Introduction
In this chapter, we consider the ethical values that inform how ReSPECT is conceptualised and enacted, and the ethical issues and questions that arise from its use. The ReSPECT process is designed to facilitate meaningful discussions between healthcare professionals, patients and their families about preferences for treatment in future emergencies, promote shared understandings and treatment recommendations, prevent patient harm and facilitate beneficial treatment provision.46 Built into the ReSPECT process are healthcare values of patient autonomy, person-centred care and acting in the patient’s best interests. Drawing on interviews with GPs and nurses, patients and relatives, and care home managers and staff, we explore to what extent ReSPECT as used in primary care upholds these values, and what other values may also be at stake.
Methods
Participant recruitment and data collection
Interviews were conducted with GPs and nurses, care home managers and staff, and patients and relatives (refer to Chapters 2 and 4 for participant recruitment and data collection procedures).
Analysis
Interview data were analysed using a modified framework approach and the empirical ethics model of grounded moral analysis.54,74 Six co-authors (AS, CB, CJH, FG, JH, KE) coded 12 interview transcripts (4 GP, 3 care home and 5 patient/relative interviews), with 11 transcripts intercoded. This initial coding identified semantic (explicit) and latent (implicit) references to ethics.73 Using these initial codes and the group discussions that followed, AS developed a draft coding framework, including inductive and deductive codes. Topic guides for future interviews were refined to explore the ethical issues and concepts identified.
Interviews were summarised in individual pen portraits by KE (GPs and nurses, care home managers and staff, and patients and relatives) and CJH (GPs).75 We created 37 pen portraits, capturing all patient and relative interviews (n = 13) and half of the GP/nurse (n = 13) and care home (n = 11) interviews. GP/nurse and care home interviews were purposively sampled to include data from all sites and different types of staff. These sample sizes allowed us to reach code saturation.64 KE coded each pen portrait using the draft coding framework. AS intercoded 16 pen portraits (7 GP, 5 care home and 4 patient and relative interviews); comparisons showed a high level of consistency. During coding, KE and AS added new codes to the draft framework. To ensure meaning saturation, AS reviewed the interviews not summarised in pen portraits (13 GP and nurse and 11 care home interviews) to check for new codes (none identified) and extract illustrative quotes.
Using the pen portraits, KE outlined the ReSPECT process timeline as described by the participants, from preconversation to the enactment of recommendations, identifying ethical dilemmas at each stage and abstracting candidate themes from the codes to capture the salient ethical values for each dilemma. These themes were further refined and finalised in discussion with AS.
Findings
Participants described the ReSPECT conversation and plan as empowering patients, respecting their wishes and engaging them in decision-making. As such, ReSPECT was seen as honouring patient autonomy and aligned with the professional obligation to provide person-centred care. Participants also emphasised the duty to protect patients from harm and act in their best interests. Additionally, two other ethical values – the moral importance of the family, and the interests of health and social care professionals – were frequently mentioned. Threading through was the importance of trust and relationships between patients, relatives, and health and social care professionals. Ethical tensions between and within these values manifested at different stages in the ReSPECT process, as described below.
When is the right time to have the ReSPECT conversation? Respecting autonomy and protecting from harm
When deciding when to initiate the conversation, GPs and nurses weighed the risk of physical or moral harm, wherein a patient may be subjected to invasive and distressing interventions without their wishes being considered, alongside the risk of emotional harm caused by having the conversation before the patient and/or their relatives were ready. These competing risks posed a dilemma:
Sometimes if you go in too early with the [conversation], and not approach it in the right way … they can sometimes step back … but we don’t want them so unwell that they’re not able to be involved as part of that decision-making and really don’t want them to be going into hospital and just having them made.
In working through this dilemma, unless the patient was imminently approaching death, GPs and nurses tended to favour preventing emotional harm. This was linked to GPs’ and nurses’ perceived need to maintain trust and rapport. GP and nurse participants spoke of postponing conversations if they felt the patient was not emotionally ready or had more pressing needs, and of introducing ReSPECT gently and gradually before discussing the ReSPECT form in detail. One nurse explained this approach led to better patient experiences and higher quality outcomes:
[I]t just feels like it’s a bolt out of the blue, you know, all of a sudden somebody’s talking to you about end of life, it might not be the right time for them and actually if you can invest a bit of time, you get the better quality ReSPECT Form or care plan than if you, you try and force something on to somebody.
Trusting and having good rapport with the healthcare professional who facilitated the ReSPECT conversation was important to patients and relatives. As explained by relative 9, although ReSPECT ‘was totally new’ to them,
Because I know the doctors well, I think the process was good. I, I trusted the doctor and we, we know, I know that she knows Mum well, I know her quite well, so we were able to do it on the phone. I think if, if it had been a doctor I didn’t know very well then it would have been much more difficult.
While deferring, waiting with, or gently introducing ReSPECT conversations was a preferred approach among the GP and nurse participants, care home staff favoured early completion to prevent physical/moral harm to residents in an emergency. Not having a ReSPECT form during an emergency could substantially harm patients. A harrowing example was narrated by a carer who, in her previous assignment as a home care worker, witnessed CPR being performed on the frail, elderly woman for whom she had cared – an event which both harmed the patient and traumatised the participant: ‘She was really, really fragile. Really fragile. And because she didn’t have the ReSPECT form, they had to resuscitate her. And I can hear the “crack” sounds’ (care co-ordinator/senior carer 14).
As several participants explained, not having a clinical background or decision-making authority, but still being held responsible by residents’ relatives, carers depended on the ReSPECT form for critical guidance:
Whenever we have a new admission … straight away [Name] will put them on a GP round next day … I can’t imagine how difficult it would be to look after someone if this was not in place … being a care home there’s only so much care and treatment you can provide.
Thus, folded into carers’ concern with preventing harm to residents was a concern with protecting care home staff, whose timing may not match that of the resident or their GP/nurse.
The conversation: balancing patients’ wishes, families’ wishes and what is clinically possible
ReSPECT is not a direct record of a person’s wishes, but rather of a shared decision-making conversation. However, when asked what ReSPECT meant to them, most patient participants said it was about their wishes; as patient 12 explained, ReSPECT ensured her wishes were recorded ‘in black and white’. Patient participants also described recording their wishes to reduce their family’s future caregiving and decision-making responsibilities (see Chapter 5).
General practitioners, while emphasising that ReSPECT focused on the patient, viewed family involvement in the ReSPECT process as crucial. When patients lacked capacity, families were essential in representing their wishes. But even when patients had capacity, GPs involved families in ReSPECT conversations to ensure that patients’ wishes, reflected in the recommendations, would be followed. For example, one GP explained that a patient’s ReSPECT form.
needed to be redone so that the family were on board with it really and so that they understood the process and so that they were happy to follow through with the ReSPECT form and not call an ambulance if she deteriorated.
Despite the weight given to relatives’ views, patient participants were clear that their wishes should prevail over those of their family. For example, one patient described negotiating with his children, who disagreed with his treatment preferences: ‘I did explain to them that I didn’t want to be brought back if I was going to be like a cabbage … and they sort of thought about it and then they agreed’ (patient 11).
In most cases described by the GP and nurse participants, patients’ and relatives’ wishes matched what was clinically possible; for example, terminally ill patients asked not to be admitted to hospital or receive CPR. However, when patients’ expressed wishes opposed clinical judgement, this presented an ethical dilemma. If patients requested treatment likely to be unavailable, not beneficial or even harmful, GPs and nurses had to consider what counted as an ethically justifiable constraint on patient autonomy. Faced with this dilemma, some GPs and nurses explained to patients that their wishes may have limited impact on future decisions:
[S]ome people are still very much, like, ‘No, I want all treatment to be offered’, and I say, ‘Well, it’s kind of up to the clinician at the time and I can make your views clear in the form, but I also have a responsibility to make the clinical judgment of what your other comorbidities are and what your baseline is in order for that decision to be made’.
Other GPs and nurses preferred to defer or avoid recording specific patient wishes, often suggesting they revisit the conversation. One GP describing this approach explained they tried to respect patient autonomy while being honest about what was possible:
If a person were telling me that they wanted to be resuscitated and I knew it wasn’t physically possible or it [would be] detrimental, I might, although I might not make the DNAR decision, I might make it clear that it’s something that we might have to come back to or it might be a decision that’s made medically if they were to be unwell.
Another GP described recording a ‘for CPR’ recommendation to establish trust and open possibilities for a future conversation and reversal of decision:
But again, sometimes it’s helpful to do the form, put the [for] resuscitation, get their trust, get them to know that you’re not trying to force that on them, and then as, once you have got that trust and as you have further conversations and you can slip that in, they will then listen to those things.
Some participants, however, described deferring to the patient even if their wishes opposed clinical recommendations, citing patient autonomy. For example, one GP did not record a ‘not for CPR’ recommendation for a patient who had terminal cancer because the patient had capacity: ‘It felt like it was a bad decision, but he was, had the capacity to make that bad decision at the moment’ (GP 11, area 2).
In another example, a GP described deferring to the wishes of the family of a patient lacking capacity, despite their own clinical judgement:
[I]t seems crazy to do lots of tests and investigations and charging around for this sort of very elderly patient who’s really who is really like quite frail and demented, who wouldn’t really probably want this and there wouldn’t be any benefit anyway. But the, the relative wants that and so therefore it just has to be put down. I mean I guess the patient, the, the patient or the relative can, you know, they have their own autonomy.
In an emergency: how should recommendations be interpreted? The challenge of acting in the patient’s best interests
In an emergency, if a person lacks capacity to contribute to a decision, healthcare professionals have an ethical and legal obligation to make a decision in the person’s best interests; ReSPECT recommendations inform this best-interests decision. Our data show that ReSPECT recommendations can help determine what is best for the patient and ensure a decision is person centred. However, uncertainties inherent in anticipatory recommendations, ambiguities in how recommendations are articulated and conflicting views over interpretation can lead to patient harm.
Among the patient and relative participants, there was near consensus that ReSPECT form recommendations would be followed in an emergency. For example, one patient said that while his preference for comfort care may not be followed immediately, it will be followed eventually: ‘there might be a delay agreeing what I want … which would then change as the message leads the acute medical team knowing this person has a ReSPECT form in place’ (patient 3). In practice, however, care home managers and GP and nurse participants said that recommendations recorded on ReSPECT forms were not always followed. GP and nurse participants explained that ReSPECT recommendations left space for clinical decision-making in the patient’s best interests on a case-by-case basis. They conceptualised ReSPECT recommendations as guidance and acknowledged that, as the recommendations could not encompass every clinical scenario, there needed to be some flexibility in interpreting these recommendations, either implicitly or explicitly: ‘I’ve put that care plan into place with the proviso of that’s, if in the event of a fall or a head injury if the clinician at the time can assess if he does need to be admitted’ (GP 8, area 3).
General practitioner and nurse participants said that, at times, interpretive flexibility was stretched too far, with recommendations not being followed and thereby causing harm to patients, through either not respecting their wishes or providing inappropriate treatment. One nurse described feeling disempowered after a patient died in hospital, having been admitted contrary to carefully worded, detailed recommendations: ‘She didn’t actually receive anything in hospital that we couldn’t have done at home … So it’s left me sort of like thinking, “Well, what could I have put on there that makes any difference?”’ (specialist nurse 3, area 1).
Many care home staff participants perceived ReSPECT recommendations as prescriptive, feeling that deviations could potentially harm patients. This could lead to conflict with the healthcare professionals who had decision-making authority in emergency situations. As one care home manager described: ‘We do tend to speak up and try and fight for the residents and say, “No, this is what it states, this is what should be happening”’ (care home manager/deputy manager 10).
When ambulance staff did not follow ReSPECT recommendations, some carers felt this compromised person-centred care:
[O]ften we find that if the ReSPECT form says ‘not for admission to hospital’, that the healthcare professional will make their own decision based on their assessment at that time. And then the, that person could end up going to hospital … And I find that confusing and a bit demoralising at times.
Care home staff also felt that healthcare professionals’ insistence on following ReSPECT recommendations despite their apparent inappropriateness could cause patient harm:
And we have had a bit of resistance from paramedics saying no, their form says not for hospital admission. But if that person needs to go into hospital to be hydrated because they’re dehydrated, or to have intravenous antibiotics, that’s where we get a little bit of resistance.
[T]he amount of times we’ve had paramedics come in and refuse to take someone in for sepsis because their [form] says, ‘Not for treatment’, is ridiculous … We, we waste hours and hours of management time trying to get another ambulance out … they don’t understand, because documentation is not clear enough, and the guidelines are not clear enough.
When conflict arose in emergency situations, carers sometimes called on family members to influence the decision. One staff member described how they would ‘ring the families then, and then the families are, like, “Yes, but they can go for this”, so then they’re going’ (care home manager/deputy manager 11) – an example that captures the family’s central role in enacting ReSPECT recommendations.
At its extreme, underinterpretation (or misinterpretation) of the ReSPECT form could lead to patient harm through equating the form with DNACPR. This worried several GP and nurse participants:
My biggest worry is that when somebody says, ‘Have they got a ReSPECT Form?’ they’re meaning, ‘Have they got a DNAR decision?’ … And to be fair, I tend to not fill in a ReSPECT Form if I’m not doing a DNAR decision as well for that reason.
Another type of conflict was described by a GP whose palliative patients asked to die in hospital: ‘they are scared of dying and their family are scared of dying and they don’t want to see that’ (GP 19, area 2). Despite recording a ‘for admission’ recommendation, hospital clinicians refused to comply, raising questions about how the person’s best interests were understood: ‘I definitely had experience with patients who have wanted to die in hospital, and you ring and try and admit them and they’re like, “What? They, they’re palliative. What, what are we going to do for them?” ’ (GP 19, area 2).
Summary
The ReSPECT process encapsulates a range of ethical principles and values, aiming to provide optimum person-centred in an emergency. Enacting the ReSPECT process in community settings can shape how these values are understood, interpreted and weighed. While the ReSPECT conversation takes place between a clinician and a patient or relative, the ReSPECT process is networked within wider relationships, which can include the patient’s family and professional care staff. Families, clinicians and carers may have differing perspectives on how to respect the patient’s wishes and best interests. Uncertainty about illness trajectory, potential clinical scenarios and treatment options can add to the challenge of balancing respect for patients’ wishes and protecting patients from harm. Conflicting perspectives emerge at the multiple interfaces of health and social care services and may influence how ReSPECT recommendations are followed. The ethical challenges of interpreting ReSPECT recommendations reflect wider challenges inherent in best interests decision-making.