Announcing the transition

The hospice structure of dying was framed by an expectation of the overall duration of dying and by an active state of change in a patient’s condition. The acceptance of a patient as staying for ‘end of life care’ could be seen to be the point at which the status of certain death at known time was explicitly announced. This decision was often taken at MDT meetings, on ward rounds or during handover meetings but frequently involved both nurses and doctors. The sequence through which patients were expected to pass before death was recognised through similar ‘announcements’ of transition. These announcements did not mark the actual point at which patients were thought to have made a transition, rather the point at which this was made explicit, in the familiar language of the hospice. These words were used in everyday handover meetings and their interpretation appeared to be shared by staff. The sequence was marked by the announcements of the transition from; ‘aiming for home’, to ‘deteriorating’, to ‘heading for the LCP’ and finally being ‘on the LCP’. This is seen in Figure 4:1, and will be demonstrated in subsequent chapters to be important, indeed fundamental, to the hospice understanding of the way in which sedative drugs ought to be used. These ‘announcements’ were heralded by ‘cues’ which accumulated prior to the recognition of transition; this announcement of transition appeared to create a form of shorthand which was recognised by all staff. The change in ‘routine sedation’, or the way in which sedative drugs were given on a daily basis, as a patient passed through the expected sequence of the status passage is considered below.

Figure 4:1: Understanding of the process of dying

DE

A

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4.3

‘Aiming for home’: treating symptoms, avoiding reduced

consciousness

Patients in the hospice who were admitted for a period of respite or for symptom control were not necessarily considered to be dying in the hospice. They received sedative drugs, however, for symptoms they described. For example Emma was a patient who had been admitted to the hospice for a period of respite care. She had metastatic10 lung cancer, chronic obstructive airways disease (COPD) and suffered from breathlessness. I observed the morning handover as her problems were described by Helen, one of the nurses.

4:10 She [Emma] had been to day-care yesterday but had a ‘panic attack’. She had been given lorazepam for this while in day-care and told Helen [staff nurse] that she wasn’t if sure she was still panicking but she found she could talk much more easily afterwards. She told Helen that she hadn’t been able to talk as easily in quite a while and had asked her what it was that she had been given and if she could have it again. Helen said that ‘they’ had encouraged her in the hospital to try lorazepam to help her breathing but she had refused it and hadn’t wanted to be drowsy. She felt that, having tried it and found that she could talk more easily, she would want to try it again. Helen said that her breathlessness made her panic rather than panic made her breathless.

[FN 27/11/09 line 36] Emma was expected to be discharged and had been given sedation as a way of treating her symptom of breathlessness. In the extract above it was clear that she had not wanted to become drowsy and had avoided this drug in the past; having taken it she found that it had helped her breathlessness without the anticipated side effect. The use of sedation had been ‘encouraged’, Helen said; it appeared to be a standard way to treat this symptom. In this situation, it appeared that the sedative drug had been given to treat a specific symptom without causing a reduction in consciousness.

In a similar way, sedative drugs were frequently given at night to help patients to sleep. This form of sedation was not expected to cause any reduction in consciousness during

109 the day. For example, James was a 60 year old man who had metastatic oesophageal cancer. He had been admitted for symptom control as he had been vomiting and unable to swallow. His symptoms had been treated, recurred and been treated again during his admission. I observed a morning handover meeting where his treatment of insomnia with sedation was discussed.

4:11 He had got into a new habit, Izzy [staff nurse] said, of having midazolam at 11 o clock. It started a few days ago when he couldn’t swallow his night

medication. Instead of the temazepam11 he was on, he had been given midazolam in its place to help him sleep. He was now able to swallow (as steroids had helped with this) but, in addition to the temazepam which he was now able to take again, he wanted to have the midazolam too (2.5 mg). He had been having an extra dose through the night as well, which had made him drowsy in the morning. Izzy said they had refused to give him any extra though last night and he had been unhappy with them.

[FN 13/01/10 line 53] James was a patient who was considered to be ready for discharge. This was not

straightforward, however, as he had nowhere to go and did not want to go into a nursing home. He had begun to ask for sedative drugs which then made him drowsy in the morning; the nurses felt uneasy with this and appeared to be trying to limit his use. Over a week later this tension still existed.

4:12 He was still asking for subcutaneous medication and extra lorazepam although the plan was to give everything by mouth now, and discourage the use of extras and injections, in preparation for transfer to a nursing home.

[FN 22/01/10 line 37] While the use of injectable medication may have been influenced by practical considerations of not being able to provide them in a nursing home, it appeared that there was also an attempt to reduce his need for extra medication such as lorazepam through the night. This approach, to limit or reduce a patient’s use of sedative drugs

110 can be seen to be characteristic of this group of patients who were expected to be

discharged. Indeed, the aim of discharge appeared at times to motivate a reduction in sedative drug use. For example, Paula was a 63 year old lady who had a small cell lung cancer12 with extensive disease at her initial presentation. She had been given

chemotherapy to treat the cancer but it hadn’t responded to treatment and she was admitted to the hospice for control of her symptoms. She had become used to taking sedative drugs to treat her anxiety and requested these frequently, appearing at times to become very drowsy after taking them. The following excerpt from field notes was from an MDT meeting which took place six days after her admission to the hospice. In this discourse between Susan (a senior nurse) and Julia (a senior doctor) the aim of discharge can be seen to focus treatment:

4:13 She [Paula] had improved over the weekend…. She had needed a lot of lorazepam, however – she had had 6 mg of lorazepam yesterday and was really quite sleepy; Susan said she ‘couldn’t keep her eyes open’. Julia [senior doctor] said that on the ward round it was discussed and agreed that they would try to use less lorazepam and instead try to use alternatives such as relaxation therapy or breathing exercises. The fact that she wanted to go home at some point seemed to be important in this too – if aiming for home then it would be much better and safer for her not to be requiring so much lorazepam, Julia said. The team agreed that they should begin to make plans for her to go home – she was as stable as she could be – to have this time at home would be important before she deteriorated again.

[FN 24/11/09 line 20] Paula’s desire to go home appeared to be adversely affected by her requests for sedative drugs; the aim, however, of the MDT was to enable her to go home if she could. It appeared that despite having a terminal illness and a poor prognosis, they didn’t expect her to die imminently, and expected to be able to discharge her, even if they anticipated that she would ‘deteriorate’ soon after. For Paula too, it seemed, the drowsiness, or reduction in consciousness she experienced with the sedative drugs, was considered as a side effect at this stage of dying.

111 The effect of sedation was seen to be important in this group. Paula became drowsy after taking the extra lorazepam; Simon, described earlier, was also found to be drowsy after having a sedative drug for insomnia at night. Mollie, one of the staff nurses, told me how Simon was after his first night of having a syringe driver with midazolam at night as we chatted in the nursing office.

4:14 he was much better last night with the midazolam overnight, but he had woken up a bit groggy, so the timings of the syringe drivers were going to be changed from tonight.

[FN 17/02/10 line 18] Drowsiness, or feeling ‘groggy’, as a result of sedative drugs, in this group of patients who were expected to be discharged, was considered as an adverse effect. This was similar to the experience of patients who became drowsy after taking analgesic drugs; it was considered as a side effect and the drug was reduced, or stopped.

Thus for those who were not actively dying sedative drugs were used to treat specific symptoms but a reduction in consciousness was not intended and was actively avoided. This is seen diagrammatically in Figure 4:2.

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