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Title: Which newborn infants are too expensive to treat? Camosy

and rationing in intensive care.

Keywords: withdrawing treatment; resource allocation; infant,

newborn; medical ethics; neonatal intensive care

Word Count: 3684 words

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ABSTRACT

Are there some newborn infants whose short and long-term care

costs are so great, that treatment should not be provided, and

they should be allowed to die? Public discourse, and academic

debate about the ethics of newborn intensive care has often shied

away from this question. There has been enough ink spilt over

whether or when for the infant’s sake it might be better not to provide

life-saving treatment. The further question of not saving infants

because of inadequate resources has seemed too difficult, too

controversial, or perhaps too outrageous to even consider.

However, Roman Catholic ethicist Charles Camosy has recently

challenged this, arguing that costs should be a primary

consideration in decision-making in neonatal intensive care.

In the first part of this paper I will outline and critique

Camosy’s central argument, which he calls the “Social Quality of

Life model”. Although there are some conceptual problems with the

way the argument is presented, even those who do not share

Camosy’s Catholic background have good reason to accept his key

point, that resources should be considered in intensive care

treatment decisions for all patients. In the second part of the

paper I explore the ways in which we might identify which infants

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are too expensive to treat. I argue that both traditional personal

“quality of life” and Camosy’s “Social quality of life” should

factor into these decisions, and outline two practical proposals.

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SHOULD NEONATAL INTENSIVE CARE BE RATIONED?

In his book, “Too expensive to treat? Finitude tragedy and the

neonatal ICU”, Charles Camosy, argues that costs should be central

in decision-making in neonatal intensive care units (NICU). His

argument is all the more striking in that it comes from a

Christian pro-life perspective. Contrary to the claims of some

religious thinkers, Camosy argues that a Christian ethic mandates

attention to the intrinsically social nature of all humans, and

consequently to the social consequences of medical treatment.i

i For this paper I will follow Camosy in addressing resource

allocation questions for newborn infants. But is it unfair to

“pick on the NICU”? Camosy defends his focus on the basis of the

very high costs of inpatient and subsequent care for at least some

critically ill newborn infants.(188-193: here and subsequently

page numbers in parentheses refer to Camosy 2010) However, he

accepts that his arguments could and should potentially relate to

expensive life-sustaining treatments for patients of any age

group.(193) Others have argued that neonatal intensive care

overall is more cost-effective than adult intensive care. If that

is the case, it may be that there is a stronger case for rationing

adult intensive care than NICU care.

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Charles Camosy begins his book with a simple and stark

statement of facts. “1. We have virtually unlimited health care

needs. 2. We have limited health care resources”.(1) His

discussion focuses on the US health care system, and the

overwhelming injustice in its failure to provide even basic

healthcare needs for millions of Americans. However, Camosy also

refers to the situation in other developed countries and to the

global inequality in health care. He argues convincingly that the

question “should we ration” is the wrong one. We are already

rationing health care, and will always be rationing. The only

question is how we ration - whether we do so in a way that is

driven by the caprices of market and political priorities, or

whether there is a fairer alternative.(2-3)

This argument alone suggests that costs must be considered at

some level, for example, how many neonatal intensive care

nurseries are built, how many beds are funded, how many staff are

employed. Should funds be provided to NICUs or to other important

health care priorities such as antenatal care, childhood

vaccinations or support for those with disabilities? Camosy draws

on John Lantos and William Meadow’s work to point to the distorted

and distorting funding arrangements for NICUs in the United States

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and to argue that these should be reformed. However, Camosy also

argues that resource allocation should be considered in the very

practical bedside decisions about whether individual infants are

treated or allowed to die. He refers to this as the “Social

Quality of Life” (sQOL) model of decision-making.

What does Camosy mean by the sQOL model? The term is not one

that has wide currency in the ethical or medical literature.

Camosy states that “The “social quality of life” model centers on

the newborn specifically in her family and social context”.(7)

However, the term is perhaps not ideal. “Social quality of life”

is used in some medical literature to refer to patients’

satisfaction with the social elements of their lives. It has also

been used by economists to refer to social influences on or

indicators of wellbeing (for example employment rates, expenditure

on education, economic inequality). Camosy means neither of these.

In fact, he explicitly rejects consideration of the newborn’s

future life experience in treatment decisions(12) (I will refer to

this as Personal Quality of Life (pQOL)).ii Instead, Camosy is

arguing that the social consequences of treating an infant should

ii Though, as we will later see, Camosy appears to implicitly

accept some pQOL judgements.

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bear on whether or not they are treated.iii He contrasts two

versions of this idea:

Strong sQOL model: Broad social factors (for example

distribution of resources) should be a primary consideration in

the decision whether or not to provide treatment for a newborn

infant (8)

Weak sQOL model: Broad social factors should be a secondary

consideration in decisions whether or not to provide treatment for

a newborn infant, though they may rarely tip the balance against

providing treatment. (9)

Camosy argues in favour of the strong sQOL model of decision-

making for newborn infants, though he rejects any suggestion that

infants have reduced moral status (Figure 1). He does this on the

basis of two main arguments that have emerged from the Roman

Catholic tradition, but which Camosy claims are broadly accepted

outside Catholicism. The first of these is the long-standing

distinction between ordinary and extra-ordinary treatments, while

the second draws on Catholic social teaching, and a “relational

anthropology”.(9) The ordinary/extraordinary distinction has

considerable intuitive appeal, but it has also been the subject of

iii A better term for this might be the “Social Consequences model”,

nevertheless, I will stick with Camosy’s terminology.

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considerable debate and criticism. I will set that argument aside

here, except to note that those who do not share Camosy’s strong

sQOL model might accept that some treatments could be

extraordinary, but hold that it is only the burden for the patient

that makes them so, not the burden on society. I focus here on

Camosy’s more distinctive argument, on the intrinsically social

nature of human persons. Camosy claims that because of this nature

it is in the best interests of any patient, including newborn

infants, to consider the impact of their treatment on others.

The ‘social nature’ argument is set out by Camosy in several

different ways. He provides a theological argument, based on

humans being made in the image of a triune God: “Relationality is

an essential element of the divine nature…and an essential aspect

of our nature as well”.(110) But he is also keen to establish that

this central part of Catholic social teaching has a wider

relevance to non-Catholics. Camosy notes that humans, whether

newborns or adults, live within groups. We grow and are nurtured

by our family and those around us, and later interact with a wider

social network.(160) Camosy draws from this two different

conclusions. He claims that newborn infants have duties to other

humans. “Certain kinds of moral duties are not predicated on

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individualistic ideas about volitionality or consent. Rather they

are predicated on the nature of human beings as intrinsically

social”.(98) He also claims that acting in the “total best

interests” of a newborn requires us to consider the needs of

others.(120)

One worry about the first part of this argument is that it

sounds at first glance as if it may be committing the naturalistic

fallacy. We are social creatures therefore we have social duties.

Camosy does not set out explicitly the connection between human

nature and social duties, and it is possible that he could do so

while avoiding such concerns. But there might be other significant

disagreements about what is genuinely in our nature. For example,

it is arguably in our nature to be selfish and to seek treatments

that might prolong our life or especially those of our children,

even if they would come at considerable cost to others. It is also

in our nature, as Camosy notes elsewhere in the book, to respond

differently and preferentially to the needs of those who are

suffering in front of our eyes, compare with the needs of those

who are invisible and mere statistics.(132-3) Indeed, this is one

of the potential reasons why neonatal intensive care is funded

well, while other more basic treatments are neglected. But Camosy

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does not want to derive a moral duty from this particular element

of our nature.

What about Camosy’s claim about the best interests of the

infant? Camosy does not provide a definition, but for the purposes

of what follows I take ‘best interests’ to refer to what would

overall be best for the child. There are two separate ways in

which it might be overall best for a newborn to consider the

social consequences of providing treatment. These have parallels

to the ways in which we might consider the interests of the

infant’s parents. The impacts of treatment on his family or on

wider society may influence the child’s future life and wellbeing.

The treatment might, for example, be so expensive or burdensome

that it leads to the break-up of his family, or it may consume all

his allocated health insurance, leaving him with no support for

later health care. This is the narrow sense in which social costs

might be relevant, and would be relevant to what Camosy calls the

weak sQOL model.(107) Alternatively, it may be thought that even

if he is never aware of it the newborn has an interest in the

wellbeing of his family and of others in society, is benefited by

their lives going well, and harmed when their lives go badly. It

is this latter interest that forms the basis for Camosy’s strong

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sQOL model. But does it make sense to say that a newborn is

benefited by considering the health care needs of others in

society? It depends on what counts as a benefit for the child.

This clearly would make no sense to those who hold some theories

of wellbeing, for example hedonism, or some forms of preference-

satisfaction, since the newborn does not, and may not ever be

aware of these things, nor will he gain pleasure from them.

Consideration of the costs to others might be included in an

‘objective list’ account of wellbeing, though it has not

traditionally been included in such lists. But even on this basis

it is not clear if this claim is coherent.

The problem is that an assessment of whether a treatment would

benefit the child, and whether we can afford to provide it are two

different questions. We may have treatments that we can afford

that are of no benefit to the child, or treatments that would be

of benefit that we cannot afford. But Camosy’s ‘total best

interests’ collapses these distinctions. It makes it conceptually

difficult for us to claim that there is a need for more funding

for a particular treatment. We would want to claim that the

treatment is beneficial and therefore it should be funded. But on

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Camosy’s account this treatment is not of benefit overall (albeit

because we cannot afford it).

Camosy’s attempt to include the costs of treatment within a

“total best interests” assessment is understandable. It is

understandable because there is considerable ethical pressure for

physicians to focus on what would be best for individual patients.

It would be, in a sense, a great consolation for doctors to know

that they do not have to choose which patient to benefit. They can

always act in patients‘ best interests (even if some patients die

for lack of treatment). It is also understandable because

clinicians, too, sometimes slip between justification for limiting

treatment based on the best interests of the patient, and

justification based on limited resources. It is much easier to

convince families to allow their loved child or elderly relative

to die if the families are told that treatment can no longer help

the patient (even if that is not strictly true). And sometimes the

two will coincide, as where treatment is both beneficial and

affordable, or neither beneficial nor affordable. Nevertheless it

is, I would argue, a mistake to conflate benefit to individual

patients with benefits to others. It is important to keep the two

distinct for the sake of clear thinking and honest communication.

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It may also be that our response to disagreements will be

different depending on the reason why we are proposing to limit

treatment.

But even if the ‘social nature’ argument is unlikely to

convince all readers, there are nevertheless alternative, simple

and widely applicable arguments in favour of Camosy’s sQOL model.

Given that public healthcare is a limited resource, it is

intuitively plausible that we should seek to use that resource to

secure the greatest benefit for the greatest number of those in

society. A fair distribution of those resources ought to reflect

the needs of patients and the potential benefits of treatment, and

will necessarily incorporate an assessment of the costs. This is

accepted as one of the fundamental principles of medical

professionalism. Rationing at some level has long been argued to

be widespread, inevitable, justified, and, ultimately acceptable

to the general public. A full discussion of the arguments for and

against rationing is beyond the scope of this paper, but it is

difficult to avoid concluding that the costs of treatment should

be factored into decisions about whether to provide it. To

reiterate, the question is not whether we ration, it is how we

ration, and who we choose to deny treatment.

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WHICH NEWBORN INFANTS ARE TOO EXPENSIVE TO TREAT?

Although Camosy’s arguments and other arguments converge in

suggesting that the social consequences of treatment should be

factored into decisions, they do not necessarily distinguish

between strong and weak versions of the sQOL model. Should social

consequences be of primary importance in treatment decisions? Should

doctors be thinking first about the potential costs whenever they are

about to start resuscitating an infant, child or adult? Camosy

does not set out clearly what he means by primary importance, but

in a related context David Archard has distinguished between

different descriptions of the importance of the best interests of

the child, involving a spectrum from “the paramount”, through “a

paramount” or “the primary”, to “a primary” consideration.

According to Archard, “A consideration that is ‘primary’ is a

leading consideration, one that is first in rank among several.”

Using this definition we might still think that doctors should

start with an assessment of whether treatment would be in the

child’s best interests, but then consider whether social factors

outweigh that benefit. The strong sQOL model suggests that social

consequences could sometimes justify not providing treatment even

when it would clearly be beneficial to the child. Tragically, this

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is often the case even for fairly basic treatments in low-resource

countries. It is easy to decline intensive care admission when

there is no intensive care unit, or there are no vacant beds. In

well-resourced countries, though, the challenge comes in

determining when available, beneficial treatment may be withheld

or withdrawn on the grounds of cost.

When should newborns be declined intensive care, even if there

are beds available? Camosy provides some tentative suggestions. He

argues that it should be illegal to use resources to treat

imperiled newborns “that cannot possibly benefit from the

treatment”, listing as examples anencephaly, trisomy 18,

holoprosencephaly, large encephalocoeles, pulmonary vein atresia,

multicystic/dysplastic kidneys, congenital severe hydrocephalus

with absent or minimal brain growth.(176) He also proposes a form

of triage categorisation for newborns needing intensive care, with

some patients being given a “must not treat” classification on the

basis of their prognosis.(197) The basis for the triage assessment

would be on the basis of a formula such as that given in box 1.

Chance of Survival x Length of survival Short and long-term costs of treatment

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Box 1 Camosy’s sQOL formula (Camosy does not express it in this

mathematical way, but this appears to capture the view that he

describes)

Camosy’s suggestion of refusing to provide treatment for

newborns with so-called “lethal” or “terminal” malformations is

intuitively highly plausible, however he fails to acknowledge

several problems. First, such an attempt parallels the long-

standing attempt by clinicians to identify treatment that is

‘futile’ and may, therefore be withheld or withdrawn even if the

patient or their surrogates request it. However, attempts to

codify this in the form of futility statues have been largely

unsuccessful. Second, at least in paediatric intensive care units,

published studies from the US and UK suggest that futile treatment

constitutes only a very small proportion of ICU bed days,.

Similarly, only a very small proportion of patients in newborn

intensive care have the malformations that Camosy identifies, and

the average costs per patient are small. The vast majority of NICU

patients (and the bulk of the costs of newborn intensive care) are

either premature babies born between 26 and 34 weeks of gestation

whose outcomes are very good, or babies with correctable

congenital anomalies. This does not mean that the savings from

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avoiding inappropriate treatment are not worth pursuing - simply

that they are unlikely to yield large benefits for society. Third,

the designation of conditions as lethal or terminal is far less

clear cut than Camosy imagines. For one thing, 6 of the 16

conditions that Camosy lists (drawing on a paper by Steven

Leuthner), have severe brain abnormalities, and low survival rates

are heavily influenced by non-treatment decisions. Prolonged

survival has been described in all but one of the abnormalities

that Camosy lists. It is simply incorrect to state that a child

with trisomy 18 or holoprosencephaly “cannot possibly benefit”

from treatment. They are highly likely to die if they receive

palliative treatment. However, the reason that they are usually

treated this way is because of the severity of impairment that

they will experience if they survive. It may well be that the

limited benefit to the child is outweighed by the burdens of

treatment for the child, and for others. But central to this is an

assessment of the child’s personal quality of life.

Camosy’s equation for triage classification in intensive care

is essentially a version of the simple utilitarian principle of

maximising life-years saved. This principle has intuitive appeal,

and has been used in disaster triage and allocation of scarce

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antibiotics. It does, however, arguably neglect other important

relevant considerations.iv For example, Camosy explicitly excludes

consideration of pQOL. Is this plausible? He rejects the use of

Quality-adjusted-life years (QALY) in health care allocation

because of concerns about the subjectivity of assessment, problems

with quantifying life quality, incommensurability of different

benefits, and the narrow nature of QALY models.(185-187) He also

rejects models of decision include pQOL like that of H. Tristram

Engelhardt, whose treatment formula is otherwise very similar to

Camosy’s own.(Box 2) Camosy’s main reason for rejecting these

models is that they potentially imply a reduced moral status for a

subgroup of newborns with poor quality of life.

Box

2.

Engelhardt’s sQOL model

But one problem with Camosy’s sQOL model is that it appears to

yield some counterintuitive conclusions. Imagine that we were

contemplating long-term mechanical ventilation support for two

children with identical chances of survival and length of life.

One of these children has anencephaly, while the other has a

iv For a detailed description of alternative allocation principles

and their merits see Persad et al.

Chance of Treatment Success x Probable Quality of Life x Length of Life

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severe neuromuscular disorder but normal cognition. Camosy’s model

appears to imply that we have no reason to prefer to give this

treatment to one child rather than the other. To be fair to

Camosy, he appears to be sympathetic to the idea that life-

sustaining treatment would be ‘extraordinary’ and hence, optional,

for a patient in a persistent vegetative state,(71-2) and perhaps

he would make a similar judgment about anencephaly. But the reason

for treatment being extraordinary for this patient must relate

ultimately to some qualitative assessment of the nature of their

future existence. It must be related to the patient’s pQOL.

Second, it is not necessarily the case that taking into account

a patient’s future level of impairment (particularly cognitive

impairment) necessarily imputes that they have reduced moral

status. There are a number of ways that severe cognitive

impairment might affect the future interests of the child, and

hence influence the balance of benefits and burdens of treatment.

Finally, a number of Camosy’s concerns about incorporating pQOL

into treatment decisions (difficulties in predicting QOL,

uncertainties and subjectivities in measurement, problems in

trading off quality against length of life, and a slippery slope

leading to euthanasia), are also objections that have been or

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could be raised to the sQOL model, and in particular to the

incorporation of long-term health care costs into decisions.

Camosy responds to each of these objections against the sQOL

model, but his own responses to these arguments provide a parallel

defense for including pQOL in decisions.

How would the sQOL model be applied in practice? There are

strong reasons for thinking that where resource allocation is

impacting upon decisions that the process for doing so is

transparent, and accountable. Here are two suggestions. The first

is the idea of time-limited trials of intensive care treatment.

Despite the arguments of ethicists that withholding and

withdrawing treatment are equivalent, medical professionals

continue to mark a difference between decisions not to start, and

decisions to withdraw treatment. This means that in practice

treatment is sometimes withheld because of resource limitations,

but rarely (at least explicitly) withdrawn for the same resource

limitations. One way to avoid this phenomenon, and perhaps to

provide a structure for resource-based treatment withdrawal would

be to offer some patients (those with a high risk of death despite

intensive care) a trial of treatment for a defined time period.

For example, newborns (and their families) could be offered a 48

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or 72-hour period of intensive care with an expectation that at

the end of that time treatment would be withdrawn unless the

patient had shown a definite response to treatment. This policy

would enable more prognostic information to be collected prior to

treatment limitation. It would allow information to be collected

about the potential long-term costs of care. But what sort of

prognosis at the end of this period would justify cessation of

treatment?

The second suggestion would be to develop an explicit

prognostic threshold for treatment withdrawal based on existing

consensus. So, for example, international guidelines for

resuscitation of extremely preterm infants suggest that intensive

care should usually not be offered for infants born at 22 weeks’

gestation. Outcome studies of infants born at this gestation

indicate that if they are provided with intensive care these

infants have approximately a 10% chance of survival without

profound impairment. There are a number of serious criticisms of

the practice of basing resuscitation decisions solely on

gestational age, but an alternative would be to use the concept

of “gestational age equivalent prognosis”. On this basis, it would

be reasonable to withhold or withdraw intensive care from infants

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with a chance of survival without profound impairment that is

equivalent to an average 22 week gestation infant ie <= 10%. For

example, this would include some severe forms of congenital

diaphragmatic hernia, some extremely small infants, and perhaps

some of the conditions in Camosy’s ‘terminal’ list.

CONCLUSIONS

Charles Camosy’s first book is a thought-provoking and well-

written attempt to grapple seriously with the challenge of

resource allocation in neonatal intensive care. He argues

persuasively that the social consequences of care should be

factored into treatment decisions for newborn infants, and indeed

for all patients. While Camosy’s argument draws heavily on

Catholic Social Teaching and has some problems, its basic

foundations are likely to be plausible to those of other religions

and no religion. Camosy is right to assert that “there are no interests

of our own that should not always and directly be evaluated in

light of the claims of others”.(120) Some newborn infants are

indeed too expensive to treat. Yet translation of this insight

into practical decision-making remains a huge challenge, both for

policy-makers and for clinicians.

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Figure 1. Should the costs of treatment be included in

decisions about life-sustaining treatment for a newborn. A

comparison of Camosy’s view with alternative models including a

strict best interests model (only the child’s interests should be

included in decisions eg Ramsay ), the weak sQOL model (Costs may

be included where they impact on the interests of the child) eg

Shaw ), a and views that are based on reduced moral status (eg

Kuhse and Singer ).

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