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Parental manual ventilation in resource-limited settings: an ethical controversy
  1. Emily Barsky1,2,
  2. Sadath Sayeed3,4
  1. 1 Division of Pulmonary Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA
  2. 2 Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA
  3. 3 Division of Newborn Medicine, Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA
  4. 4 Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Dr Emily Barsky, Pulmonary Medicine, Boston Children's Hospital, Boston, MA 02115, USA; emily.barsky{at}childrens.harvard.edu

Abstract

Lower respiratory tract infections are a leading cause of paediatric morbidity and mortality worldwide. Children in low-income countries are disproportionately affected. This is in large part due to limitations in healthcare resources and medical technologies. Mechanical ventilation can be a life-saving therapy for many children with acute respiratory failure. The scarcity of functioning ventilators in low-income countries results in countless preventable deaths. Some hospitals have attempted to adapt to this scarcity by using hand-bag ventilation, as either a bridge to a mechanical ventilator, or until clinical improvement occurs rendering mechanical ventilation no longer necessary. In instances of hand-bag ventilation, an endotracheal tube is first placed. Family members are then asked to play the role of a ventilator, manually compressing a bag repeatedly to inflate the child’s lungs. This approach is fraught with numerous ethical challenges. A careful examination of the data and a nuanced approach to the ethical considerations are imperative. Ethical arguments in support of and in opposition to allowing parental hand-bag ventilation are explored, including the best interests of the child, the child’s right to an open future, beneficence and parental protection, legitimising substandard care, and finally, contextual concerns. An algorithmic, potentially ethically permissible approach to parental participation in manual ventilation is proposed.

  • ethics
  • resource allocation
  • autonomy
  • paediatrics
  • decision-making
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Background

Lower respiratory tract infection (LRTI) is a leading cause of mortality worldwide. It disproportionately affects children. As the most common cause of mortality in children under age 5, it accounts for approximately 13% of deaths and 653 000 annual deaths in this age group.1 2 The main burden of disease is borne by those living in poverty, particularly in sub-Saharan Africa and South Asia.3

Many of the paediatric deaths due to LRTIs are preventable.4 Although we have made progress in reducing associated mortality, most of the global focus has centred around vaccination, nutrition and antibiotics.4 While vitally important, these strategies are insufficient for children with respiratory failure. Mechanical ventilation is a widely accepted, effective therapy for children with acute respiratory failure due to LRTIs and a myriad of other conditions such as traumatic brain injury and malaria.5 While its temporary use can be lifesaving for children, it is typically inaccessible to most children in inadequately resourced settings, most often residing in low-income countries (LIC). Healthcare inequity due to relative resource scarcity such as ventilator availability and the resultant hundreds of thousands of preventable paediatric deaths epitomise a morally fraught, rapidly expanding, global health horizon.

In part due to an emerging interest in addressing global health inequity, clinical management of acute respiratory failure in such settings has become increasingly complex. Hospitals in LICs are growing more accustomed to accepting healthcare technologies by way of donation, and with the appearance of mechanical ventilators, the possibility of survival has emerged for conditions where death used to be understood as inevitable. However, many such facilities lack the necessary supportive systems (e.g., respiratory therapists, technology maintenance units) to use them optimally or sustain their productivity. Thus, the simple presence of mechanical ventilators in LICs does not solve deeper, systematic healthcare delivery challenges in these settings. Furthermore, in these contexts, the number of working, available ventilators may be insufficient to meet the demand, creating a rationing dilemma.

Nevertheless, given the possibility of using mechanical ventilation in a particular clinical setting, physicians might reasonably still feel compelled to initiate manual hand-bag ventilation (HBV) as a temporary bridge to the technology.6 7 In such a scenario, an endotracheal tube is placed by the medical staff, but rather than quickly connecting it to a mechanical ventilator, as is routinely done in resource replete settings, it is connected to an Ambu bag. Ventilation takes place by manual compression and release of the bag dozens of times a minute, creating the respective inflation and deflation of the patient’s lungs. While HBV is not an especially technically demanding task or difficult to teach, it is prone to human error particularly for longer periods of time, including complications such as under or overventilation, pneumothorax, dislodgement of the endotracheal tube and provider fatigue. And, if suspended for several minutes in cases of true respiratory failure, death predictably results.

The decision of whether to intubate and hand-bag ventilate a child with acute respiratory failure, even when performed by professionally trained providers, in an inadequately resourced setting facing constant rationing pressure, is exceedingly difficult.6 In this manuscript, we are interested in examining an added ethical complexity: asking parents to perform HBV for some period of time due to professional staffing shortages. While we are unaware of any verifiable data on the frequency of such a practice in LICs, at least one published paper has reported the practice, and both authors have observed parent HBV first hand in different LIC settings faced with the common denominators of the possible availability of mechanical ventilation and constant staffing shortages.6

The suggestion that it can be ethically defensible to allow parents to participate in the highest stakes, life or death, caregiving might strike some as implausible. However, we argue that a negative intuition about the permissibility of such a practice is worth closer scrutiny. We offer here an initial thought experiment to prime the reader for such scrutiny: if your own child faced this terrible dilemma, would it be unreasonable to want the option to participate in such caregiving if the only alternative was your child’s death? The question strikes us as even more pressing given the current COVID-19 pandemic. It is our belief that more than a trivial minority of parents, regardless of their lived circumstances (and moral worldview), would at least want to consider it. This to us makes the case worthy of deeper reflection. Furthermore, while many of us might insist that addressing the numerous structural (political, economic, historical) injustices that create such terrible microethical dilemmas warrant our primary (and only) attention, in the interim, the actual instances in which these dilemmas continue to occur remain no less pressing for parents and providers.

Our analysis will proceed with a review of the available, minimal evidence on outcomes with extended periods of HBV for critically ill children. We then briefly canvas conventional Western bioethical concepts that might be employed both in support of and in opposition to allowing such a practice. We next note contextual concerns about the translatability of common bioethical norms in inadequately resourced settings in LICs. Lastly, we propose an ethically provocative path forward by way of a practical algorithm. In conclusion, we return to situate this microethical dilemma within the broader, far more morally problematic complexity that is the pursuit of global health ‘equity’.

Evidence: survivability with manual ventilation

To our knowledge, published data on extended, hours-long HBV in resource-poor LIC settings are minimal. Our search revealed two reports from India. The first is a retrospective observational analysis of 106 children presenting to the emergency unit with an underlying condition requiring intensive care in 2011 over a six-month timeframe. Forty-two children could not be immediately transferred to the intensive care unit (ICU), so intubation and HBV were initiated in the emergency department.6 The authors report that HBV is ‘provided by either healthcare providers and more commonly parents or guardians till beds are available’, but do not provide any further detail.6 Notably, 16 of 42 (38%) children survived to discharge, and of these 16 survivors, median HBV was 7.5 hours.6 Fourteen were transitioned to a ventilator in the ICU, for a median of 6 days. The authors report that two surviving children diagnosed with pneumonia received HBV alone for over 48 hours.6

The second report was a prospective randomised control trial of fluid resuscitation in 147 children with septic shock, which assessed ventilation and mortality as a secondary outcome.7 Forty-five per-cent of the children with septic shock required ventilation. These children received HBV if there was a lack of ventilator or ICU bed availability. The report does not specify whether HBV was provided solely by healthcare providers, parents/guardians or some combination. Survival was 83.3% if the child was bridged to a mechanical ventilator within 6 hours, and dropped to 48.6% if a ventilator was not available within that timeframe.7 Notably, 76.2% of the children survived if they were extubated within 6 hours.7

At a minimum, these two reports suggest that HBV, for a period of several hours, is not a death sentence. Time-limited HBV may, in fact, serve as an effective bridge to a mechanical ventilator, with an unsurprising increase in mortality risk as the length of HBV also increases. These deductions make clear sense from even a basic understanding of pulmonary physiology; anaesthesiologists frequently perform HBV in operating rooms for extended periods of time when clinically indicated. Nevertheless, the ability for parents or guardians to successfully participate in extended HBV remains factually obscure. Clearly, further data would help, and it would be a mistake to draw strong conclusions based on this scant data. However, given what is known, we argue (1) it would be equally improper to claim or presume that instituting extended HBV is probabilistically futile, and (2) parents/guardians have never been successful in providing HBV for some period of time in LICs. Put differently, if extended HBV including parental participation never resulted in the survival of a child, then all the potential arguments in favour of it would carry no ethical weight—but that claim cannot be substantiated. We also note as an aside that defining futility in any clinical context remains a confused practice, frequently complicated when practitioners seek to cloak sincere concerns about externalities and value-laden judgments (ie, cost effectiveness, negative impact on family and community, quality of life with survival) into the claim.8 9

Arguments supporting parental manual ventilation

Best interests of the child and the harm principle

Autonomy is a canonical principle in Western bioethics, and in paediatrics, when children cannot make decisions for themselves, the concept of autonomy is expanded to include their formal guardians.10 As such, parents are traditionally granted broad decision-making authority for their children under a rebuttable presumption that they are best positioned to determine the needs of their children, and possess a natural desire and duty to prioritise their children’s welfare and safeguard their future autonomy.10 Medical decisions typically cannot be determined in isolation of parental preferences. Legally, parents hold decision-making authority and are generally given significant freedom to do so.11

Parents are generally expected and socially encouraged to act in their child’s best interests. This entails maximising the good for the child and minimising the risk of harm, which in the medical context, means choosing the treatment alternative that is likely to lead to the highest net benefit.11–14 When a child suffers from profound respiratory failure, the options are twofold: intubation with ventilation, or death. In an inadequately resourced setting where mechanical ventilation is not immediately available, HBV offers the only chance of survival, however improbable this may be. As long as the child is not indefensibly suffering in the life-sustaining treatment process, it is ethically reasonable for a parent to prefer the option that does not carry 100% mortality assumed by lack of intervention.

There are instances when parental autonomy can be overridden. The best interests standard suggests that this occur only when the parental decision pose a harm to the child of significant magnitude and high probability, thus creating space for parents to make unconventional, even risk-bearing choices (e.g. refusing vaccinations).15 In the case of attempting HBV for reversible respiratory failure, it is difficult to conceive that parents cross such a harm threshold given the alternative is their child’s death.10 16

Right to an open future

The child’s ‘right to an open future’ provides an additional argument in favour of HBV. This right promotes the notion that we ought not to limit a child’s future prospects whenever possible, and should therefore act in a way that preserves a child’s future opportunities and choices.17 It is an ethical concept created to protect children who cannot make autonomous medical decisions, in order to facilitate their future autonomous decision-making as adults.18 Applied to our scenario, any intervention attempting to save a child will better promote his future options than no future at all, and arguably, parental HBV would not only be ethically permissible, but required.

Objections to allowing parental manual ventilation

Expanding interests: beneficence and the need to minimise harm to parents

Although disfavoured as an unqualified justification, paternalistic worry for the well-being of family stakeholders remains an important ethical consideration in any life-threatening clinical situation. In settings like the USA, parents facing an unexpected life and death crisis for their child are not typically presumed incompetent or incapacitated in terms of decision-making authority, and yet emotion affects decision-making.19 Even in resource replete settings, where we often ask parents to participate in life or death decision-making, we have great reason to worry about inducing paralysis in their capacity for reflective reasoning, and lifelong mental trauma as a result of being forced to participate.19 Many parents feel overwhelming duress, that they have no choice under such circumstances, as a decision to forego participation definitively results in the child’s death. Parental HBV almost certainly compounds this mental anguish with the addition of such a physical task. Moreover, if the child dies while being hand ventilated by the parent, the burden and guilt of death causality might be unbearable. Parents may see themselves as the direct cause of their child’s death, an unimaginable difficulty to struggle with for the rest of their lives carrying grave psychological implications. Guided by principles of beneficence and non-maleficence towards the parents, healthcare professionals appropriately feel an obligation to protect parents from this foreseeable and likely harm, and to broaden their scope of concern beyond the survival interests of child–patient.10

Indeed, it can be argued that the interests of children with critical illness ought not to be viewed in isolation. A broader approach towards paediatric decision-making includes taking ethical consideration of the well-being of the family unit. Families have goals and interests, which may come into conflict with a child’s survival interests. Permitting parental HBV could be one such instance, when doing so could come at the expense of the long-term well-being of the parents or siblings for a fleeting chance of survival. Some argue that parents ought to be allowed to discount the survival interests of a child in favour of those of the family; only if the parental decision is generally considered negligent or restless, with ‘gross ineptitude in moral resolution’, should this be overridden.20 21 A choice to abstain from participation in HBV under such high-stakes circumstances does not obviously meet this threshold.

Harms associated with legitimating substandard care

Using parents as a surrogate for mechanical ventilators is clearly substandard care, and perpetuates a strong tendency within the high-income country donor community to ignore, or at least (conveniently) continue to delay combating, deep structural and systemic indifference to global socioeconomic injustice.22 23 The normative consequences of this tendency are hard to quantify, but arguably, are pervasive and insidious, as it can imply ‘that one accepts the current global imbalance in resources and is not willing or prepared to take any steps to address it’.24 Nevertheless, within much contemporary Western bioethics discourse, the permissibility of sanctioning different standards of care based on socioeconomic context remains debated, with two prominent commentators arguing: ‘cross-national differences, even when they stem from background injustice, make different responses ethically appropriate in different countries’.25

Related to the preceding, in LICs, roles normally fulfilled by healthcare providers are sometimes redistributed to those with less (or no) professional training, such as community health workers. This strategy, referred to as ‘task shifting’, has been widely implemented to address healthcare access limitations, particularly around the delivery of medications or otherwise routine care provision.26 27 While task shifting clearly can and does improve efficiency, cost and outcomes under conditions of severe resource scarcity, it does not thereby bypass the ethical concerns earlier mentioned. Parental participation in care might be viewed as an extreme example of task shifting.28 29 However, it is entirely unclear to what extent families might want to participate in medically complex care.30 31 Literature specific to resource-limited settings is negligible. In one Iranian report, in a patient population of children with chronic illness, parents successfully assisted with medical tasks such as intravenous medication administration and recording of vital signs.32 The study found that communication and negotiation were essential for successful provider–parental collaboration.32 The applicability of these findings to more complex and high-stake situations such as HBV ventilation is unknown.

Contextual concerns and reality checks

Normative bioethical claims in clinical medicine in settings like the USA do not neatly or simply translate to settings with thick cultural traditions born of different historical and social circumstances. The prioritisation of autonomy, for example, is not so straightforward within communities that customarily rely on gendered or familial hierarchies for decision-making.33 The attitudes of healthcare providers working in LICs often reflect these local, familiar and longstanding social practices; in a large study of over 1400 physicians working in ICUs in 16 different Asian and Middle Eastern countries, 74.5% believed that withholding and withdrawal of life-sustaining treatment were ethically distinct, a claim that is frequently critiqued or dismissed in Western bioethical discourse.33 We recognise the challenges inherent in pragmatically transposing value laden ideas into unaccustomed clinical settings. Nevertheless, we contend the fact of very different sociocultural realities in LICs ought not to prohibit opportunities to introduce new discussions surrounding ethical practices among local stakeholders, and when feasible, these communities stand to benefit from such reflective engagement.

Provocative path forward: an algorithm for decision-making

In facing ventilator scarcity, neither the option of allowing a child to die from a preventable cause or using parents to manually hand ventilate a child to maximise the chance of survival is without great risk of life-altering consequences. The moral residue extends beyond the child and affects the entire family unit, as well as the healthcare team. Coupling the real possibility of survival with prolonged manual ventilation with a complex, unpredictable, lifelong impact on parents, we argue that parental HBV should not be dismissed out of hand as inherently unethical, just as it should not be a reflexive default to offer the option. To us, since a clear answer remains ethically ambiguous, and depends on the relative weight one chooses to assign to potential outcomes, we contend it is worthwhile to construct one paradigm to promote further discussion, ideally at the clinical level where these dilemmas are playing out. It is our position that under conditions where parental HBV can offer the only chance of survival in cases of reversible acute respiratory failure, there may be a way in which to incorporate it into a limited set of care scenarios in an ethically sound manner.

In sharing this algorithm (figure 1), we highlight that it should not be understood as fixed, final or even ideal—rather, it is intended as a flexible framework to introduce to local stakeholders the possibility of a developing a locally relevant clinical practice standard if their setting is amenable. We recognise that there may be very few such settings or very many in the world today. We also emphasise that ethically paramount in our algorithm is an attempt to balance the two strongest, competing normative concerns: respecting the survival interests of the child and minimising foreseeable harm to parent–guardians.

Figure 1

An algorithmic approach to an ethically sound introduction of hand-bag ventilation (HBV) in resource-limited settings.

We describe the key, ordered components informing the algorithm as follows:

  1. Gauge institutional and clinical staff/professional provider ‘buy-In’ for parental participation in HBV.

    1. Realistically, only local, professional healthcare providers stand well positioned to consider the sensibility of introducing parental HBV in their clinical setting. There must exist consensus about the ethical acceptability of the practice locally; this would include not only medical staff (e.g. physicians, nurses, clinical officers) tasked with its implementation having dedicated time to deliberate on relevant value prioritisation in their settin, but also a meaningful assessment of communal normative receptivity to such a practice (e.g. how medical decision-making, direct parent caregiving and end of life care manifest within local traditions, customary belief systems, etc.).

  2. If consensus/buy-in if established, medical staff create clear clinical indications for offering time-limited endotracheal intubation and HBV only in cases of potentially reversible acute respiratory failure.

    1. Parental HBV must only be used only as a bridge to mechanical ventilation and/or return of adequate spontaneous breathing within a limited timeframe. Mechanical ventilators must be foreseeably available and operational in the institution.

    2. Eligibility: respiratory failure must be judged as reversible within a reasonable timeframe (e.g. hours to several days).

      1. Example one: previously healthy 2-year-old girl develops acute respiratory failure in the setting of a large right-sided pneumonia.

        1. Expected to recover with adequate antibiotics and invasive respiratory support within 2–3 days. Therefore, she is a potential candidate for HBV.

      2. Example two: five-year-old boy with inoperable, refractory, progressive brain tumour develops profound apnoea and respiratory failure.

        1. Respiratory failure irreversible because due to brain tumour, which is refractory to further intervention. Patient with indefinite need for ventilator support. He is not a candidate for HBV.

    3. Variations by setting and resource availability, as needed.

  3. Develop a contextually and culturally appropriate protocol to standardise the practice of a trial of time-limited endotracheal intubation and HBV. Example protocol:

    1. Care team determines patient eligibility for HBV.

    2. If eligible, physician engages in contextually appropriate communication to maximise the potential for parental comprehension of treatment options including redirection of care and associated risks and benefits. Emphasis on the intervention being offered as a ‘trial’ promotes the uncertainty of outcome and non-obligatory, time-limited nature of the proposal.

      1. Example: ‘Your child’s lungs are failing and he is no longer able to breathe on his own. He is very likely to die regardless of what we do next. It would be a loving and caring decision to let him die peacefully in your arms now, and we will do our best to keep him comfortable during the dying process. Alternatively, there is a trial intervention that is uncertain to work, but that we are willing to offer if you are able to and wish to participate as a direct care provider under our supervision for a limited period of time. We emphasise that if you want to try this intervention, your son will still mostly die given how sick his lungs are, and his death is not your fault in any way’.

      2. Explain exactly what HBV is and what participation entails, and how professional staff will provide spot supervision and assessments on some pre-established recurring basis (e.g. every 60 min).

      3. Explain that even if parents decide to participate in HBV, it may be discontinued by providers at any point if no ventilator becomes available or if the child’s clinical status deteriorates to the point that non-survival is imminently presumed (e.g. terminal bradycardia, hypotension).

      4. Explain the palliative alternative, and why it is an acceptable choice to avoid HBV, including emphasis on minimising pain and suffering.

      5. Answer questions, ensuring provider ownership of non-survival outcome.

      6. If family seems hesitant to participate, care team can unilaterally proceed with redirection of care.

    3. If family decides to proceed with HBV, proceed as below.

    4. Care team must provide parental teaching in manual ventilation, including initial supervision, to ensure adequate technique.

    5. Families may manually ventilate for a maximum time that reflects the clinical judgment of the medical team. It would be prudent to set a time limit of 6–8 hours based on the scant data available, but this ought to be locally determined, taking into account the ongoing reversibility of the underlying disease/ongoing clinical assessment, the availability of ventilators in the near term, and the ongoing availability and willingness of the family to continue. At any time, providers have the authority to discontinue.

    6. No family member can manually ventilate for more than 4 hours consecutively to reduce physical fatigue.

    7. There must be more than one adult willing to assist with manual ventilation so as to switch off.

    8. Care team must be available to take over should concerns arise and to provide brief breaks as needed.

    9. Patient must be assessed by a clinician every hour to determine clinical course and continued candidacy for manual ventilation.

    10. When a ventilator becomes available, patient transitioned from manual to mechanical ventilation.

    11. Exact protocol to be adapted based on clinical setting as needed.

  4. Prospectively monitor processes, outcomes, solicit feedback from providers and ideally families, collect and analyse data, and adapt and revise protocol accordingly.

Conclusion

Microethical dilemmas in a world full of inequality

Acute respiratory failure is an unfortunately all too common, preventable cause of death in children in resource-poor countries. This is largely due to resource scarcity, particularly ventilators and staff. It is important to situate the specific problem we address in this paper within a broader moral reflection on global health equity. Massive human and material resource scarcity (including ventilators) is a fundamental problem in poor LIC settings. However, the scarcity that continues to persist and create deadly, real, ethical dilemmas for poor patients across the world is a function of deliberate choices made by politically and economically powerful interests and a morally problematic reticence to more radically confront long-standing structural injustices across populations:

The question whether it is ethical to provide cheaper, less effective interventions to poor countries is perhaps relevant only in wealthy nations, where there really is a choice to be made. After all, rich countries can, and do, devote large portions of their vast resources to warfare and to luxuries instead of supporting the provision of basic needs for poor countries.24

We argue that to pretend that there is not enough wealth, and therefore resources, to alleviate most healthcare inequity in the world is to engage in a common and convenient moral deception that conveniently suits the resource rich person’s narrative about his or her narrow scope of ethical responsibility. Regardless, some ICUs in resource-poor settings have taken to intubation of children, with parental manual ventilation due to ventilator scarcity. It is a tragedy that such ‘choices’ even need to be considered. The microethics of this are complex. Manual ventilation does promote the child’s right to an open future and the child’s survival interests. However, it also risks parental vulnerability, may act against the interests of the family, facilitate substandard care, improperly assign roles and to some extent, perpetuates structural violence on the poor and least economically advantaged. On balance, if it can be introduced with a standardised protocol with contextually sensible safeguards in place, it may have an ethically defensible role in the appropriate clinical context.

References

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Footnotes

  • Contributors Both authors wrote and edited the manuscript in its entirety.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement There are no data in this work

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