End-of-life care 18. In line with the NMC Code, nurses must respect the skills, expertise and contributions of their colleagues. They must also work with their colleagues to preserve the safety of these receiving care. In this instance, the nurses had to respect the professional judgement of the referring clinician, which was Mrs N’s GP. They also had to respect the expertise of the hospice staff, who specialised in end-of-life care.
19. The NMC’s Standards of Proficiency for Registered Nurses, states that nurses must also accurately assess all information to identify a person’s needs, developing person-centred, evidence-based plans. This means the District Nurses had to monitor and assess Mrs N’s care needs and make changes to her care as and when her needs changed.
20. Ms A is very concerned that the GP’s referral to the Trust’s District Nursing team was for palliative care, not end-of-life care. There is a subtle difference between the two. Palliative care is provided to improve the quality of life of those with a life-limiting illness and can be provided at any time. End-of-life care is usually the final stage of palliative care and aims to maximise comfort and dignity when a person has less than 12 months to live.
21. The decision to place Mrs N on end-of-life care was not made by the Trust’s District Nursing team. This decision was made by Mrs N’s GP on 8 November 2022. The date of the referral is not present on the original referral document, which only contains the date of a medication review. We cross-referenced this referral with the notes made by Mrs N’s GP, which show the referral happened on 8 November. These notes also clearly reference end-of-life care. The GP also prescribed anticipatory medications, which usually only happens when a person has been identified as approaching the end of their life. We cannot comment on the actions of the GP as this falls outside the scope of this complaint.
22. Our nurse adviser reviewed the information in both Mrs N’s GP records and the records kept by the District Nursing service. They explained that the Trust appears to have acted appropriately on the referral and that Mrs N appears to have been deteriorating quickly from 8 November.
23. We also asked our nurse adviser whether there was any indication Mrs N was not approaching the end of her life, and whether the Trust should have identified this. They explained the General Medical Council defines end-of-life care as patients who have:
• an advanced, progressive, incurable condition • general frailty and co-existing conditions that mean the patient is expected to live less than 12 months • a risk of dying from a sudden acute crisis in their condition • life-threatening, acute condition(s) caused by sudden, catastrophic events.
24. Our nurse adviser explained that Mrs N met the criteria above because she had an incurable condition (Parkinson’s disease) and generalised frailty, evidenced by her need for assistance in all areas of daily life. She was also at risk of dying suddenly from an acute crisis in her overall clinical condition. This indicates that, sadly, Mrs N was appropriately placed on an end-of-life care pathway.
25. The Trust also did not make decisions around withdrawing food, fluid, and active treatment. The District Nurses were only responsible for administering medications via a community administration chart. They did not have the authority to withdraw active treatment. Further, the community administration chart does not include the patient’s regular medications, meaning the nurses could not have made any decisions about whether or not to administer these. Any decision to remove active treatment would be made by the prescriber, which in this case was the GP. We cannot comment on the actions of the GP as this falls outside the scope of this complaint.
26. According to the British National Formulary’s guidance on prescribing in palliative care, whilst the oral route is preferred in end-of-life care, syringe drivers should be considered for use when a patient is unable to tolerate oral medicines, the oral route is impractical, or the patient prefers this option. The role of prescribing these medications, including the route of administration, lay with the prescriber. We cannot comment on whether these medications were appropriate as the GP’s actions fall outside the scope of this complaint.
27. The District Nursing team began documenting that Mrs N was having difficulty swallowing her oral pain relief from 23 November. On 28 November, the nurses documented that Mrs A had been consistently unable to swallow her medications in the days prior. They also documented she appeared to be in pain and was agitated. A syringe driver was set up on 29 November, following advice from a local hospice service.
28. On 11 December, Ms A wrote a letter to the team querying the use of the syringe driver. The Trust arranged for a review of this, contacting the hospice for advice on changing the driver safely to oral medication. The Trust agreed a plan to reduce and replace the syringe driver with oral medication. Unfortunately, Mrs N died before this could be completed.
29. The Trust appears to have acted in line with the NMC’s guidance by continuously assessing the information obtained at each visit and identifying the need for a more effective route of administration for Mrs A’s end-of-life medicines. The nurses had identified that Mrs A appeared to be agitated and in pain, and that she had been unable to swallow her medications on 27 and 28 November. The nurses also sought advice from a local hospice, which advised using a syringe driver. This appears to align with the NMC Code, which says nurses must respect the expertise of their colleagues, in this case the expertise of the hospice staff who specialised in end-of-life care.
30. It appears appropriate that the nurses changed Mrs N’s plan of care to include the syringe driver from 29 November. The Trust then developed a plan to change this when Ms A raised concerns on 11 December. This demonstrates the Trust was listening to Mrs N’s family and acting on their concerns, but the Trust also had to ensure it preserved Mrs N’s safety by making this change based on specialist advice. This appears to align with the NMC Code.
31. The District Nursing Team liaised with Mrs N’s GP regarding the management of her Parkinson’s symptoms. Ms A was also in contact with the Parkinson’s service daily, according to her letter dated 11 December, meaning she was able to update the District Nurses.
32. This approach appears appropriate as any changes to Mrs N’s medications recommended by the Parkinson’s team needed to be actioned by her GP. When there was a change in the medications on 24 November the District Nursing team acted on this by contacting the GP and discussing the change. The District Nurses also emailed the GP that day and asked them to contact Ms A about the medication concerns she had.
33. On 26 November, Ms A raised concerns about her mother’s medications and the District Nurses advised her to speak to the Parkinson’s team. This appears appropriate as the Parkinson’s nurses had specialist knowledge in this area that the District Nursing Team did not have.
34. It appears appropriate that the District Nurses liaised with Mrs N’s GP regarding her Parkinson’s medications, rather than approaching the Parkinson’s team directly. This is because the District Nurses were only responsible for administering medications. Any liaison with the Parkinson’s team regarding the direction of Mrs N’s care would have fallen to the prescriber, which was Mrs N’s GP. We note Ms A was also in regular contact with this team and fed back to both Mrs N’s GP and the District Nurses.
35. In summary, the evidence indicates that, sadly, Mrs N was approaching the end of her life when her GP decided to place her on the end-of-life care pathway. This is because she had a life-limiting condition, severe frailty, and was deteriorating very quickly. This met the criteria set out by the General Medical Council. The nurses also appear to have provided care in line with the NMC’s Code and Standards of Proficiency. We have seen no indications of service failure in the care provided by the Trust.
36. We understand that aspects of care were also being provided by a local hospice-at-home service and Mrs N’s GP. The care provided by these organisations falls outside the scope of this complaint, and we cannot comment on this.
Communication 37. In line with the NMC Code, the District Nurses should have provided information and explanations to Mrs A and her family about her care and treatment. Similarly, the NMC’s Standards of Proficiency say that effective communication is central to the provision of safe and compassionate nursing care.
38. As the decision to place Mrs N on end-of-life care was made by her GP, any communication about how and why this decision was made should have been from the GP in the first instance. We cannot comment on whether or not this happened as this falls outside the scope of this complaint.
39. The District Nurses’ role was to administer medications and visit Mrs N weekly to review her care needs. This meant their role was to communicate effectively about the medications, symptom control, and any further care needs such as continence care.
40. On 19 November, the Trust’s Palliative Care Co-ordination Centre wrote to Mrs N to explain she had been placed onto a palliative care pathway.
41. The nurses documented communication with Ms A about the medications prescribed and, appropriately, signposted Ms A to the prescriber when she had concerns about these. The Trust also emailed Mrs N’s GP on 24 November to ask them to contact Ms A to discuss her medication concerns further. Throughout the notes, the District Nurses consistently described the care provided as being either palliative or end-of-life care. These terms are commonly used interchangeably to describe care in the final 12 months of life.
42. On 28 November, the District Nurses documented that they communicated advice on using the syringe driver and the medications prescribed, which appears to be in line with the NMC Code.
43. On 7 December the Podiatry Service documented a telephone call with Ms A. In the notes of this call, the podiatry service stated: ‘daughter informed myself and [name of staff member] Podiatry Assistant that patient is now on end-of-life care’. This indicates that Ms A was aware her mother was receiving end-of-life care at that time.
44. On 8 December a District Nurse documented ‘had a good chat with [Ms A] this morning, she doesn’t feel [Mrs N] is quite approaching [end-of-life] yet, so discussed the driver and have mentioned we very much play things by ear and take things day to day, and it has been known that some patients have actually come off drivers as they have stabilised or improved’. This indicates Ms A was aware end-of-life care was being provided, but that she had questions about whether her mother was approaching the end of her life.
45. On 10 December, a nurse documented that Ms A queried whether the syringe driver had been implemented too soon and that the care should have focused on treating the UTI and Parkinsons.
46. Ms A wrote a letter to the District Nursing team on 11 December outlining her concerns about the use of the syringe driver. The nursing team appropriately advised her to discuss any concerns about medications with the prescriber. They also undertook a review of the use of the syringe driver, taking advice from a local hospice in order to do this safely.
47. On 15 December the District Nursing team offered a multidisciplinary team meeting, which is where all the different care providers would come together to discuss Mrs N’s care. This was an opportunity to ask questions about why Mrs N was on end-of-life care. The nurse documented they explained what this meeting was, and that Ms A declined this meeting. The team also confirmed with Ms A that there were no outstanding actions from her letter of11 December.
48. The evidence indicates the District Nursing team communicated effectively with Ms A when administering medications and signposted her to the prescriber for more information about her concerns. The District Nurses also documented that they offered Ms A a multidisciplinary meeting to discuss her mother’s care on 15 December, but she declined this offer.
49. Ms A says she does not believe her mother was approaching the end of her life and points out there is a difference between palliative and end-of-life care. End-of-life care forms the final stage of palliative care, and the terms are commonly used interchangeably. There is sufficient evidence within the notes to indicate Ms A had been made aware that her mother had been placed on end-of-life care. We note that Ms A did start to query whether her mother was approaching the end of her life, but this does not necessarily mean the Trust’s communication had fallen short.
50. The evidence indicates Ms A was aware, though may not have agreed, that her mother was receiving end-of-life care. The correct service to explain the reasons for this was Mrs N’s GP, who had originally identified her as approaching the end of her life.
51. With regards to the Trusting inaccurately documenting Ms A was happy with the care provided, it is difficult to reach a robust view on this as we have little contemporaneous evidence aside from the notes recorded at the time. Ms A’s account is that she was unhappy with the District Nursing care, but that they incorrectly documented she was satisfied.
52. There is one piece of contemporaneous evidence that indicates Ms A was happy with the care provided, at the time her mother received the care. In her letter to the District Nursing team dated 11 December, Ms A stated she had ‘no issues with the . . . very supportive District Nurses who [had] come daily and supported [Ms A and her brother]’. This indicates that, at least as of 11 December, Ms A was happy with the care being provided by the District Nursing service and had communicated this clearly to the team. We cannot know precisely what was discussed at each individual visit, however, or whether this was accurately documented by the nurses without independent, contemporaneous evidence.
53. On the balance of the limited evidence we have, the Trust appears to have been accurately documenting that Ms A was satisfied with the care provided to her mother up until 11 December. We have no contemporaneous evidence as to whether Ms A was happy between 12 and 18 December.