to the family, the Trust acknowledged it could have provided some written literature on what to expect and apologised that it did not do so. This apology appears to be an appropriate response to this shortfall in communication.
Pain relief
50. Our nurse adviser explained that observing a loved one at the end of their life is distressing, and changes in breathing patterns, twitches, and sounds such as moaning can be commonly misinterpreted by family as discomfort or pain. This is because being present in the final days and weeks of a loved one’s life is an emotionally heightened time and families, understandably, want their loved one to have a comfortable and dignified death.
51. We recognise the family was very close to Mrs T and were very familiar with her signs of distress and discomfort. In particular, her daughter had been her carer for many years and was able to understand her mother when others could not. That said, the usual signs of pain and discomfort can change towards the end of a patient’s life, and these can be misinterpreted by families. This is why health professionals use validated clinical scales to inform their assessment of these signs when the patient cannot communicate.
52. There are a number of helpful resources from specialist providers of end-of-life care, which include the perspectives of loved ones who have been present during this process. These patient-focused resources align with clinical guidance, noting that changes in the final days and weeks of life can include people becoming restless and finding it difficult to feel comfortable. Agitation and restlessness can present with symptoms like flailing arms and a ‘crying noise’. This restlessness is a normal symptom of dying and does not necessarily indicate someone is in pain. Marie Curie has published resources that include families’ personal accounts how upsetting it was to see this restlessness and agitation, despite being happy with the care provided.
53. NICE guideline NG31 (care of dying adults in the last days of life) is clear that for people unable to communicate, such as Mrs T, professionals should use a validated behavioural pain assessment to inform pain management.
54. The NMC Code says that nurses must only dispense or administer medicines if they are satisfied the medication will serve the patient’s needs.
55. The DNs were bound by national clinical and ethical guidelines to rely on validated behavioural pain indicators to assess Mrs T’s level of pain and could only ethically administer medication when they were satisfied it met her needs. In practice, this means they needed to see Mrs T show clinically recognised signs of pain before they could administer this medication.
56. Our nurse adviser explained that from 29 January Mrs T was receiving 20mg of morphine via a syringe driver. Syringe drivers are small, portable, battery-operated devices which deliver medicines over a given period (usually 24 hours). 20mg is a significant dose of morphine, double the starting dose recommended by the British National Formulary for older adults during end-of-life care. This means there was a greater risk of overdose when administering additional opiates for breakthrough pain. Breakthrough pain is a sudden and brief flare up of pain that is addressed via a ‘recue dose’ of additional pain relief.
57. Administering rescue doses when a person is already receiving a consistent dose of opiates elevates the risk of accidental overdose and opiate toxicity. When a patient is taking other medications, such as the benzodiazepines prescribed to Mrs T for agitation, this increases the risk of opiate overdose at lower doses of morphine than would usually be expected. This risk must be considered by nurses when deciding whether to administer additional pain relief and must be balanced with the nurses’ consideration of the clinical need to administer further pain relief.
58. We recognise the family felt strongly about their mother’s wishes not to suffer at the end of her life. We also recognise that the family’s view was that if Mrs T was a bit ‘out of it’ at the end of her life, this was less of a concern than her being in pain. This is a very understandable perspective that many people would take for both themselves and their loved ones. Unfortunately, a morphine overdose can be an unpleasant experience for a patient and any family members who witnessed this, with vomiting, choking and frothing at the mouth occurring before death. The nurses had to balance comfort with not administering medication that could lead to a premature and distressing death.
59. Because the nurses were bound by national guidelines and the NMC’s code of conduct to only administer this medication when they could see validated behavioural indicators of pain, we have considered all perspectives on Mrs T’s pain levels. When we compare the notes made by the family at the time to the notes made by the nurses and the GP, there is a clear difference in how they viewed Mrs T’s condition. We requested the records made by the care home to see if the carers there had concerns about her levels of pain. These records are the only available third-party perspective on Mrs T’s condition that was documented at that time.
60. The carers recorded concerns about pain on 27 and 28 January and contacted the DN team, who administered pain relief on these occasions. On 29 January the carers documented Mrs Y was concerned her mother was in pain, but the carers noted they felt she was restless rather than in pain. At this point the DNs set up the syringe driver, which began administering morphine to more consistently manage Mrs T’s pain.
61. The carers documented that they felt Mrs T was ‘settled and comfortable’ on 30 January. They documented some irregular breathing on 31 January but did not reference any pain, and noted she appeared ‘comfortable and settled’. On 2 February the carers documented that they had observed Mrs T for a while to ensure she was not in any pain, and that she did not appear to be. They documented they provided reassurance to her family. On 3 February the only concerns noted by the care staff were in relation to Mrs T’s breathing. The carers documented she appeared comfortable on 5 and 6 February.
62. When we balance the perspectives of all those involved in Mrs T’s care, the evidence indicates the professionals did not have any concerns about her pain not being managed. After the syringe driver was installed, the only documented references to Mrs T being in pain was in the documentation of the views of her family. We note, however, that the family were spending much more time with Mrs T than these professionals.
63. Whilst the family knew Mrs T much better than those caring for her, and spent much more time with her, we must also consider that the signs of pain at the end of life often change from those which the family would have been familiar with. It is common for families to misinterpret the signs of dying with signs of being in pain. It is possible this is what was happening, but it is also possible she was objectively experiencing pain. We simply cannot know for sure, even on the balance of probabilities.
64. The DN team also provided the family with a validated pain scale to monitor Mrs T’s pain symptoms whilst the DNs were not present, following the meeting on 1 February. This was appropriate to enable the family to capture the behavioural indicators of pain that they were able to witness whilst the nurses were not present. This pain scale used clinical research to agree upon the signs of pain in people who cannot communicate verbally, specifically in the case of late-stage dementia. We note that the family’s records made at the time indicate they did not find the scale helpful. It is unclear whether the family ever used this to inform the DNs’ decision-making in administering pain relief.
65. Given the national guidelines on managing pain in patients at the end of their lives who cannot communicate, and the NMC Code, it appears appropriate that the nurses only administered pain relief when they could see behavioural signs of pain. They were correct to tell the family that it was not ethical to administer pain relief unless they could see signs of pain and they gave the family a validated clinical scale to use to capture the signs of pain when the nurses were not present. This appears to align with the national guidelines and there are no indications of service failure.
66. The family are also concerned that the DN team was inconsistent in its approach to administering pain relief. Both the Trust and the Practice documented that the DN team felt pressured by the family to administer pain relief outside of the boundaries of the national guidelines. There were times when the DNs administered pain relief when they witnessed behavioural indicators of pain or had concerns about breathing other symptoms, and there were other occasions when none of these were observed and no pain relief was given. We can understand why this might appear inconsistent, but Mrs T’s medical records show documented clinical rationales for each of these decisions that appear to align with national guidelines. The issue at hand appears to be that the family did not always agree with the nurses’ assessments of whether Mrs T was in pain, rather than the approach itself being inconsistent. We have seen no indications of service failure regarding the consistency of the administration of end-of-life medications.
Communication
67. The NMC Code says that nurses should recognise and respond compassionately to the needs of those who are in the last few days of life, and they should communicate sensitively with carers.
68. Mrs T’s family were very concerned about comments made by the DNs who attended to her in the final days of her life. One example was a comment the family say a DN made that Mrs T would need to be heard ‘bubbling in the corridor’ before they would administer anti-secretion medication. This comment is objectively an insensitive way to communicate information about the limitations to prescribing medication, especially to a family who were witnessing their loved one dying. The family’s contemporaneous account does not record when this comment occurred, but they did record raising it with the manager of the DN team during the meeting on 1 February and that the DN manager apologised and appeared ‘horrified’.
69. On balance, this is such a specific comment, and one that was contemporaneously documented, that it appears more likely than not it happened. This appears to fall short of the NMC Code. A member of staff at the Trust has apologised for this comment, which is appropriate to put this right, and we will highlight this comment to the Trust when we inform it of our decision. This is because, whilst not indicating service failure, this is a very concerning comment for a nurse to make to a family at such a distressing and difficult time.
70. The only other objective evidence we have of the attitude of the DNs are two recordings made by the family and submitted to us. We have listened to these. What is clear from these conversations is that this was an incredibly challenging situation for both sides.
71. The recordings clearly show how concerned the family was about ensuring Mrs T was comfortable and not suffering at the end of her life. This is a highly emotive situation for any family to face and it is understandable they would challenge anyone who appeared to not be providing a peaceful, comfortable and dignified standard of care.
72. From the nurses’ perspective they must practice within the ethical guidance issued to them and what the family wanted departed from this. This is a very difficult position for the nurses too, because they must follow the clinical and ethical guidelines.
73. What we can say is that from these two recordings we have heard nothing to indicate that on those two occasions the nurses lacked compassion, demonstrated a poor attitude, or made inappropriate comments in front of Mrs T.
74. In the first recording, the nurse’s conduct was very compassionate and understanding towards both the family and Mrs T. They demonstrated compassion and dignity when listening to Mrs T’s breathing, explaining what was going to happen and that the stethoscope might feel cold, and explained why they were giving medication. They also spent time listening to the family’s concerns and explaining why they could not give medication without there being a clinical indication to do so.
75. In the second recording, the nurses were more assertive with the family about the ethical limitations to administering pain relief and did set a boundary at the end of the conversation. But we do not think this approach lacked compassion or was inappropriate. This was quite a challenging conversation to navigate for all people present, and the nurses listened to the family’s concerns, demonstrated compassion, reflected their understanding of what the family wanted and why, and explained why they couldn’t do what was asked.
76. In both recordings the nurses matched the tone/volume of the family, and only commented on issues raised by the family whilst in Mrs T’s presence.
77. We have limited evidence of the conduct of the nurses across Mrs T’s end-of-life care. The evidence we do have indicates that on those occasions the nurses’ conduct aligned with the expectations of the NMC Code. There was one comment made that we think indicates that this nurse, on that occasion may not have demonstrated the compassion and sensitivity expected of them by the Code and we will feed this back to the Trust. Overall, the limited evidence we have suggests there are no indications of service failure in relation to the attitude of the nursing team as a whole.