Communication
23. Mr W complains about the care provided to his late aunt, Mrs O, between 24 December 2023 and 6 January 2024. He complains that Mrs O and her family were incorrectly told her cancer had spread throughout her body, and because of this she was treated as a palliative patient.
24. Mr W complains this decision was made without consulting the family and that there was a lack of communication from the team treating Mrs O. He says the team promised to call him back on several occasions to discuss Mrs O’s care but never did.
25. In the Trust’s response to the complaint, it explained that upon admission to hospital Mrs O had been identified as being in poor health and at high risk of deterioration. The Trust advised that Mrs O deteriorated, and a multi-disciplinary decision was made to take a palliative approach to Mrs O’s care due to her deterioration.
26. The Trust also explained that family members were present in daily communications with the team, and this was extended to Mr W as next of kin. The consultant gastroenterologist had a video call with Mr W in which he expressed his concerns, and the consultant explained the clinical opinion of the team carrying for Mrs O.
27. Due to Mr W’s concerns, the Trust agreed to obtain a second opinion from a clinician at the Trust not previously involved in Mrs O’s care. The consultant gastroenterologist who provided the second opinion agreed with the decisions made by the clinical team, and informed Mr W of the same.
28. We have reviewed Mrs O’s medical records with our adviser, and we have taken into consideration Mr W’s account of events, and the Trust’s responses.
29. We have also considered NICE G31, which provides guidance for clinicians on recognising when a person may be entering the last days of their life.
30. NICE G31 says clinicians should gather and document information on the persons needs, their current clinical signs and symptoms, their medical history and clinical context, the person’s goals and wishes, and the views of those important to the person about future care (1.1.1). This information should be used, alongside information gathered from the multiprofessional team, to help determine if the person is nearing death, deteriorating, stable, or improving (1.1.5)
31. It also says healthcare professionals need to take into consideration the person’s current mental capacity to communicate and actively participate in their end-of-life care (1.2). They should provide the dying person, and those important to them, with accurate information about their prognosis, an opportunity to talk about any fears and anxieties and to ask questions about their care in the last days of life, and opportunities for further discussion with a member of their care team (1.2.4).
32. Lastly, NICE G31 says clinicians should discuss the dying person’s prognosis with other members of the multiprofessional care team and ensure this is documented in the record of care (1.2.6).
33. We can see from the records that an update was provided to Mr W on 28 December. In this update, the doctor explained Mrs O had deteriorated further and this was multifactorial. The doctor explained the current plan, which was ensuring Mrs O was stable enough to go through with the ascites drain. The doctor advised Mr W that whilst they had a plan in place, Mrs O was at high risk of further deterioration. In this note, the doctor also recorded a request from Mr W that Mrs O’s son and his wife be involved in communication regarding Mrs O’s care.
34. A second update was given on 28 December to advise Mr W the ascites drain would be happening that day, and it was expected this would relieve Mrs O’s symptoms. The doctor also advised there were concerns about fluid on the right lung, and Mrs O had been referred to the respiratory team to determine the cause.
35. It is documented an update was given to Mr W on 29 December, in which the doctor explained the current plan. The drain had not relieved the breathlessness, and they were waiting for a respiratory review.
36. On 31 December, an update was given to one of Mrs O’s sons at the bedside, and Mr W over the phone. The doctor explained that Mrs O’s prognosis was likely to be poor. The clinical team were balancing the need for diuretics (a medication to help reduce fluid build-up) to help with the ascites, and Mrs O’s hydration status. The doctor explained they would be making a referral to the palliative care team and requesting a CT chest scan.
37. On 1 January, the palliative care team reviewed Mrs O. It is noted that her son was present, and he advised the palliative care nurse to contact Mr W to discuss Mrs O’s care. As the prognosis was poor, a plan was made to arrange a fast-track discharge to Mrs O’s home with a package of care in place.
38. Mrs O had a significant gastrointestinal (GI) bleed on 2 January 2024. It is noted that the family were updated about these events. On 3 January, Mrs O was reviewed by two of the doctors and the palliative care team. Mrs O’s sons were present at the time of review. The palliative care nurse informed them that Mrs O had deteriorated significantly from two days ago, and it was now thought she was reaching the end of her life. It is noted that Mr W was also updated of this deterioration, and that he told the clinical team he was happy for Mrs O’s sons to make decisions regarding end-of-life care as he was unwell in hospital himself.
39. On 4 January, Mr W spoke with members of the clinical team about the decision to provide end of life care to Mrs O. It is noted Mr W raised several concerns and frustrations about the situation. He also raised concerns that he had been told the previous day that Mrs O’s cancer had spread, and this is why she was on end-of-life care.
40. The notes indicate long discussions were held about Mrs O’s presentation and deterioration, and an explanation was given as to how the end-of-life decision had been made. Mr W requested a second opinion, and this was arranged and given.
41. A further update was given to Mr W on 5 January. He was told of Mrs O’s further deterioration. It is noted that Mr W repeated his concerns about the decision, and was told the medical decision had been made in Mrs O’s best interests.
42. From the evidence we have reviewed, we consider the decision to provide end of life care to Mrs O was multifactorial, in that there were several presenting issues causing Mrs O to be unwell and contributing to her deterioration.
43. We can see that the decision making was done in conjunction with a consultant gastroenterologist, a specialist in palliative medicine, a clinical nurse specialist, an advanced nurse practitioner, and members of Mrs O’s family including her sons and Mr W. We consider this was in line with the NICE guidance we have outlined above, and for this reason we do not consider there are any indications further investigation is required.
44. With regards to communication, we have not identified an instance where the family were told that Mrs O’s cancer had spread. However, we recognise we were not present at the time to independently know what, and how, things were said. We accept that it is possible there was a miscommunication, and do not wish to invalidate Mr W’s recollection. We can see the Trust has apologised if this was the case and has shared this feedback with the team. We consider this action is appropriate in line with the NHS Complaint Standards with regards to giving fair and accountable responses and promoting a learning culture.
45. Based on the evidence we have seen, detailed explanations were given to the family about the end-of-life decision that was made, and regarding Mrs O’s presentation and ongoing care. We consider this was in line with the NICE guidance outlined above. For this reason, we have not identified any indications of a lack of communication from the clinical team caring for Mrs O and we will not be taking any further action on this part of the complaint.
Care and treatment
46. Mr W raised concerns that because the decision was made to treat Mrs O as a palliative patient, she received a substandard level of care.
47. In response to the complaint, the Trust explained that efforts were made to keep Mrs O comfortable, whilst trying to minimise the risk of side effects from medication and treatments, and ensuring Mrs O was provided with dignity and respect.
48. NICE G41 also provides guidance on the level of care that should be provided to patients who have been identified as approaching end-of-life. It recommends frequent mouth and lip care, and hydration if appropriate (1.4.1-1.4.4), and highlights the importance of providing non-pharmacological methods of symptom management, such as re-positioning to manage pain (1.5).
49. The NICE guidance advises clinicians to review the patient’s current medicines and stop any previously prescribed medicines which are not providing symptomatic benefit or that may cause harm (1.5.1). Where a patient is unable to tolerate oral medicine, a syringe pump is an appropriate alternative to deliver medicines for continuous symptom control (1.5.6).
50. The GMC’s guidance on care and treatment towards the end of life explains that where a patient is expected to die within hours or days, clinicians should consider whether the burdens or risks of providing clinically assisted nutrition or hydration outweigh the benefits they are likely to bring. It is not usually appropriate to start or continue treatment at this stage. Where a patient, or those close to the patient, has requested that nutrition or hydration be provided until their death, these wishes must be given weight and balanced with the burdens and risks of such treatment. Furthermore, the patient’s condition must be kept under review, and the benefits, burdens, and risks of treatment must be reassessed (123-125).
51. We have reviewed the care provided by the clinical team with our clinical adviser.
52. We can see that there was ongoing supervision of Mrs O’s care by the palliative care team, they regularly reviewed her presentation and made recommendations for appropriate levels of care and support for Mrs O and her family. The palliative care team recommended the use of a syringe driver to manage Mrs O’s symptoms with medication and keep her as comfortable as possible.
53. We can see evidence of regular checks during the nurses’ end-of-life comfort rounds, which included re-positioning, skin checks, mouth care, meeting toileting needs, ensuring the environment was providing comfort and dignity, and assessing Mrs O’s levels of pain, as well as checking for nausea and vomiting, signs of breathlessness, and agitation.
54. We note a decision was made on 5 January to discontinue the subcutaneous fluid infusion. This was because it was not deemed to be providing any symptomatic relief and was causing swelling. Our adviser explained this may have led to unnecessary suffering if it had been continued.
55. Overall, we have not identified any indications that Mrs O received a substandard level of care when the decision was made to focus on end-of-life care. We consider there are indications that the care provided to Mrs O and the decisions made around medications and treatment were in line with the NICE and GMC guidance we have outlined above. We hope this information is reassuring for Mrs O’s family.
Complaint handling
56. Mr W complains about the way his complaint was handled. He complains that the Trust did not conduct a thorough investigation or make appropriate service improvements, and that the Trust did not signpost him to the Parliamentary and Health Service Ombudsman at the end of the local resolution process.
57. The Trust’s complaints policy says its investigations should be undertaken by an investigating officer who will contact the departments and individual clinicians involved in the complaint to obtain their comments and statements. The investigation should be undertaken with the relevant professional clinical leads (such as a Matron, Divisional Director, Head of Department). Where things have gone wrong, a complaints action plan must be included to deliver any recommendations that have been identified as part of the investigation process.
58. The NHS Complaint Standards say organisations must ensure they undertake a thorough, proportionate, and balanced look into the issues raised in a complaint. They should give a fair and balanced account of what happened and should openly identify where things have gone wrong and take responsibility for these. Where things have gone wrong, organisations should take accountability, put things right, and use learning to improve their services.
59. The Trusts complaint policy also advises that where the complainant is dissatisfied with the complaint response, any outstanding issues should be reviewed and an appropriate course of action, such as further investigation or a local resolution meeting, should be identified. On completion of further investigation, a written response should be sent to the complainant. If the complainant does not wish the Trust to investigate the complaint further, or if the Trust considers local resolution has been exhausted, the complainant should be reminded of their right to ask the Parliamentary and Health Service Ombudsman to review their case, and information should be provided concerning this process.
60. We can see from the Trust’s responses that the General Manager and Service Manager for Gastroenterology investigated Mr W’s concerns, and they obtained information from the consultant gastroenterologist who provided care to Mrs O. They also reviewed Mrs O’s medical records. When Mr W raised further concerns in response to the Trust’s first complaint response, the Trust took additional action and reviewed the complaint again, this time with the Service Manager for Gastroenterology, a different consultant gastroenterologist, and the Quality and Patient Safety Lead for Surgery, Anaesthetics and Critical Care.
61. Based on the evidence we have seen, there are indications that the Trust carried out a thorough investigation as it considered all the evidence provided by Mr W, it carried out a review of Mrs O’s medical records and involved all relevant members of staff in the investigation. We consider there are indications the Trust’s investigation was in line with its Complaints Policy and the NHS complaints standards.
62. There was one area of improvement identified in the Trust’s investigation, which related to the process for acknowledging complaints and further contact from complainants. There were no recommendations made for any areas of improvement in clinical care. As the Trust did not find that anything went wrong on this occasion, we consider this was in line with the Trust’s Complaints Policy and the NHS Complaint Standards. There are no indications any additional recommendations were required.
63. Lastly, we can see that Mr W was not signposted to the Parliamentary and Health Service Ombudsman following the Trust’s second response. We can see this did not have an impact on Mr W, as he was able to escalate his complaint to our Office in good time. We do not consider this falls so short of the expected standard that it is a service failure. However, we recognise this is something the Trust should have done, and we have fed this back to the Trust.
64. Overall, we have not identified any indications further investigation is required on this part of the complaint.