Identifying bone metastases
20. Mrs K was concerned that the Trust should have carried out more tests and therefore identified that cancer had spread to her husband’s bones sooner than it did, and perhaps before he was admitted to hospital.
21. The Trust said that in January, when the hepatology clinic identified that Mr K’s liver lesion appeared to be liver cancer, it appeared to be slow growing. At that time it had not changed dramatically for three years. Mr K’s consultant called him to tell him and discuss his options. The consultant told him that unfortunately, no curative treatment would be possible because he was already too unwell to tolerate it. They also discussed slowing the growth of the cancer via chemoembolization (where chemotherapy is injected directly into the liver). At that time, and taking into account the apparent slow growth of the cancer, they said the risks of this treatment would be outweighed by the potential benefits. The consultant agreed a watch and wait approach with Mr K.
22. Our oncologist adviser explained that oncologists usually use the Barcelona Liver Clinic Cancer (BLCC) algorithm to help them decide how best to manage a patient’s liver cancer. They said chemoembolization is an appropriate treatment under the BLCC algorithm. In this treatment chemotherapy is injected directly into the liver via a catheter which passes through the blood vessels from the groin. They agreed that Mr K’s other health problems meant that he would be unlikely to tolerate this treatment, and therefore a watch and wait approach was appropriate.
23. Over the next few weeks Mr K attended regular physiotherapy appointments under the Trust. They noted a reduction in his physical function which appeared to be related to a reduction in his iron levels, caused by a long standing condition being managed by his GP. They also contacted his GP to help Mr K expedite his next blood test and possible iron infusion.
24. The Trust explained that Mr K was next reviewed by the hepatology clinic in March, less than a week before his admission. During this phone call it was established that there were no changes in relation to his liver, however he was struggling with low energy, so a plan was made to check his bloods. It appears this plan became redundant because Mr K became more unwell and was admitted to hospital.
25. General Medical Council guidance Good Medical Practice (GMP) paragraph 15 says that doctors ‘must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: adequately assess the patient’s conditions, taking account of their history… promptly provide or arrange suitable advice, investigations or treatment where necessary’.
26. Mr K told his consultant he was experiencing low energy in March. Our oncologist adviser explained that, in line with GMP, the consultant took a history and arranged investigations. In this case, blood tests were an appropriate way to find if there was something readily treatable, such as anaemia or a deterioration in liver or kidney function.
27. We do not think that anything went wrong with Mr K’s care before his admission.
28. When Mr K was admitted, Trust staff initially focused on treating the infection he appeared to have. The Trust acknowledged that it could have requested a scan sooner when Mr K had not improved with antibiotic treatment. Doctors requested chest and abdominal x-rays which showed nothing additional of concern.
29. Our physician adviser said that once Mr K was in hospital, the initial priority was treating his pneumonia. They said this was appropriate as his principal problems at that time related to this. The day after admission the records show that the plan was to consider an MRI if there was ongoing weakness of the left leg as Mr K had had hip pain for the last few days. On day four of his stay an MRI scan of his spine was ordered, although the rationale was not recorded on that day. Our adviser noted that he had mild weakness of his right leg, no stool incontinence and long-standing urinary incontinence. This suggested that his spinal cord was intact, but also that he might have discitis (an infection of the intervertebral discs in the spine) as well as probable pneumonia.
30. As there was no concern about his spinal cord, our adviser said the MRI was less urgent, but nonetheless it had been booked for that day. However, staff rearranged it to avoid taking Mr K to the outdoor scanner in the cold. Due to subsequent developments, an MRI scan was never carried out.
31. Our adviser additionally noted that they would expect the speed of Mr K’s recovery from the chest infection to be limited, given that that he was already frail due to his other health problems. The CT scan of his thorax, abdomen and pelvis (CT TAP) was ordered on day seven, as doctors considered whether there had been any progression of his probable cancer. It was carried out the same day. Mr K also had a CT scan of his head due to his confusion, which showed nothing the doctors were concerned about.
32. Given what clinicians knew at the time, our adviser said that the investigations they ordered were appropriate and they saw no indication the MRI or CT TAP should have been ordered sooner; the priority was treating his pneumonia. We think this means the doctors who looked after Mr K in hospital acted in line with GMP, and therefore there are no fallings in this aspect of Mr K’s care.
33. Mr K already knew he had probable liver cancer and that, for him, it would not be curable. Sadly, Mr K became unwell much more quickly than his clinicians and his family expected. This naturally caused the whole family a great deal of distress, and Mrs K is understandably concerned that an opportunity to know he had cancer in his bones was missed. With hindsight, there would have been a benefit to the Trust carrying out the CT TAP earlier in his admission, but this does not mean the doctors were wrong to wait until they did.
Pain management
34. Mrs K told us and the Trust that her husband was frequently in too much pain during his admission, and this could have been managed better by staff at the Trust. She said that she often had to tell staff when her husband needed pain relief. She said that she worried about what was happening when she was not there to advocate for her husband’s needs. She said he was too unwell to advocate for himself and often agitated and confused, which she considers is a sign that he was in significant pain.
35. The Trust said that Mr K was prescribed paracetamol ‘as required’ when he arrived at hospital and throughout his stay. On day 10, the palliative care team became involved in his care and made recommendations for stronger pain relief. This was implemented and slowly increased. The Trust said there were references in the notes to Mr K’s pain being managed during ‘comfort rounds’, however there was a theme throughout his admission of a lack of effective pain assessment being carried out. It also acknowledged that the clinical records showed Mrs K had raised concerns about her husband’s pain, and these concerns were not followed up to the level it expected.
36. The Trust’s guideline ‘Basic principles of analgesic administration for acute pain’ (Pain Guideline) set out what staff should do and consider when a patient is in pain.
37. Section 1 of the Pain Guideline deals with patient assessment and tells staff to ‘assess pain using a validated pain assessment tool (see Pain Management Intranet page for examples). Ideally, obtain the patient’s score of their pain severity. The Pain Score should be documented in flowsheets, pain assessment tab’.
38. Section 2 of the Pain Guideline goes on to set out that paracetamol should be prescribed regularly. Clinicians can also consider non-steroidal anti-inflammatory drugs, if appropriate, and for ‘severe acute’ pain they should consider opioids (a strong class of pain killer).
39. Nursing and Midwifery Council guidance, ‘Standards of proficient for registered nurses’ (the Nursing Standards), Annex B: Nursing procedures 3.8 says nurses should take appropriate action to reduce of minimise pain or discomfort.
40. Taking account of these guidelines, we consider that staff should have been doing two things: assessing Mr K’s pain and the effectiveness of the pain relief given – in this case using the pain scoring tool – and giving him appropriate pain medication in response to that.
41. No pain scores were completed in Mr K’s charts until the day before he died, by which time Mrs K was satisfied that his pain was being addressed. However, the nursing charts do consistently record that Mr K’s pain has been managed during rounds. Both our physician adviser and our nurse adviser noted this when they considered Mr K’s records.
42. Until the last day staff were only doing one of the two things they were supposed to do, as they were not assessing and recording Mr K’s pain scores. We think this is a failing.
43. We considered whether we could go on to say this meant Mr K did not receive enough pain relief.
44. Our physician adviser noted it would be easier to judge if appropriate pain relief had been given if pain scores had been recorded in Mr K’s record. Recording this, they said, would also have enabled the staff caring for Mr K to monitor the effectiveness of the painkillers which were given to him.
45. On his admission, doctors prescribed paracetamol for Mr K on an ‘as required’ basis. The drug charts show that paracetamol tablets or intravenous paracetamol were frequently given. Staff noted an existing prescription for codeine, although did not prescribe or give this to Mr K. Mrs K told us his GP prescribed this before he went to hospital because of he was experiencing increased pain.
46. We can see regular and increasing concerns about Mr K being confused in the records, so it is natural that Mrs K felt she needed to advocate for her husband at times. As the person who knew her husband best, she would likely recognise when he was in more pain or was otherwise not himself. Staff do not record conversations with patients and their families word-for-word and are not expected to. We would only expect to see more significant conversations in Mr K’s records, and it is not always clear whether in the information noted by staff was reported by Mr K or his family.
47. On his arrival at the ED doctors took his medical history from Mrs K. She reported he was suffering body aches and non-specific abdominal pain. The initial treatment plan recorded that Mr K had been experiencing hip pain for the last few days.
48. Late on the first evening a nurse recorded that they would discuss pain relief with the doctors, which suggests that either Mr or Mrs K mentioned that he was in pain. A few hours later the same nurse recorded that Mr K was very sensitive to touch, which Mrs K said had been getting worse lately. Intravenous (directly into the vein) paracetamol was given and by the morning the nurse recorded Mr K had no pain.
49. On day 10 the doctor prescribed a stronger, opioid based, painkiller, in response to Mrs K’s request. This appears to be an appropriate escalation in treatment in line with the Pain Guideline. Soon after doctors prescribed a syringe driver. This is used to give a patient a continuous dose of strong pain killer and is the strongest form of pain management available.
50. Although they acknowledged they were limited by the lack of pain scores, our physician adviser said that where pain was reported it appeared to have been treated with the appropriate pain killers in line with the Pain Guideline. They additionally said that as Mr K’s pain intensified it appeared to have been treated with stronger pain killers. Similarly, our nursing adviser said that nursing staff appeared to have managed Mr K’s pain in line with the Nursing Standards.
51. Balanced against this we have Mrs K’s recollection that she frequently had to advocate for pain relief and her concern that it was often insufficient. She said her husband was very agitated and she attributed this to him being in pain. Mr K’s records show Mrs K was frequently present when staff were caring for Mr K, and often spoke to them on his behalf. However, she does not believe staff always recorded concerns when they said they would.
52. On day three, a healthcare assistant recorded that Mr K’s wife or daughter should be present when having discussions with him, as he could be confused at times. We think this shows how important it was to take account of Mrs K’s views, if he could not always convey how he felt. We think this means there is some doubt about whether Mr K could independently tell staff if his pain relief was adequate without a more rigorous enquiry or without help from Mrs K.
53. We do not think we have enough information in the records to accurately judge the impact of the pain relief Mr K did receive. On day one there is an explicit reference to him having no pain after he had been put on IV paracetamol to manage his pain. Other than this pain is recorded as ‘managed’, or occasionally as no complaints of pain. Until day 10 staff ‘managed’ appears to mean staff gave Mr K paracetamol, which Mrs K felt was not enough. After this he was rapidly moved onto the strongest pain relief, which only happened after staff were aware that cancer had spread to his bones.
54. We know Mr K needed the strongest pain relief by day 11, only two days after he was just receiving paracetamol. We think it is difficult to say exactly when and how quickly his pain escalated because staff did not assess the effectiveness of the paracetamol via pain scores. This means we cannot say, one way or the other, whether the pain relief he received was enough. This uncertainty is, in itself, an injustice to Mrs K and her family, and is unlikely to reassure her about her husband’s last days. We recognise she has good reasons for suspecting the pain relief staff gave to her husband should have been stronger, even if we have not been able to reach a decision about this on balance.
55. On the day before his death, a doctor recorded a long conversation with Mrs K during which she mentioned her concerns about his pain and agitation. We can see that this was a big concern to her at a time when she would have been coming to terms with the likelihood that her husband would soon die. It remained her first concern when she complained to the Trust two month after he died, at a time when she would have been grieving. Mrs K told us that her memories of her husband’s final days are constantly with her and push away her happy memories.
56. While we think that this period of time would likely have been difficult even in the most ideal circumstances, we think it natural for Mrs K to be distressed at the thought of what her husband may have unnecessarily endured.
57. Our NHS Complaints Standards (Our Standards) say that when organisations have got things wrong, they should offer fair remedies to put things right.
58. The Trust apologised because, it said, ‘the level of care [Mr K] received fell short of our expected level on this occasion’. It also said that feedback had been provided to staff on the ward teams about appropriate documentation and assessment of pain.
59. We do not think this goes far enough to put this right for Mrs K and we have recommended the Trust take further action detailed in paragraphs 88 and 91.
Delay in updating family about bone metastases
60. On day seven - a Friday - a radiologist identified that Mr K likely had bone metastases (cancer which had spread to his bones) after he had a CT scan. This news was not shared with Mr K and his family until after the weekend, three days later, although results were available from around 7pm on the Friday.
61. Mrs K said that if they had learned sooner, she would have been more prepared when Mr K died two days later, and it would have allowed family to visit in his final days. It may even have been possible for Mr K to die at home.
62. The Trust said that on the Friday, the results were not available when doctors finished their shifts, so they should have told the doctors on the next shift to chase them up – this did not appear to happen. By the Monday the doctors assumed the scan results had already been discussed with Mr K and his family. It said this led to the news being delivered more bluntly by the doctor than they would usually have done. It said it had reminded the ward team of the importance of handing over incomplete tasks, including chasing outstanding scan reports, and it would include this in the ward’s junior doctor induction.
63. Good Medical Practice (GMP) 44,‘Continuity and coordination of care’, tells doctors that: ‘You must contribute to the safe transfer of patients between healthcare providers and between health and social care providers. This means you must: ashare all relevant information with colleagues involved in your patients’ care within and outside the team, including when you hand over care as you go off duty, and when you delegate care or refer patients to other health or social care providers’.
64. In line with GMP the doctors should have included in their handover that Mr K had had a scan, and they were waiting for the results.
65. We think that when Mr K’s doctors went home on Friday, they did not let the incoming doctors know that the scan results needed to be chased up and reviewed.
66. GMP 15b ‘Apply knowledge and experience to practice’, tells doctors they must ‘promptly provide or arrange suitable advice, investigation or treatment where necessary’. GMP 32 ‘Communicate effectively’ tells them they must ‘give patients the information they want or need to know in a way that the can understand’. So, we think we can say that doctors should have told Mr K the result in a timely manner – however what this means could be different in different situations. We considered what timely meant for Mr K’s scan results.
67. Our physician adviser explained that when the results were available, they should have been discussed with Mr K and his family, assuming the clinical team were confident enough to predict what it meant for him. They said that it would need a senior member of clinical staff with knowledge of Mr K’s background to do this. To present the results to the family without this knowledge would risk staff being unable to answer questions about what this meant for Mr K and his prognosis.
68. So, it might have been appropriate to wait for Mr K’s usual doctors to tell him and his family the results of the CT scan after the weekend. However, the Trust itself said that the weekend staff should have given Mr and Mrs K the results sooner, and perhaps on the Saturday. On balance, we think that the results were not given to Mr K in a timely manner and therefore this is a failing.
69. In January, Mr and Mrs K had already learned that he likely had liver cancer, and his consultant had told him that his existing health problems meant he would not be able to have curative treatment. At that time the cancer appeared to be slow growing, and he agreed a ‘watch and wait’ approach with his consultant. There did not appear to be any urgency at that time for Mr K and his family to think about his end-of-life care.
70. The course of Mr K’s illness was not changed by the results and Mrs K does not think the outcome would have been any different. However, she considers that the family would have been better able to prepare for what was coming and the rest of the family could have made different decisions about visiting. We think this, along with the concerns about Mr K’s pain relief, would have added to the bereavement Mrs K experienced.
71. Our adviser also explained that the presence bone metastases on a scan do not necessarily mean that a patient will soon die soon. The records suggested to our adviser that Trust doctors likely did not think this was the case until after Mr K began to deteriorate on the Sunday. Even if family had received the results on Saturday, they may not have known any sooner how imminent his death would be. Nonetheless, they would have known more about his prognosis and could have been somewhat better prepared.
72. The Trust has already apologised for the delay in telling Mr K and his family about the result. It has also taken action to improve its service in this area, by reminding staff of the importance of following up on results and including this in the ward induction it delivers.
73. We thought about whether the Trust had gone far enough to put this right in line with our Standards.
74. We were pleased to see that the Trust has already apologised for what happened and taken steps to improve its service in this area. However, we do not think this goes far enough to put things right for Mrs K and we have recommended the Trust take further action detailed in paragraphs 88 and 91.
Referral to SALT
75. Mrs K said that she repeatedly raised concerns about her husband’s ability to swallow and the Trust did not act on these as soon as it should have. She said she and her daughter frequently watched him choke on food and pills and raised their concerns with staff. She told us that on the first morning in hospital, while still in the ED, staff did not allow him to have breakfast as he had choked on a biscuit. She also an ED doctor told her it was likely her husband had aspiration pneumonia (pneumonia caused by inhaling food or liquid into the lungs). She recalls the doctor said this was probably due to him choking on food.
76. The Trust said that it had reviewed Mr K’s clinical record and there was no concern about his swallow when he was admitted. It said it was not until the evening of 27 March – day three - when a nurse recorded that he had been coughing when swallowing food. It said a SALT referral was completed immediately. The next day a SALT assessment was completed with the result that a modified diet was recommended to help him eat. It added that SALT would not normally comment on medication unless medication had been highlighted as a concern in the referral. However, it did apologise that this was not considered and used the complaint to give feedback to its nursing staff that a medication review should be considered when a diet is modified.
77. The Trust’s Dysphagia guideline says that patient-facing clinical staff should raise any aspiration or choking concerns to the SLT [SALT] team.
78. Our physician adviser said that it appeared the first reference to Mr K having difficulty with his swallow was on day three and he was appropriately referred to SALT soon after. This record shows Mrs K reported that her husband was coughing and choking on food, and she said it had been happening for some time. A member of staff from SALT carried out an assessment the next day and recommended pureed foods and normal fluids.
79. We have also reviewed the clinical record. The day after Mr K was admitted (a Saturday), a member of staff completed an ‘activities of daily living screening’, likely with Mrs K’s help. In this screening they recorded that Mr K needed help with feeding. They also recorded that there was both currently and usually a concern with his ability to swallow. This suggests that staff could have referred Mr K to SALT two days earlier than they did. It also supports Mrs K’s assertion that she raised concerns to staff some time before it acted on them.
80. The Trust told us that day three was the first instance of a witnessed swallowing difficulty, and therefore this was the appropriate time to make the referral. We appreciate there is an element of discretion in the decision to make a referral to SALT. Nonetheless, we think the concerns raised by Mrs K in addition to Mr K’s working diagnosis of aspiration pneumonia meant that aspiration or choking concerns were present on the Saturday. In line with the Dysphagia guideline a referral should have been completed when concerns were present. We therefore think this delay is a failing.
81. The Trust also explained the SALT service was not open on a weekend. Therefore, it said, SALT could not have seen Mr K much earlier than it did. He went to the ED on a Friday and staff completed the screening which noted the swallowing concerns on the Saturday. Even if staff had sent the referral as soon as the screening was completed, a speech and language therapist would not have seen Mr K before Monday, which was one day earlier than he was seen.
82. While there does not appear to have been a persistent clinical impact caused by Mr K coughing and choking on food while in hospital, it would likely have made it more difficult for him to eat or to enjoy eating for those first few days in hospital. Mrs K would, understandably, be distressed to see him choking and coughing and this may well have been partly avoided had the referral been made sooner. This was an injustice to her.
83. The Trust did not uphold this part of the complaint. We have made some recommendations in paragraphs 88 and 91 to put this right for Mrs K.