Chapter 3: The experience of patients and families on the wards
From the case studies and its examination of a wide range of the clinical notes, the Panel has pieced together the following picture of communications.
Often at the same time as patients were admitted to the wards with a plan to return home with the support of the family following treatment, the clinical notes, as in a number of the cases, were stating, “I am happy for my staff to confirm death”. Meanwhile the nursing notes for one patient recorded, “slightly confused no hearing aid. Pt is compliant. Not in pain at the moment.”
This disparity between clinical expectations and those of the family reflects more than merely a communications issue. The records show that it translated into communications which were at best ambiguous as to whether the patient was going to live or die. For example, in one case where the family had agreed that their mother should be discharged to a nursing home after treatment, the son was told that “she may need opiates to control her pain [and] he agrees to this” (DOH700242, p7). It is clear from the son’s subsequent reaction that the suggestion of agreement was based on a failure on the part of the clinical staff to communicate fully and honestly. In another case, the notes record, “They are happy if we want to put up syringe driver” (GMC100756, p86), and in a further case, “she is aware he is dying and agrees to our plans to keep him comfortable” (PLA000010, p14).
There is a pattern across the cases reviewed by the Panel. On admission or close to admission, there is an assumption, not shared with the family, that the patient is close to death regardless of the purpose of their admission or the clinical management plan in place. So when the clinical staff said to families that they were making their loved ones “comfortable”, that expression was a euphemism for embarking on the pattern of prescribing which would lead to death in almost every case.
The use of ambiguous or euphemistic terminology helps to explain how the records include accounts which, on the surface, seem to suggest that the clinicians were regularly communicating with families.
The records do not reveal whether the staff were using such ambiguous expressions with an intention to deliberately mislead. What the documents do show is that the pattern was frequent.
Reflecting the patronising attitude of the staff towards families, the records of conversations are often brief, cursory and dismissive, as these examples show:
“Daughter seen, poor prognosis, stop feeding”
“son aware patient dying”
“she is aware he is dying and agrees to our plans to keep him comfortable” (PLA000010, p14)
The Panel notes that, in a few cases, there were well-recorded discussions of treatment plans for individuals. However, for the most part the records show snippets of brief exchanges characterised by ambiguous phrases reflecting the underlying attitude: the families were marginalised by the professional staff.
A daughter said of her father’s treatment that she:
“… had no idea at all why it [the syringe driver] was being used … we had never been consulted about this and were never made aware that my father was in so much pain that it necessitated its use. It just kept pumping.”
The Panel has looked at whether the record of complaints from families, informal or formal, sheds light on their experience of how their loved ones were treated. Unfortunately, the weakness in record keeping means that there is little evidence now available. The Panel has seen evidence in a copy of a letter from the Assistant Business Manager to the personal assistant of the Chief Executive asking for the complaint files of a number of patients (DOH900615, p1). Each name has an annotated reference code, suggesting a system for complaint management was in place. This is further supported by a request, on the same letter, for copies of any old complaints policies. None of these has been seen by the Panel.
The evidence which is available suggests that some families voiced concerns which included the drugs administered but their concerns went wider. The Panel has seen references to individual complaints, mainly informal, in one case dating from 1982 and in more cases from 1989. The lack of documentation in the intervening period prevents the Panel from describing the pattern of any complaints in that time or the response to those complaints.
From 1989 there is evidence of complaints which relate to four key areas of concern: hydration and nutrition; general nursing care; medical care; and use of opioid analgesia at a dose which made patients ‘drowsy’. As Chapter 11 explains, the Panel established that a box of documents relating to complaints received by Portsmouth HealthCare NHS Trust was destroyed in 2013 ahead of its scheduled review date.
There is available documentation of one complaint that shows how when relatives complained about aspects of care, their complaints were poorly dealt with, and how warning signs of a serious problem with the prescription and administration of opioids and other medication were ignored. This was a complaint made about the care of Elsie Devine. Mrs Devine had previously been scheduled for discharge home, but shortly afterwards was given continuous subcutaneous diamorphine and midazolam because she had become confused and agitated; there was no apparent cause of pain and no recorded evidence that she was in pain (see Case Study 5). She died two days later. As local resolution did not resolve her daughter Ann Reeves’ complaint, an Independent Review Panel (IRP)7 was convened to consider it.
Although no guidance at the time or subsequently would support the use of opioids for confusion without pain, the IRP took a different view, and concluded that the clinical response was appropriate (CPS100289, p19). The documents show no basis for the IRP’s different view. When the complainant remained dissatisfied with the IRP report, a member of the IRP produced a further report:
“[She] was wandering, agitated, acutely confused, disorientated and frightened. In a frail elderly person this is a very serious medical condition and may be as dangerous as a heart attack but it does not form part of the public perception of a serious or life threatening illness. For this reason she clearly required a large dose of strong medication, as she was a danger to both herself and people around her. The fact that she was still responding to her daughter … (by squeezing her hand at the sound of her voice) that day and the next day suggested that the medications she was given was reasonable and was in the best interest of the patient to keep her comfortable. In conclusion, the [Independent Review] Panel found that the drugs, doses and devices used to make [the patient] comfortable on 19th November were an appropriate and necessary response to an urgent medical situation.” (HCO003981, p8)
The Panel can find no basis in the documents or from its wider experience to justify this conclusion, which explicitly condones the use of large doses of diamorphine simply to control symptoms of confusion and agitation. The Panel notes that this conclusion was contrary to all relevant guidance.
An Independent Review Panel is a part of the NHS complaints process: when local resolution is insufficient to satisfy the complainant, a convener establishes a panel drawn from outside the relevant Trust to report on the complaint.