While some of the patient cases described asking directly about their prognosis at the time of first receiving their diagnosis, both the case study material and the professional accounts suggest that it is not common for patients to ask directly about prognosis, or return to the topic, throughout the progression of their illness. The difficulty of prognosis was a major barrier for professionals and patients undertaking ACP. This is a leitmotif running throughout the data. Even for cancer patients, assumed to have a relatively predictable trajectory, prognosis often proved to be uncertain and inaccurate. For those affected by a range of chronic degenerative diseases, such as COPD or heart failure, or extreme age and frailty, the difficulty of prognosis was immeasurably greater.
A difficulty I’ve had with patients in discussing these things and in patients accepting that they’re dying is the fact they’ve had so many ups and downs in their condition before. And they might have been told you’ve only got months to live but then they’ve pulled back and done quite well. So when it’s quite hard to call when it’s definitely the end but also getting the patients to understand that, because quite often, they’ve been there before, haven’t they, and they’ve got better again.
CNS_HF focus group
This reflects the professional orientation to ACP as a reactive, rather than a pre-emptive, measure. Health professionals reported that it could be hard, especially in the case of chronic degenerative diseases, for patients to be aware and accept that they are dying. This is partly because decline may be incremental, and partly because they are prone to acute episodes from which they recover, and they become accustomed to this pattern. In addition to the deterrent of intrinsic uncertainty, professionals were reluctant to discuss
prognosis because of the credibility and trust that they would lose if subsequently proved wrong. In addition, inaccurate prognosis could be distressing and have very negative consequences for patients and their families. Professional accounts suggest that the purpose of broaching the topic of a limited prognosis was not so much to engineer an opening for ACP but rather to encourage the patient to understand and come to terms with her or his mortality. While such understanding may be a prerequisite for future planning, it seemed that the professional goal, operating largely independently of, or in parallel to, ACP, was more concretely and directly to support the patient through the experience of dying. Discussion at this point might focus on what could be expected in terms of symptoms and physical deterioration, and the range of
resources and support services that could be made available in support.
We’ve always said, right from the release of the GSF, anybody with heart failure, no, you wouldn’t be [surprised], because the nature of heart failure is they could either deteriorate quickly or they could have a sudden death.
CNS_HF focus group I could have given her a prognosis at the beginning and, you know, on the basis of my experience with metastatic lung cancer, people don’t live usually more than 3 months. So, she’s trumped that by living, I think, probably 18 months from, from when she got that point. And then we’ve got even the day before [the patient] died, if you’d asked me, I’d have said,‘Well, I think she’s probably got about 3 or 4 weeks’and she died the next day.
GP14
The difficulty of prognosis and reluctance to broach a speculative and uncertain future undermined the value of planning in advance, as did the knowledge that patients’preferences and responses were liable to rapid and substantial change. In addition, professionals were well aware that, regardless of a patient’s initial preferences, their realisation depended on the availability of resources and the progression of the clinical condition. Hospice beds might not be available, circumstances might force a hospital admission, carers might find themselves unable to cope with the demands of caring for a dying relative at home, or patients themselves might change their minds. Consequently, professionals described being careful to manage expectations and to emphasise that patients were being asked to state their‘preferences’for care. While these were less likely to be realised if they remained unspoken and undocumented, there could be no guarantee that advance care plans could actually be implemented. In consequence, ACP discussions tended to be concentrated in the very last stage of life, when it was beyond doubt that death was imminent.
And if somebody’s saying to me that they want to die in the hospice, whilst acknowledging that is their preferred place, I would also say, given limitations, we can’t always guarantee, and try and put that across so they’re aware what other options would be. And as a second choice, some say,‘Okay, well, I’d stay at home then’, if that was the choice, one or two have said hospital. But, I think, sometimes, it’s taken out of their hands if they go in with an acute episode of something and then don’t recover from it or deteriorate.
PCN4 Quite often it works, it works well, but, you don’t have that certainty that the services are always going to be there when you need them.
GP5
The unpredictability of long-term conditions might indicate that ACP could be taken to have a particular application. Nevertheless, there was no indication in the study findings that this circumstance prompted a more proactive stance to anticipatory planning in relation to this group of patients.