4. Mrs X complains about the Trust. She says it incorrectly led Mr X to believe he would get treatment for his cancer between 1 and 30 January 2020, giving him false hope.
5. As a result of the experience, Mrs X says she has had to deal with the grief of Mr X’s death. She is devastated with how the Trust’s actions affected Mr X both physically and mentally.
6. As an outcome of her complaint, Mrs X would like an apology, financial compensation, and service improvements.
7. Mr X had a gastric fundic variceal bleed in 2009. This is a bleed in the vein lining the stomach and it can be life threatening. Mrs X said he had been in and out of hospital since this.
8. During the period in question, the records state he was morbidly obese (very overweight), had cirrhosis, and fatty liver disease (FLD). Cirrhosis is a late-stage scarring of the liver caused by liver diseases. FLD is a condition caused by high levels of fat in the liver, and it usually has no symptoms. It is caused by obesity, diabetes, high blood pressure, and high cholesterol.
9. On 21 October 2019 a hospital who is not part of the Trust did a CT scan and noticed Mr X had a suspicious liver lesion, an abnormal growth on the liver. A CT scan creates a picture of inside the body. The lesion suggested hepatocellular carcinoma (HCC). HCC is the most common type of primary liver cancer. The hospital referred Mr X to the Trust on 8 November 2019.
10. A multidisciplinary team (MDT) at the Trust took charge of Mr X’s care and met many times. An MDT is a team of different health specialists who work together to meet the needs of a patient. They discussed his care on 21 November 2019. The Trust said this was the earliest opportunity, as the referring hospital did not provide Mr X’s first CT scan images until 19 November. The Trust said his CT scans showed a suspicious 37mm liver lesion.
11. The hospital gave the Trust another CT scan of Mr X’s liver on 3 December. The Trust discussed this on 5 December. It noted the lesion had grown to 56mm, which it said suggested the HCC had entered his blood. After this meeting, its plan was to see Mr X again in the clinic.
12. On 9 December, Mr X attended a clinic appointment with a consultant hepatologist and gastroenterologist. A hepatologist diagnoses, treats, and manages problems linked with the liver, gallbladder, bile ducts, and pancreas. A gastroenterologist manages and treats disorders of the stomach and intestines. They told Mr X of his HCC diagnosis and discussed potential treatment options with him. They decided he should have an MRI scan to find out whether his lesion had gone into the blood vessels. An MRI scan is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.
13. After the clinic appointment, the Trust completed liver function blood tests to check the state of Mr X’s liver. These tests give information about the state of the liver. The Trust then arranged an urgent MRI liver scan for him on 21 December.
14. The MDT discussed the results of the MRI scan on 2 January 2020. The MDT confirmed the tumour had increased in size again to 90mm and gone into the hepatic vein. The hepatic vein returns low-oxygen blood from the liver back to the heart.
15. On 20 January, Mr X had another CT scan and blood tests at the Trust. The tests and scan showed a further increase in size of the lesion, and it had gone into the hepatic and portal vein. The portal vein carries blood from the gastrointestinal tract to the liver. Ascites (a build-up of fluid) was also seen on the scan.
16. Mrs X says during this appointment, the Trust suggested there were still treatment options available for Mr X.
17. The Trust’s records state it explained to Mrs and Mr X his liver function tests were unchanged, and due to the ascites, this meant he could not have chemotherapy. Chemotherapy is a cancer treatment where medicine is used to kill cancer cells. It stops cancer cells reproducing, which prevents them from growing and spreading in the body.
18. Mr and Mrs X met the locum hepatologist again in the clinic on 3 February. Mrs X asked whether the cancerous lesion was present on Mr X’s ultrasound scan from mid-2019 and missed. Unfortunately, the Trust explained the locum hepatologist did not have access to this scan but suggested the lesion may not have been seen at that point, given its very aggressive nature.
19. Mrs and Mr X met with the Trust’s specialist nurse who made an urgent referral to the local palliative (end of life) care team. Mrs X asked if she could bring Mr X’s next appointment forward from 20 April. However, he sadly died at the end of February.
23. Mrs X said the Trust let her and her family down. She said Mr X was convinced right up to the last few days of his life that he was coming home. They were planning a family holiday and what he wanted to do around the home. She said it was very difficult to stay upbeat and strong for him.
24. Mrs X and her family are still dealing with the impact of losing Mr X.
25. The Trust said it had to complete more tests in January, as it wanted to monitor Mr X’s liver condition to understand his liver function. In its clinical opinion, while he had advanced liver cancer, it felt he was between the advanced cancer stage (having potential palliative treatment options) and the terminal cancer stage (no treatment options). It said the liver cancer had been diagnosed during an investigation of cellulitis during November 2019. Cellulitis is a skin infection caused by bacteria and is a separate health condition to liver cancer. While it is separate, the Trust said any infection often will cause a deterioration in liver function, which may or may not last for a long time.
26. It apologised it did not give this information in a clear and precise way to Mr and Mrs X, and it did not manage their expectations better. However, it feels it was correct to complete the second batch of tests in January.
27. The ESMO guidance says the Barcelona Clinic Liver Cancer (BCLC) system identifies if an HCC patient would benefit from surgery that would remove the cancerous tissue or systemic treatment, and this is based on the studies of the patient’s liver. The guidance says patients with stage D liver cancer should get the best supportive end of life care, including management of pain, nutrition, and psychological support.
28. According to Cancer Research’s webpage on the BCLC staging system, stage C means the cancer has spread, but the liver is working well. However, stage D means the patient has severe liver damage.
29. It also says a Child-Pugh blood test score of B8 means a patient has moderate damage to their liver. The Child-Pugh scoring system is part of the BCLC staging system. It looks at five things, which tell a clinician if a patient’s liver is working:
• bilirubin levels in the blood (yellowish substance which forms after red blood cells break down) • albumin levels in the blood (albumin is a protein made by the liver) • how quickly the blood clots (prothrombin time) • if there is fluid in the abdomen (ascites) • if the liver disease is affecting brain function (encephalopathy).
This guidance means, if Mr X was at stage D and had a score of B8, then sadly he would be approaching the end of his life and would need palliative care. Liver treatment to lengthen his life would not be an option, as his liver would not be able to survive it.
31. It appears the Trust may not have complied with the GMC guidance, 'Good Medical Practice’. It says doctors should quickly give or arrange suitable advice, investigations, or treatment where necessary.
32. This means the Trust should tell Mr X quickly that it cannot treat his liver cancer.
33. As we can see from the background section, a hospital referred Mr X to the Trust on 8 November 2019.
34. On 9 December 2019, the Trust discussed treatment options with Mr and Mrs X for his cancer, and explained it needed to complete investigations. It did not yet know Mr X’s BCLC stage. It took a sample of Mr X’s blood for a blood test and he had an MRI scan on 21 December.
35. The Trust completed blood tests during December 2019 and January 2020.
36. The Trust assessed Mr X as being at BCLC stage C on 3 January 2020, but it made this decision without all his blood test results. However, our adviser explained Mr X was at stage D on 2 January, rather than stage C. This is because Mr X had a Child-Pugh score of B8 at the time.
38. The Trust completed more investigations between 2 and 20 January. The plan was to assess and recheck Mr X’s blood. It identified from these investigations that his HCC had worsened, and he had advanced to BCLC stage D.
39. On 20 January, the Trust explained to Mr and Mrs X that his tumour had increased in size, and they were not able to treat it at that stage.
40. On 3 February the Trust told Mr X it was not possible to treat him, and palliative care was the next step. Mrs X said the clinician treating Mr X was unsure how much time Mr X had left, saying he could have anywhere between three to 12 months left to live.
42. It does not seem from the records the Trust knew on either 13 November or 9 December 2019 that Mr X’s cancer was going to grow so rapidly and be so aggressive. This is because it was an abnormal cancer that, according to both the Trust and our adviser, was aggressive and spread quickly.
We can see our adviser and the Trust both felt Mr X was at a different BCLC stage on 2 January. Regardless of what stage he was at, the Trust was also factoring in how Mr X’s cellulitis infection was affecting his health and whether this was affecting the cancer test results.
44. A patient’s health path is not always straightforward. While there were signs on 2 January that Mr X’s health had deteriorated past the point where he could get treatment, there was a small possibility his health could have improved. Our adviser agrees with the Trust’s decision to complete a second round of tests, as the cellulitis could have been affecting Mr X’s health and results. Our adviser said it was unlikely the new test results would have shown an improvement. It was in Mr X’s best interests for the Trust not to start palliative care treatment too soon, if there was an opportunity to lengthen his life or reverse his poor health.
45. The ESMO guidance says it is important for clinicians to find ways to treat patients with liver cancer, and that lifestyle changes can improve a patient’s chances in liver function and prognosis. This supports the Trust’s plan as there was a possibility Mr X’s health could have changed between 2 and 20 January.
46. In line with the GMC guidance above, the Trust did not delay in completing the second tests in January to share its prognosis on 20 January and 3 February.
47. We can appreciate how, on hindsight, it would have seemed the Trust wasted time in sharing the prognosis with Mr X, and this is devastating for his family. It would also have been frustrating for Mr and Mrs X that the Trust discussed the possibility of treatment on 20 January, only for it to change its mind two weeks later.
48. The Trust correctly told Mr X he was not suitable for treatment on 3 February, and there was no scope to rule out treatment sooner. From what we have seen it was trying to find a window of opportunity to treat Mr X. It did not want to start end of life care until it was left with no other choice. We would not consider this a failing based on the relevant standards we have looked at above.
48. Overall, the Trust’s actions were in line with guidance, and we are not upholding this complaint. We understand this was a very distressing time for Mr X and his family, and we do not wish to add to this.
1. The view set out in this report is our final decision.
2. We have decided to not uphold this complaint. This is because we have not found failings in the way King’s College Hospital NHS Foundation Trust (the Trust) managed Mr and Mrs X’s expectations during January 2020.
3. We will explain our decision in more detail below.