Chapter 3: The experience of patients and families on the wards

A feature of Case Study 1, as it was of Pauline Spilka’s statement and the nurses’ concerns in 1991, is the insertion of a syringe driver. Figure 8 in Chapter 2 shows that following the introduction of three drugs – diamorphine, midazolam and hyoscine – particularly all three drugs together, death was inevitable, usually within a short period. For the patient in Case Study 1, that period was less than eight hours.

As Chapter 2 and Case Study 1 show, the typical pattern was to provide for a wide dose range through anticipatory prescribing. While responsibility for the prescribing lay with the clinical assistant or the consultants, the typical pattern left two major decisions to the nurses on the ward: when to start the medication and syringe driver, and what dose to administer within the range prescribed. In Case Study 1, the nursing notes show that the sister recorded diamorphine started at 90 mg when Dr Jane Barton, the clinical assistant, had prescribed 20–200 mg. At the time of prescribing, Dr Barton is recorded as saying, as in other cases seen by the Panel: “I am happy for nursing staff to confirm death” (SOH900234, p27).

Chapter 1 has shown that members of the nursing team were the first to draw attention to problems with the pattern of prescribing and the administration of drugs by continuous subcutaneous infusion (that is, through syringe drivers). However, the records also show that nurses in the hospital administered the drugs and continued to do so for many years, although the link with the pattern of deaths would have been apparent to them. Within the professional standards which applied at the time, the nursing staff also had a responsibility to intervene and challenge the prevailing practice on the wards.

The Panel has seen accounts from the nurses about the part they played in administering prescribed drugs. For example:

The Panel has found no evidence of the nurses routinely acting to avoid the problem identified in Finding Four in Chapter 2: the escalation of dosage which occurs when changing from an oral to a subcutaneous opioid if the same dose is maintained. The practice of anticipatory prescribing compounded this risk and relied upon the nurses’ understanding of dose equivalents when changing from oral to subcutaneous administration.

Beyond the administering of drugs, the Panel found an overall picture of nursing care which requires comment, even when assessed against the standards prevailing at the time. Case Studies 2 and 3 illustrate the wide-ranging issues which the Panel’s research has identified more generally at the hospital and the fuller versions of these case studies are therefore included in this chapter. In order to understand the full significance of the picture which emerges, it is necessary to recall the professional standards which applied at the time.

The United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC) published The Code of Professional Conduct for Nurses, Midwives and Health Visitors in 1992. The Code sets out very clear expectations of how registered nurses should conduct themselves in their role, and the skills and knowledge expected by the profession. All registered nurses are required to maintain themselves on the professional nursing register. The Code makes clear their responsibility for public safety, advocacy for the patient, and the right to challenge and seek redress when they disagree with the actions of others, including medical staff, that they consider to be not in the best interests of the patient. Specifically, the 1992 Code provides that:

The UKCC Standards for the Administration of Medicines, also published in 1992, are clear in establishing the principle that administering drugs:

The Standards also establish the principle that “as a registered nurse, midwife or health visitor you are personally accountable for your practice”. In exercising their professional accountability, nurses must:

Section 8 of the 1992 Standards provides explicitly that a nurse “must, in administering, assisting or overseeing and self-administration, exercise professional judgement and apply knowledge and skill to the situation that pertains at the time”.

The importance of timely and accurate record keeping for nurses has also been established, for example in the Nursing and Midwifery Council (NMC – the successor organisation to the UKCC) Guidelines for records and record keeping, 1998. This provides that records should:

A registered nurse would have both a professional and a legal duty of care. Their record keeping should therefore be able to demonstrate:

To complement the Standards, from the early 1990s there were clear expectations from the UKCC and the Department of Health that nurses should be committed to lifelong learning and continuous professional development. Nurses were required to continually update and improve their practice through personal and professional development.

The Panel has been unable to find records of training in clinical and other expected learning programmes. It is therefore unclear how the nursing staff at the hospital were supported in keeping up to date with contemporary practice and expectations for the care they were expected to deliver.

The Panel has not applied a standard of perfection when comparing what the records show happened at the hospital with the formal standards and expectations. It has also borne in mind that nursing staff should not have been put in the position of being the sole arbiters of when to start continuous opioids and what doses to employ, particularly in the absence of adequate training. However, the Panel found a picture of care which fell well below the expected standards of nursing practice at that time. It is a picture which demonstrates a lack of concern and regard for individuals’ assessed needs, as well as a lack of challenge to the prevailing prescribing practice at the hospital. It also illustrates the bravery of the nurses who raised concerns in 1991 (see Chapter 1).

The Panel found a lack of patient-centred care, in both planning and responding to changes in the condition of patients in the nurses’ care. The standard of assessment was inadequate, scanty and missed key information that ought to have been reflected in individual care plans. The Panel found no evidence in the nursing notes to suggest that nurses were using pain assessments to inform decisions about the need for drugs to reduce or manage pain; or the required dosage. Nor did the nurses appear to be assessing the effects of those drugs. References in the nursing notes to patients being “unresponsive” are a poor substitute for the standard of assessment which should have been in place.

 Record keeping was inadequate and did not meet the expected standards of professional guidance as set out at that time. Nursing assessment records were incomplete or absent, or recorded no data in patients who clearly had needs; they also failed to record the clinical justification for starting continuous opioid medication.

There was no evident monitoring of the effect of medication in most cases. In the clinical notes, the Panel found inadequate statements such as “appears to be in pain” or “distressed when turning”. These loose descriptions in themselves expose a picture of poor understanding of pain management and poor use of appropriate scales when assessing both verbal and non-verbal responses to pain.

The Panel was concerned about the reliance on nurses alone to make key decisions about such significant medication. There is very little evidence in nursing notes that discussions took place about dose and type of medication, or to show that there was communication within the team. The impression given is of a prevailing culture dominated by the clinical assistant and the consultants which overshadowed any understanding that the nurses could or should exercise their autonomous professional status.

The shortcomings in nursing care extended to passive and inappropriate responses to the needs of patients, particularly at key times such as at hospital admission. This was particularly evident in patients who had fallen, patients who had expressed distress, and patients who were agitated.

The Panel found some clinical records showing obvious changes, such as distressed behaviour, changed responses and clinical deterioration, that were not reflected in revised care plans. This suggests a lack of continuity between shift teams when handing over problems. The care plans illustrate a task-orientated and perfunctory approach to care, custodial in their approach with little reference to the individual.

Nor do the records show any planning for end of life care, including for appropriate contact with the family. The absence of any reference to the psychological needs of individuals, or discussion about their condition, anxieties and fears, suggest a lack of awareness of end of life care, a lack of regard for individual wishes, needs or concerns and a failure to provide an opportunity for patients to express their worries.

The records show that common practice at the hospital was to anticipate the patient’s death when prescribing the drugs. This is clearly shown by repeated entries in the clinical notes saying (as in Case Study 1) “I am happy for nursing staff to confirm death”. This meant that the doctor had delegated authority to the nurse to establish death. The deceased could then be moved from the ward instead of waiting until a doctor was available to externally examine the body in person. The verification of death by nurses is not in itself a concern, though the Panel notes that the practice did not conform with the hospital’s policy at the time: this required two nurses to be involved in the verification procedure. However, the repeated pattern of a direct link between the appearance of this statement (as well as “please make comfortable”) in clinical records with the prescribing of continuous opioids and the deaths which shortly followed is noted.

This range of shortcomings in the care provided at the hospital, coupled with the prevailing prescribing practice, is evident in a number of case studies examined by the Panel. Two such case studies are included here in full. Case Study 2 illustrates poor record keeping as well as a failure to respond to the patient’s needs, a failure to correct the misdiagnosis of a fracture and the commencement of diamorphine, hyoscine and midazolam at high dosage. The patient in this case study is recorded as dying 30 minutes later. Case Study 3 shows no evidence that nurses engaged in any adequate ongoing treatment or end of life care discussion with the patient’s family. As with other cases, the Panel found a lack of detail in the patient’s daily nursing notes and care plan. The care plan for this patient lacked entries for 19 of the days that the patient was admitted. There was nothing in the care plan which took account of the patient’s capabilities, likes, dislikes or preferences.