Performance status and treatment decision-making 22. Mr R’s primary concern is with the MDT’s consideration of Ms A’s condition and abilities – her performance status – before reaching a decision about her treatment. In medicine, performance status is a way of trying to quantify a patient’s general wellbeing and their ability to perform daily living activities.
23. The World Health Organization supports a classification system, which categorises performance status as follows: 0 able to carry out all normal activity without restriction 1 restricted in strenuous activity but ambulatory and able to carry out light work 2 ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours 3 symptomatic and in a chair or in bed for greater than 50% of the day but not bedridden 4 completely disabled; cannot carry out any self-care; totally confined to bed or chair.
24. Mr R comes to us unclear whether Ms A’s performance status was inaccurately relayed by West Suffolk or inaccurately interpreted by Cambridge. In response to his complaint, West Suffolk told Mr R that Cambridge deemed Ms A to have a performance status of 4, stating this is not the information it relayed. In its response, Cambridge said it was the team at West Suffolk who felt Ms A’s performance status was 4.
25. We looked to the recorded evidence. An entry in West Suffolk’s records on 11 January notes a call between its clinician and Cambridge clinical nurse practitioners (CNPs). The entry says they discussed recent brain scan findings which questioned a new lesion (tumour or mass), noting the images had already been sent to Cambridge. It also says: ‘Discussed performance status – physically well, however, quite confused and has expressive dysphasia’.
26. The entry concludes with a note that CNPs recommended West Suffolk send a new neuro-oncology referral. West Suffolk had previously completed a referral on 5 January. As the brain scan had taken place after this referral was sent, and as Ms A had been a patient for a further six days of care, treatment and observation, Cambridge CNPs reasonably asked for updated information for its MDT to consider.
27. The neuro-oncology referral form asks for a performance status from the referring hospital. We can see in the 11 January referral form, West Suffolk kept the same written information as provided in the referral it sent on 5 January: ‘Fully active, able to carry on all pre-disease performance without restriction’.
28. However, it gave an updated performance status in the 11 January form, within a much more detail section outlining Ms A’s medical history. It says Ms A appears to have expressive dysphasia and a possible element of receptive dysphasia. It says whilst this appears to be improving day by day, Ms A’s neurological examination was poor, as she was unable to follow instructions well. This aligns with information noted from the earlier discussion between the West Suffolk clinician and Cambridge CNPs.
29. The record of the MDT discussion on 13 January notes there being no significant improvement in Ms A’s performance status, that she continues having expressive and receptive dysphasia and is limited to stage 2-3 commands (a medical classification used for assessment). The MDT discussion notes consideration of Ms A’s medication treatment to date and that the compounding factor for her is tumour infiltration and damage. The MDT notes no surgery will improve her performance status and says in view of the size, location and extent of her disease, the MDT recommends Ms A for best supportive care only.
30. Our adviser explains the responsibility is on the referring hospital to enter the performance status, as they are the ones who have seen the patient. We can see West Suffolk did provide performance status information to Cambridge in a narrative form, and that Cambridge considered the information it received. We do not see that either West Suffolk or Cambridge used a numerical score of 4 to describe Ms A’s performance status at this time.
31. Mr R met with the neurosurgeon on 13 January. We have reviewed the notes the neurosurgeon made at the time, including note of information provided by Mr R about Ms A’s abilities. We find this content aligns and presents a similar, consistent picture to the information previously provided and considered. The neurosurgeon’s notes also contain no reference to a performance status score.
32. The only time we find notation of a performance status score of 4 is in the clinic letter that followed this appointment. We do not find a clinical basis for this score. Considering all that is documented about Ms A’s abilities our adviser says this would equate to Ms A having a performance status score of 2.
33. We think this singular numerical entry within this clinic letter is the cause of the misunderstanding surrounding Ms A’s performance status score. In considering the neurosurgeon’s own notes, and even the content of the letter itself which reflects the same clinical picture of Ms A’s abilities as per all other documentation, we cannot account for why this number was typed, as it is unsupported by any other documentation.
34. We recognise this will be upsetting for Mr R to read, to learn this erroneous number within one letter has been the cause of such distress. We take this opportunity to highlight to Cambridge, the need to accurately relay information in clinic letters. Mr R’s primary concern is that a misrepresentation of Ms A’s condition and abilities led to an incorrect decision regarding her treatment. We hope to assure Mr R we do not find this was the case.
35. Records of Ms A’s condition and abilities at West Suffolk present a consistent picture, which we therefore consider reliable. We find this was the same picture shared by the West Suffolk clinician when discussing Ms A’s case with Cambridge CNPs on 11 January. We find the updated performance status information written by West Suffolk in its neuro-oncology referral form on the same date is consistent with this, and so presents an accurate reflection of what is documented of Ms A’s abilities.
36. We find the Cambridge neurosurgeon documented information he gained directly from Mr R, and this too aligned with previous inpatient entries about her abilities. We also find the Cambridge MDT notes document information on Ms A’s abilities in line with the information it received from West Suffolk.
37. We are therefore assured that the Cambridge MDT reached its decision based on an accurate account of information about Ms A’s condition and abilities, as provided by West Suffolk. We hope to assure Mr R we do not find evidence of failings in communication exchanges, nor do we find any erroneous consideration of a performance status score of 4 was involved in the decision-making process. Furthermore, we consider the decision reached was reasonable.
38. Our adviser explains if a patient has receptive dysphasia, is unable to fully understand information relayed to them, and unable to express their own fully informed views in deciding treatment, the MDT would not offer treatment. Our adviser says if a patient is unable to consent for treatment, whether this be for surgery or radiotherapy for example, again, the MDT would not offer treatment. They explain the MDT would instead offer best supportive treatment, which is the conclusion it reached in Ms A’s case.
39. Our adviser says considering Ms A was described as confused with expressive dysphasia, this meant she would not be considered fit to be offered treatment. Whilst there is no specific guidance that applies in this circumstance, it is our adviser’s clinical experience that neuro-oncology MDTs nationally would have recommended best supportive care for Ms A, based on the reliable and seemingly accurate information known and shared about her condition and abilities. Our adviser cites three published articles containing support for this, explaining that considering Ms A’s age, the status of her disease and her abilities, this sadly suggests very unfavourable prognostic factors.
40. We know how concerned Mr R is about the decision reached by the Cambridge MDT on 13 January, particularly considering the erroneous note of a performance status score of 4 in the clinic letter of that same date. We hope to assure Mr R we consider the decision was reasonable and reached without any evident failings in the communication exchanged between these Trusts.
Appointments on 13 and 14 January 41. Mr R is concerned that failings in communication exchanges meant Ms A was deemed unfit to attend her prearranged appointment with Cambridge on 13 January. He is also concerned that his accurate representation of Ms A’s condition at that meeting, and when meeting with West Suffolk clinicians on 14 January, was dismissed.
42. We hope we have already assured Mr R that we do not find concern with the information exchanged between West Suffolk and Cambridge. The documentation of the meeting on 13 January states that Mr R told the neurosurgeon Ms A’s speech was confused, that she uses the wrong words, and whilst mobile and capable with some activities, her memory was affected and she had difficulty retaining information.
43. Records made by the neurosurgeon at the time make clear that information about Ms A’s condition and abilities was gained from discussion with Mr R alongside information provided by West Suffolk. Considering her confusion, difficulties with memory and understanding, our adviser says Ms A would not have been considered able to engage in discussion about her management. Our adviser explains a patient’s involvement at these appointments is important when they can make informed decisions on their treatment. Unfortunately, Ms A was not able to make informed decisions at that time. As such, we do not consider it inappropriate that she did not attend the meeting on 13 January.
44. We know Mr R feels his account of Ms A was dismissed at this appointment. We hope to assure him from this documentation, we do not see evidence to suggest this was the case. We also find clear documentation of the discussion held between West Suffolk clinicians and Mr R on 14 January and find nothing to suggest Mr R’s account was dismissed or not considered at that time either.
45. Records made on 14 January note that after speaking with Mr R alone, the clinician then met Mr R along with Ms A and a clinical nurse specialist. Notes of this discussion document that Ms A tried to communicate that she could hear and see everything but could not talk. The clinical impression was that Ms A could not understand the complexity of the situation and that further discussion about her condition would cause her stress, as she would not fully understand.
46. We find records showing Mr R’s input was appropriately considered in line with GMC guidance, which says clinicians must assess the patient’s conditions, take account of their history and be considerate to those close to the patient.
47. We recognise Mr R may recall things differently and feel Ms A’s abilities were much better than was documented at the time. We remain of the view that having found numerous entries about how Ms A was, from the healthcare professionals directly providing her care, and from information documented that Mr R himself had shared, this appears an accurate account. We hope to assure him we cannot see his input was in any way dismissed.
Ward location 48. Mr R remains concerned about the effectiveness of communication exchanges owing to Ms A’s admission onto a geriatric ward at West Suffolk. He complains she was not transferred under the specialist decision-makers at Cambridge, who could have seen her face-to-face.
49. Our adviser explains patients are only accepted as transfers onto neurosurgical or neuro-oncology wards when they are deemed fit to receive treatment. If that is not the case, or until that time, our adviser says patients can appropriately be managed in other medical wards, and at other hospital sites to the specialist team. This was the case here.
50. Our adviser explains neuro-oncology is a tertiary speciality, which means it caters to a certain region or county and is not a specialism reasonable to expect to sit within each hospital or hospital Trust. This means it has limited resources, which is why places on specific neurosurgical or neuro-oncological wards are used for patients deemed fit for treatment.
51. We recognise Mr R’s concern, that Ms A’s location meant the team in Cambridge did not see her directly. Our adviser explains that patients are typically not seen by the MDT, that expected practice is for the MDT to receive information via referral, which is what happened in this case. Considering this and our explanation above about this specialist resource, we do not think Ms A’s location unreasonable, nor unreasonable that she was not seen by this specialist service.
Discharge summary 52. Mr R complains contradictory statements describing Ms A’s abilities are contained in West Suffolk’s discharge summary.
53. We can see the discharge summary contains a clinical narrative, written by West Suffolk, that we find was included in its neuro-oncology referral to Cambridge. It says Ms A’s neurological symptoms ‘appear to be slowly improving day by day’, noting an improvement of her expressive dysphasia and how she was following instructions better.
54. The discharge summary also contains the note made after the Cambridge MDT met. The MDT felt there were ‘no significant improvements’ in Ms A’s performance status since her readmission. We think it likely this is what Mr R considers contradictory content, which has led to this part of his complaint.
55. We understand Mr R’s concern, as we recognise how these comments can be read in a manner to appear contradictory. We hope to assure him that we do not find them contradictory. We instead find the content an accurate reflection of events, depicting the course of Ms A’s inpatient stay. The earlier comment refers to clinical entries noting the steroids given to Ms A did appear to show some improvement. Yet, as our adviser confirms, this improvement was not considered clinically significant, to any extent that would have determined treatment appropriate.
56. These two pieces of content were provided at different stages of Ms A’s stay and including them together in the discharge summary gives a picture of events as they occurred. We hope to assure Mr R the discharge summary is accurate to the recorded entries.
Prognosis explanation 57. Mr R complains clinicians failed to inform Ms A about her prognosis, leaving her to find this out inadvertently from a letter she received when home.
58. Records contain clear entries showing the teams at both West Suffolk and Cambridge explained Ms A’s prognosis to Mr R. As we have explained, Ms A was not able to be able to comprehend the information provided, and understandably, the prognosis. Records of the discussion between West Suffolk, Ms A and Mr R on 14 January make clear that the clinician determined she could not understand the complexity of the situation, and that giving her further details at that time would cause her unnecessary distress.
59. Our adviser has considered this carefully and does not identify any concern with this approach. From the recorded evidence, we consider the clinical teams did everything appropriate in this circumstance. They fully informed Mr R, and it was determined it would cause Ms A more harm than benefit to have attempted to have informed her, for the reasons documented.
60. This was in line with GMC guidance. This says clinicians must give patients the information they want or need to know in a way they can understand, and this must be done to meet patients’ language and communication needs. Unfortunately at this time, Ms A’s language and communication needs meant she was unable to fully understand this news. In turn we consider the teams took appropriate steps of informing Mr R and determining it in Ms A’s best interests not to inform her directly.
61. We do not underestimate how distressing it will have been for Ms A to have seen her prognosis documented in a letter she received several weeks later when at home and by post. This was clearly unexpected, and understandably caused great upset. It remains we are not critical of either Trust with regards to the information it did and did not share with Ms A about her prognosis at the point of her hospitalisation, for the reasons explained.
In conclusion 62. We were very sorry to have learned of the reasons for Mr R’s complaint, and in no way intend to diminish the incredibly difficult year he and Ms A had, from the time of her diagnosis to the time of her death. Based on their clinical experience, our adviser says Ms A’s care was in line with the nationally expected standard, and we do not see any evidence of service failure.
63. We acknowledge the unsubstantiated notation of the numerical performance status within the clinic letter in January has been the cause of ongoing upset for Mr R. Yet, we do not see any other documented content reflects this erroneous score, including the content within that letter itself. We hope our decision can give Mr R assurance that we do not find evidence of failings with the complaint issues he raised.