Table 4 Key stages of deterioration (tipping points) triggering ICDs prescription

The stages are ordered according to an ideal dying trajectory. In practice, not all residents go through all stages in the described order. Most residents go through only some of the stages, and they do so at very different paces, varying from hours, to days, weeks, months or even years. Senior staff does not consider each stage in isolation, but as a significant step in the overall process of deterioration.

Stage 1: Recurrent hospital admissions in a few months with the same symptoms (usually up to three)

“It’s events building up to that time. If somebody’s had multiple hospital admissions, they’ve come out of hospital, they’ve been on antibiotics, as soon as the antibiotics stop they get another chest infection, back into hospital, invasive treatments– injections, ivs [intravenous injections]. We usually say two or three times with the same sort of problem, same symptoms, somebody seems as though they’re deteriorating. So when it’s sort of the whole package you then think […] that any further hospital admissions is really not quality of life, not beneficial, not doing what you would expect it to do. Now we’re at the time where we need to be thinking of […] palliative care and end-of-life care.” [Nurse 2]

Stage 2: Hospital doctors advise against future hospital admission, often by discharging the resident with a not-for-readmission letter or ReSPECT form.

“When resident [Albert] was discharged mid-November with an updated ReSPECT form insisting on no future hospital admission, he looked much frailer than before and [nurse 9] called in the GP to prescribe end-of-life medication [ICDs] on the same day” [Fieldnote extract 15:214]

Stage 3: Multiple courses of antibiotics (usually up to three) are ineffective to clear a major infection (usually a chest infection).

“The GP was in today and he visited resident [Ivan]. His chest infection has cleared, apparently. [Nurse 5] commented that otherwise the GP would have not prescribed a fourth round of antibiotics but end of life medication instead. This is what they usually do [GPs] when antibiotics stop working.” [Fieldnote extract 17:28]

Stage 4: Steep decline in alertness, mobility, and appetite levels, culminating in the resident lying in bed in a deeply sleepy or comatose state, unable to eat and drink.

“[Jill] [resident with Alzheimer’s disease] was reviewed [visited] for end of life meds [ICDs], because she was deteriorating, but the GP said, “She’s not quite there yet”. And I agreed, she was standing up, she was smiling. Since the last five days she’s not eating, not smiling, she’s just very much gone and she is at that brink of she could suddenly rapidly deteriorate and that would be it. So we need to get them in place today […] she’s on the GP list because she’s now on that cusp and she’s not gonna recover, but she could go suddenly quickly.” [Senior carer 3]