Completing the DNAR 19. Dr F complains on 23 August the Trust failed to follow the correct procedure, including getting proper consent, when it completed a DNAR. She says the Trust did not tell the family about this decision, despite regular visits.
20. We reviewed the DNAR order within Dr T’s records. The back of the form contains guidance for its completion. Our clinical adviser confirms that in line with this guidance, and Trust policy, the DNAR decision was appropriately consultant-led.
21. The form is dated by the completing clinician on 23 August and is ticked to say Dr T had been consulted and/or informed. The records support this, containing an entry of a ward round on this same date, when Dr T was seen, and the form completed. This is in line with Trust policy which says: ‘Patients must always be informed about any decision made regarding their CPR status’ (CPR stands for cardiopulmonary resuscitation).
22. We know how concerned Dr F is, that family had no opportunity to comment on the Trust’s decision. We can assure her the correct procedure was followed, in line with Trust policy. Dr T’s mental capacity was assessed on the same date, and it found she had capacity. Whilst we understand it can be very difficult for relatives, when a patient has capacity there is no requirement to discuss matters with family.
23. Trust policy says: ‘A patient with capacity may consent to the question of resuscitation being discussed with his/her family, friends and/or carers, but in the absence of consent, no such discussion should take place’. Our clinical adviser explains that this ensures to respect patient autonomy. It means where a patient has capacity, their family and friends cannot override the patient decision, where there may be opposing views.
24. We understand the considerable upset this issue has caused Dr F. We hope to assure her the Trust acted appropriately, in line with its own policy.
Swollen arm 25. Dr F complains the Trust failed to properly treat her mother’s swollen left arm, mistakenly assuming it was due to lymphoedema following a mastectomy. Dr F says her mother never had a mastectomy as both her breasts were intact and without surgical scars.
26. We hope to assure Dr F we find evidence that clinically supports the diagnosis of lymphoedema. Records on Dr T’s admission document she had long-standing lymphoedema, which was described as worsening at this attendance.
27. The records, including at post-mortem, show extensive involvement of the left breast, involvement of lymph nodes in the left supraclavicular fossa and axilla (above the collarbone). Our clinical adviser explains these lymph nodes will have compressed the lymph node channels that would otherwise drain the left arm, and this caused the swelling otherwise known as lymphoedema.
28. Our clinical adviser explains that in line with NLP guidance, treatment is generally given to help alleviate the symptoms. They explain there was no specific guidance for the Trust to follow, as the management of lymphoedema is typically a chronic process rather than one that requires acute intervention in the emergency or inpatient setting.
29. Dr F’s complaint to us is that her mother’s left arm was untreated, and she was left in pain. We hope to assure her, we do not find this was the case. We note that Dr T was admitted with pain, which our clinical adviser considers most likely a consequence of her bone metastases. Admission records note the initial management plan included pain control, and records throughout the admission show Dr T was offered analgesics.
30. We also find evidence that the Trust investigated the left arm, to assess for a possible deep vein thrombosis. Our clinical adviser confirms the care given was appropriate to the clinical circumstances, and the appropriate pain relief was offered.
Breast wound 31. Dr F complains the Trust failed to identify the cause of her mother’s breast wound, insisting it was breast cancer without direct evidence of this. Dr F says her mother’s recent mammograms and ultrasounds were M2 and U2 respectively, which is not cancerous.
32. We are aware of how strongly Dr F does not accept that her mother had breast cancer. We hope to assure her we find numerous pieces of evidence, from various sources, that supports this clinical diagnosis. This includes the letter from the breast surgeon in June 2021 detailing Dr T’s past medical history, and a pathology report taken from her previous bone fracture in early 2022, providing histological (microanatomy, laboratory) confirmation of metastatic disease.
33. In the letter, the breast surgeon describes Dr T’s breast cancer as likely inflammatory breast cancer. Our clinical adviser confirms this is entirely consistent with the photographic evidence we have of Dr T’s left breast, provided by her husband as part of the complaints process. They explain the findings of an orange peel type appearance is typical of widespread infiltration of the breast, which is often termed inflammatory breast cancer.
34. Dr F complains the Trust failed to identify the cause of her mother’s breast wound. Our clinical adviser explains there was no clinical need for further investigation, as the diagnosis was already clearly established.
35. We understand Dr F’s concern, particularly considering the mammogram and ultrasound results. Our clinical adviser explains that these scans looked to investigate the presence of any disease in the breast and surrounding tissues only. They do not look at whether there is metastatic disease in any other areas of the body. Whilst nothing apparently cancerous was seen in the left breast or arm in the imaging taken in July 2021, there is clear evidence of metastases elsewhere in the body, from other types of imaging taken.
36. In addition to the CT scan findings of cancer in July 2021, we find a letter dated 22 June 2021 which says a previous CT scan taken in Egypt showed bilateral thoracic spine metastases (tumours on both sides of the middle part of the spine, between the shoulder blades). We also find a histological diagnosis of metastatic disease starting in the breast, on the left hip pathological fracture dated 14 January 2022.
37. To summarise, whilst the mammogram and ultrasound scans may not have found cancer in the breast tissue at that time, evidence shows robust clinical support for the diagnosis of advanced and metastatic breast cancer, shown on clinical examination and biopsy.
Fluids 38. Dr F complains the Trust failed to give Dr T IV fluids, despite her suffering from malnutrition. Dr F says Dr T’s medical records show contradictory instructions about this.
39. Our clinical adviser explains that sadly, it was apparent Dr T was actively dying. They explain there is no specific guidance on the administration of fluids in the palliative care setting. Good clinical practice indicates IV fluids are often required to manage dehydration, or the patient’s inability to take fluids orally.
40. We find evidence within the records to show that IV fluids were given to Dr T, in line with good clinical practice. We do not see that the records show contradictory instructions. Instead, we find they reflect the evolving clinical picture and circumstances as Dr T’s admission proceeded, whilst showing respect for her own choice and wishes, and balancing her clinical need.
41. For a patient who is actively dying, the premise of effective care is to reduce all unnecessary interventions other than those required for comfort. It is our clinical adviser’s view that the Trust’s provision of IV fluids was appropriate to Dr T’s clinical need. We hope to assure Dr F, we do not find any clinical indication that Dr T’s condition was deteriorating through dehydration as any direct result of poor or inadequate care.
Dental hygiene 42. Dr F complains the Trust failed to give her mother proper dental hygiene care. When speaking with us, Dr F said the Trust failed to wash her mother’s dentures, meaning she did not want to eat.
43. The assessments completed on admission show Dr T had capacity, and she was self-caring of her own personal hygiene needs. We find entries as the admission continued showing many occasions where nursing staff gave Dr T hygiene care. We also find entries noting Dr T would often decline offers of assistance.
44. Records show Dr T would also occasionally refuse her medications, tests and investigations, and food and drink. As she was deemed to have capacity in line with the Mental Health Act, our nursing adviser confirms it was appropriate for Trust staff to respect her wishes, when she refused any aspect of the care and treatment offered.
45. This included her refusal to remove her dentures to have them cleaned. The records document that family raised this concern, and that nursing staff made attempts to ask and encourage Dr T who, at times, refused. We find entries showing this was discussed with Dr T’s husband, where he was advised that although staff regularly requested her to remove her dentures to be cleaned, she often refused.
46. We recognise this was the cause of concern to family at the time, and that it remains a concern within this complaint. We hope to assure Dr F that the Trust’s actions were appropriate in respecting Dr T’s wishes. This was in line with NMC guidance, which says nurses must treat people as individuals and uphold their dignity, by recognising individual choice and respecting their right to accept or refuse treatment.
Ward move 47. Dr F complains the Trust refused the family’s request to move Dr T to another ward on the day she died.
48. Very sadly, as we have explained, Dr T was actively dying. NICE guideline 31 says clinicians should establish the resources needed for the dying person and create an individualised care plan. We find evidence to show the Trust acted in line with this guidance.
49. On 8 September, a multidisciplinary team of staff met together and spoke with Dr T about her deterioration. On 9 September, after clinical discussion, it was decided if Dr T was to deteriorate further, she should receive ward-based care. By 13 September, the day Dr T sadly died, she was on an end-of-life-care pathway.
50. Our clinical adviser says it would be clinically inappropriate to move a patient in these circumstances. We are sorry to learn that family believe Dr T’s chance of survival was comprised when the Trust did not move her on this date. Evidence shows us the Trust had taken full account of Dr T’s clinical circumstances in the time leading up to her last days, and we are assured the clinical decisions about the location of her care were appropriately taken in line with NICE guideline 31.
Morphine 51. Dr F complains the Trust prescribed too much morphine to her mother.
52. We know Dr F is concerned that morphine causes respiratory depression and suppresses cough reflexes. We hope to assure her, that records show the morphine given to her mother was appropriate. In line with NICE CKS guidance, morphine was an appropriate drug to give to help with Dr T’s pain, and it was given at appropriate doses.
Pleural effusion 53. Dr F complains the Trust failed to treat her mother’s pleural effusion with pleurodesis. Talc pleurodesis is a procedure that involves putting sterile medical talcum powder into the space between the lung and the chest wall. The talc causes irritation and inflammation in the lung linings, which makes them stick together and prevents the further build-up of fluid or air.
54. Records show that after oncology and respiratory review and investigation of the pleural effusion, Dr T had 1.5 litres of fluid drained on 31 August. Our clinical adviser confirms this was appropriate, that typically, one drainage procedure is adequate for palliative care. They explain initial drainage followed by observation is clinically appropriate.
55. This is supported by NICE guideline 122, which says drainage of the fluid should first be performed in attempts to relieve the symptoms of a pleural effusion. We think the Trust acted appropriately in managing Dr T’s pleural effusion.
56. NICE guideline 122 goes on to say that patients who demonstrate a symptomatic benefit should then be offered pleurodesis for longer-term benefit. We understand this is what Dr F considers should have happened. It was only when a chest X-ray was taken on 13 September that it was found the fluid had built-up again.
57. By this time, Dr T was receiving supportive, end-of-life-care. Talc pleurodesis was not clinically indicated as its medical purpose is for longer-term benefit. Very sadly, Dr T was already in the last days of life. We do not consider it a failure pleurodesis was not performed, and we consider the Trust’s management was consistent with both NICE guideline 31 and NICE guideline 122.
Suspending the DNAR 58. Dr F complains the Trust failed to attempt resuscitation after her mother aspirated her own vomit. Dr F says a DNAR order should be suspended in the event of aspiration, as guidelines say it is a reversible incident. We looked to the specific guidance on the matter of a reversible cause.
59. Joint Statement guidance says a DNAR decision: ‘does not override clinical judgement in the unlikely event of a reversible cause of the person’s respiratory or cardiac arrest that does not match the circumstances envisaged when that decision was made and recorded. Examples of such reversible causes include but are not restricted to – choking, a displaced tracheal tube or a blocked tracheostomy tube’.
60. We also looked to the recorded evidence, to tell us what happened at the time of Dr T’s sad death. We know this will likely be upsetting for Dr F to read, yet we consider it important to relay, to explain our decision.
61. On the evening of 13 September, a medical emergency call was made due to a drop in Dr T’s oxygen saturation levels and her consciousness level. The consultant attended and recorded that Dr T was not a candidate for ventilation, that sadly this would not reverse the prognosis. A portable chest X-ray was taken, and this reported a massive left pleural effusion. The consultant recorded that Dr T was not a candidate for further drainage, as she was receiving best supportive, end-of-life-care.
62. During discussion with Dr T’s husband, informing him of these recent events, the consultant was advised that Dr T was not breathing. The consultant attended and recorded that Dr T appeared mottled, finding no heart sounds, no respiratory effort and vomit in her oxygen mask. The vomit was suctioned, and the consultant advised Dr T’s husband that she had sadly died.
63. We know how strongly Dr F feels that her mother died choking, having aspirated her own vomit. She tells us this is what her father witnessed, and we considered this carefully. The recorded evidence clearly shows Dr T was found to have a massive pleural effusion, and she was actively dying. Our clinical adviser explains there was no reversible medical issue here. Whilst Dr T did vomit, as we have explained, the vomit was suctioned and the post-mortem found no evidence of aspiration in the lungs.
64. We do not find any evidence to support the view that Dr T died from choking or aspirating on her own vomit. In turn, we do not find there was any remediable medical issue or reversible cause, that meant the DNAR order should have been suspended. Our clinical adviser explains CPR would have been both unsuccessful and inappropriate, as sadly, Dr T’s death was imminent.
Sharing records 65. Dr F complains after her mother died, the Trust gave a copy of her medical records to an inappropriate person who was estranged from the family, without consent from her next-of-kin.
66. Within a day of the Trust becoming aware of this matter from Dr F’s email to it, the Trust emailed Dr F. It said it had sent her concerns to its Information Governance team, that it was taking the matter extremely seriously and started an urgent internal investigation to determine what happened.
67. The Information Governance team emailed Dr F one month later, following its investigation. It confirmed the Data Access team had not correctly followed its internal processes, resulting in Dr T’s healthcare information being disclosed to Dr F’s sister.
68. The Trust explained the process for requests relating to deceased patients is for the next of kin to be consulted prior to disclosure. It said regrettably, due to human error, this step was missed on this occasion.
69. The Trust assured Dr F it has appropriate policies and procedures in place, and a training exercise would be completed with the team to prevent recurrence. It said it takes any failure of Trust process very seriously, and this would be addressed with the team to avoid it happening again in future.
70. The Trust said the records disclosed do not constitute ‘personal data’ as defined under UK GDPR as the information relates to a deceased patient, and so did not require reporting to the Information Commissioner’s Office. It said the key medical information disclosed relates to breast cancer, which Dr F’s sister would have a legitimate reason to know due to potential hereditary factors.
71. We can see the Trust took this matter incredibly seriously, acting promptly and completing an investigation into what happened, without delay. We are satisfied the reason for this failure was identified and has been explained.
72. Whilst understandably the cause of great distress to Dr F and her family, we must reasonably recognise that human error in healthcare processes can and does sometimes occur. When it does, we expect this should be acknowledged and identified, and explained to those involved. We are satisfied sufficient acknowledgement, explanation and apology have already been given to Dr F.
73. We are also assured appropriate action has been taken to prevent this occurring again. We will not be taking this matter further, as we consider this matter has been sufficiently remedied in line with Our Principles, specifically: ‘Being customer focused: Apologising for and explaining the maladministration or poor service.
Acting fairly and proportionately: Offering remedies that are fair and proportionate to the complainant’s injustice or hardship.
Putting things right: Providing the appropriate remedy in each case.
Seeking continuous improvement: Using the lessons learned from complaints to ensure that maladministration or poor service is not repeated.’
74. Dr F came to us wanting the Trust to admit its mistakes, to apologise and to stop them happening again. In respect of this matter, we consider this has already been achieved and the impact already remedied in line with Our Principles.
Conclusion 75. We recognise that our decision may not offer the outcome Dr F was seeking. It appears that at the time of Dr T’s admission, and still perhaps now, there remains a significant disconnect between the clinical evidence that Dr T was actively dying, and the family taking an alternative view.
76. We recognise that family continue to dispute that Dr T had metastatic breast cancer. We hope our explanations give them the assurance that we find a wealth of evidence to show this was an accurate clinical diagnosis.
77. We do not underestimate how distressing this time was for Dr F, for her family, and for Dr T herself. We know our decision will be difficult for Dr F to read, and we can assure her we have listened carefully to her concerns.
78. We find substantial clinical evidence to support our decision. We are assured the Trust acted appropriately in providing appropriate care and treatment to her mother, and that it has since acted appropriately to remedy the acknowledged record sharing failure.