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Abstract
Many families of patients hold the view that it is their right to be present during a loved one's resuscitation, while the majority of patients also express the comfort and support they would feel by having them there. Currently, family presence is more commonly accepted in paediatric cardiopulmonary resuscitation (CPR) than adult CPR. Even though many guidelines are in favour of this practice and recognise potential benefits, healthcare professionals are hesitant to support adult family presence to the extent that paediatric family presence is supported. However, in this paper, we suggest that the ethical case to justify family presence during paediatric resuscitation (P-FPDR) is weaker than the justification of family presence during adult resuscitation (A-FPDR). We go on to support this claim using three main arguments that people use in clinical ethics to justify FPDR. These include scarcity of evidence documenting disruption, psychological benefits to family members following the incident and respect for patient autonomy. We demonstrate that these arguments actually apply more strongly to A-FPDR compared with P-FPDR, thereby questioning the common attitude of healthcare professionals of allowing the latter while mostly opposing A-FPDR. Importantly, we do not wish to suggest that P-FPDR should not be allowed. Rather, we suggest that since P-FPDR is commonly (and should be) allowed, so should A-FPDR. This is because the aforementioned arguments that are used to justify FPDR in general actually make a stronger case for A-FPDR.
- Family
- Autonomy
- Children
- Emergency Medicine
- End-of-life
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Introduction
While a few of us medical ethicists and professionals are still struggling to promote and defend the practice of family presence during adult (≥18 years) resuscitation (A-FPDR), family presence during paediatric resuscitation (P-FPDR) is much more commonly accepted.1 We argue that if we accept the practice of P-FPDR, we should also accept A-FPDR.
The main arguments to justify FPDR in general rely on the scarcity of evidence demonstrating harm to patient care, proven benefits to relatives and respecting patient's autonomy. We argue that the case for A-FPDR is stronger than the case for P-FPDR for corresponding three main reasons. First, the strongest available evidence demonstrates no negative effects of FPDR on patient outcome. However, this evidence solely pertains to adult patients. Second, while strong evidence suggests that relatives benefit from being present in their adult kin's cardiopulmonary resuscitation (CPR), similar evidence relating to paediatric CPR is much weaker. Third, both legally and ethically, we commonly tend to respect the autonomy of adults more than children. This should extend to patient wishes regarding FPDR as well.
In what follows, we first review the status quo of FPDR. We next elaborate on these three arguments. We wish not argue against P-FPDR, but solely to suggest that the case for A-FPDR is stronger than the case for P-FPDR, notwithstanding the fact that the latter descriptively is more commonly accepted.
Status quo: empirical data
In Europe, ‘[in]…less than half of countries family members are usually allowed to be present during CPR (adult 10/32 and children 13/32). This has not substantially changed in the last 10 years’.2
As suggested by this statement, while both A-FPDR and P-FPDR are not standard practice,3–5 the latter seems to be much more accepted among healthcare providers (HCPs).
P-FPDR
The 2010 American Heart Association (AHA) guidelines recommend for FPDR. However, their recommendation for P-FPDR is stronger than their recommendation for A-FPDR (I vs IIa) based on stronger evidence to support P-FPDR compared with A-FPDR (level B vs C).6
Despite new relevant evidence that emerged in the interim (see below), the 2015 AHA guidelines issue a much weaker recommendation in favour of A-FPDR,7 while their strong recommendation in favour of P-FPDR remains unchanged from 2010.8
Most clinicians seem to support P-FPDR. Jarvis9 found that 62% of clinicians believed that if a child were to die, the family's bereavement process would be aided by being present in these final moments. Fein et al 10 found that 63% of attending physicians supported P-FPDR during trauma and medical resuscitation, while 66% of nurses supported it during medical resuscitation vs 62% supporting it during trauma resuscitation. A retroactive study found that 70% of 57 HCPs supported P-FPDR.11
Similarly, most parents wish to have the option of P-FPDR.3 ,5 One retroactive survey found that 95% of 22 parents who witnessed CPR experienced it positively: they felt their presence helped them and their child, and that it facilitated their understanding of the situation. One hundred per cent would witness CPR again.11
A-FPDR
HCPs' attitudes towards for A-FPDR vary greatly, but overall most HCPs oppose A-FPDR.1 ,4 For example, Köberich et al 12 surveyed German intensive care nurses in 2008 and reported that 99.4% had never provided family members with the option to witness CPR and 89.9% had never been asked by relatives to be present.
The latter datum likely cannot be explained by lack of relatives' will to be present, since most relatives in different countries support A-FPDR. Relatives commonly claim that FPDR is their right, or believe that FPDR may benefit the patient and themselves.1 ,13
The majority of adult patients want relatives to be present during emergency procedures and are comforted and helped by having them there.1 ,13 Benjamin et al 14 found that out of 200 survey participants over the age of 17, 76% would want a family member present during their own resuscitation.
Clearly, there is a disagreement between HCPs on the one side and family/patient's views on the other side, which needs to be addressed.
Should FPDR be allowed?
Many HCPs oppose FPDR for fear it would hurt patient care, families and the HCPs themselves.1 ,4 ,15 ,16 Proponents usually respond by pointing to the lack of empirical evidence to support these fears,5 or by pointing at evidence demonstrating either lack of negative effects or positive effects of FPDR.1 ,7 ,15 ,17 ,18 Additionally, proponents claim that autonomous patients should decide––even by way of advance directive––whether their relatives should be allowed the option to be present.1 ,15 ,18 Next, we focus on the latter, deontological argument and two of the former, consequentialist arguments. While we agree that these arguments are sound in supporting FPDR, we claim that they apply more strongly to A-FPDR compared with P-FPDR. This has two meanings. First, that both A-FPDR and P-FPDR should be allowed. Second, that if we accept P-FPDR in clinical practice, then we should accept A-FPDR as well.
Patient care
One common argument against FPDR relies on the potential harm to patient care. Indeed, HCPs are justifiably sensitive to any factors that may hinder survival rate. The survival-to-discharge rate of adult patients undergoing CPR in a hospital setting is 23.9%,19 while the survival rate of paediatric patients in a hospital setting is 40.2%–48.4%.20 ,21 Interruption by relatives may potentially reduce the chances of the patient's survival, and their presence may increase the anxiety of HCPs. HCPs particularly fear distraction by family members acting as violent obstacles to necessary procedures.4 These concerns may be particularly pertinent to paediatric CPR, where survival rates are much higher and care is less futile.
These concerns however may be assuaged by citing a major recent study that has compared hospitals with and without formal policy to allow A-FPDR and found no statistically significant differences in adult CPR survival rates.22 Based on this datum, one may reasonably argue that FPDR should be allowed because it is preferred by patients (status quo: empirical data), it benefits relatives (benefit to relatives) and does not harm patient care.
Unfortunately, since the inclusion criteria in this study included patients above 18, it plausibly cannot be used to justify P-FPDR. As far as we are aware, no study to date has examined the effects of P-FPDR on the outcome of paediatric CPR (one study however demonstrated no negative effects of family presence on non-resuscitative patient care in 1229 paediatric patients with trauma23).
If, as it has been suggested may sometimes happen, the parents of children are overbearing, they might plausibly be more likely to intervene. We certainly do not espouse such a view, but we do posit that, if this view is correct, relatives of adult patients may be less likely to behave in the same way. Thus, the risk of relatives interfering in patient care may be higher for P-FPDR, and consequently, this argument against family presence becomes stronger for P-FPDR. Having that said, cases of family interference during CPR in either adults or paediatric patients are rarely reported.5 ,11 ,24
In both these ways then, the argument that FPDR should not be allowed because it might negatively affect patient care is stronger for P-FPDR.
Benefit to relatives
Another common consequentialist argument in favour of FPDR is that it benefits relatives. This assertion is indeed supported by strong evidence. The PRESENCE study conducted in France enrolled 570 relatives of patients who underwent CPR by prehospital emergency medical service units. HCPs systematically invited relatives to witness CPR in the intervention group, whereas HCPs in the control group were instructed to follow their routine. The study revealed that up to 1 year follow-up, the control group suffered increased prevalence of post-traumatic stress disorder depression and complicated grief reactions compared with the intervention group.24 ,25
Alas, PRESENCE only included adult patients. The only randomised controlled study that included paediatric as well as adult patients had little statistical power, and ended prematurely (because HCPs believed beyond a doubt that FPDR benefited relatives).26 Thus, the data documenting benefits of P-FPDR to relatives mainly stem from retroactive surveys and anecdotes.3 ,5 These are empirically weaker than the results of the PRESENCE trial. Consequently, the argument that P-FPDR should be allowed because it benefits relatives is weaker compared with the same argument relating to A-FPDR.
Patient autonomy
Patients commonly can, and/or should be able to, govern their own healthcare to a large extent, including the way they die. Thus, patients should be able to dictate whether their relatives would be offered the option to be present during CPR, arguably regardless of its effects on patient outcome.1 ,15 ,18
However, we tend to respect the autonomy of adults more than paediatric patients in most settings, including medical settings. As parents, we do not allow them to stay up late to watch television or to have free access to the medicines cabinet. As HCPs, we usually consider their parents as surrogate decision-makers.1 This may extend to their wishes regarding FPDR as well. If respect for autonomy is then used as an argument for FPDR, it seems to be stronger for adults than for paediatric patients. If we allow children to have this autonomous right, by way of surrogate decision-makers for instance, adults should be able to obtain it as well.15
Conclusion
In this paper, we first demonstrate that FPDR is more widely accepted in paediatric settings than in adult patients, and then explore whether this is justified. We argue that it is not, and conclude that while P-FPDR should be allowed, the ethical case for A-FPDR is stronger.
We provide three arguments to reach this conclusion: no harm to patient outcome, benefit to relatives and respect for patient autonomy. All three arguments seem to be stronger for A-FPDR compared with P-FPDR because of the available empirical evidence and/or the relevance and normative power of the latter argument when applied to adults and children. None of these three arguments is used to argue against P-FPDR as the same ethical arguments apply in these cases as with adults.
Importantly, normalising FPDR does not mean that family members would be forced to witness this procedure, nor that every family member would be allowed into the room without enforcing rules such as exclusion in the case of abuse or risks posed to the patient or staff. Accepting family presence in P-FPDR is a huge step from where society was even several decades ago. We should continue pushing forward and challenge generally accepted medical norms such as the default exclusion of relatives during adult resuscitation.
References
Footnotes
Contributors CV orchestrated the writing and was the main writer of the original submission. She also conducted the bulk of the research. ZL proposed the idea, commented on the drafts and actively contributed to the writing, particularly of the revised submission.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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