Communication about chemotherapy
20. Mr P says Mrs P was only provided with one round of chemotherapy before this was stopped, with no explanations provided about why it was stopped. He says they were not aware that this treatment was not curative and was for palliative symptom relief only.
21. Mrs P saw a consultant oncologist on 8 May 2024. The consultant wrote to Mrs P’s GP to explain she had stage 4 cholangiocarcinoma, an incurable cancer of the bile ducts which had spread to the liver at that point.
22. At this appointment Mrs P agreed to treatment with chemotherapy. Chemotherapy is treatment for cancer which is given in ‘cycles’, with a set number of days during a period of time in which the treatment is given. Mrs P’s chemotherapy plan was given in a treatment cycle of 21 days.
23. From what we could see in Mrs P’s healthcare records, the first cycle of chemotherapy was started on 4 June. Mrs P attended the Trust for further chemotherapy sessions on 11 June, 5 July and 12 July.
24. Mr P says they were told at the start of August that chemotherapy would be stopped. On 2 August, Mrs P attended the Trust for a chemotherapy session. A note on 7 August states that ‘day 8’ of that cycle (due that day) was to be omitted ‘as per email’.
25. Mrs P’s next session of chemotherapy was provided on 30 August. From what we could see, this was the last session of chemotherapy provided to her.
26. No explanations were written with the healthcare records to explain why the chemotherapy session for 7 August was to be omitted, or why no further sessions were arranged after 30 August. We asked the Trust if it could locate the email referred to in the chemotherapy notes, but it was unable to provide this to us.
27. Considering what Mr P told us, it is likely that Mr and Mrs P were told that the session due on 7 August would not go ahead, but the reasons for this were not explained to them. We could also not see any communication with Mr and Mrs P in relation to why part of the cycle in August was omitted or why no further chemotherapy treatment was arranged after 30 August.
28. The Trust told us that the oncologist who saw Mrs P on 25 September informed her that chemotherapy would provide no further benefit, in view of her liver failure at that point. Mr P’s point is that the explanations about omitting and stopping chemotherapy sessions should have been explained to them earlier to help them understand Mrs P’s health status at the time.
29. We ask the Trust to consider any learning it can take in relation to communication about chemotherapy options and changes to treatment with patients, and discuss this with Mr P when it meets with him.
Appointments
30. Mr P says Mrs P only had one face to face appointment with her consultant on 8 May, and following this only had two telephone appointments with him in June. Her next appointment, with a different consultant, was not until 25 September.
31. GMC’s good practice in managing medicines guidance says doctors must consider whether the method they meet patients, whether face to face, or remotely through telephone consultations, meets the patient’s needs and supports safe care. It sets out circumstances where a face to face meeting may be more appropriate, including any need to physically examine the patient or concerns of the patient’s capacity to understand or make decisions about treatment.
32. The GMC provides further guidance, on its ethical hub page, on when remote consultations, such as telephone appointments, may be appropriate. These may include where the treatment options or clinical needs are straightforward and do not require examination, the patient has capacity to understand and make decisions about their treatment, and all the information the patient needs or wants can be provided by telephone.
33. Our adviser says it is common and appropriate practice for oncologists to have telephone appointments with patients who are undergoing chemotherapy. They say the purpose of those appointments is to assess the tolerance and toxicity of the chemotherapy (that is, how the patient is coping with the treatment and any side effects they are experiencing from it). Updated guidance from the Systemic Anti-Cancer Therapy Board, put in place after these events, encourages telephone reviews to check patients are fit to continue receiving chemotherapy.
34. Our adviser says face to face rather than telephone appointments would not have changed the treatment, unless the patient was deteriorating, when the treatment would need to be reviewed. Mrs P had telephone appointments with the consultant on 12 and 18 June. On both occasions, it was recorded that she stated she was well in herself. There is no evidence in what was recorded that Mrs P’s condition was deteriorating at that time.
35. The Trust acknowledged in its response to Mr P’s complaint that telephone appointments had not enabled the consultant to see how Mrs P’s health had deteriorated. It acknowledged that with hindsight, face to face appointments would have enabled them to make decisions based on her visible deterioration in health.
36. Mr P says that appointments with the consultant were then cancelled in August and September with no explanations provided to them. He says Mrs P’s skin tone went yellow and her health deteriorated during this time. Mr P says he contacted the Trust for over three days begging for an appointment before one was arranged for 25 September.
37. We can see from the records that appointments with the consultant, arranged for 15 August, 17 September and 19 September were cancelled, with no explanations recorded.
38. Our adviser explains that patients undergoing chemotherapy are recommended to have a medical review before each chemotherapy session. In Mrs P’s case, she should have been reviewed by a doctor every three weeks while receiving chemotherapy treatment.
39. We could see no documented medical review of Mrs P between 18 June 2024 (when she was last reviewed by the consultant) until 25 September. Mrs P had continued to attend the Trust for chemotherapy sessions on 5 and 12 July, and 2 August. The three month gap between medical reviews is not in line with standard good practice in place at the time for reviews of patients undergoing chemotherapy.
40. SACT guidance, which was not in place at the time of events but which is based on what was considered good clinical practice at time of events, sets out that clinicians should review patients for their fitness to receive chemotherapy, and review patients regularly.
41. The appointments which were cancelled should have been rearranged for as close as possible to the cancelled dates. This did not happen and there are no explanations in Mrs P’s records to explain why.
42. Our adviser says with worsening disease, chemotherapy would have been stopped. They say it is not likely that the cancelled appointments or the decision to stop chemotherapy in August affected Mrs P’s disease progress or changed how much time she had left.
43. If the cancelled appointments had been appropriately rearranged for as soon as possible, this would have provided the Trust the opportunity to tell Mr and Mrs P earlier that Mrs P did not have much time left. We recognise this would still have been a shock to Mr and Mrs P, but it would have given them more time to prepare for Mrs P’s death and to plan for the time she had left.
Failure to inform Mrs P earlier how serious her cancer was 44. Mr P says he and Mrs P were not aware of how aggressive the cancer was, until she was informed on 25 September that she was dying. He says his wife’s death two days later was a huge shock to him and his family.
45. Cancer is defined in four number stages, according to how large the cancer is, and this determines the treatment options available as well as the patient’s chances of surviving the cancer. These stages are:
• Stage 1 – the cancer is small and contained within the organ it started in • Stage 2 – the cancer is larger than stage 1 but has not started to spread • Stage 3 – the cancer is larger and may have started to spread • Stage 4 – the cancer has spread from where it started to another organ in the body, such as the liver or lung.
46. Mrs P first saw her oncology consultant 8 May. The consultant then wrote to Mrs P’s GP. They said they had explained to Mrs P that her cancer was not curable, and treatment would be palliative only, to control symptoms, delay disease progress, and, when a patient responds to treatment, to improve their prognosis and survival.
47. Our adviser explains Mrs P had cholangiocarcinoma, a cancer that starts in the bile ducts. Bile ducts are small tubes that carry bile between the gallbladder, the liver and the small intestines. At the time the cancer was diagnosed, it was Stage 4 and had already spread to Mrs P’s liver. This means that at the time the cancer was diagnosed, it was at an advanced stage and there was no cure for it. Any treatment offered would be only to help with symptom relief and make Mrs P more comfortable.
48. GMC’s Good Medical Practice, paragraph 28, says doctors must share information with patients in a way they can understand. This includes information about:
• their condition, likely progression, and any uncertainties about diagnosis and prognosis • the options for treating or managing the condition, including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option.
49. Mr P says the consultant did not make it clear to him and Mrs P at that appointment that her cancer was not curable, and that the chemotherapy would be palliative only, for symptom relief. He says at Mrs P’s appointment in May, they were advised of the treatment options and chemotherapy was agreed and arranged to start the next month.
50. Mr P says it was not until they attended the appointment on 25 September that they became aware the cancer was terminal and that Mrs P only had a few days left to live. He says it was a huge shock to him and the family when Mrs P died only two days later, and they did not have time to prepare for this.
51. Mr P says if they had been made aware at the outset that Mrs P’s cancer was not curable, they would have had more time to prepare themselves for Mrs P’s death and make plans for the time she had left.
52. Looking only at the consultant’s letter to Mrs P’s GP, it appears the consultant took actions in line with GMC’s Good Medical Practice. However, Mr P says he and Mrs P did not understand, at the time the cancer was diagnosed, that it was incurable. This information should have been explained to them at the first appointment in a way they could understand. On balance, we think it likely information about the disease prognosis and severity was not explained appropriately to Mr and Mrs P in a way that they could understand and process it.
53. We ask the Trust to acknowledge this with Mr P when they meet with him, and to discuss with him the learning they can take from this.
Actions agreed
54. Mr P says they did not know how severe Mrs P’s cancer was, until they were told on 25 September that she was in the last days of her life. He says they were unaware that the chemotherapy provided was not curative and was for palliative treatment only.
55. The Trust acknowledged Mr P’s concerns that communication was poor, that telephone only appointments after the initial appointment had not enabled the consultant to see how Mrs P’s health had deteriorated, and acknowledged how the cancelled appointments in August and September affected Mrs P’s mental wellbeing.
56. In our view, there are indications of failings in communication from the Trust in relation to Mrs P’s cancer being incurable, the reasons chemotherapy was stopped, and the failure to provide appointments at appropriate times. We have not seen evidence this affected the progress of Mrs P’s disease. However, we think the Trust could have been clearer with Mr and Mrs P about her prognosis and given them the news that she was dying earlier. This would not, sadly, have changed the outcome, but it would have given Mr and Mrs P, and their family, time to process this news and her death would not have been such a shock.
57. We can agree a resolution with an organisation if we can achieve a satisfactory result for the complainant with minimal intervention. We concluded a detailed investigation would not be necessary if the Trust agreed to a resolution at this stage. We also considered we would likely reach the same outcome at the end of an investigation, but this would be a longer process.
58. The Ombudsman’s NHS complaint standards encourage organisations to promote a learning culture and to see complaints as an opportunity to develop and improve its services and people. This means that it is not enough for an organisation to simply acknowledge there were failings in its services – it must also consider how it can learn from those failings and improve its services to prevent those failings happening again. They also incorporate the Ombudsman’s Principles for Remedy which say where poor service has led to a negative impact on someone, the organisation should take steps to offer a remedy to put things right. A remedy does not necessarily mean financial payment, and can be other things such as acknowledgement, apology, and service improvements.
59. Mr P says the reason he brought his complaint to us is that, while the Trust had acknowledged failings in relation to Mrs P’s care, it had not told him about any learning it had taken from his complaint. He is keen to see the Trust put in place service improvements so that other cancer patients and their families do not have the same poor experience as he and his wife had. He also says he is seeking a financial payment in recognition of the distress caused to him because of the Trust’s mistakes.
60. The Trust agreed to arrange a further meeting with Mr P to discuss his complaint further and any learning it has taken, or could take, to improve its services to patients with cancer and their families. Mr P agreed to this action.
61. We reviewed ‘Our guidance on financial remedy’ which we use to decide on an appropriate amount of payment organisations should make. We considered the impact of the indicated failings on Mr P. We think the indicated failings led to a loss of opportunity for the family to prepare properly for distressing news, and exacerbated Mr P’s bereavement when his wife died. We consider the impact of the failings found would meet ‘Level 3’ of our Severity of Injustice Scale. We looked at what we might likely recommend if we carried out a detailed investigation of Mr P’s complaint. We did this by taking into account what we had previously recommended when we upheld investigations into similar complaints to Mr P’s, and what our Severity of Injustice Scale outlines. We considered we would be likely to recommend the Trust make a payment of £600 in recognition of the distress caused to Mr P by the indicated failings if we were to carry out a detailed investigation.
62. We explained to the Trust that if we could not reach a resolution of Mr P’s complaint at this stage, we would need to conduct a detailed investigation into Mr P’s complaint and make formal recommendations for remedy. We asked the Trust if it would agree to make a payment of £600 to Mr P as part of a resolution, and it has agreed to do this.
63. Mr P confirms a further meeting with the Trust and the suggested financial payment will resolve his complaint. We will therefore take no further action on his complaint.
64. We acknowledge Mr P has been through a very difficult experience with his wife’s illness, and that failings acknowledged by the Trust caused additional distress to him during this time. We hope that the resolution we have agreed with the Trust provides Mr P with the reassurance and closure that he seeks.