Seeing patients in the emergency department the other day, it struck me that for all my attempts to explain to patients and relatives in clear terms and recognisable words what was going on, there was one area in which communication remained unsatisfactory – prognostic uncertainty. That is, in those situations where I feel that there is a significant risk of further deterioration, and possibly death, but where it is too early to justify a full and frank discussion about ceilings of care or end of life management. After all, we typically review patients just a few hours after they have been admitted to hospital. At this stage the patient has barely had a chance to respond to the treatments that have been instituted. We have no idea what direction things are going to take.
So I ask myself – should I let the family know that their loved one could deteriorate? Of course..that’s pretty obvious. But if I do that I must also broach the subject of escalation to ICU, or, if that is not to be considered appropriate, end of life care. Do I know enough about them yet to have that discussion? Perhaps I should keep my concerns to myself and wait for the patient to be reviewed again in 24 hours, by which time the trajectory of their illness, whether improving or deteriorating, will be clearer.
Personally, I believe it is more honest to explore uncertainty early on, otherwise the family may go home confident that their relative will improve, and unaware of what may happen should there be a sudden worsening in their condition. But… to introduce the concept of uncertainty and possible deterioration requires great care. Perhaps too much care, for if the language one uses is too subtle and oblique, the message can go astray.
The average ward round in an ED or acute medical unit will require one or several ‘proper’ sit down conversations, ideally in a room or private space, so that the doctor can discuss all eventualities. Such discussions, in my experience, are reserved for situations in which the patient appears to be dying, clearly pre-terminal, or at significant risk of suffering a cardiac arrest from which he or she will not be successfully resuscitated by CPR. The conversation with relatives will serve to explain that the short term prognosis is poor, and that CPR may not be inappropriate. But uncertainty requires a different kind of conversation, one that takes place at a less profound emotional level and does not usually cause the clinician to invoke the full panoply of communication skills. Uncertainty leads to a ‘preparatory’ conversation, and usually takes place at the bedside. The challenge is to balance clarity with mere suggestion, frankness with compassion and the risk of information overload with a comprehensive exploration of possible eventualities. Not only this, the messages conveyed must be understood by all of those present – the patient (often elderly), a spouse and sometimes younger members of the family. They may interpret words and signals very differently.
For example, imagine a man of 86 years who has been admitted with pneumonia. His exercise tolerance is quite poor (a hundred yards, slowly), perhaps due to chronically diseased lungs. He had a major heart attack ten years ago but got over it. The chest x-ray shows a large area of infection, but he is talking and jovial. He has received antibiotics, and requires a modest amount of oxygen.
The conversation, with the patient, his wife and a daughter, may go like this:
Doctor: It looks like a chest infection.
Patient: OK doctor. Is that all?
Patient (recognising this word as a more grave condition): Oh!
Doctor: That’s we call chest infections. It’s a serious illness. Because your lungs are already a bit scarred it could go on to make you quite ill.
Wife: So it’s serious then?
Doctor: It is, pneumonia is always serious. But it should respond to the antibiotics.
Patient: That’s alright then…
Daughter: What do you mean by ‘serious’ doctor?
Doctor: It could get worse, if the infection spreads.
Daughter: And then what will you do?
Doctor: If his breathing deteriorates, and his oxygen levels fall…that would be a very worrying development.
Daughter: What would happen?
Doctor: Well…sometimes patients need more help with their breathing…
Daughter: A ventilator you mean?
Doctor: Perhaps, but we would need to ask the intensive care doctors to come and see your Dad and tell us what sort of treatments would help…
Wife: He doesn’t seem that unwell at the moment doctor.
Doctor: No, he’s tolerating the infection very well. It’s just I think it’s important that you know that pneumonia is a potentially serious illness, and patients can get worse before they get better…
Daughter: He barely sees his doctor you know. There’s nothing really wrong with him.
Doctor: That is very encouraging, but the x-ray does show some signs of damage from before the infection, and that’s why I’m being a bit cautious…
There are oblique phrases in here, some of which are not entirely honest of we examine the thoughts behind them:
‘quite ill’ – the doctor means ‘critically ill’
‘worrying development’ meaning ‘life threatening deterioration’
‘patients can get worse before they get better…’ meaning, in fact, ‘not all who get worse will get better’
‘It’s just I think it’s important that you know’ meaning ‘I really want you to take this in, I’m really worried’
‘tell us what sort of treatments would help’, meaning ‘I can’t commit to escalation to intensive care and mechanical ventilation, it’s not entirely my decision…but nor do I want to engage on an escalation of care discussion at this moment…’
‘cautious’ meaning ‘I’m very worried about your father, there’s a real possibility that this infection will prove fatal’
So why use these oblique terms? Why not be clear, and say what he is actually thinking? Because the doctor has to be cautious in both directions – not too encouraging or unrealistically positive, but not too gloomy or doom-laden either. For after all, the doctor has only just met the patient and the family, and as I explained above, there is not yet enough evidence to justify an end of life type discussion.
Should the doctor discuss resuscitation? Yes, probably, but his reticence on this issue will be equally understandable. The patient is independent usually, limited yes, but with a good quality of life. And as his daughter says, there is little in the way of formally established or active co-morbidities. He may have well have chronic airways disease, but no one has told him so. There is not enough in the history to convince the consultant that he should be ‘Not For Resuscitation’.
The result of all these deliberations? – neither one thing nor the other. Subtle hints, tangential phrases that may be interpreted by the daughter in one way and the patient or his wife in another. The patient may be transferred to the medical ward reassured that the antibiotics will make him better, the daughter may go home worrying about the consultant’s thinly veiled pessimism, or ‘caution’. And the doctor walks on to the next patient thinking he has sent out enough cautionary signals to cover all the bases. How wrong he might be.
In this article I have tried to show how challenging it is for doctors to adequately explore and communicate uncertainty in acute situations. There is little time, scarce fore-knowledge of the patient or the family, and a degree of defensiveness. The quest for improved communication continues, but here we have an example of how challenging the job can be!