Disclosure of diagnosis
19. Miss S complains there was a lack of transparency surrounding her mother’s diagnosis. She says that despite there being concerning features on the initial CT, the Trust did not give the cancer diagnosis until 13 March. She questions why the Trust did not disclose the possibility of cancer sooner.
20. The Trust complaint response said a doctor discussed the scan results, and the possible diagnosis, directly with Mrs B on 4 March 2023. The Trust acknowledged this may have been a difficult conversation without her family present
21. The Trust also explained it was the clinical practice and preference of the consultant to not give a patient or their family a diagnosis of cancer until it has been histologically confirmed. The second response explained:
‘[the consultant] considers this may cause unnecessary distress whilst awaiting confirmation of results. Whilst some patients wish to know and understand all of the available information about their care, for others this can be overwhelming and difficult to accept at an already distressing time. Clinicians are expected to use their clinical judgement to assess this for each individual patient and communicate accordingly after their assessment has been made. We wish to assure you that further discussions are always held if required and should further explanation or information be requested.’
22. We looked at the medical records for any evidence a doctor had told Mrs B about her possible diagnosis on 4 March. We did not see any record of this. The medic notes from this date shows no evidence this happened.
23. The nursing notes on 5 March say: ‘SPR [specialist registrar] said he made pt [patient] aware of scan findings yesterday but as this was an unwitnessed conversation – therefore unsure as to how much pt is aware of regarding scan results’.
24. The only evidence in the records to suggest Mrs B was informed of the scan results was this note from a nurse saying they had been told this verbally. We do not accept that as persuasive evidence, on its own, that the Trust informed Mrs B.
25. There is nothing to show Mrs B knew about the results of the scan and the possible diagnosis. Her family were fully involved and supportive and it is likely she would have communicated this information to her family if she had known.
26. On the balance of probabilities we find the Trust did not communicate the information Mrs B needed on 4 March. This was a failing and was not in line with the GMC’s guidance ‘decision making and consent’, which says:
‘You must give patients the information they want or need to make a decision. This will usually include: • diagnosis and prognosis • uncertainties about the diagnosis or prognosis, including options for further investigation. […] • options for treating or managing the condition, including the option to take no action • the nature of each option, what would be involved, and the desired outcome • the potential benefits, risks of harm, uncertainties about and likelihood of success for each option, including the option to take no action.’
27. Even if the Trust did communicate the information in the way outlined in paragraph 20, we find that would have been a failing also. Our physician adviser told us if the Trust had communicated the information in this way, it would have been poor practice to not offer Mrs B the option of having a family member present when giving such important information. The approach would not have been in line with the guidance in paragraph 26, which also says:
‘Patients need relevant information to be shared in a way they can understand and retain, so they can use it to make a decision. To help patients understand and retain relevant information you should: • share it in a place and at a time when they are most likely to understand and retain it • anticipate whether they are likely to find any of it distressing and, if so, be considerate when sharing it.’
28. The first clear record the Trust discussed the possible diagnoses with Mrs B was on 13 March. The Trust knew there was a significant abnormality on the CT scan on 2 March and carried out further procedures including gastroscopy, flexible sigmoidoscopy and CT guided biopsy to clarify the location of the primary cancer. There were numerous opportunities to share information with Mrs B.
29. We consider the Trust’s explanation in paragraph 21, and the reasons for not sharing the diagnosis sooner, to be a failing, and not in line with the guidance already quoted.
30. GMC guidance Good Medical Practice also says ‘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.’ The actions of the Trust were not in line with this guidance.
31. Our physician adviser explained it is not appropriate, except in very special circumstances when information may lead to significant harm, to withhold information. The explanation suggested by the Trust, that it could be done to prevent ‘unnecessary distress’, is not in line with the decision making and consent guidance which says:
‘You should not rely on assumptions about: • the information a patient might want or need • the factors a patient might consider significant • the importance a patient might attach to different outcomes.’
32. The Trust has not recognised this failing to keep Mrs B and her family informed of the likely diagnoses and prognosis. It was evident from the first scan that she had cancer of some sort. Whilst the full prognosis could not be given to her without the biopsy results, it was outside the guidance to not give her the information the Trust already had.
33. Miss S told us not knowing what was wrong had a profound impact on the family. She said her mother couldn’t understand her deterioration and the family were deeply distressed to see her suffering and not understand the reasons for this. She said they feel let down by the fact the Trust knew what was happening but the family didn’t. She said they had all assumed it was something minor that Mrs B would recover from. We have made recommendations to remedy the impact on Miss S from paragraph 59 onwards.
Nutrition and hydration
34. Miss S told us the Trust did not make sure Mrs B had sufficient fluids and nutrition. She explained her mother had two weeks of very poor oral intake and sickness before the Trust eventually put in an NG tube (a flexible tube inserted through the nose into the stomach, used to provide nutrition directly to the stomach when a person can't eat). Miss S said the Trust staff did not monitor Mrs B properly and didn’t fill in food charts as they should have done.
35. She said it was very upsetting for the family to see her mother being neglected. She said the Trust had not recognised it could have been their actions that led to her mother’s deterioration, and she questioned whether her mother could have had a longer life.
36. The Trust complaint response said the Trust had carried out an assessment when Mrs B was admitted on 2 March, which ‘meant she would not have triggered as a risk patient initially.’ It gave an account of the actions the Trust had taken, including referrals to the Nutrition and Dietetics team and filling in food charts.
37. The triage in the emergency department (ED) when Mrs B was admitted showed she had a loss of appetite, had lost eight to nine pounds in a couple of weeks, and her weight on admission was 63.4kg. This shows she had lost between 5-10% of her weight.
38. The Trust carried out an assessment on 2 March, as outlined in paragraph 36, using the Malnutrition Universal Screening Tool (MUST). This marked Mrs B as being low risk and so not in need of intervention. This was incorrect as Mrs B had lost between 5-10% weight in a very short period and was not eating. According to the criteria outlined in MUST she should have been scored as being high risk.
39. Our nursing adviser said if the assessment had been completed accurately Mrs B would have been assessed as being at high risk of malnutrition. She would have been referred to a dietitian at this stage and it is likely food supplements would have been started from admission. The Trust should have followed MUST guidance and kept food charts.
40. We found failings in this MUST assessment which was not in line with MUST guidance as outlined above. The failure to act on the information available from the ED triage was also not in line with the NMC Code which says ‘complete all records accurately and without any falsification, taking immediate and appropriate action if you become aware that someone has not kept to these requirements’ and not in line with the Standards of proficiency for registered nurses, which says ‘demonstrate the ability to keep complete, clear, accurate and timely records’.
41. Mrs B was referred to the Nutrition and Dietetics team on 4 March, who declined the referral. It stated it would only accept high priority patients. Our nursing adviser said this was a reasonable conclusion for the team to reach, because the referral did not have enough information for the team to make an accurate assessment of Mrs B’s needs, which were high priority. This was another missed opportunity, caused by the inaccurate MUST assessment, for Mrs B to be seen by a dietitian sooner.
42. The Trust did begin food charts from 4 March, but these were poorly completed with little detail of what was offered or eaten. Mrs B reported swallowing difficulties to nursing staff on 6 March. On 7 March Mrs B reported she felt like she was choking. Our adviser said she should have been referred to the Speech and Language Therapy Team (SALT – a team that specialises in assessing and treating patients with swallowing difficulties) from 6 March when she reported these difficulties.
43. We found it was a failing that the Trust did not make this referral. It was not in line with what is required by the Code, which says:
• make a timely referral to another practitioner when any action, care or treatment is required • ask for help from a suitably qualified and experienced professional to carry out any action or procedure that is beyond the limits of your competence
44. SALT eventually assessed Mrs B on 10 March, after the consultant made an urgent referral. The Trust put in the NG tube that day and after some initial problems with the tube being dislodged, the Trust began NG feeding on 12 March.
45. It likely Mrs B would have been received dietary support from admission if the MUST assessment had been done correctly. She would have received artificial feeding support sooner if she had been referred to SALT when she reported swallowing difficulties. It is not clear if this overall delay of 10 days would have affected her symptoms or helped her to feel more comfortable.
46. We carefully considered the impact of this failing on Mrs B, and whether the impact was as Miss S feared, a poorer outcome for her mother. We asked our nursing and physician advisers about this and they both agreed we could not reach this conclusion.
47. Our advisers explained Mrs B was seriously ill because of her underlying illness, and the delay in arranging nutritional support did not affect or speed her outcome. Sadly Mrs B already had a terminal prognosis, and given how unwell she was, it is unlikely that this would have made a difference.
48. Our physician adviser told us about the evidence in the ESPEN practical guideline: Clinical Nutrition in cancer, that says artificial feeding does not improve the quality of life or overall survival of advanced cancer patients at the end of their life.
49. We recognise the impact on Miss S of what happened. She has been left with concerns about whether things could have been different, and with the memory of seeing her mother’s needs not being met. The Trust has not recognised or acknowledged the failings and so we cannot be assured such failings might not occur again. We have made recommendations in relation to this from paragraph 59 onwards.
End of life care
50. Miss S told us her mother’s end of life care wasn’t as it should have been, and the overall planning and communication wasn’t in line with what was needed. She says the first they knew about their mother being at the end of her life was when they saw a bluebell sign on her door on 21 March (the Trust uses a bluebell logo on the door of patients who are near the end of their life). She said Mrs B had a particular issue with secretions and this was not addressed. We were sorry to hear how upsetting these last days were.
51. The Trust made a referral to the palliative team, who met with the family on 17 March. This was because Mrs B’s condition was deteriorating. The Trust completed a Respect form with Mrs B on 18 March because of her rapid decline. The Respect process involves discussions between the patient and their healthcare team to create a personalised plan of the types of care and treatment the person would or would not want in an emergency.
52. The Trust put plans in place to help Mrs B be comfortable as she requested. Our nursing adviser explained Mrs B was not at end of life and so was not given end of life care. The records show the Trust was still planning active care if Mrs B became well enough.
53. The Trust started end of life care on 20 March, as Mrs B had deteriorated over the weekend. A doctor completed a Care in the Last Days of Life plan and the records show they discussed this with the family on 20 March at 2pm. By this stage, Mrs B couldn’t eat or drink, was very unwell and was requesting no further intervention.
54. We accept Miss S disputes the discussion took place as outlined above. We cannot resolve the difference between her account, and what was written in the notes that were made at the time. We found the communication was in line with the Code which says ‘share with people, their families and their carers, as far as the law allows, the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand’.
55. We know how upsetting it was for the family to see the impact secretions had on Mrs B in her last days. The palliative review on 17 March observed Mrs B was experiencing secretions. The nurse specialist noted the saline nebuliser had helped with secretions and recommended these be used, and we can see this happened.
56. The records show Mrs B was complaining of secretions and ‘feeling in back of throat’ on 20 March and it was noted this could be because of the NG tube. When Mrs B was noted to be ‘struggling with secretions’ on 21 March the Trust gave medication to help with this and carried out suctioning.
57. Our nursing adviser explained when people are at the end of their life it is common for their breathing to become irregular for hours or even days. Breathing can become louder as the patient is no longer able to swallow or clear away secretions in the throat. These secretions gather in the throat, and this can cause distress for families. Trusts often give medication to dry the secretions which can help to reduce the sound, but may not completely eradicate it. This is what the Trust did with the medication and suctioning on 21 March.
58. We consider the care and treatment given to Mrs B at the end of her life was in line with guidance and we did not see any failings. We are sorry to know that Miss S has been left with such upsetting memories, and that she did not experience the support she needed.