Communication
12. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
13. Mrs O says from diagnosis in November 2017 for prostate cancer, her husband was never told the cancer had spread, was not curable and life limiting. She says she attended every appointment with her husband and was never given this information and therefore missed an opportunity to enjoy the remaining time he had. The Trust dispute this and say Mr O was advised from the outset, his prostate cancer was advanced and had spread to his lumber region, that it was incurable and life limiting.
14. To come to a view here, we have reviewed Mr O’s urology clinic files and letters. We have requested records and correspondence from the Trust from the point of diagnosis to consider whether the communications regarding Mr O’s cancer prognosis was appropriate.
15. In reviewing the records, we note there appear to be no clinic letters addressed to Mr O between 2017 and 2021. We can only see letters sent to his GP during this time, and these do not appear to have been copied to Mr O. The Trust, when asked, have provided no further records. Accordingly, we have proceeded with our consideration using the evidence available to us. We have also taken some independent clinical advice from a consultant urologist. This advice will assist us in coming to a view.
16. The General Medical Council outlines its expectations in terms of communication within its ‘Good Medical Practice’ guidance. It states information should be shared with patients around their condition, its likely progression, and prognosis. It also says this should include any treatment options and the risks and benefits related to this.
17. From the outset, we accept there appears to be a lack of correspondence between the Trust and Mr O directly, between November 2017 and April 2021. Communication should be patient centred, as identified by the British Medical Journal article ‘writing outpatient letters to patients’, with NICE (Shared Decision Making), NHS England (ROAN information sheet 23: Quality improvement: best practice for clinical letters) and the Academy of Medical Royal Colleges (Please write to me: Writing Outpatient Clinic Letters to Patients Guidance), also recommending clinic letters should be written directly to the patient.
18. While we understand these guidelines were published between 2018 and 2020, with the events complained about starting in 2017, we are satisfied they account for the majority of the time period. We are satisfied that overall, there was an expectation that patients receive letters, and we do not think it is likely this would have been different in 2017. We have not seen evidence this has happened. Instead, letters were written to Mr O’s GP and not copied to him.
19. Having said this, it is likely the clinic letters sent to the GP are an accurate reflection of the discussions had at the time and the information shared during clinic appointments. While Mr O was not appropriately copied into correspondence following these clinics, we do think it is likely he was appropriately informed of his condition and expectations surrounding this. For example, in November 2017 the consultant urologist examined Mr O’s prostate, and found it to be in keeping with an advanced carcinoma (a type of cancer). In line with this, an isotope bone scan was arranged. It is unlikely that an examination of the prostate was conducted, and a referral made for a bone scan without any discussion with Mr O as to the concerns at the time.
20. A later example in March 2020 shared that Mr O was given a new prescription for Dexamethasone, and that clinicians were hopeful that his PSA levels would fall. It also shared that Mr O had an understanding that if his PSA levels began to rise again in future, then restaging scans and considerations for further treatment would be needed. Again, on the balance of probabilities, it is likely Mr O’s condition at the time was discussed and made clear.
21. Therefore, while we do see a distinct lack of written communication, we think the records reflect that there was an understanding of Mr O’s condition throughout his treatment, and this was discussed with him during clinic. From April 2021 we can see Mr O was copied into all letters addressed to his GP.
22. We then turned to consider what was happening overall in the clinical care, and what communication we can see was shared with Mr O. As mentioned above, clinic notes starting in 2017 show discussions with Mr O about his diagnosis of advanced prostate cancer and the suspicion it may have metastasised (spread outside the prostate). Follow up letters sent to Mr O’s GP at this time suggest the disease was considered stable and medication was prescribed to reduce further spread.
23. We also note in January 2018, a multi-disciplinary team (MDT) discussed Mr O’s case and felt, based on current clinical information, Mr O’s cancer had metastasised. However, it was noted he had been responding well to treatment and the focus on the management, rather than cure, of the cancer would continue.
24. At this stage, metastasis could not be confirmed without surgery, but Mr O’s cancer was considered stable. We can see initial treatment was through hormone medication. In June 2019 the Trust did note his PSA was slowly rising and discussed the need for maximal androgen blockage (MAB) in future. It is clear this was being discussed and considered, and Mr O warned about the possibility of this, but this was not an immediate plan.
25. Overall, we are confident information was shared with Mr O that he had advanced prostate cancer with no possible curative options available. However, as it was responding well to management, we would not have expected any discussion around life expectancy at this time. This is because at that time the clinical view was that it was stable, and the records show very little change in Mr O’s condition at that time.
26. Clinic notes for February 2021 show discussion with Mr O that an increase in PSA levels meant his cancer was restaged, and a referral was made to oncology. Our adviser explains this indicates the disease had progressed. We are persuaded Mr O would have been aware his cancer was restaged as he would have been aware of and attended the oncology clinic for this.
27. The clinic letter confirms his current treatment regime was no longer controlling his cancer. We also see a signed consent form from April 2021, showing Mr O had started medication (enzalutamide). The clinic letter is clear that this is intended to prolong survival and Mr O’s manage symptoms. We can see this letter was copied to him in this case.
28. We understand by this point the overall position had worsened in terms of the cancer progressing, but also note steps were taken to manage this through new medication. At this time, it was not clear if this would be effective, but the direction is that this would be continued as long as it is effective and tolerated. In light of the position here, we would not have expected a discussion about end of life at this time. We are pleased to note he seemed to tolerate the treatment reasonably well and his PSA was considered to have ‘plateaued’ in August.
29. We see in a clinic letter from November 2021 that the progression of his cancer was discussed again with Mr O. It was confirmed the cancer was castrate resistant (meaning treatment is not curative) metastatic prostate cancer. The consultation also discussed his PSA levels rising despite medication, and the suspicion of metastases in his lymph nodes. The record reflects discussion that the cancer was no longer being controlled, was suspected to have spread, and alternative remedies were discussed as an attempt to control growth, address symptoms and prolong life. We are persuaded from the record that Mr O was made aware of his progress and the seriousness of his prognosis.
30. In February 2022, a discussion was recorded in respect Mr O’s prescription of enzalutamide, as Mr O had reported it was making him feel unwell. His rising PSA levels and that enzalutamide did not appear to be slowing his cancer growth were also a concern. We can see the position was considered to be disappointing, and it was discussed whether stopping enzalutamide might be a better option for him. Similarly, chemotherapy as an alternative for control was being considered. Whilst this was a negative turn of events, we can see there was still an alternative for possible control at this time, and we have no concerns about the messaging here.
31. In March 2022, Mr O was advised his PSA levels had doubled over six months, with recent CT scans showing growth in lymph nodes and bone metastasis. It is clear at this time things were advancing. Nevertheless, we can also see optimism in the records in relation to slow overall progression. The plan was to monitor for symptoms associated with the spread to the bones and consider if there would be any future role for radiotherapy in managing these symptoms, if required. Again, at this time there were clearly still options available should the cancer progress further, and so we would expect communication to reflect this. We would not necessarily expect to see discussion surrounding life expectancy at this time, understanding it can be difficult to establish this.
32. In October 2022 we can see further imaging had highlighted additional concern. There had been further progression of cancer as well as enlargement of lymph nodes. There were also concerns about the impact on the kidneys and renal function. It is clear the cancer was spreading and the focus at this point was completing an intervention, if possible, to preserve renal function and allow urine drainage.
33. Overall, we would not have expected a discussion regarding end of life to have been held with Mr O between November 2017 and February 2021 because his cancer appeared to not be significantly progressing. The records after February 2021, show correspondence was copied into Mr O, and clinic records show discussions about the advanced nature and spreading of the cancer had taken place.
34. While the clinic notes do not show the exact discussion which would have taken place, we are satisfied that Mr O was appropriately informed throughout his care. While we have seen no evidence Mr and Mrs O were informed his cancer was ‘incurable and life limiting’ precisely in those words, we are persuaded the seriousness of his cancer was communicated to them. The records we have seen make significant reference to discussions with Mr O during clinic regarding the advanced nature of the disease and its progression.
35. While we are persuaded the Trust should have provided better written communication with Mr O in the early years after diagnosis, we cannot say this indicates a failing in the Trust properly informing him of the seriousness of his condition. We are satisfied that the discussions the Trust had with Mr O accurately represented his condition at the time, and he was properly informed of this throughout.
Nursing care
36. Mrs O says following a bilateral nephrostomy in November 2022, inadequate nursing care led to him developing sepsis. Mrs O says the sepsis shortened the time they had together. She says the infection was contracted while on the ward because of poor hygiene. The Trust dispute Mr O developed sepsis. It says he developed Staphylococcus aureus but say this was not due to failed post operative care. It explained the infection is very common and there is no way of saying where it originated from.
37. We have reviewed the records available relating to Mr O’s inpatient stay following his nephrostomy procedure, and have seen no record of a sepsis diagnosis. We have seen Mr O developed a slight raise in temperature to 38.2c on the morning of 2 December 2022, which had reduced to 36.7c following a course of paracetamol by the evening. NHS Choices advise a temperature above 38c is considered high, with a normal temperature being around 37c.
38. We discussed this with our nursing adviser. In terms of hygiene, and whether this may have posed an infection risk, there is no evidence in the records that hygiene was a concern in Mr O’s care. He was assessed as being mobile, self-caring, continent and capable of making his needs known to nursing staff between 7 and 18 November. The assessment identified no hygiene concerns. When asked, Mrs O has not provided any further evidence of poor hygiene to support her concerns.
39. The record does show that from 18 November, Mr O began to need some assistance. This would be reasonable as he had been fitted for bladder irrigation (tubes to wash out blood clots in his bladder). Hygiene assistance was provided until 22 November, following which he was assessed as self-caring and independent again. We asked our nurse adviser about the hygiene in Mr O’s care, and they have advised they have no concerns here, with no evidence suggesting the hygiene Mr O was assisted with at this time would have caused infection to develop.
40. We understand that further to the nephrostomies, Mr O had a renal haemorrhage and required blood transfusion as indicated in his discharge summary. As such, we appreciate this will have been a very worrying time. We have seen Mr O developed an infection of some kind on 13 December, with observations showing an increased temperature. While the chart shows an infection was suspected, it was noted the signs for sepsis (‘signs of sepsis and what to do’) were not present, these include increased heart and respiratory rate, new or increased need for oxygen, unresponsive AVPU (alert, voice, pain, unresponsive) scale, or changes to skin appearance such as a rash or mottling. Our nursing adviser confirmed there was no basis to suggest the Trust held any concern that Mr O had sepsis.
41. While sepsis was not suspected, Mr O was treated using the sepsis six protocol, as is evident in the observation charts. This protocol has been designed and implemented to improve the early recognition and treatment of sepsis. This appears to have been done in the interest of excluding this as a possibility. This treatment includes, specific sepsis blood test, IV fluids and antibiotics, and the monitoring of urine output. However, the records do not show results for a blood culture on which we can draw any conclusions. The lack of results does suggest this was not done and is against recommendations when using the sepsis care bundle for treatment recommended by NICE (Sepsis: management).
42. Generally, we would consider this a failing had sepsis been suspected and crucial blood tests were missed. In this case, it does appear the sepsis six protocol approach was more in the spirit of excluding sepsis rather than confirming it. This is because sepsis was not suspected, and the markers for Mr O did not show signs of sepsis.
43. We asked our adviser if they had seen any record that would call into question the clinical approach here. They advised they saw nothing of concern in the treatment provided for Mr O. Overall, we are not satisfied there is evidence here to suggest Mr O had sepsis, and whilst we see no evidence of blood cultures being taken, we are satisfied the overall management of his care was appropriate and have not seen a failing here.
Discharge
44. We also see Mrs O is concerned about an inappropriate discharge, saying that Mr O was discharged to a care home which was not equipped to deal with his needs. A complaint has not been made regarding the care home, and so we would not comment on its ability to meet Mr O’s needs. Our consideration here will be focused on what Mr O’s needs were when he was discharged, and the Trust’s consideration of how these would be met once discharged.
45. It is our understanding, from reviewing the complaint documents, that the concerns here relate to Mr O having a nephrostomy tube which needed to be managed, and that there was no preparation for palliative care. We will therefore go on to consider these issues.
46. As outlined above, Mr O had undergone a bilateral nephrostomy, which required the use of a nephrostomy bag. Where a nephrostomy tube is in place, this requires maintenance such as cleaning the tube and emptying the attached bag. This was still in place when Mr O was discharged.
47. We see from records that Mr O was discharged to a care home, and that the decision to do so was related to Mrs O being unwell at the time and so unable to support him until she recovered. This shows a decision had been made that Mr O was well enough to be discharged, and a consideration was made as to where would be the best place for him. We see in the records there is an entry on 30 November 2022 which shows this was discussed with Mrs O and she agreed with the decision to discharge Mr O to a community bed temporarily.
48. Following this decision, we see the care home shared with the Trust that its staff did not have experience with nephrostomies. We understand this would have caused concern for Mrs O to learn. Once the Trust was made aware of this, we see it made a referral to district nursing to support with this. It also arranged for the district nurse to visit the care home to provide nephrostomy education to the care home staff. We therefore thought about the appropriateness of this.
49. We can see from several NHS Trusts that it is common for patients to be discharged with information on managing their nephrostomy tubes themselves, and Macmillan cancer support also shares information on self-managing nephrostomies. While Mr O was not in a position to manage the nephrostomy himself, we are satisfied that staying in hospital would not be required for this if measures were put in place to support him. We are satisfied that training the care home staff to assist in caring for the nephrostomy was appropriate, in place of Mr O managing this himself given he was not able to.
50. We are also aware Mr O was not discharged with palliative care in place. While palliative care can sometimes be in place to improve the quality of life for patients with terminal illnesses but who are not yet dying, it is our understanding Mrs O refers to this specifically in relation to end of life care. This is because she outlines in her complaint to the Trust that this would have allowed for arrangements to be made and for Mr O to spend more time with his family.
51. We considered this carefully. This is undoubtedly an incredibly important matter for Mrs O given her concerns on missing out on this important time with her husband. We understand this. We therefore reviewed the records to see if there was any expectation end of life care would be necessary. We see this is considered throughout the nursing records during Mr O’s time in hospital, and it is consistently recorded that he was not on end of life care.
52. We see the focus throughout the records is on supporting Mr O’s rehabilitation and supporting him to regain his independence. This is evidenced by referrals to both inpatient and community occupational therapy as well as physiotherapy, and we see the stated aims of his physiotherapy was functional rehabilitation. Where there is a clear focus on rehabilitation, we would not expect to also see plans put in place for palliative care.
53. We also understand Mrs O’s concerns regarding sepsis which we outlined above. We do not have any evidence to support that Mr O was unwell with sepsis while in hospital.
54. Therefore, we are satisfied this also would not have raised concerns around Mr O requiring end of life care. Given our consideration set out above, we are satisfied the Trust appropriately considered Mr O’s needs and he was discharged with appropriate support in mind of this.
55. We are deeply sorry for the loss Mrs O and family have suffered due to the death of Mr O. We know that having concerns around the treatment he received for his cancer and while in hospital would have added to this. While we know our decision will likely be disappointing, we hope it has offered helpful explanations as to how we reached our decision.