21. Before we decide if we should do 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 signs that something has gone wrong with either the completion of the ReSPECT form in May 2022 or in what happened in November 2022.
May 2022 ReSPECT form
22. Mrs J says her brother's long history of mental illness meant he did not have capacity to make decisions about his care.
23. The Resuscitation Council states, ‘The ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they do not have capacity to make or express choices. Such emergencies may include death or cardiac arrest but are not limited to those events. The process is intended to respect both patient preferences and clinical judgement. The agreed realistic clinical recommendations that are recorded include a recommendation on whether or not CPR should be attempted if the person’s heart and breathing stop.’
24. It also says for clinicians completing the form to, ‘assume the person has capacity…if you suspect the person has an impairment or disturbance of mind or brain, you must test their capacity for each specific decision. If the person lacks capacity for a specific decision…the decision must be made by following the requirements of capacity legislation.’ This is the Mental Capacity Act 2005, which we refer to in more detail below.
25. GMC) guidance tells doctors they must ‘work on the presumption that every adult patient has the capacity to make decisions about their care and treatment.’
26. It says they must not, ‘assume that a patient lacks capacity to make a decision solely because of their age, disability, appearance, behaviour, medical condition (including mental illness), beliefs, apparent inability to communicate or because they make a decision that others disagree with or consider unwise.’
27. And NICE guideline 108 tells clinicians to start from a point of assuming capacity, unless there is evidence an assessment is needed.
28. It tells those involved in making decisions about individuals who lack capacity, or are supporting decision-making in individuals with capacity, to follow the five key principles of section one of the Mental Capacity Act 2005. This states: • ‘A person must be assumed to have capacity unless it is established that he lacks capacity.
• A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
• A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
• An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
• Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.’
29. Our adviser explained that in practice, a mental capacity assessment should be done when the capacity of a patient to consent to treatment is in doubt, particularly if a doctor feels a patient is making an unwise decision. For example, if a seriously unwell patient wants to self-discharge from hospital.
30. The doctor who completed the ReSPECT form in May 2022 considered Mr T had capacity to participate in conversations about the recommendations made on the form. They documented he understood the conversation, was able to weigh up the information, could communicate about it and could remember it. This was their professional judgement at that time and this was in line with the above guidance.
31. Someone who knows the patient, or a psychiatrist if the patient has a mental illness, is not needed to decide on the patient’s capacity.
32. Mr T’s history of mental illness was not reason to say he lacked capacity. We have seen no evidence Mr T lacked capacity to give his preferences for his future treatment in the event of an emergency.
33. As Mr T was considered to have capacity, there was no need for family or an independent mental health advocate to be involved in the decision-making.
34. While we acknowledge Mrs J’s view that her brother did not have capacity to make decisions, we have not seen evidence to support this. We have seen no signs of failings in the completion of the ReSPECT form in May 2022.
November 2022
35. Mrs J says the Trust used the May 2022 ReSPECT form to decide to withdraw her brother's treatment. She says ward staff referred to the May 2022 form when explaining the reason for stopping treatment.
36. We looked at what happened at the time when the Trust decided Mr T was at the end of his life.
37. NICE guideline 31 says changes in the patient’s condition may suggest the patient is entering the last days of life. These include changes in breathing, agitation and changes in functional observations (for example, communication and ability to mobilise).
38. The records show when the medical team decided to move to end of life care, Mr T had been admitted to intensive care for more treatment in the form of non-invasive ventilation and had been on treatment for worsening of his COPD. After four days it was seen this was not working and his condition was not going to improve. He continued to need high levels of oxygen but could not tolerate non-invasive ventilation.
39. Our adviser said the records show Mr T’s condition had got worse, not better, despite active treatment. They said in this situation continuing active treatment is ineffective and there is no other option but to move to end of life care.
40. A doctor completed two more ReSPECT forms, on 7 and 9 November, both reflecting that Mr T did not have capacity to be involved in the process. The forms referred to the May form, as a source of information relevant to the care planning.
41. Where a patient lacks capacity, it is for the clinicians responsible for their care to decide what is in their best interests. The GMC guidance on treatment and care at the end of life says where patients lack capacity to make decisions, decisions must be made based on whether treatment would be of overall benefit to the patient.
42. It states ‘…it may not be in a patient’s interests to provide potentially life prolonging but burdensome treatment in the last days of their life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable.’
43. The guidance also says the clinician must take reasonable steps to find out if there is evidence of the patient’s previously expressed wishes. Both forms completed in November refer to Mr T having previously expressed his wishes and refer to the earlier ReSPECT form on file.
44. All the guidance referred to talks about the importance of involving those close to the patient, when the patient lacks capacity to state their preferences. The form prompts clinicians to speak to a patient’s family when the patient lacks capacity.
45. We saw that when the doctor completed the ReSPECT forms during the November admission, they did not tick the box to say they had consulted with Mr T’s family. Although not stated, it seems likely this was because his preferences were already known from his admission before.
46. And, there is evidence that ward staff regularly spoke with members of Mr T’s family to update them and they were aware of the plan to move to end of life care. There is no sign of any disagreement about this, until Mrs J contacted the ward to raise her concerns.
47. In these circumstances, we do not consider it a failing that the doctor who completed the form did not have a conversation with Mr T’s family at the same time.
48. Overall, it is for the clinical team to decide what is in the patient’s best interests. Our adviser said in Mr T’s case, this meant keeping him comfortable. A family’s preferences cannot overrule this. We are satisfied the Trust’s actions were in line with the GMC guidance.
49. We considered if the May 2022 ReSPECT form had any impact on the Trust's decision to move Mr T to end of life care.
50. As explained above, what was known about Mr T’s previously expressed preferences was relevant, as he was no longer able to participate in such conversations. But, our adviser said this was not the main factor. They said the key consideration is that the medical team looking after him felt he would not benefit from invasive medical intervention in intensive care, so the priority should be to keep him comfortable.
51. We considered Mrs J’s concerns about the care the Trust gave Mr T once it decided to move to end of life care.
52. NICE guidance says there is a duty to make sure a patient is kept comfortable. The medication the Trust provided included midazolam (a type of sedative) and morphine (a strong opioid-based pain killer) for Mr T’s agitation and breathlessness, are in line with this.
53. We know Mrs J is particularly concerned her brother was deprived of fluids as he was dying. The GMC guidance on treatment and care at the end of life says clinically assisted hydration (fluids provided by a tube or drip) are regarded in law as medical treatment. This means any potential benefit to the patient must be weighed against the potential burden or risk.
54. The NICE guidance also addresses the issue of fluids during end of life care, highlighting the lack of definitive evidence. It says: • ‘clinically assisted hydration may relieve distressing symptoms or signs related to dehydration, but may cause other problems • it is uncertain if giving clinically assisted hydration will prolong life or extend the dying process • it is uncertain if not giving clinically assisted hydration will hasten death.’
55. The NICE guidance says a trial of clinically assisted hydration can be considered if the person has distressing signs or symptoms that could be associated with dehydration.
56. Our adviser said there is nothing documented to suggest Mr T had any distressing symptoms of dehydration so fluids were not needed. Instead, the guidance talks about providing mouth care and supporting the patient to drink if they want to and can. We can see the palliative care nurse also explained this approach to Mr T’s sister and care was given in line with this.
57. Mrs J believes her brother should have been moved to a hospice, where she says he would have died with care and kindness, in his own time.
58. Our adviser explained that hospice care is generally reserved for people with complex palliative care needs that cannot be managed in hospital (or another setting). They said Mr T did not have any needs that could not be managed in hospital. And, a patient considered to be at the end of life, with only hours or days left to live would not normally be transferred from a hospital to a hospice, as there is a high risk they may not survive the transfer. Mr T needed high levels of oxygen therefore a transfer would have been high risk.
59. Our adviser said transfer to a hospice was not a realistic prospect because Mr T was too unwell throughout. We can see the palliative care nurse considered the possibility of a transfer and decided Mr T was too unwell to move.
60. In summary, we have seen no signs of failings in how the Trust acted during Mr T’s admission. We have seen the team treating him appropriately decided to move to end of life care when Mr T did not improve with active treatment. This took into account his previously expressed preferences and the clinical judgement about what was in his best interests. We have seen the care provided at the end of Mr T’s life was in line with relevant guidance.
61. We acknowledge Mrs J’s expectations about the care her brother should have had at the end of his life. We recognise how distressing this is for her. We appreciate it will be of little comfort to her to know the Trust’s actions were consistent with national guidance.