Conflicting information about diagnosis
15. Miss A says that Mrs B and her family were given conflicting information about Mrs B’s diagnosis by the Trust from 14 October 2023. They were initially told she had suffered a stroke, but then it was suggested she had a possible brain tumour. There was then a two-week delay until Mrs B’s true diagnosis of lung cancer was established.
16. Firstly, we have considered information in Mrs B’s records from before this episode of care. These are notes from her admission to the Hyperacute Stroke Unit (at another Trust that we are not investigating) on 10 October 2023.
17. Our adviser says the initial impression at this point was that Mrs B may have suffered a stroke. Her CT scan at the time was not entirely clear in its findings, but there was no suspicion of cancer. Therefore, an MRI scan was recommended as a next step to further explore her symptoms.
18. After Mrs B was repatriated to the Trust on 14 October 2023, further investigations (CT and MRI scans) were carried out during the initial period of her admission, due to the uncertainty around her diagnosis. Our adviser says that an initial CT scan was unclear as was an initial MRI scan. There was a request for an MRI with contrast as this would help show up brain tumours better. There were then some issues with further scan timings around dialysis sessions which our adviser says was unavoidable.
19. Our adviser says that Mrs B’s CT scan on 17 October 2023 was suspicious of lung cancer. This is documented in the records and therefore a referral to the lung Multi-Disciplinary Team (MDT) was made. The MRI with contrast was to be performed as with the spectre of cancer in the chest that would have raised the suspicion that what was going on in Mrs B’s brain could be cancer too.
20. The records do not reflect much, if any, documented discussion with Mrs B or her family about Mrs B’s diagnosis at this time while further tests were being carried out. Our adviser says due to the uncertainty about her diagnosis, it was not unreasonable by the Trust to wait for further scans before discussing the possibility of cancer with Mrs B and her family.
21. On 23 October 2023, the records indicate further uncertainty about the plan for Mrs B as it was noted that the neuro-oncology (i.e. brain cancer MDT) wanted to wait for the lung MDT first, which our adviser says was reasonable as their plan would affect the brain plan. This delay was actively acknowledged on the ward round on 24 October 2023 where it was noted that Mrs B and her family were not aware of the diagnosis as they were awaiting input from the MDT’s.
22. Our adviser says the decision-making process around whether to break bad news at what stage can be complicated. Often, patients and their families will be very keen to know what scans have found and ask questions, in which case it is reasonable to give them some information about what the different possibilities are, even though this may get confusing and introduce uncertainty. Equally, if a patient is not pressing to know, it is reasonable to wait, as was the case with Mrs B.
23. On 26 October 2023, the records indicate that a junior doctor spoke with Mrs B’s family, but felt unable to interpret/give results of her CT scan. The plan was for a senior colleague to review Mrs B and discuss with them the following day. On 27 October 2023, the records indicate that Mrs B’s daughter was upset after meeting a doctor. She did not want Mrs B to know her diagnosis.
24. The records reflect further meetings and discussion with the family on 30 and 31 October 2023 after MDT had confirmed Mrs B’s cancer diagnosis. There were concerns discussed about a delay in a final diagnosis being made and communicated to Mrs B. It is noted that it was felt Mrs B had sufficient mental capacity to ask for her diagnosis and the medical team could not keep it from her for any prolonged period. Nevertheless, they agreed to a short delay before telling Mrs B her diagnosis. It is also noted on 31 October 2023 that the renal nurse expressed concern that Mrs B’s diagnosis had not yet been confirmed to her.
25. On 1 November 2023, our adviser says there is an excellent note of a discussion with Mrs B’s family where it is clearly documented that she had been asking about her diagnosis and was assessed as having mental capacity to request this information. As such, the medical team had a duty to respect her wishes and give her the information about the cancer diagnosis. The Trust’s Medical Director had also been consulted, and they explained that the medical team had a duty to inform Mrs B about her diagnosis as she had capacity and wanted to know. As such, the relevant information was shared with Mrs B at this stage.
26. In summary, there was not a great deal of documented communication between the Trust and Mrs B/her family from 14 to 26 October 2023. We have explained the reasons for this above. Later in Mrs B’s admission, our adviser says that documentation of the relevant discussions was excellent. We have not seen any evidence that conflicting information was given by the Trust to Mrs B or her family regarding Mrs B’s diagnosis. As outlined above, we consider this was a situation whereby more information was obtained as time passed, and more investigations were carried out. This took time, but we consider it was a reasonable approach by the Trust in what were difficult circumstances.
Discussion on 1 November 2023
27. Miss A says a registrar demanded to tell Mrs B her diagnosis on 1 November 2023 when her family wanted more time to consider the situation.
28. We have already explained the events which led up to the registrar’s discussion with Mrs B about her diagnosis on 1 November 2023. We appreciate that Mrs B’s family did not want her to be told the bad news about her cancer, but the Trust had to decide about this (which it did) as there was limited time by this point to have discussions. Unfortunately, our adviser says it was anticipated that Mrs B would deteriorate relatively quickly (in part due to cessation of dialysis), so a lengthy period to prepare her for the news was not possible.
29. The GMC guidance on communication states:
‘You must give patients the information they want or need to know in a way they can understand.’
‘You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support.’
‘You must work in partnership with patients, sharing with them the information they will need to make decisions about their care, including their condition, its likely progression and the options for treatment, including associated risks and uncertainties.’
30. We recognise that Mrs B’s family are unhappy with how this conversation went. We were not present at the time, so we cannot verify exactly what was said and how it was put to Mrs B/her family by the registrar. What we can say from the records is that Mrs B wanted to know what was wrong with her and our adviser says she needed to know, as she had decisions to make about her care.
31. Our adviser says that while it is impossible to judge the sensitivity or compassion of the registrar from the documented records, the description of the conversation they provided and the standard of record keeping implies a good standard of communication. Therefore, as far as we can establish from the records, the conversation between the registrar and Mrs B/her family was managed appropriately and in accordance with the GMC guidance on communication.
End of life medication
32. Miss A says there was insufficient end of life medication available on the ward when Mrs B needed it before she sadly died on 2 November 2023. Therefore, we asked our adviser to review Mrs B’s records as regards her end-of-life medication.
33. Our adviser says that due to Mrs B’s renal function, she required alfentanil for relief of pain/shortness of breath. This is shorter acting and does not build up like other opiates (morphine-like medications) when the kidney function is very poor. It was noted there had been a delay in obtaining alfentanil from the pharmacy (it is not commonly used) and therefore the doctor prescribed some oxycodone (a more common medication stocked on the wards) whilst awaiting this.
34. The HIS and PANG guidance both indicate that oxycodone is a reasonable alternative pain killing medication to alfentanil, and both are used for pain relief at the end of life. Subcutaneous (under the skin) injections of oxycodone were prescribed for Mrs B from 31 October 2023 onwards with 1.25mg being given on 2 November 2023 at 6.59am and 3pm.
35. Overall, our adviser says it is difficult to make a judgement from the records as to whether sufficient pain relief medication was administered to Mrs B before she sadly died on 2 November 2023. This is in part because pain is a subjective concept and therefore affects everyone differently. What we can see from the records is that two reasonable doses of oxycodone were given to Mrs B on 2 November 2023 as documented above. Furthermore, there are entries in the records on 2 November at 6.35am and 12.29pm that indicate Mrs B’s level of pain at these times was not excessive. Therefore, we consider the pain relief provided to Mrs B at the end of her life by the Trust was reasonable and in accordance with the HIS and PANG guidance.
36. This concludes our investigation of the complaint. Please note there are legal restrictions on disclosing information that we give you. This means that you cannot share or make public any information or documents we gave you during our investigation. The legal restrictions do not apply to this final report.