Theme 1: determining when and with whom to conduct a ReSPECT conversation: uncertainty management and catalysts for discussion

Given time constraints, consultants had to determine which patients were most in need of a ReSPECT conversation, and when this conversation should be conducted. Making these determinations was fraught with uncertainty. To manage this uncertainty, consultants relied on their predictions and imaginings of patients’ immediate futures, using the ward round to piece together prognostic puzzles. For example, explaining why they did not initiate a ReSPECT conversation with a patient in her 90s, this consultant said:

she’s otherwise recovering well (…) I thought the chances of her, as it were, needing any of the interventions you might discuss on a ReSPECT form were small. (Site 1, C04)

The key to initiating a ReSPECT conversation, this consultant later explained, was predicting a trajectory of deterioration:

It’s the deteriorating patients, patients with end-of-life conditions for whatever reason, be it cancer or organ failure and any patient where they might suddenly deteriorate. (Site 1, C04)

Another consultant said they used the ward round to predict whether a patient was likely to experience a ‘catastrophe’; such a prediction, they said, would warrant initiating a ReSPECT conversation:

Particularly where you’re seeing acutely ill patients and you’re seeing them for the first time as, as an acute physician, I think the prompt is how likely you think it is that this patient may have a catastrophe, may have a cardiac arrest, may have a sudden severe deterioration. (Site 1, C07)

This consultant, like numerous others in the sample, linked the focus on predicted deterioration to the time constraints of the ward round. As another consultant explained:

I think in the context of a post-take ward round where I am time limited I prioritise those patients for whom these conversations are most likely to be required for this admission. So it may well be that ReSPECT conversations were appropriate for more of the patients that I saw today in terms of potentially being last year of life. But they were not decisions that were required today. (Site 2, C04)

While time constraints were frequently cited, they were not the only factor underlying consultants’ focus on predicted deterioration. Explaining why they were less likely to initiate a ReSPECT conversation with some patients, this consultant positioned their decision-making as culturally embedded:

I think for the time being the culture is still the ReSPECT form is mainly for when people deteriorate. I think sometimes asking people a hypothetical question when they’re really quite well, it’s difficult to frame it. (Site 1, C06)

This consultant linked their focus on deterioration as the primary prompt for a ReSPECT conversation to the difficulty of asking patients to imagine a hypothetical difficult scenario. Imagining difficult scenarios, however, was central to ReSPECT conversations. Since initiating ReSPECT conversations depended on clinicians’ predictions of patients’ short-term prognoses, ReSPECT conversations engaged patients with clinicians’ predictive thinking. This process was often challenging, as patients did not necessarily share in the logics and concepts of time posed by their clinicians:

[P]eople find, ‘What if?’ challenging. So if I say, ‘What if you’re going to deteriorate? We need to make a decision what we would do about ITU’. A lot of patients and relatives will hear about us saying, ‘You’re deteriorating, you’re going to need ITU’. They don’t hear the ‘What if?’ (Site 2, C04)

Like others, this consultant explained that while they framed possible future scenarios in subjunctive—that is, potential or conditional—terms, patients and relatives tended to understand these in definitive future terms. Another consultant explained that, rather than joining a dialogue on potential scenarios, some patients and relatives expressed distress over what they understood as a terminal prognosis:

…even though I’ve said ‘I am going to let you go home now, have you thought about what you would like in the future?’, and then they say ‘why am I going to die? You’re telling me I am going to die aren’t you!’ (Site 1, C08)

In addition to predicted deterioration, consultants timed ReSPECT conversations according to calculations of risk related to a wider network of actors. The timing of ReSPECT conversations therefore implicated patients and other clinicians. For example, some consultants said they were reluctant to hold ReSPECT conversations with preoperative patients, as these discussions could bias surgeons or demoralise patients:

(The patient) was going to undergo an operation and I feel very uncomfortable discussing resuscitation just before the operation (…) if he does not want to be resuscitated, it influences the surgeon to some extent. (Site 2, C01)

…we don’t often talk about ReSPECT form because it’s, you know, when you deteriorate. And in some ways with elective surgery they’re very much focused on consenting for surgery and talking about rehab after surgery rather than deterioration from surgery. (Site 1, C02)

Elsewhere in the interview, this consultant said the best time to initiate a ReSPECT conversation was immediately after surgery—a particularly opportune time because, while risk of complications was higher after surgery, patients’ distress was likely to be lower, and relatives were likely to be present:

…often, often there’s a family around at that point because it’s usually an emergency admission and the family come in a day or two later. So you can involve the parties that you need to at that point in time. It’s a relatively rare event for a patient to die on the operating table, if they’re going to, if they’re going to succumb it’s usually over the following few days. (Site 1, C02)

The presence of relatives was central to the timing of many ReSPECT conversations, not least because conducting the ReSPECT process with patients who lack capacity requires the participation of an individual close to the patient. In this example, a consultant discussed a case where a visit from a patient’s relatives prompted a ReSPECT conversation:

[H]is family were there so I took the opportunity while they were all there to express not only that he was perhaps more unwell than they had recognised, and that he was getting better with treatment, and to explore what their feelings were about escalation of care, particularly whether intensive care would be appropriate for him. (Site 2, C04)

This consultant considered the presence of relatives crucial in timing the ReSPECT conversation due to uncertainty about escalating the patient’s care. Other consultants, however, spoke of the presence of relatives as important for finalising and communicating a medical decision, rather than deliberating about a trajectory of care.

Theme 2: conducting the ReSPECT conversation: managing emotions and relationships

Most ReSPECT conversations implicated a triad of patient, clinician(s) and relative(s). For patients who lacked capacity, this triad was essential to the ReSPECT process, with relatives or other advocates called on to speak on the patient’s behalf. However, while patients with capacity could speak privately with their clinicians, they often involved their relatives, framing the ReSPECT conversation and their own decision-making as familial. In these cases, consultants clarified they included relatives in the conversation, but did not involve them in decision-making:

…you’ve had a discussion, the patient says, ‘Look, I don’t want anything done, doctor’, I think it’s still very valuable to the next of kin to know that. (…) but we’re not asking the family to participate in the discussion if the patient has already made their wishes clear in a reliable way. (Site 1, C07)

Although consultants tended to describe relatives’ involvement as valuable, they also described it as potentially problematic, characterising family members as either compliant and ‘sensible’, or as non-compliant and ‘difficult’. According to some consultants, relatives sometimes challenged clinical decisions—specifically, decisions against resuscitation—because they misunderstood what ‘not for resuscitation’ meant for the patient’s future care:

Sometimes you have relatives who are very emotional, sometimes they think when you say ‘not for resuscitation’ means you’re going to stop all treatment. (Site 2, C03)

In other cases, consultants said relatives misunderstood their role in the ReSPECT conversation as that of ‘decision-maker’, worrying about how a ‘not for resuscitation’ decision might reflect on them:

Often what happens is the relatives feel that you’re asking them to make the decision… and again because they’ve been misled by the media, they feel that if they say, yes, make them not for resuscitation, that they might be seen as a money grabbing. (Site 2, C02)

Disagreement between clinicians and patients’ relatives could carry consequences for patient care, particularly if relatives who held lasting power of attorney (LPA) attempted to overturn a clinical decision. In those cases, consultants advocated for their clinical decision, taking the role of acting on the patient’s behalf:

I try to explain to them that by keeping them alive, you are, you are, you are prolonging their agony. (…) I try to avoid confrontation with them (…) But sometimes we have to, when I can see clearly that there is going to be harm, then I have to, even if they have the LPA. (Site 2, C01)

Another relational aspect of the ReSPECT conversation was the consideration of other, sometimes absent, clinicians. Several consultants spoke about the importance of identifying the ‘right’ clinician to conduct a ReSPECT conversation—often, the consultant or the general practitioner (GP) regularly charged with the patient’s care. In post-take ward rounds, some consultants avoided conducting ReSPECT conversations with patients who were usually seen by their colleagues. In this example, a consultant explained why they chose not to complete a ReSPECT form with a patient who had a localised infection:

I could’ve completed a ReSPECT form but I didn’t because I, effectively I’m not looking at her (as her) responsible consultant. (Site 2, C02)

Later in the interview, this consultant explained that the patient’s condition did not warrant an urgent ReSPECT conversation. Given the lack of urgency, they deferred to the patient’s ‘usual physicians, who obviously know her prognosis’. It would be inappropriate, this consultant argued, to conduct a ReSPECT conversation with a patient whose consultants evidently did not deem it necessary.

Consultants deferred ReSPECT conversations until the ‘right’ clinicians could conduct them because patients’ usual consultants were more knowledgeable about these patients’ medical histories, and because these usual consultants had established rapport with the patients. In this example, a consultant explained why they chose to conduct a ReSPECT conversation but leave the final decision for a future discussion between the patient and her usual consultant. The patient, this consultant explained, was not ‘receptive’ to an earlier ReSPECT conversation with her usual consultant. As such, they viewed their role as providing a second opinion to support the consultant’s, rather than as finalising a ReSPECT decision.

…I didn’t feel as if I was going to be welcomed to take that further with her myself. So I thought it was better than to say, to see her back to her normal consultant then the next time. (Site 2, C05)

For similar reasons, other consultants suggested that ReSPECT conversations were best conducted in primary care settings, led by patients’ GPs rather than by clinicians they first met during an acute care admission. In response to the researcher’s question, ‘So you think this is something that should be discussed in the community?’, this consultant said:

Definitely because I think it makes… patients feel less vulnerable… when they are in hospital they feel vulnerable plus they don’t know us (…) they might have known the GP or have some sort of on-going or community matron or something that’s a bit more of a long term relationship. (Site 1, C03)

The importance consultants placed on rapport was closely connected to their concerns over trustworthiness. Worries about being perceived as untrustworthy led some consultants to avoid or delay ReSPECT conversations with some patients. As described by consultants, ReSPECT conversations, if not framed carefully, could undermine the process of building trust with patients.

One of my worries is that patients, if you’re not careful with your language, a patient might interpret a discussion about what to do in the event of deterioration, escalation, CPR, etcetera, as you giving up on them, as you not being prepared to do everything that you can to get them over their illness. (Site 1, C07)

The timing of ReSPECT conversations could also affect trust building. This consultant, for example, suggested that initiating a ReSPECT conversation too early would erode the patient’s trust:

… you want to make sure you still have the rapport with the patient, that they see you as somebody that’s there to help them (…) and if you feel that the patient is not quite ready to talk about it or they don’t want to then if you kind of push it they’ll see you negatively. (Site 1, C03)

Another consultant described a case where they conducted a ReSPECT conversation before a seriously ill patient underwent surgery. While the ReSPECT conversation was carefully timed from a medical perspective, it forced the patient to confront difficult scenarios that destabilised her trust in the surgeon:

So she doesn’t want to talk about whether or not she’s going to die on the operating table, or whether or not she’s going to get her post-op chest infection or a lung embolus or whatever else could happen. But that process makes us talk about it at that point in time. (…) as soon as you mention that sentence about what would you like to do and if things were taking a turn for the worse (…) she’s switched, she’s completely switched off. (Site 1, C02)

Notably, consultants were concerned about being perceived as trustworthy because they identified the ReSPECT conversation as a catalyst for potential distress for patients and relatives. To manage the difficult emotions that often arose during ReSPECT conversations, consultants used various techniques: from avoiding the conversation if the patient was expected to react aggressively or become overwhelmed, to initiating a series of conversations to ease patients and relatives into their future trajectory. For example, one consultant deferred ReSPECT conversations with patients recently diagnosed with terminal cancer to avoid overwhelming them:

I’ve generally just told them they’ve got incurable cancer and it, to go on straight from that to a ReSPECT conversation is too much. But I will say that it exists and that it may be something they want to consider and then ask somebody else to follow it up. (Site 2, C04)

Alongside concerns over patients’ emotional well-being, several consultants said that previous experiences with patients or relatives who became upset made them cautious about initiating and framing ReSPECT conversations. One consultant, who explained that ‘we worry about the angry and anxious one[s]’ (Site 2, C04), described beginning each ReSPECT conversation by framing it as common and routine, to pre-empt patients’ upset reactions. Another consultant, who described ReSPECT conversations as ‘emotionally very draining’, conducted repeated ReSPECT conversations to manage relatives’ distress:

So if you can get some background knowledge, and if they are so in shock that they can’t take anything in then it’s okay to come back another time. (…) I would prefer to sit away in a, in a room together with a nurse accompanying me, so that you’ve got a bit of time to yourself and make sure that they know you’ve got time to listen to them and questions and things. (Site 1, C06).

The availability of sufficient time and adequate space influenced consultants’ capacity to conduct ReSPECT conversations. Many conversations, of necessity, took place during ward rounds, and the crowdedness, urgent pace and lack of privacy in acute wards limited clinicians’ ability to conduct the in-depth ReSPECT conversations they envisioned as appropriate. This consultant, for example, argued that ReSPECT conversations necessitated the quiet environment of the patient’s home or GP surgery:

…this is quite a serious and significant discussion that should not take place in a very busy, busy place. It should either happen when the patient is comfortable in their own home, or, or they have gone to see their, gone to see their GP… (Site 2, C01)

Hectic ward environments, in this consultant’s experience, implicated an urgency and sensory onslaught that, together with patients’ acute conditions, led to compromised conversations. The lack of sufficient time to conduct ReSPECT conversations in acute care wards was a pervasive concern across the sample:

…it takes time and it sort of stirs up emotions both in you and in the patient (…) so it can be very difficult, mmm, not least because you want to do it well and yet you know we were on a ward round which isn’t an ideal kind of, ideally you’d come back and spend 20 minutes with each of them wouldn’t you and their families and talk to them at some length. (Site 1, C09)

Notably, this consultant suggested that lack of time was not simply a logistical issue, but a factor that reduced the ability to conduct careful ReSPECT conversations and manage the emotions that arose during ReSPECT conversations.

Theme 3: reaching ReSPECT decisions: involving versus informing

The extent to which ReSPECT conversations engaged with patients’ wishes depended on consultants’ clarity or uncertainty about patients’ trajectories. When consultants had clear predictions for patients’ short-term prognoses, they tended to lead ReSPECT conversations, taking an informative and persuasive stance. For example, when asked by the researcher, ‘Are there times when you find yourself pushing the discussion in a particular way?’, this consultant responded:

Yes, I think if you genuinely feel that it would be completely futile and that you would only be prolonging an unpleasant death then yes, you do, you do tend to push the discussion in one way or another. (Site 1, C04)

Consultants often used words such as ‘futile’, ‘frail’ or ‘comorbid’ when describing cases in which they took a persuasive stance. Futility, as consultants framed it, foreclosed discussion of patient preferences. The conversation focused on patient preferences only when consultants were uncertain about a patient’s trajectory:

I think that the times where it’s very important to discuss with a patient whether they would be appropriate for resuscitation is if it’s a patient that maybe is potentially a candidate for intensive care, Level 3 care, that isn’t so frail and co-morbid that we feel it would be utterly futile. (Site 2, C02)

Because they approached ReSPECT conversations according to perceptions of prognostic clarity and uncertainty, many consultants described the ReSPECT conversations in which they typically engaged—conversations with patients at imminent risk—as processes of navigation and persuasion. For example, one consultant described handling a patient’s son’s concerns by ‘steer(ing)’ the conversation:

I went in with quite clear views of what had to be done and as you say the patient’s son started to suggest that ‘actually he would want to be resuscitated wouldn’t you Dad’ mmm… and I gently had to steer him away to explain why I didn’t think that would be a very good idea. (Site 1, C09)

As described by consultants, the need to persuade some patients and relatives was the main challenge in the ReSPECT process. To foreclose possibilities for disagreement, some consultants described structuring ReSPECT conversations to clarify which medical procedures would be undertaken:

I think a general structure is this is what’s wrong, this is what we will do and this is what we won’t do and if they are going to be relevant things like feeding, normal ITU, critical care I think these things need to be discussed. (Site 1, C01)

As this consultant explained, while they clarified that medical decisions were not open for discussion, they attempted to elicit patients’ views during the ReSPECT conversation and integrate these into their decision-making processes:

when we are looking at what I think we can do medically we have to take into account what the patient believes (and) how they live their life… (Site 1, C01)

In line with structuring conversations to foreclose debate about medical decisions, some consultants described the ReSPECT conversation as centrally concerned with informing patients and relatives, rather than involving them in medical decision-making. For example, this consultant used the word ‘disclose’ to describe the function of ReSPECT conversations:

I still believe it’s a medical decision and it’s a good practice to inform the patient and their family. So, ultimately, the decision is mine, but I have to disclose my decision to the patient and their family. (Site 2, C06)

In other interviews, consultants suggested that, as part of the ReSPECT conversation, clinicians should state explicitly that they are informing patients and relatives about a medical decision, rather than seeking their opinion or approval. One consultant, for example, said that, when conducting a ReSPECT conversation with the relatives of a patient without capacity, one must clarify the relatives’ role is to provide contextualising information and ask questions, rather than be actively involved in decision-making:

I think doctors in particular need to be clear, they’re not handing over the decision making to a family member, they are still responsible for the decision but they’re ensuring it’s made, as far as possible, in line with what the patient would want. (Site 1, C07)

Another consultant said the ReSPECT form itself, in providing space for patient input, needed to be mediated with care, to avoid conveying that medical decisions required relatives’ approval:

I will normally say that the final decision is a medical decision… ‘cause the relatives say ‘oh you know I need to check with my brother’ when I said that ‘I am informing you and just making sure you're aware that this is the reason why we are doing it’. (Site 1, C03)

Along similar lines, a consultant suggested that foregrounding patient views in the ReSPECT conversation was potentially detrimental, as it could place an undue burden on patients or lead to false hope:

If it’s bleeding obvious what can and can’t be offered medically then, then you have to be really careful about getting the patient to express about what they want. (…) It has the ironic effect of making them feel more ignored than they would be if, if you just gently explained what is and isn’t possible. (Site 1, C09)

According to this consultant, asking patients to express their wishes unreservedly was counterproductive. Instead, this consultant argued, doctors should clarify medical possibilities and impossibilities, not place patients in the vulnerable position of having their wishes denied and their hopes deflated.

Consultants cited clear and careful communication about the finality of medical decisions as a source of comfort to patients. Describing how they would structure a ReSPECT conversation, one consultant related a hypothetical scenario in which a patient aged 82 years was diagnosed with terminal cancer. In this scenario, they said, they would relate the news to the patient, cite the evidence (as provided by blood tests) and explain what treatments will and will not be offered. Using the second person singular, the consultant described what they would say to this hypothetical patient:

Our aim will be to keep you comfortable, to support you through this. If you have any pain we will, we will control it with strong painkillers. If you have any sickness we will do that. If the time comes and if you stop breathing, or if your heart stops pumping blood… we will not be doing resuscitations, or we will not jump on your chest and perform cardiac compressions because it’s not going to work. We will let you go in dignity and respect, and we will support you in that process. We will make sure your family’s around you if we can. (Site 2, C03)

Reflecting on this scenario, they said this approach ‘reassured’ patients:

…if you’re very clear to them then they can decide whether they want to be at home, whether they want to be in the hospital. And it just helps them. And if you’re quite open to them, they will openly ask you questions and it just makes things easy. (Site 2, C03)

While most consultants shared a directive approach to the ReSPECT conversation, particularly in cases where they deemed resuscitation ‘futile’, it was not the default option for all. One consultant, for example, conceptualised the ReSPECT conversation as ‘patient-centred’ and as a dialogic process towards a shared decision:

So you start off by, by getting the patient to, to give their thoughts on what they would or wouldn’t like. And that allows you to, to guide the final decision. Perhaps that’s not, so it’s not necessarily the patient starting with it. But you do it together. (Site 2, C05)

Framing the ReSPECT conversation as a dialogue did not preclude medical decision-making. Elsewhere in the interview, this consultant said they initiated ReSPECT conversations with patients they thought should not be for resuscitation. However, this consultant understood the ReSPECT process as complex, often comprised of multiple conversations with clinical and familial actors, building up to a shared decision. This process, they explained, led to deeper understanding and decisions that empowered patients, especially those who decided to forgo future critical care interventions.