Communication
19. Mrs A says the Trust’s communication with her family was inadequate, especially from Mrs B’s consultant, Mr C, who told them on 7 June 2022 that Mrs B did not have cancer when she did. The family were not kept updated by the Trust regarding Mrs B’s condition, her care plan, and complications she suffered such as melena, haematemesis and pancreatitis. The Trust’s complaint response acknowledges that some communication between its staff and Mrs B’s family was not always adequate.
20. GMC guidance on communicating with patients and their families’ states in paragraphs 28(a) and 37:
‘The exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about:
their condition(s), likely progression, and any uncertainties about diagnosis and prognosis
and
You must be considerate and compassionate to those close to a patient and be sensitive and responsive in giving them support and information. You must follow our more detailed guidance on Confidentiality: good practice in handling patient information.’
21. Having considered the relevant records, there is evidence that Mr C had a telephone conversation with Mrs B on 7 June 2022. We were not party to this conversation or subsequent conversations with the family, so we cannot fully verify what was said. Nevertheless, we acknowledge Mrs A’s recollections that communication about Mrs B’s care was inadequate (especially from Mr C), and the family were not kept properly updated.
22. There is a handwritten annotation of the telephone consultation on 7 June 2022 in Mrs B’s records. It states: ‘? Gallbladder cancer,? Cholecystitis.’ A letter from Mr C to Mrs B’s GP dated 14 June 2022 states: ‘A CT scan has demonstrated an issue with her gallbladder that there is severe inflammation causing an obstructive jaundice. We discussed this in our MDT on 30th May and the CT scan is equivocal for either a gallbladder cancer or severe inflammatory process. It is hard to delineate them at the moment. At the moment the priorities to perform an ERCP and treat Mrs B’s jaundice.’ The letter refers to their previous telephone conversation (on 7 June 2022).
23. Our oncologist adviser says that at the time of the telephone call and subsequent letter, Mrs B’s cancer diagnosis had not been confirmed. It should be noted that a very severely inflamed gallbladder can be similar in appearances to cancer and is often a cause of diagnostic uncertainty.
24. There is no evidence in the records that Mr C specifically told Mrs B or her family on 7 June 2022 that Mrs B did not have cancer. As we have said, the records at the time indicate that her cancer had not been confirmed. Therefore, our oncologist adviser says good medical practice would have been to share the uncertainty of the diagnosis with Mrs B and her family, if appropriate.
25. Based on the available evidence, we consider on the balance of probabilities that Mr C expressed uncertainty about Mrs B’s diagnosis when he spoke to her on 7 June 2022, rather than confirming than Mrs B did not have cancer. We say this because the records indicate that Mrs B’s diagnosis was not confirmed at the time. As such, there was no clinical basis for Mr C to say categorically that Mrs B did not have cancer as this could not be confirmed without further investigations including biopsy. This is in accordance with the GMC guidance on communicating with patients.
26. There are several entries in Mrs B’s records (22 May, 12, 20, 21 and 30 June 2022) documenting discussions about her care with members of the family including her husband, daughter, and son-in-law. Mr C and his colleague met with the family on 21 June 2022 and the complaint response indicates that all questions were addressed to the family’s satisfaction. According to the records, these documented conversations and the meeting discussed imaging reports, biopsies, Mrs B’s diagnosis and her care plan including palliative care, so there is evidence of appropriate updates being provided during this episode of care. The Trust’s priority would have been to communicate with Mrs B directly as she was the patient and there is no indication that there were any concerns about her capacity to understand what she was being told. In such circumstances, there is no requirement for the Trust to communicate with family members although the records indicate it was content to do this in accordance with the GMC guidance and Mrs B’s consent.
27. The Trust has acknowledged in its complaint response that it failed to communicate when Mrs B had a change of symptoms and there was some inconsistent communication regarding Mrs B’s blood test results. It also highlighted some concerns about communication from nurses with consultants when a request has been made by a family to speak with a consultant through a nurse. However, the Trust has not acknowledged any specific failings in terms of updating Mrs B’s family about complications she suffered such as melena, haematemesis and pancreatitis.
28. An entry from Mrs B’s records on 12 June 2022 states: ‘no haematemesis, no melena, no abdo pain’ which can be a symptom of pancreatitis. This indicates that these issues may have discussed with Mrs B at the time. When Mrs A raised these communication concerns with the Trust as part of her complaint, it said that any melena was not a complication of the ERCP procedure but most likely because of Mrs B’s advancing cancer. As for communicating a diagnosis of pancreatitis, the Trust said the rise in Mrs B’s serum amylase level (an enzyme made by the pancreas that helps your body break down carbohydrates) was common after a drainage procedure and usually self-resolving. It would usually only be discussed if it were clinically relevant.
29. We consider these replies indicate the Trust’s view that Mrs B’s melena, haematemesis and pancreatitis were incidental clinical findings in the background to her suspected cancer diagnosis. While these symptoms may have been discussed with her on 12 June 2022, we consider it was not entirely necessary to discuss them with Mrs B or her family. The Trust’s focus was on establishing Mrs B’s overall diagnosis which, unfortunately, was subsequently established as an aggressive form of cancer. We are satisfied that Mrs B was aware of this possibility from the Trust’s communication with her and so were her family. This is in accordance with the GMC communication guidance. While the Trust has acknowledged some failings in its communication, these are about other issues that we are not considering as part of this complaint.
Nurse care
30. Mrs A says there was a lack of duty of care from nurses looking after Mrs B. There was a lack of nutritional input when she was in Glenfield Hospital and no dietician referral. Also, Mrs A says Mrs B’s IV lines were not managed appropriately by nurses.
31. Our nurse adviser says the relevant NICE guidance for nurses to adhere to is as follows: 1.2.1 ‘Screening for malnutrition and the risk of malnutrition should be carried out by healthcare professionals with appropriate skills and training. 1.2.2 All hospital inpatients on admission and all outpatients at their first clinic appointment should be screened. Screening should be repeated weekly for inpatients and when there is clinical concern for outpatients.’
32. The relevant NMC guidance for nurses to adhere to is as follows: 1.1 treat people with kindness, respect, and compassion. 1.2 make sure you deliver the fundamentals of care effectively. 13.1 accurately identify, observe, and assess signs of normal or worsening physical and mental health in the person receiving care. 13.2 make a timely referral to another practitioner when any action, care or treatment is required.
33. After Mrs B was admitted to hospital on 20 May 2022, our nurse adviser says she was appropriately screened for her risk of malnutrition in accordance with the relevant NICE and NMC guidance. This was by way of a MUST score. Mrs B’s score was 0, therefore her risk was deemed as low, so a referral to a dietician was not justified at the outset.
34. Initially, our nurse adviser says Mrs B’s fluid balance was managed appropriately but, on 23 May 2022, it is noted that she was taking less fluid. The records indicate that Mrs B had 900ml on this day which is a low intake. This reduced to 750ml on 24 May 2022, and it is noted that Mrs B had no recorded urine output on either of these days. Our nurse adviser says this should have raised concerns with the nurses about Mrs B’s low fluid intake. These concerns should have been escalated to a doctor or a dietician, but there is no evidence this happened. Also, there is no evidence of any food charts in the records for Mrs B at this time, but this may be because she was initially deemed as low risk for malnutrition from the MUST screen, so food charts were not required.
35. During Mrs B’s second hospital admission from 8 June to 4 July 2022, our nurse adviser says the records indicate she had reduced oral input with nutrition and fluid, but there was inconsistent use of intravenous (IV) fluids by nurses. The records indicate Mrs B was sometimes given a couple of hundred mls of fluids and sometimes higher amounts, but our nurse adviser says she should have been on a higher maintenance dose of IV fluids consistently due to her reduced input in accordance with the NICE and NMC guidance.
36. Mrs B’s frailty score during her May 2022 admission was 2 which indicates she was generally well with no active disease symptoms, but less fit than category 1. By Mrs B’s June 2022 hospital admission, her frailty score had increased to 4 which indicates she was now ‘vulnerable’. Our nurse adviser says that Mrs B’s fluid input is not well monitored or fully documented in her records at this time. For example, there is no explanation in the records as to why Mrs B was sometimes only having reduced amounts of fluids such as 200ml doses which is a very small amount.
37. As for Mrs B’s IV lines not being managed appropriately by nurses, the Trust acknowledged in its complaint response that Mrs B went up to 9 hours (on more than one occasion) without IV fluids, but it is not entirely clear why this happened. Our nurse adviser says we have no way of being sure if Mrs B’s IV lines were managed appropriately due to a lack of information in the records.
38. Nevertheless, we have already said that nurses failed to identify and escalate when Mrs B’s fluid input was reduced and there was inconsistent use of IV fluids in terms of the amounts given to Mrs B and a lack of documented explanation for this. Our nurse adviser concurs that 9 hours without IV fluids on more than one occasion are significant periods for Mrs B. She should have been given maintenance fluids on a more consistent basis. In other words, additional IV fluids to replace the ongoing daily losses of water and electrolytes which occur through processes such as urination and sweating. Our oncologist adviser says that an increase in Mrs B’s IV fluids would not have changed the sad outcome for her due to the serious conditions she was suffering with, but we are concerned about the lengthy and unexplained periods that Mrs B went without IV fluids.
39. Overall, we consider these are failings by the Trust due to a lack of escalation by nurses when Mrs B’s fluid input was reduced during her first admission, and the inconsistent use of IV fluids for Mrs B by nurses during her second admission contrary to the NICE and NMC guidance. This causes Mrs A some worry and uncertainty about Mrs B’s care which is emotionally distressing for her. We have made recommendations to the Trust about this.
40. As regards Mrs B having a dietician referral, we note this was planned by the Trust, but not until September 2022, by which time Mrs B had sadly died. The Trust acknowledged in its complaint response that, in hindsight, an earlier referral to the dietician should have been made. We have already documented above that Mrs B had noted difficulties with eating and drinking when she was in hospital. Due to Mrs B’s reduced fluid and nutritional input, our nurse adviser says nurses should have identified this and raised concerns about her with doctors with a view to further action such as a prompter dietician referral.
41. Our nurse adviser says the relevant NICE guidance for nurses to adhere to is as follows:
1.3.1 Nutrition support should be considered in people who are malnourished, as defined by any of the following:
• a BMI of less than 18.5 kg/m2 • unintentional weight loss greater than 10% within the last 3 to 6 months • a BMI of less than 20 kg/m2 and unintentional weight loss greater than 5% within the last 3 to 6 months.
1.3.2 Nutrition support should be considered in people at risk of malnutrition who, as defined by any of the following:
• have eaten little or nothing for more than 5 days and/or are likely to eat little or nothing for the next 5 days or longer • have a poor absorptive capacity, and/or have high nutrient losses and/or have increased nutritional needs from causes such as catabolism.
1.3.3 Healthcare professionals should consider using oral, enteral, or parenteral nutrition support, alone or in combination, for people who are either malnourished or at risk of malnutrition, as defined in recommendations 1.3.1 and 1.3.2. Potential swallowing problems should be taken into account.
42. As we have said however, Mrs B’s initial MUST screen showed her to be at low risk of malnutrition, there was no evidence of weight loss, swallowing problems, or any concerns about her Body Mass Index (BMI). Therefore, our nurse adviser says Mrs B did not meet the criteria in the NICE guidance for nurses to escalate her when she first went to hospital on 20 May 2022.
43. However, by the time of her June 2022 admission, Mrs B’s oral input (fluid and nutrition) had reduced, and her frailty had increased. As such, there was an opportunity at this point to expediate Mrs B’s dietician referral, so she did not have to wait until September 2022 to be seen, but this did not happen. The Trust has acknowledged that this should have happened sooner.
44. We consider this is a failing by the Trust due to delays in Mrs B seeing a dietician when this could have been expediated due to her reduced oral input and increased frailty. We appreciate this may cause Mrs A some anger and frustration about this aspect of Mrs B’s care, but we note the Trust apologised for the delay and feedback has been provided to doctors and nurses to ensure more timely referrals to dieticians are made. As such, there is no further action for us to take on this point.
45. Furthermore, our oncologist adviser says Mrs B deteriorated rapidly at end of life due to obstructive jaundice and accompanying sepsis due to cholangitis. After she developed sepsis, this resulted in acute renal failure. This would not have been avoided even if she had a prompter dietician referral. There is no evidence of any significant negative impact on Mrs B’s condition due to delays with her dietician referral. As the Trust has apologised and taken appropriate remedial action, there is nothing further for us to consider.
Discharge and complaint response
46. Mrs A says Mrs B should not have been discharged from hospital on 24 May 2022 as she had not received any treatment for her cancer. The Trust said that Mrs B was discharged with appropriate referrals and advice, that if she experienced worsening symptoms, she should seek immediate medical attention. Also, Mrs A says both discharge summaries from 24 May and 4 July 2022 and the complaint responses are full of errors as regards Mrs B’s medication, how she was given fluids and medication, referral to the Speech and Language Team (SALT), and which surgical procedures she underwent.
47. We note that the first discharge summary states that Mrs B was sent home with 28 days of Delteparin. The second discharge summary states Mrs B had a peripherally inserted central catheter (PICC) line inserted. The Trust’s complaint response acknowledges that both these statements are incorrect. The second discharge summary also states that Mrs B had a SALT referral, but Mrs A says no referral came through. Mrs A also says that some of Mrs B's surgical procedures are not documented on the discharge summaries such as the gastric outlet obstruction bypass surgery that she had.
48. From 20 to 24 May 2022, our oncologist adviser says there was uncertainty about whether Mrs B’s diagnosis was related cholecystitis or cancer. She had presented with right upper quadrant pain and jaundice. An ultrasound scan on 21 May 2022 reported a large irregular heterogenous area within the right lobe of the liver with areas of hypoechoic signal and posterior acoustic shadowing. Our oncologist adviser says this may represent either perforated cholecystitis or a liver lesion. Therefore, Mrs B could have been sent for a CT scan at this stage to provide some further insight. Otherwise, the ultrasound showed normal appearances.
49. Mrs B had a different CT scan on 21 May 2022 which noted: ‘Findings suggestive of gallbladder carcinoma. Given the lack of surrounding inflammatory reaction, acute cholecystitis/perforation is less likely. Please correlate this with the inflammatory markers.’
50. Our oncologist adviser says Mrs B’s case was then appropriately discussed at MDT on 30 May 2022 and a management plan was made. The MDT outcome states: ‘tumour markers are normal. CT scan equivocal for either cancer or severe inflammation. For ERCP, antibiotics and rescan in a month. If improved then probably cholecystitis, if not improve treat as cancer.’
51. In summary, our oncologist adviser says the investigations carried out by the Trust on Mrs B between 20 and 24 May 2022 were appropriate. Urgent treatment was not required at this time and Mrs B was deemed fit for discharge on 24 May 2022. As such, there was no reason for her to remain in hospital since further investigations and any treatment could be undertaken as an outpatient. There is no written guidance regarding whether treatment or management should be as an in or outpatient, but we consider that Mrs B’s discharge was clinically appropriate on 24 May 2022 for the reasons outlined above.
52. The Trust has already acknowledged in its complaint response that some information regarding take-home medication (Delteparin) and inserting a PICC line was inaccurate on Mrs B’s discharge summaries. As regards a SALT referral, the records we have seen indicate that this was requested but, unfortunately, it was not actioned until after Mrs B’s death. The Trust has provided assurances that all members of the medical team are responsible for discharge paperwork, and it should be checked to ensure accuracy. This also applies to pain killing medication such as Codeine and palliative care medication. It also apologised for any misunderstanding regarding the use of a PICC line for Mrs B. The Trust clarified that at no point was feeding through a line considered necessary.
53. While the discharge summaries do state some of the surgical procedures Mrs B had such as ERCP and Cholangiogram, we cannot see any reference to the gastric outlet bypass surgery that she had. It is also noted that other surgical procedures Mrs B had when she was in hospital including laparotomy and gastrojejunostomy are documented in the complaint response, but not on the discharge summaries.
54. Paragraph 17(2)(c) of the HSC regulations 2014 states: ‘maintain securely an accurate, complete and contemporaneous record in respect of each service user, including a record of the care and treatment provided to the service user and of decisions taken in relation to the care and treatment provided’.
55. We consider this is a failing by the Trust due to inaccuracies and omissions in Mrs B’s discharge summaries contrary to the HSC guidance. However, we consider the Trust has already taken appropriate remedial action by apologising for any misunderstanding and providing assurances about who is responsible for discharge paperwork. As such, there is no further action for us to take on this point.
56. We appreciate there are some inaccuracies and omissions in Mrs B’s discharge summaries, and some discrepancies in the content of the complaint responses. We recognise this causes Mrs A and her family doubt and uncertainty about elements of Mrs B’s care. Some of these issues are acknowledged and explained in the complaint response, some are typographical errors by the Trust about dates and family relationships, others are communication issues that we cannot verify or matters that are not part of the agreed scope of the investigation. Nevertheless, we have not seen evidence that any inaccuracies or omissions in relation to Mrs B’s medications, fluids, SALT referral and surgical procedures caused a significant negative impact on her care when she was in hospital.
Facial disfigurement
57. Mrs A says that Mrs B’s face became disfigured at some point from when she was in the mortuary until she arrived at the funeral directors. The Trust said in its complaint response that checks were carried out and no concerns were raised by its mortuary staff or the funeral directors at the time, but Mrs A says the funeral directors later told her that it was unadvisable to see Mrs B prior to her funeral due to a facial disfigurement. This was some 11 days after she died.
58. We recognise this is a sensitive and upsetting issue for Mrs A and her family as they wanted to see Mrs B before her funeral. Mrs A asked the funeral directors if there were any images of Mrs B’s facial disfigurement, but none were available. Therefore, it is more difficult for us to consider what happened to Mrs B and whether the Trust’s explanation is reasonable and in accordance with its own guidance for managing deceased patients.
59. Nevertheless, we have considered the Trust’s explanation alongside its own guidance with support from our oncologist adviser. We consider the concerns raised by the funeral directors about Mrs B’s facial disfigurement were likely to be due to the normal deterioration of a body after death, the rate of which can vary from person to person. Therefore, based on the limited available evidence, we consider the Trust’s explanation is reasonable in the circumstances.
Clinical summary
60. Mrs B had advanced gallbladder cancer which, sadly, our oncologist adviser says was inoperable and incurable. Mrs B had undergone a bypass procedure to relieve the cancer blocking her stomach, but she developed an infection in her biliary system resulting in renal failure, and rapid deterioration leading to her sad death. Our oncologist adviser says this is unfortunately a common cause of death for patients with advanced cancers of the biliary system and explains why patients like Mrs B can deteriorate very rapidly which is what happened in this case.