Telling porkies

by Dominic Wilkinson (@Neonatalethics)

 

One of my registrars asked an interesting question this morning. A commonly used life-saving medicine in newborn intensive care is derived from animal products; should parents be told?

Very premature infants are commonly given a medication into their lungs that helps them to breathe. This medication, surfactant, is often derived from animal products. Surfactant is one of the most effective forms of treatment in neonatal intensive care. It significantly reduces the risk of death for premature infants with breathing trouble as well as reducing a number of serious complications.

One commonly used form, poractant alfa (Curosurf) is derived from minced pig lung. Another form, beractant (Survanta) is made from minced up calf lung.

However, some parents of premature infants might have concerns about the animal derived origin of this treatment on religious or ethical grounds. Muslim or Jewish parents might object to the use of porcine surfactant, while Hindu parents could object to the use of bovine surfactant. Vegan or vegetarian parents might have concerns about the use of either surfactant.

So should parents be informed about the origin of this drug?

Parents of extremely premature infants are counseled about many elements of their child’s treatment. If there is time they often receive counseling before the child is born. After delivery, neonatologists will often spend considerable time talking to parents about their infant’s progress, and obtaining informed consent for major treatments that are felt to be necessary.

However, doctors in newborn intensive care do not regularly discuss with parents the possible origin of surfactant – even where parents’ religion is evident, and they might be anticipated to have concerns. In one survey, from North America, only 2% of neonatologists routinely discussed the animal origins of surfactant.

Why don’t neonatologists discuss this issue with parents?

One reason might be that true religious objections to surfactant would be likely to be rare. There have been clear statements by religious leaders from all major religions that animal derived medication are allowed in emergency and life-saving situations. For example, orthodox Jewish religious tradition permits many religious strictures to be broken where this would save a life (see here, here,  here.) However, even if most religious parents would accept animal derived surfactant for their child, there could still be some who would not. Furthermore, religious exceptions may only permit the use of the prohibited animal where there is no alternative. Yet there is an alternative. Hindu parents may prefer to use porcine surfactant, while Muslim parents may prefer bovine surfactant.

A more significant reason not to inform parents of the origin of their infant’s treatment is because there may be no available alternative. In one survey, only one out of 10 neonatal units in England and Wales stocked both bovine and porcine surfactant. The rest stocked one or the other. Where there is only one type of treatment available, there is relatively little to be gained from informing parents about the nature of this particular medication. Parents cannot choose to have the alternative form of surfactant because it isn’t stocked. And they cannot choose for their child to forego surfactant because of the urgent and potentially-life-saving nature of the treatment. Just as for Jehovah’s Witness parents declining a blood transfusion for their child, doctors would almost certainly deny a parents’ request that their child not receive surfactant (on the basis of religious objections), and would seek a court order if necessary. In that setting it seems unnecessary, perhaps even cruel to inform parents about the animal origins of surfactant. It could only cause distress in some parents (who perhaps are unaware or do not understand the religious rulings that would permit bovine/porcine surfactant), without giving them any real choice in the matter.

The more tricky question then is whether neonatal units should stock more than one type of surfactant in order to allow parents to make a choice. Perhaps neonatal units should routinely stock bovine and porcine surfactants? There are even some newer totally synthetic surfactants that contain no animal products and might be acceptable to strict vegans.

If there were no downside to stocking multiple surfactants, then it would seem straightforward that neonatologists should be providing parents with these options. However, there are potential downsides. There have been conflicting results in trials, yet it appears that porcine surfactant may be more effective than the bovine version, with meta-analysis showing a reduction in deaths, and duration of treatment. Furthermore, the costs of different surfactants vary.  Synthetic surfactants are currently more expensive than available animal-derived versions (though they might save money in the long run if proven to be more effective). There are also significant pharmacy costs in stocking multiple different versions of a medication.

This leaves us with questions that are perhaps harder than the one that we started with. Giving parents choices that would respect their religious or ethical values might come at the cost of worse outcome for infants, or just at higher financial cost. How much are we willing to pay to respect or promote parental autonomy?

Image by ceejayoz from wikimedia commons

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11 Responses to Telling porkies

  • Anthony Drinkwater says:

    Thanks for the post.
    To answer your question, “How much are we willing to pay to respect or promote parental autonomy?” :
    My proposition in this case would be “nothing at all”. What right do parents have to inflict their religious views on their child ?
    Rather than talk of parents’ autonomy, shouldn’t we talk of the baby’s best interests ?
    Or am I really missing something ?

  • Dominic Wilkinson says:

    Thanks Anthony, my answer to the question is similar, but not identical. I would be inclined to answer “not very much” rather than nothing at all. Questions of what is in a baby’s best interests are not simply factual – they also involve values. Parents views are relevant to determining a child’s interests. But they also have (some) independent moral weight.

    Let us imagine three examples. Stocking an alternative surfactant would allow some parents to have their personal wishes respected
    1. The alternative surfactant is not as effective and comes at some increased risk of death for the infant
    2. The alternative surfactant is similar in effectiveness, but may involve some increase in the amount of time that a baby stays in oxygen, or the length of time that they need help with their breathing. It costs the same as the current surfactant (with no extra pharmacy costs)
    3. The alternative surfactant is identical in effectiveness but costs more.

    I am inclined to decline to provide the alternative in case 1. I don’t think an additional risk of death is justified to satisfy parental religious or other preferences. (However, it may depend on the magnitude of the increased risk – for example, parents are currently permitted to refuse vitamin K or immunisations. These decisions do impose a small increase in risk of death)
    In case 2, it seems that perhaps we should offer the option of the alternative surfactant – if it is particularly important to parents
    Finally for case 3 I am inclined to think that perhaps parents should have to absorb the cost of more expensive treatment. However, this may have uncomfortable political implications in that it has most impact on poor patients from religious minorities.

  • andy marshall says:

    Very interesting!
    Do you think there is some kind of document which describes the approval of this big-wig Imam? I did see a link to the muslim council of britain but the website’s under repair.. I feel it would be nice to say to parents this is a pig product but it has been approved by X and it is an ‘essential’ treatment, even with a leaflet/website to back us up..
    Perhaps there are jewish/muslim neonatologists or even jewish/muslim hospitals who have worked out a definitive approach..
    Of course, is it the thin end of the wedge? – Are there other pig/cow-derived products in other medicines? I found this useful: http://www.health.qld.gov.au/qhpolicy/docs/gdl/qh-gdl-402.pdf
    Cheers,
    andy

  • Dominic Wilkinson says:

    thanks Andy,
    I found a version of the Muslim Council document on scribd
    http://www.scribd.com/doc/80247519/Drugs-Derived-From-Pigs-and-Their-Clinical-Alternatives
    I haven’t found any official statements stating that curosurf is permitted
    I agree that there is a much wider issue, and the document that you found identifies a very large number of medications that might have animal derivation (including gelatin in capsules)
    in those cases where there is an available non-animal alternative there is more value in discussing options with parents.

  • andy marshall says:

    Given the extensive list of meds, i feel like when someone registers with a GP, the practice should note their ethnicity/religion and give them a leaflet about how there are quite a few meds with animal products in but how (hopefully) their religious leaders have approved their use.
    It would then be up to the individual to raise questions with future doctors/pharmacists about animal origins of products if it was something that mattered to them.
    Most people of course don’t even want to know whether their food was prepared in a way that is morally acceptable to them, so i guess **most** would also not really want to know if their medicines raised ethical issues..
    Cheers,
    a

  • Dominic Wilkinson says:

    I am more inclined to the view that if patients/parents have religious or other reasons for wanting to avoid certain products, that it is their responsibility to inform their health professional about this.
    That tends to be the approach for dietary preferences – if someone’s diet differs from the statistical norm, they should inform their host/caterer/restaurant.
    It is certainly the case for Jehovah’s Witnesses – it is up to them to express a desire not to receive blood products.

    but I am also sympathetic to making available general information from a health service (GP/hospital/NHS etc) for patients with particular religions, with information about what medications contain things that they may prefer to avoid, and the relevant religious rulings

  • Tilly Pillay says:

    I agree that parents with specific objections should be active in voicing these, that parent views are important and that best interest of the child, in the non-life threatening situation, is oftentimes best served by also considering parent perceptions in the decision making .

    Consent, in neonates entering a NICU/LNU in the UK (is implicit in some units and sought with signed parent documentation in others) should be part of a continual process affording many opportunities for information sharing and discussion between medical team and parents. Even so, I do struggle with what exactly ‘informed’ consent means in this context of these issues.

    We have recently debated similar issues regarding use of
    A) heparin in maintaining arterial line patency and as anticoagulant for large vessel thrombosis
    B) duoderm in skin care as opposed to non gelatin derived products for which there are alternatives in neonatology
    and are working towards standardising a referral point for parents queries when they arise actively in this regard in our hospitals. It would be very useful to have a Motherboard to turn to in the UK that is sensitive to the needs of all relevant parties.

  • admin says:

    thanks Tilly,

    I think that it is interesting (and ironic) that these questions about informing parents and discussing with them may actually be more important for interventions that are less critical.
    We usually tend to think that it is the big things that should be discussed with parents, surgery, resuscitation, major procedures etc. But because they are far more optional, parent’s views and values (including their religious values) may come into play far more for the little things.

  • Dominic Wilkinson says:

    sorry, that last comment was mine – but was logged in as admin at the time
    cheers
    Dominic

  • John Scott says:

    Of course a doctor shouldn’t tell porkies. However I would suggest if patients, in this case parents, want to make autonomous decisions they also have some responsibility with regard to the process. They are responsible to make sure they have all the information they need to make a decision that satisfies them. This runs counter to the thinking in The Royal Liverpool Children’s Inquiry of 2001. This inquiry suggested that,
    “A practical test for the clinician in considering whether he has given full information is to question whether any significant detail not mentioned could have lead to a different decision by the next of kin. If so the test for fully informed consent will not have been met.”
    However many different things can lead to different decisions by different people. Doctors cannot foresee every detail that matters to every patient. Of course patients should understand the basics of any procedure. But with regard to some of details, if one of these details matters to an individual patient it is up to her to ask for this detail to be fully explained. The information given should of course be truthful. It seems to me that animal derived surfactants are one of such details and need not be mentioned by the doctor responsible for informing the parents unless she is asked for this type of information.

  • Dominic Wilkinson says:

    Thanks John,

    I tend to agree that if parents have particular concerns, or beliefs that would lead them to make different decisions from other families, that it is their responsibility to communicate them. On the other hand, it may be that doctors could and should anticipate based on other evidence or past decisions that something is likely to be relevant to them.
    In relation to surfactant, the quote from the Liverpool enquiry would not necessarily endorse a different standard of information provision. That is because provision of the extra detail (for example that surfactant is animal derived) *would not lead to a different decision*. In the most common setting, there is no alternative surfactant available, and parents would not be permitted to refuse surfactant. Therefore animal derived surfactant will be provided anyway.

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