You have to make an instant decision.

Time constraints and patient capacity, in the context of the availability of a treatment with both risks and benefits, shaped the processes and practices of knowledge translation and decision making in this setting.

You have to make an instant decision, almost. (Family(Fam)B04)

It is an emergency situation and you are made aware very much so of what an emergency it is and you have to make that decision now. (FamB07)

[rtPA] is effective, but there are potentially lethal, you know, lethal complications. In such, such occasions it becomes all the more difficult, less time for the patient to make the decision and less time for the clinician to make the decision so we have to really work hard in those three hours. Time is the crucial [factor] in this scenario. The earlier the better, you cannot be losing on the time (Doctor(Doc)C03)

Often there were only a few minutes for the clinical team to communicate information to a patient and their family about treatment, to discuss the pros and cons, then make a final decision and implement treatment.

We got there erm, and walked into a cubicle where [the patient] was and before I even had a chance to give him a cuddle or a kiss or anything it was “we’ve got to get on this it’s a quick”. [we are told] “we’ve got 10 minutes to sort this out”. “There’s a drug we can give him, his blood pressure is high but his age is for him, but if it goes up any more we’ll not be able to give him it”. [They say] “You have to decide, we can’t recommend it but there’s 3 scenarios. The first scenario is he could make a full recovery. The second scenario is it could leave him the same way as he is now and the third scenario is that it can cause a blood clot which could be fatal and by the way [interviewee laughs] you’ve got seven minutes”. (FamC02)

Patient understanding of information, which is problematic in many healthcare encounters, is even more problematic in hyperacute stroke where the site of damage may affect cognitive processing. Clinicians reported that many stroke patients have problems with attention, concentration and memory which make grasping and retaining complex information difficult. Moreover, in the emergency setting, the immediate shock and trauma of the stroke was understood, by clinicians, to impair the capacity of patients to assimilate information.

The issues in terms of thrombolysis… It is something that has happened, a stroke, has happened very quickly in somebody who often was perfectly well until the moment that happened. So they’re in shock. So they are in shock. The stroke itself may have affected how people think and communicate, and are often not able, not able, for a number of reasons, to either communicate for themselves or to take in the information that’s being given to them. (DocA02)

You’re never quite sure whether they’re in a state of shock […] So even, if you don’t have the issues of dysphasia [it] is still a question of whether the person can really engage given the severity of the circumstances. They’re suddenly yanked into hospital having been blue lighted and people say, ‘You’re seriously ill, we’ve got to give you this treatment which may prevent you from becoming very disabled’, how on Earth do you take all that on board? (DocC01)

A stroke is sudden, unexpected and potentially life changing; a “shock”, reportedly, even for those patients at high risk or who had had a previous stroke. Stroke can manifest itself in ways that are physically debilitating and mentally incapacitating, and may be frightening to patients and their family. Effects may include impaired speech, immobility of limbs and exaggerated affect (emotionality). Furthermore, strokes vary in their intensity and severity. For patients the effects of shock and anxiety may have as much impact on their capacity for decision making as the direct effects of the stroke. Coming to terms rapidly with the stroke event itself was at the forefront of patient and family concerns: this necessarily shaped their engagement in decision making.

Some patients reported having difficulties in absorbing and understanding the information imparted by health professionals in the immediate hours following the event; that they were not in a position to ‘take in’ the information; and that they preferred to delegate information-processing to their family to help them to make the decision or to make it on their behalf. However some family members reported that their own capacity to make decisions was also compromised by the situation they found themselves in.

Anything like that would have had to have been directed towards like my wife, the family rather than towards me because to be honest with you I was in no real fit state to be asked. (Patient(Pat)A05)

Pat: Well I mean she says they were talking to me but I can’t remember them talking to me about it.

Fam1: … well I thought I was taking it in completely but I was too worried about him.

Fam2: If whoever is with you, if they can’t take it in… You are trying to take it in but you are not fully realising what [the doctor] is saying to you. It is just like the big words stick out like ‘risk’ you know, ‘in 3 hours’ and all this, that and the other. And then you are watching whoever you are with. (Pat/FamC08)

I cannot tell you what [the doctor] said to be honest. I mean I, I was in such, I was in such a state of shock you must realise I was in complete shock at the time and I was trembling and my knees were trembling. I don’t know what I would have looked like to him but my knees were trembling and, and I, I am thinking to myself I can’t make a clear decision I must go and ask V [a family friend] Normally I would have made it myself but I was in, I was in terrible shock. (FamB07)

Patients predominantly reported being unable to fully recall the immediate post-stroke events, or the information given to them at this time, but this was not a universal experience. Some family reported a general understanding of the information clinicians had given them.

When he was explaining things he was explaining things in a way that a layman can understand. After a while he came through and again explained this treatment you could get saying that what it involved was a dramatic thinning of the blood to flush away any clots that might be there, em, but that it had to be done in a 3 hour time frame which the young doctor had already said (FamB04)

Relationships and trust.

From the patient and family perspective, a key issue of importance in their decision making was the care and support given by the health professionals who attended them, the support of their family and the sense of an organisation working effectively and efficiently. The social, emotional and decisional support of family and other trusted members of their social network were crucial (family friends: in one case a minister, in another a nurse).

As I say, just make sure you’ve got somebody with you. And if you go, like I did, into an accident and emergency by yourself make sure that your next of kin are hotly on the heels. To help you in case you have to make this decision. (PatC02)

Asked about their preference for engagement in decision making, patients and family reported a reliance on their clinicians, particularly their doctor. They valued their doctor’s expertise, whilst nonetheless expecting their own views to be taken into account.

I always leave it to the doctor, he knows best what is going on, he knows best whether it is good for you or not. (PatA05)

He is the expert. He knows, I mean he’s, he’s the one with experience hopefully with experience and he’s the one that knows the ins and outs of it but also any, any reservations that I had I would like him to listen to what I had to say. (FamB07)

Equally, clinicians reported a prevailing patient preference to let major clinical decisions rest with them – or at least be guided by them. For clinicians it was important to give hope and reassurance to the patient to allay anxiety.

So I think the engagement is from a, a clinician’s point of view you’re trying to give hope, reassurance where you can in a context where actually the outcomes might be very bad. (DocC02)

Reliance on clinical expertise in decision making did not, however, equate to a desire for paternalistic medicine. A clear expectation of respectful interactions with health care providers was evident in patient and family discussion of the relationship with a patient’s clinician. Trust was built on a frank interchanges which didn’t patronise: “he said ‘I need lots of questions answered quickly’ and he explained”.

I-I just feel that as long as they are honest with you and explain everything very carefully, discuss it with you but don’t talk down to you, don’t patronise you. You see I didn’t have any problems because I just trusted. I think that was, I trusted Dr D because of his approach to us because when I went in he got me and he sat, knelt down in front of me, and he got both hands and I was shaking and he said “I need lots of questions answered quickly” and he explained (FamC04)

Trust in their doctor and a need for reassurance was clearly important to patients and family. Their experience of stress and general confusion was reportedly helped by information about what was happening to them and around them, as well as by risk information about potential treatments. Largely this was through being informed by their health care team about the processes and procedures during their care trajectory.

Face-to-face communication.

With capacity and desire for information potentially blunted, patients and their family sought reassurance from healthcare professionals. This relationship became key in the decision making process. In accord with the importance of relationships and trust demonstrated above, patients’ and families’ emphasis was on information being given face-to-face from a trusted and knowledgeable professional. The prospect of having to assimilate written material, when patients and family were experiencing the immediate impact of stroke and very rapid decisions were required, was resisted by patients and family alike. Clinicians also preferred verbal presentation, reportedly because it allowed bespoke knowledge translation, i.e. the tailoring of information to individual patients.

I couldn’t have read on the Wednesday night, I couldn’t have…erm it wouldn’t go in. If somebody’s talking to you, I can cope with that but not, not reading it, no. (PatA02)

I think if I was given a leaflet I would have been in too much of a state at the time to actually sit down and read it properly. Em, I think just maybe another professional person there present (FamA11)

I mean some people like everything written down, other people… I mean there is not really that much you can write down that somebody doesn’t say. You know, “this is the opportunity, this drug’s a fairly good drug, it has got this bleed and that’s the two things that you have to balance up.” (FamC10)

You know, according to those circumstances printed information is a possibility but it’s always better if it’s verbal by somebody. (DocB01)

The effect on patients’ capacity to absorb complex information immediately post-stroke was widely reported by clinicians in the study, with clinicians on one site concluding that patient information sheets might not be appropriate for hyperacute stroke patients.

Yeah, we have actually in my service discussed quite at length actually whether we have an information sheet or not. We felt it wouldn’t actually help in, in terms of the decision that people make. I think, the thought they would be trying to read this information sheet at the time when we’d rather they actually be listening to what we were saying and thinking about it, we just decided it really wouldn’t have a lot of additional value. (DocB01)

On the other hand (i.e. the negative cases), some clinicians suggested value in written information and at least one clinician had drafted an information sheet for patients.

I think probably the main bit of information you want to convey is that I’m being honest and open about the risks and the benefits and “here it is in black and white” and I actually give them a copy of it so that they can take it home, that they can later on say, ‘But you said this or that’, well you know, there it is that’s what I said to you. (DocC01)

Erm, so for certain family members that might be a useful time to say “Look, just a little leaflet, this is what a stroke is, you’ve got a blocked blood vessel, this drug dissolves it, therefore that minimises brain damage, these are the downsides”. Again, just explaining in writing what you’ve just tried to explain (Nurse(Nur)A05)

Notably, the suggested provision of written information by Doctor C01 is not necessarily for use in the hyperacute phase, it is to be “taken home”. Moreover, there is an understanding that such information may not be appropriate for all, it is for “certain family members”. This view accorded with the small number of patients and family who would value written information but recognised that not everyone would.

It would have been nice if I’d had a leaflet. I mean other people might not. Other people might have been put off by the printed word but I would not. I would have liked the information and my daughter would have done [so] as well if she had been there. Both of us would have been able to read and process that. Not everybody I think perhaps would have appreciated that. But somebody to have, sit down quietly beside them and explain the ins and outs. (FamC07)

Negative cases were also evident among patient and family members. When asked if written information would be useful, some agreed that it would be in certain contexts. Demonstrating the power of the negative case to reinforce the prevailing view, they used this caveat to affirm the importance of face-to-face communication.

Int: [Would it] have been helpful to have something to read, or to watch, or…? I mean obviously you did have someone that quietly sat down and explained it to you, and that seemed to have come across as being…

Fam: Yes, that’s the most helpful. I find that yes, the leaflet is fine. You can be given it. You can read it when you get home. But it’s at the actual time when somebody sits and says to you this is the way it is, that’s what sticks in your mind most. (FamA01)

Some patients, family and clinicians identified the potential value of prior knowledge i.e. before the acute stroke event. In the absence of time to absorb new information, patients identified that the understandings needed to make decisions about rtPA were best known before a stroke; that is, that a general awareness of rtPA and stroke was needed, especially for those at higher risk.

Int: Is there anything else that you think might be important in helping people in making a decision about thrombolysis.

Pat: I think just the fact that people should be informed beforehand you know, people who are more vulnerable to having a stroke possibly having this kind of information available to them so that should anything really happen then they have got that. Then their partners or whoever a GP or a doctor or whatever would know this and they could make an informed decision then, you know what I mean? (PatA05)

Asked to think of other potential support to help assimilate information and make decisions in the hyperacute phase, patients and family returned to a relational form of support: a person to help translate, support and reassure them in the process. The potential for this form of support was recognised by clinicians too.

Yeah, it was pretty daunting. He was coming and saying this [is the decision that needs to be made], you know. If there was somebody who like would sort of be in between me and the doctor. Maybe a nurse or someone just to be relaying the information and making sure that everybody is understanding. Being there for me sort of thing, giving us encouragement. Saying “this is recommended treatment” or whatever. It’s just hearing it from somebody else I think sort of strengthens your belief that it is a good thing to do rather than just you and the doctor (FamA11)

Shaping decisions.

Clinicians reported shaping what they saw as the ‘right decision’ for the patient. This was viewed positively by many patients, who found attempts by clinicians to portray information and choices from a neutral position as “unhelpful”. Patients valued doctors expressing confidence in their advice, and in avoiding giving a sense of uncertainty or delegating the decision to the patient; seen below in one case where the clinician’s approach had reportedly not been one of shaping the decision. In another example, when questioned about being “led” towards a decision, the interviewee resisted the negative implications of the question by positioning the doctor’s approach as “informing and involving”.

I don’t think, to be truthful I don’t think we should’ve had to make the decision, cos, you go to the hospital to make you better not for you to make a decision. I think the way they should’ve put [it] was “there is this drug available, it can have serious side effects”, they could’ve told us exactly the same thing but putting it on the end was “we advise you to take it” and then we could have the consultant’s view instead of somebody who has got no idea about medicine (FamC02)

Int: Did you feel more that you were in their hands, or I’m sort of wondering whether you felt that you were left to make the decision or did you feel that you were being led by the doctors really?

Fam: Led is not really the right word. I think the fact that they kept us involved and informed throughout the whole process, and that Dr P a couple of times came out of the area where she was being treated and sat beside us and told us the next stage made it much easier and gave us much more confidence in making that decision. (FamB04)

Clinicians emphasised the importance of giving hope and reassurance to the patient to allay anxiety. Lowering of anxiety levels was understood by clinicians as enabling patients to be in a better frame of mind to take in information and thereby consider decision-making options. Reduced anxiety was also understood by clinicians as potentially alleviating high blood pressure, a key contraindication for thrombolysis.

“This is what we propose to do, cause I think it’s in your best interest. There’s a risk of bleeding, are you happy for us to go ahead?” And that’s the conversation. So it’s … I try to be fairly sure and confident in what I say to patients cause I think uncertainty is unhelpful to patients at this time, so that’s my personal approach (DocC02)

Clinicians generally understood that how they presented themselves, their manner and approach, was important to the understanding and acceptance of the information conveyed. The communication afforded by these more relational aspects of decision support could reportedly accommodate the effects of the stroke itself and serve to alleviate the anxiety caused by the shock of the stroke event.

Making time.

We found, as in other contexts [12], [20], [21] that decision making was a process not an event: even within the constraints produced by the emergency setting. While the patient’s trajectory following stroke includes the potential for an rtPA decision, some patients come off this trajectory very early, for example if they have an absolute contraindication to rtPA or arrive too late for treatment. Though showing some variation in practice, clinicians broadly reported managing knowledge translation along the care trajectory in an incremental manner, which entailed the continual provision and build-up of information about possible treatment protocols (including rtPA) in light of the developing knowledge of the patient’s clinical state. Timing of information provision about rtPA varied. Some clinicians reported early discussion of rtPA, others delayed discussion until CT scan results were available. Anxiety about unnecessarily raising patient and family expectations provided the rationale for delaying discussion.

I start, I try to start general, I try to start general and broad and to see whether people are taking that information, taking that information in. I then go into more detailed information but adjust my language and detail according to how people are responding and you know their ability to take information at that time and their educational level. (DocA02)

I mean, it’s not just said once either, it’s all the time through. By the time we’re waiting on all the different investigations, you know, test results coming back and different things, getting all the information, all the time. It’s not just said once, it’s said a few times different ways and things. Do you know what I mean? So it’s not just going in and saying ‘Right, here you are you’ve got a choice, are you going to go with this, that and the other’. It’s a building up of it, if you like. (NurB06)

That is my style, to try and spread it out so that some of the things you say can sink in because I don’t think that it’s fair to have a pressured discussion at any stage during the process. I think one needs to plant some of the ideas and let them have a chance to think about it as they go, get wheeled down in the lift and all that. They also need to develop a confidence in the professionalism and just that the people looking after them know what they’re doing. And the sooner you start sharing some of the information with them, they start assessing what’s happening against what you’ve told them. And I think that helps them to build up confidence or on the other hand they might remain more cynical which is fair enough. At least you’ve armed them with some of the information. (DocC01)

Though knowledge translation was constrained by the limited time available, this limitation necessitated the judicious use of that time. Adopting a strategy of consciously building up information content and complexity allowed for better assimilation of that information. Another product of this approach was that it could also function to build trust and confidence at a stage when there was much uncertainty for the patient and their family. The communication of information was a context sensitive and relational activity for patients, their family and clinicians.

To be honest I think the important thing is the discussion that we have with the patients and the relatives. And that they are given time, limited though it is. But time to reflect on what we have said and what we have discussed and what our recommendation is and what the risks are. And given some time to try and analyse that and come up with whether it is right for them to go ahead or not (NurC05)

Tailoring communication.

Clinicians orientated towards risks of rtPA not as a set of ‘fixed’ facts to be communicated, rather, knowledge translation was tailored; risks were assessed and communicated in light of how this applied to the particular patient and their situation.

I mean if there was somebody who had had a stroke, was not affected cognitively or speech or speech-wise and was able to fully engage and discuss things and was asking questions and driving, you know, driving the conversation and finding out what they want and the way they want it then I would respond. Then I would be flexible and respond to that. On the other hand if you have got somebody who, you know, there are some people who you can’t even start to have a conversation with. In that case you’d be with their family. But…a lot of people’s understanding of even what a stroke is, how it can affect them and what is likely to happen…. has to be, that’s the starting point to explain the consequences. And most people I think their starting point is there. (DocA02)

There was evidence of considerable energy and thought being put into appropriate ways to present the risks and benefits, but also of struggling with some of the challenges of doing so in the context of the emergency setting and individual clinicians’ experience of delivering rtPA and risk communication. There was, therefore, considerable variation in the methods of risk communication. Clinicians varied knowledge translation between patients and sometimes with the same patient. Clinicians use mixed modes of information provision about rtPA, in part as a result of trying to convey the ‘necessary’ information to the patient. Using more than one mode of communication was felt likely to have more chance of succeeding. In attempting to meet the understandable desire on patients’ part for the information to be in lay terms, clinicians engaged in the creative use of language, forming similes and analogies in an attempt to convey meaning.

I also talk in the same sort of language that I do with MIs. Which is, “there is a blockage in one of your arteries we can blast that by making your blood more leaky. Obviously by making your blood more leaky we risk making it leaky where we don’t want it to be leaky and it can leak out of where it is not meant to leak out of. It can leak into your gut, it can leak out into your brain. If it leaks into your brain that can cause a worse stroke or it can kill you” and you put in those sorts of terms. Then tell them about the risk of haemorrhage in terms of symptomatic bleeding, which is between three and five percent. But I usually explain that in terms of a one in twenty risk rather than [percentages] because people don’t tend to understand percentages […] so if you say it’s a it’s a one in twenty [chance], betting on horses and things like that, so they understand that a bit better [chuckle]. If you say it’s a twenty to one chance of having a haemorrhage that’s more comprehensible to most people. But usually, put it both ways. (DocC08)

Concerned about potential inconsistency following an audit of risk information used by colleagues, clinicians in one site had prepared standardised risk information to facilitate knowledge translation, albeit, “tailored” to the particular situation and “needs” patient.

So between ourselves, between the consultants who are doing it, we have got standard information that we give and tailor according to the needs of the patient. But we’re all quoting the same risks. (DocA02)