Communication
20. Miss A complained the Trust did not tell her, or Mrs E, that Mrs E’s cancer had spread and was now terminal, and that she had a short time to live. We recognise how deeply Miss A has been affected by her mother’s death and how she said this came as a surprise to her.
21. On a CT scan the Trust performed on 24 June, it found four new nodules (lumps), two in the right lung and two in the left, with a pre-existing nodule being stable. The MRI report from a scan on the same date indicates gross infiltration into the liver, particularly the left lobe (side). It also showed an enlarged lymph node and some fluid. It said there was ‘marked progressive disease with significant infiltration of the liver’, meaning her cancer had worsened and spread significantly in her liver.
22. The records say the Trust spoke with Mrs E on 27 June, after internal discussion, and explained the scans indicated her cancer had spread. It told her of its plan to discuss this at the next multidisciplinary team (MDT) meeting.
23. Mrs E’s clinical records document a meeting later that day between the Trust’s oncologist, acute oncology advanced nurse practitioner, Mrs E, and Miss A, at Mrs E’s request. The records say that in this meeting it explained the MRI and CT scan of Mrs E’s liver and chest showed her cancer may have grown. It told them the scans would be discussed at the next multidisciplinary team (MDT) meeting on 30 June. It said it would then discuss whether to continue with Mrs E’s current treatment or to change it.
24. Miss A told us the Trust did not say anything about cancer spreading in her liver. Sadly, we have no other evidence of the meeting that took place on 27 June. On balance, we do not have enough evidence to say the Trust’s documentation of that conversation is inaccurate.
25. While the Trust later acknowledged it missed an opportunity to help her understand how serious the situation was and that this was an oversight on their behalf, we do not think this is the same as not telling her the cancer had spread.
26. ‘Prognosis’ means the likely course of an illness. Our geriatric care advisers explained that while Mrs E’s scan results indicated she was unlikely to get better in the medium term, they did not indicate she was dying at this time.
27. The clinical records show the breast cancer MDT meeting decided Mrs E should continue systemic therapy, which we believe to be the medication exemestane. Mrs E’s records show the Trust was discussing cancer treatment options for the future after they had treated her infection. It has explained that after it had treated this, it planned for Mrs E to start cancer treatment again.
28. The Trust also referred Mrs E to the upper gastrointestinal MDT meeting to discuss her scans but this meeting did not take place until after she had died. The Trust also determined she likely had sepsis on 6 July due to raised inflammatory markers in her blood test indicating infection. It gave her two types of antibiotics to treat this.
29. Between 7 and 8 July, the Trust decided Mrs E was not doing well and needed help with overall palliative management, so made a referral to the palliative care team. Palliative care is defined in NICE NG31 as the last year of life. Our geriatric care advisers have explained this referral is not on its own an indication that the Trust had realised Mrs E was dying very soon, as palliative care can span a long period.
30. NICE NG31 says ‘it can often be difficult to be certain that a person is dying’. The National Audit of Care at the End of Life statistics show one third of patients died within a day it was recognised they were dying, and this was mostly likely to be under four hours from when it was recognised.
31. We recognise that in the local resolution meeting between the Trust and Miss A the Trust said it should have let Miss A know Mrs E only had a couple of days or a week left. However, the clinical notes from the time do not suggest the Trust should have known this. We suspect the Trust’s comment here was not entirely without hindsight.
32. The clinical records show Mrs E had increased back pain on 8 July and her blood was acidic. This coupled with her increasing potassium levels and worsening liver function meant the Trust identified she was dying.
33. Miss A queried that Mrs E had high potassium levels, as she thought Mrs E had died from her cancer. Mrs E had had a higher than usual potassium result since she entered hospital. The Trust had been treating this and believed it to be a side effect of her medication. Our geriatrician clinical advisers have checked Mrs E’s test results. They said her potassium levels had stopped rising but rose again to a high level according to the blood test taken late morning on 8 July. Our clinical advisers believe her high potassium levels on this day were a symptom of her decline, which the Trust responded to, rather than the cause of her decline.
34. The Trust’s deteriorating adult in-patient policy directs clinicians to regularly monitor the patient’s measurements such as blood pressure, pulse rate and temperature. Our advisers have reviewed Mrs E’s measurements prior to the Trust identifying she was dying, and they did not change to indicate her deterioration, even on the morning of her death.
35. We cannot see the Trust should have realised Mrs E was dying and told Miss A sooner than it did.
36. Therefore, our decision is that the Trust did inform Mrs E and Miss A that the cancer had spread. Before midday on 8 July there was no clear indication she would die very soon, so we do not think the Trust should have told them this sooner than it did. We do not uphold Miss A’s complaint about the Trust’s communication.
Pain relief
37. Miss A complains the Trust did not give Mrs E enough pain relief on the day she died, 8 July 2022. She told us Mrs E was in pain from 2pm, when Miss A arrived at the hospital, until when she died that evening. We are sorry to hear of both Miss A and E’s distress on this day.
38. Miss A told us that a nurse told her the end-of-life team had not told her what to do and so she did not know what to do. She told us the Trust said her mother was comfortable, but when she and her son arrived at 2pm her mother was in agonising pain and was crying out for help. She said she asked a nurse for painkillers and was told her mother needed to be relocated to a side room before they could provide any. She said she repeatedly asked nurses to give her painkillers, and some said they would return with painkillers but did not do so. She said they gave her an IV cannula into her thigh which did not relieve her pain. She said she spoke to a doctor who said they would get a nurse to provide her with some painkillers. They said eventually a nurse came with morphine which did not help either. She said her mother cried out in pain until she died.
39. The clinical records show the Trust realised Mrs E was dying around midday when her blood test results came back and showed significant deterioration.
40. NICE analgesia (pain relief) guidance recommends a stepwise approach to pain relief for mild to moderate acute pain. It has no guidelines for severe pain.
41. The Trust’s prescribing guidelines explain what medication should be prescribed when. It explains clinicians should match the level of medication to the patient’s pain. It advises clinicians seek advice from the palliative care team regarding opioid patches, such as buprenorphine for patients with uncontrolled pain. It explains buprenorphine patches should be continued in the last days of life and changed on schedule. It explains the patch can be used alongside other opiates that are prescribed as needed.
42. It says patients may require more than one assessment per day, and if symptoms remain uncontrolled to contact the palliative care team.
43. Buprenorphine is a strong opioid pain medication. The NICE BNF for buprenorphine explains these patches are not suitable for acute pain or for those with rapidly changing pain relief requirements. This is because you need to change the dose of buprenorphine in stages, and it takes time to reach full effect so you cannot change the dose quickly.
44. The Trust’s guidance explains that in frail patients 1-3 milligrams of subcutaneous (injected under the skin) morphine up to once hourly as needed should be used. If this is given, and does not help, another dose should be given. If this does not work, then clinicians should contact the palliative care team.
45. The Trust’s guidance also includes a table from St Christopher’s Hospice (2002) that explains that over a four-hour window 5 milligrams of oral morphine is equivalent to 2.5 milligrams of subcutaneous morphine.
46. For oxycodone, it explains 1 to 2 milligrams should be given subcutaneously up to once hourly as needed. If this does not work, they should try one more dose before contacting the palliative care team.
47. For example we noted what pain medication Mrs E had on 8 July.
48. In the afternoon the Trust gave her oxycodone at 3.30pm. Then it gave her oral morphine at 4.10pm, which the Trust said was after a doctor came to see her. The Trust has not been able to provide any nursing or medical notes for Mrs E’s care from 2.19pm until just after her death at 6.42pm. At that time a nurse noted that Mrs E’s family told her she was in pain so she went to get more oxycodone, but by the time she came back Mrs E had died.
49. The palliative care formulary explains it is generally bad practice to prescribe more than one opioid at a time. It explains sometimes you can prescribe regular oxycodone and morphine as required. However, in this case the Trust palliative care team prescribed morphine as needed and then the medical team prescribed oxycodone once an hour as needed.
50. Our geriatric care and nursing advisers noted it is not usual for oral morphine to be prescribed alongside subcutaneous oxycodone. Our geriatric care adviser said this was an inappropriate prescription. We have explored the possibility that Mrs E deteriorated at that point and that meant the oral medication route was no longer available. But that was not the case as she was given the injection of oxycodone before oral morphine.
51. After the Trust realised Mrs E was dying, it considered whether she needed syringe driver medication. This is a device that delivers medication steadily over 24 hours. While the dose may be the same, this can be preferable in some situations if the patient is struggling to swallow, they are vomiting or they feel sick. We can see the Trust decided it was not appropriate at this time because Mrs E had been comfortable that morning.
52. The Trust’s end of life policy states ‘continuous re-assessment of the dying person is recommended in order to ensure symptom control is optimised and any new symptoms are addressed swiftly and managed promptly’.
53. NMC’s the code recommends all records are true, timely, clear and accurate.
54. GMC Good Medical Practice says doctors must make clear, accurate and legible records to document their work. They should make records at the same time as the events they are recording or as soon as possible afterwards.
55. There is a lack of detailed nursing documentation from the Trust for the afternoon of 8 July as Mrs E was dying. The Trust conducted and recorded pain assessments of Mrs E on 8 July at 2am, 4am, 5.43am, 6am, 8am, 9.35am, 10am, 12pm, 1pm, and 2pm.
56. Our palliative care nursing adviser has explained the assessments are timely and appropriate up until 2pm, but we cannot tell if they are accurate or not. The Trust has been unable to provide us with any other nursing notes from that tine which might shed more light on Mrs E’s comfort. Our adviser said therefore it is difficult for us to know whether the patient was visibly struggling but not verbalising pain or whether she was aware that she was being monitored at these times.
57. After the Trust’s first medical consideration when it realised Mrs E was dying at 2pm, there is no evidence it did any further pain assessments. Nor can we see any nursing or medical notes in relation to the Trust’s assessment of Mrs E’s pain or consideration of pain relief. We would expect to see detailed records in line with NMC and GMC guidance.
58. The pain assessments we do have also may not be completely accurate. At 2pm the pain assessment reported no pain yet the medical review at 2.05pm reports some back pain.
59. The Trust did give Mrs E strong opioids at 11.39am, and twice between 3.30pm and 4.10pm. We can see a note regarding the dose given at 4.10pm being for ‘pain’ but no further information. We also can see no information about whether the medication that was given was effective in addressing Mrs E’s pain.
60. In line with the Trust’s policy, and the prescriptions it wrote, the Trust could have given Mrs E medication every hour. If that medication was not effective this should have been escalated to the medical team or palliative care team. We can see the Trust mentioned a doctor came to see Mrs E around 4pm but we can see no note of this or of their consideration of her pain.
61. Overall, this makes it difficult for us to know what the Trust’s assessment of Mrs E’s pain was, what information it based this on, and therefore what the appropriate medication to give was. We cannot be assured the Trust’s administration of its prescribed medication was appropriate in response to her assessed pain. Therefore, we cannot determine if there was a missed opportunity for the Trust to make Mrs E more comfortable as she was dying.
62. The Trust’s poor record keeping means the evidence we can take from those records is limited. But we do have further evidence in the form of Miss A’s account of what happened. Miss A told us that when she and her son arrived just after 2pm her mother was in agonising pain and was crying out for help. She said she asked a nurse for painkillers and was told her mother needed to be relocated to a side room before they could provide any. She said she repeatedly asked nurses to give her painkillers and some said they would return with painkillers but did not. She said they gave her an IV cannula into her thigh which did not relieve her pain. She said she spoke to a doctor who said they would get a nurse to provide her with some painkillers. They said eventually a nurse came with morphine which did not help either. She said her mother cried out in pain until she died.
63. We have no reason to doubt Miss A’s account of her mother’s pain, and that is the only account we have from 2pm onwards. We find that, on the balance of probabilities, Mrs E was in pain as described that afternoon. We have no evidence to show the Trust took action in line with its own policies to manage Mrs E’s pain, or that it provided her with appropriate doses of pain medication, in line with its policy, if the ones given were not effective in managing Mrs E’s pain.
64. Our decision is that do not have evidence to suggest the Trust assessed and managed Mrs E’s pain well. As such our finding is it did not do so. This is due to insufficient nursing records and documentation. The Trust’s insufficient nursing records are in itself a failing.
Impact
65. We cannot tell exactly how much pain Mrs E was in on the afternoon of 8 July, or how effective or otherwise any pain medication was.
66. We have already described above Miss A’s account of how much pain her mother was in. We agree that watching her mother in more pain than she should have been in, and spending her mother’s last afternoon trying to get pain medication for her, was emotionally impactful for Miss A. We find this also made her bereavement worse and affected her last memories of her mother.
67. The Trust said there is no excuse and no need to have pain. It has apologised to Miss A that Mrs E experienced pain and acknowledged she needed to have more painkillers than she did. We consider the Trust need to do more to prevent this from happening again and to provide remedy for Miss A.
68. The distress to Miss A has also been exacerbated by the lack of detailed nursing records. Even with our investigation Miss A and her family will not have answers about exactly what happened with her mother’s pain management the afternoon before she died. They continue to have concerns she died in more pain than she needed to.
69. The Trust has not put this right.
End of life team
70. Miss A complains the Trust did not provide enough in person support from the endoflife team. She says the palliative care team only reviewed her once on 8 July. Miss A said a nurse told her the palliative care team had not told her what to do, so she was unsure.
71. The clinical records note the Trust’s palliative care team assessed Mrs E between 11.30am and 12pm on 8 July.
72. The palliative care team noted she was uncomfortable, very swollen and sleepy. Mrs E told them her hands and feet felt tight and her back was aching. She had struggled sleeping for the past few nights and felt this made her more tired.
73. The palliative care team told Mrs E it would change her medications to try to make her feel more comfortable, and the doctors had prescribed medication to help with the fluid. It noted she was having ongoing medical management but was very poorly. It noted she was breathless on exertion and required assistance to use the toilet for the first time that day. It assessed her condition as unstable.
74. Regarding Mrs E’s psychological, spiritual and social needs, the Trust offered her a chaplaincy referral but she declined this. It noted at this time Mrs E was distressed at her deterioration and very fatigued. It therefore offered her reassurance it was adjusting her medication to try and make her feel more comfortable. It noted Mrs E was not associating her current deterioration with her illnesses.
75. It then made a management plan for her. This was to increase her buprenorphine patch to 10 micrograms and to stop the milder co-drydamol. It also prescribed her oral morphine as required. It then planned a medication review for the next day.
76. The Trust’s medical team also contacted the palliative care team around 2pm when it realised she was dying. She was scheduled in for a review the next day to see how the medications it had prescribed earlier had worked and if anything needed to be altered.
77. Our geriatrician advisers confirmed there is no national guidance to suggest when patients should see a hospital’s palliative care team or how often. They explained palliative care teams are not emergency response teams and are there to advise medical teams on ongoing care.
78. The Trust’s end of life policy says patients in the last days of life should have an ongoing assessment (at least every 24 hours).
79. Our geriatrician advisers said it was only clear Mrs E was dying on 8 July, when the Trust identified this. She sadly died later that day.
80. Due to the lack of documentation we are unsure if Mrs E’s pain management needed to be escalated to the medical team or palliative care team in line with its internal policy. We are unsure what support the palliative care team would have offered over and above its input earlier that day.
81. In summary, our decision is the Trust acted in line with local policy for the palliative care team to assess Mrs E late that morning and schedule her in for a review the next day. That is in line with the local policy’s requirement for a review every 24 hours. The nursing or medical teams caring for Mrs E did not contact the palliative care team to review her the afternoon she died. But we do not have any evidence to suggest she required more inperson palliative care support, so we will not uphold this complaint.
Toilet support
82. Miss A complains the Trust should have supported Mrs E to use the toilet in a comfortable way. She says Mrs E was crying in pain trying to move to use the toilet and the Trust should not have made her move while she was dying.
83. NMC standards say nurses should ‘use evidence based, best practice approaches for meeting needs for care and support with bladder and bowel health, accurately assessing the person’s capacity for independence and self-care and initiating appropriate interventions’.
84. NMC standards also say nurses should ‘observe and assess level of urinary and bowel continence to determine the need for support and intervention assisting with toileting, maintaining dignity and privacy and managing the use of appropriate aids’.
85. The clinical records show Mrs E needed minimal assistance with hygiene when she was admitted. It assessed her mobility every few days and repeatedly documented she was mobile with the aid of her stick. It documented this again the morning of 8 July 2023.
86. From the clinical records we can see Miss E could communicate her needs throughout her admission. On 8 July 2023 the Trust documented her mobility as ‘poor’. It therefore recommended a standing aid be used.
87. The Trust said that as part of its complaints process it interviewed the nurses involved. They said they used their judgement and decided asking her to use pads in her bed would not be good for her. They judged she could come out to the commode with the assistance of a walking aid.
88. Due to the lack of nursing documentation we do not know at what time this was or at what level her pain was during this time. We therefore only have the Trust’s account after the fact that the nursing judgment was appropriate, and Miss A’s account that Mrs E was in too much pain. Unfortunately, we consider there is currently not enough evidence to say there is a failing here. We cannot say, even on the balance of probabilities, whether the Trust should have done something different to meet Mrs E’s toilet needs.
Our recommendations
89. In considering our recommendations, we have referred to our ‘Principles for Remedy’. These state that where poor service or maladministration has led to injustice or hardship, the organisation responsible should take steps to put things right.
90. We consider the Trust should apologise to Miss A specifically for its poor documentation, poor management of Mrs E’s pain and the impact this has had on them. We can see it has already apologised for the pain Mrs E experienced we consider it needs to provide a more specific apology.
91. Our principles say that public organisations should look for continuous improvement and should use the lessons learnt from complains to make sure they do not repeat maladministration or poor service. The Trust has agreed with our decision. It has explained to us that, through patient feedback, it has now identified it has an issue with poor symptom control of pain. It has set up a pain management group aiming to improve the quality of care patients across the Trust receive. Its objectives are to improve pain assessment and implementation care plans, to make sure pain remains on the agenda across induction and mandatory training, support specialist pain team with resources and supporting work force with regular education training, support disadvantaged groups across Croydon, and recruit service users to feed into this.
92. We consider this is a positive first step towards the Trust making sure these issues with pain management do not happen again. We still recommend the Trust produce a SMART (specific, measurable, achievable, relevant, and time bound) action plan for the actions it will take to improve both its pain management and documentation. We also consider the Trust still needs to apologise to Miss A.
93. Our principles state that public organisations should put things right and, if possible, return the person affected to the position they would have been in if the poor service had not occurred. If that is not possible, they should compensate them appropriately.
94. To decide on a level of financial remedy, we review similar cases where the person has experienced similar injustice, along with our severity of injustice scale. Following this review, in a provisional version of this report we considered the Trust should pay Miss A £750. This is for Miss A witnessing her mother in more pain than she should have been in, compounded by the Trust’s poor record keeping meaning she will not know for sure whether there was anything the Trust could have done to make her more comfortable as she was dying. Miss A told us she did not want to accept that payment. We therefore have not recommended the Trust pay this to Miss A, in line with her wishes.
95. Finally, we are grateful to Miss A for bringing her complaint to our attention. The loss of her mother was understandably a very difficult time for her. Talking to us about the pain her mother experienced cannot have been easy, and we hope our report helps to provide some closure for her.