10.1 Introduction
While, in Europe and beyond,
decisions about children who lack competence to contribute to their treatment
decisions are based upon their best interests, both the European Court of Human
Rights and bioethical theorists consider that there must be substantial involvement
of parents in these decisions. In the United Kingdom (UK), legal and clinical
guidelines say that critically ill children’s best interests must be agreed
by their parents and doctors, or the courts, in a process of shared decision-making.
There is widespread acceptance that there should be limitations on parental
authority in shared decisions, yet parental authority is ill-defined, and without
some agreement on the source of parental authority it is difficult to limit it
either cogently or consistently.
This chapter presents results
from an empirical ethics investigation into shared decision-making in the paediatric
intensive care unit, a study that focused on critical decisions in which an infant
child’s treatment or non-treatment would be decided. While many of the
parents involved expressed their views about their child’s best interests as
an intuition, this intuition was generally based on their knowledge, emotional
intimacy and close proximity to their child. However, in some circumstances such
intuition appeared to have no basis in fact or experience, and this was notably the
case for the intuitions parents said they would rely upon to make critical decisions
about treatment at the end of life. A combination of knowledge, emotional
connection, intimacy and intuition also saw many parents actively contribute to
decision-making and frequently request treatments for their child. I use intuition
here to characterise an instinctive sense that something is the case – what
is sometimes termed a ‘gut instinct’. 1 Normative accounts of intuition,
which I will discuss in this chapter, are divided about the basis and the value of
intuitions, but not the definition; as McMahan puts it, moral intuition is a
‘spontaneous moral judgement’ (2000: 93).
The study results allow us to
glimpse a rich picture of the sources of parental authority, and thus offer the
cogent reasons we need in order to place consistent limits on the scope of parental
authority in shared decisions. I contend that parental authority can have a basis in
intuition, which should be based upon tangible, intimate knowledge of their child,
their child’s therapy and their child’s medical history; however I
suggest that, without this basis, parental intuition alone should not be
authoritative. I accept that requests for treatment may communicate such knowledge
and thus be useful for raising the quality of care. However, I observe that such
requests may also have a deleterious effect on other children within the clinical
setting because of the physical limitations of resources and the varying abilities
of parents as advocates. For these reasons, while I argue there are strong reasons
to involve in decisions about their children parents who are (in ways I explore)
close to their offspring, I suggest there are defensible, definable and consistent
limits to the exercise of parental authority in shared decisions.
10.2 Parental authority in practice
Parents are widely considered to share decision-making
authority with clinicians (Sullivan,
Monagle and Gillam, 2014), all the more so in decisions about infants who
are unable to express their own wishes. In the UK, clinical guidelines, including
those from the General Medical Council
(2010), the Nuffield
Council on Bioethics (2007) and the Royal College of Paediatrics and Child Health
(2004), suggest a parent-clinician partnership to serve the
child’s best interests. This clinical partnership is also recognised in
common law in the leading case of Re J (a minor) (wardship: medical
treatment) [1991] Fam 33, in which Lord Donaldson MR (at 41)
characterised a parent’s ability to refuse or consent to their
child’s treatment as part of a system of checks and balances on doctors or
the courts.
There is, however, widespread agreement that there should be
some limits to parental authority. For instance, parents have no authority to demand
treatment under English law (Munby,
2013). Yet even this relatively clear legal boundary to parental
authority relies on the best interests principle, which has been widely argued to be
vague and indefinable (Bellieni and
Buonocore, 2009; Baines,
2010). Clinical guidelines limit clinicians’ authority to
objective medical knowledge: for instance, the General Medical Council (2010: 47) says:
‘You must not rely on your personal values when making best interests
decisions [or] make judgements based on poorly informed or unfounded assumptions
about the impact of a disability on a child’. However, guidelines suggest no
similar boundaries to parental authority. Bioethicists like Schoeman have advocated
for increased parental authority while limiting that authority by reference to
somewhat platitudinous criteria, such as cases in which the child will come to
‘extreme, irremediable and obvious harm’ (Schoeman, 1985: 52). Others, such as Bailey (2001), have suggested that
families’ input ought to be based on subjective values because they act as a
proxy for the subjective preferences of their relative. However, even if accepted
without argument, such a criterion provides no scope for differentiating acceptable
from unacceptable values. Moreover, by suggesting that, in the case of newborn
babies, parents ‘are often best placed to know what is in the interests of
their child because of their closeness to him or her and the special bond that they
enjoy’, guidelines from the Nuffield Council on Bioethics (2007: 23) arguably suggest that
parents’ knowledge of their infant is intrinsic and intuitive –
exceptionally difficult criteria on which to offer limits.
What all of the preceding criteria share is a failure to
articulate clearly consistent boundaries to parental authority which can be applied
in practice. The results from empirical ethics research into this issue, which I now
present, suggest that to conceive parental knowledge as intrinsic or innately
subjective fails to capture the rich and informative nature of this knowledge. While
parents do claim intuitive knowledge of their infant’s interests in critical
medical situations, this is often based upon tangible factors. These factors, while
not being entirely determinative, offer a platform from which to more clearly
reflect on both the scope of parental authority and the limits we should place on
our expectations of it in shared decision-making.
10.3 The BIPIC study
While European empirical studies have contributed to knowledge
of a wide range of issues salient to the current topic, including the degree to
which parental authority is determinative of children’s treatment (Hagen et al., 2012) and the
effect on parental wellbeing of sharing decisions (Caeymaex et al., 2013), the content of parental
contributions to shared decisions is rarely examined (a rare example is a single
case study from de Vos et al., 2015). Judging Best Interests in Paediatric Intensive
Care (BIPIC) is a qualitative empirical ethics study funded by a Wellcome Trust
Fellowship in Society and Ethics (grant number WT097725FR), which investigates the
values and experiences of decision-makers in the paediatric intensive care unit, and
thus examines parental contributions to decisions in detail.
10.3.1 Methodology
The study used a qualitative empirical ethics methodology
2
consisting of an empirical component followed by a process of reflective
equilibrium, in which the empirical data was reconciled with ethical theory. The
method of reflective equilibrium broadly followed that postulated by Daniels (1979). The empirical
research drew participants from the four decision-making groups identified in
guidelines from the Nuffield
Council on Bioethics (2007), namely doctors, nurses, members of
clinical ethics committees and parents. Only parent interviews are considered in
this chapter, although their observations are corroborated by other groups.
Parents were recruited through three paediatric intensive care units (PICU) and
took part in in-depth face-to-face interviews about their experiences. Not all
parents had direct experience of making a critical, life-or-death decision,
although all had vivid memories of their child’s critical illness and
their own experiences relating to this. Participants continued to be recruited
and interviews conducted until no new themes emerged.
10.3.2 Recruitment method
The study was reviewed and approved by a local research
ethics committee. To ensure the researcher had no access to confidential data, a
senior clinician in each intensive care unit identified potential parent
participants from clinical records. Parents were eligible to take part if their
child had been a critically ill inpatient between one and two years prior to
recruitment. Their child had to conform to the following criteria at the time of
their admission: Paediatric Intensive Care Society critical illness level two or
above (i.e. one or more organs supported); less than four years old or otherwise
unable to contribute to decisions about their care; and a PICU stay of more than
four days. Eligible parents were contacted by a letter from the senior
clinician, and responded directly to the researcher if they were interested in
participating. Parents were purposively recruited to reflect the range of
outcomes expected nationally from a PICU admission, thus about 10 per cent had
experienced a bereavement and another 30 per cent had children with ongoing
morbidity.
10.3.3 Recruitment results
A total of 131 parents were approached by letter, of whom
17 responded and 14 subsequently took part in an interview ().
Parents were interviewed alone or in couples at a private
location of their choosing, depending on their preference. Two parents brought
friends or relatives to the interview for support, rather than a spouse. Parents
provided written consent and were assigned code numbers to preserve their
anonymity. Details of participant characteristics are given in .
Characteristics of BIPIC parent participants.
10.3.4 Data collection
Interviews were semi-structured and followed a topic guide
that was formulated from a literature review at the beginning of the project.
Questions were modified as the study progressed in order to iteratively explore
themes that emerged in prior interviews. Open questions encouraged participants
to tell their story, and follow-up questions explored the experiences, values
and beliefs that underlay the participant’s interpretations of
children’s best interests. Interviews lasted between 73 and 180 minutes.
All participants agreed to have their interviews audio recorded.
10.3.5 Analysis
Interview recordings were transcribed by a professional
transcriber. The transcripts were anonymised to remove identifying names and
locations before being analysed, using thematic analysis (Braun and Clarke, 2006). This method was
selected because it was iterative and did not require parents to participate in
repeated interviews about a sensitive and potentially distressing topic. The
analysis involved coding the interview data to identify key words, phrases and
topics that participants used to express their experiences and beliefs. By
analysing codes across all parent interviews, key themes emerged that offered
insights into the parental role in decision-making.
10.4 Key findings
Parent participants (hereafter referred to simply as
‘parents’) felt they had a special understanding of their
child’s physiological and behavioural norms, as well as substantial clinical
knowledge and expertise in their child’s clinical history and clinical
condition. Such understanding often took the form of an intuitive sense of the
child’s wellbeing, which apparently rested on this expertise and proximity.
Where critical end-of-life decisions needed to be taken, most parents also thought
that they would intuitively know what the right thing to do would be.
Parents’ knowledge and intuition also provided a platform from which to
request treatments and advocate for their child; these requests included changing
treatments, ensuring interventions were undertaken as planned and otherwise
attempting to improve the quality of their child’s care.
10.4.1 Parents’ knowledge of their child
Parents recalled intuitive feelings of unease at the onset
of their child’s acute illness or if their child’s clinical
condition deteriorated. These feelings were driven by their knowledge of their
child’s normal appearance and behaviours, which resulted from a constant
close proximity to their child. In a typical example, P41 describes becoming
aware of her baby’s sudden deterioration following an initial discharge
from PICU:
P41 (MOTHER): And I had not been apart from my
baby ever, and I knew him, and I knew every colour on his face and every
look that he gave me and every movement that he made, I knew it. So the
minute that something changed, I knew it.
Parents also felt that their close proximity to their
child throughout the hospital admission gave them a firm narrative of their
child’s medical history, and that this was sometimes more accurate than
that of their doctors and nurses. For instance, one parent, by being present at
shift changes, was both able to learn the clinical details and to correct
mistakes or omissions in the clinical history. Others were familiar with earlier
treatments or procedures and queried the accuracy of documentation:
P40 (MOTHER): You’ve been in hospital with
your child for several months, and you’ve seen like day in, day
– 24 hours a day, you know what they’ve done. Like
sometimes things might get written down, abbreviated to like what
actually happened and you’ll be like, ‘Hang on a minute,
that’s not exactly what happened. This is what
happened.’
This ability to keep an accurate narrative history was
noted particularly where there were gaps in the medical narrative, such as when
care was shared between more than one institution or where, as in the case of
P59, the child had a long-term condition that was rarely seen by medical
trainees:
P59 (FATHER): … not so much the regular
nurses, but doctors that we don’t see before, they’re
always asking us, because at the end of the day we know more about her
and her diagnosis than most of the doctors up there. It’s only
really the specialist for her that knows more than us.
Parents also brought a very particular perceptual
knowledge of their child as an individual. While this sentiment was more often
implied than expressed, P45, whose child had a relatively common congenital
disability, was concerned this depersonalised her child to some clinicians:
P45 (MOTHER): … because she’s got
[congenital condition] um she’s treated in the same sort of way
[as other infants with that condition]. So like well [certain symptoms]
can be explained away because she’s got [congenital condition],
and you don’t want that: you want them still to assess her as
her and make sure that they don’t make excuses or let things
happen just because of that.
Parents were therefore able to bring a wide range of
knowledge and connection with their child to discussions with healthcare
professionals. Moreover, parents also related the ways they used this knowledge
to advocate for particular directions to be taken in their child’s
treatment.
10.4.2 Parents’ requests for treatment
Parents’ knowledge of their child’s
medical norms and history meant they were able to interact with healthcare
professionals to broaden and improve the medical narrative. Moreover, parents
frequently intervened in their child’s care and made requests for
treatment. Examples included requesting extra laboratory tests on blood samples
to match tests taken on prior occasions, challenging the method of a proposed
surgery or, in this example, requesting that staff combine x-rays in order to
reduce x-ray exposure:
P65 (MOTHER): He was having some x-rays and they
wanted to do two x-rays. I did question them and said, ‘Why do
you need to do two? Can you not just do one?’ In the end, they
just did one. But a bigger one. Because they wanted to take one of one
area and one of another area. I said, ‘Surely, he’s only
little, you can fit it into one,’ and they did. I didn’t
want him to have more than he really needed.
Very often, these interjections were to remind staff of an
intervention the parent had expected them to initiate, such as commencing their
child’s feed or complying with infection control measures. An example of
this is P55’s request that a central venous catheter be removed in line
with local infection control policy, which she had discovered on the
hospital’s public website:
P55 (MOTHER): A femoral line, he still had that
in, and they came to take that out. ’Cos I complained, I said,
‘He’s not meant to have that in there is he, after a
certain amount of time?’ And they said, ‘Oh OK,
we’ll take that out,’ you know, ’cos I knew
you’re not meant to have that in [from looking at the
internet].
This data gives insights into tangible contributions
parents made to the care of their child, and moreover shows these
parents’ requests for treatment could be based on competent assessments
of technical criteria. However, there was one further strong driver of
decision-making: intuition.
10.4.3 Intuitive knowledge
Some parents suggested their knowledge of what was best
for their child was intuitive, and found it hard to believe that they would be
able to act in a way that was contrary to their intuition. P61 talked of a
‘gut feeling’ that had played a role in her recognition that her
child was becoming seriously ill, and because of this she felt parents would
instinctively know when treatment was no longer in their child’s best
interests:
P61 (MOTHER): I had that gut feeling, I knew [my
child] wasn’t right. It wasn’t just a bug. It
wasn’t just give him [paracetamol] and [ibuprofen] and lots of
fluid, and see how he was. That […] morning was – he was
lying on my bed – you knew there was something wrong. I suppose,
maybe, as a parent, when you get to that point, again, you know that,
yes, this is the end of the line. There’s nothing more that can
be done. No matter how hard it is, maybe you do that, that does kick
in.
This projection of intuitive knowledge of their child from
a situation they had experienced to an instance they had not was repeated by
other parents; for example, P59, the mother of a life-limited child, said:
P59 (MOTHER): I just think parents know the
child’s best interests. I don’t think it even needs to
take a doctor to say that. What kind of parent would put their child
through something they didn’t feel that they had to be put? No
parent would. I think you just know.
Thus, while intuition was often underwritten by
experiential knowledge of the child, this foundation caused parents to give
credence to intuitions about more suppositional situations.
10.5 Discussion
Emergent themes from parent interviews suggest that
parents’ day-to-day intimacy with their child furnishes them with a
practical knowledge of their child’s wellbeing, which can be employed in a
variety of clinical and non-clinical situations. This knowledge can be applied in
clinical scenarios and at times can compete with clinicians’ specialist
knowledge. Practical knowledge gives parents a sense of intuition about their
child’s wellbeing, and this intuition can extend beyond familiar situations,
for instance engendering the conviction that they will know the best interests of
their child in a critical decision about treatment or non-treatment. Knowledge of
their child as an individual may also provide a heightened degree of emotional
sympathy, and, further, drive parents to request treatments that they consider to be
in the child’s interests. The interviews thus offer significant insights
into the complex role of parents in the shared decision-making process, and allow
some conclusions to be drawn. These conclusions focus particularly upon infants
whose wishes and values, should they exist, we have no way of knowing.
The way parental knowledge is gathered suggests that a
parent’s intimacy with their child is profoundly important to their ability
to contribute to a shared decision, an idea which has formed the mainstay of a
number of influential theories of family authority. In the remainder of this chapter
I shall use this information to set out some limits to parental authority. I will
argue that it is parents’ intimacy with their child which gives them
familiarity with their child’s medical course and this offers a credible
basis for their role in the decision-making process. Such a basis, however, also
implies a limitation where intimacy and familiarity are absent. While parents may
form strong intuitions about their child’s wellbeing, which, when driven by
experience, are likely to be well-founded, intuitions that are not driven by
experience (such as, often, decisions about whether treatment or non-treatment is in
the child’s interests) are of less practical value and must be viewed more
cautiously in the decision-making process. While this implies a restriction,
parental involvement in critical decisions may also be important because of the
focus parents bring upon the child as an individual. Where a child suffers a common
condition that may lead clinicians to depersonalise the child, parents’
emotional sympathy may bring the focus back on to the individual and combat this
depersonalisation. Finally, parents are strong advocates for their child and often
request treatments. This phenomenon is particularly interesting, because it both
highlights a reason for involving parents in shared decisions and a reason for
limiting their authority, perhaps highlighting the difference between a
‘request’ and a ‘demand’. This is because even valid
requests for treatment may be a mechanism for raising the quality of care for their
child, while conversely reducing equitability for those with less powerful
advocates. Let us consider these conclusions in more detail.
10.5.1 Intimacy and knowledge
A parent’s intimacy with, and proximity to, their
child throughout their lives may lead to a detailed knowledge of their
child’s development and clinical history. Close proximity may also mean
that parents develop a grasp of clinical facts about their child that is
comparable to (or potentially greater than) that of attending clinicians.
Constant presence at the child’s bedside provides parents with a
narrative that can be more coherent than a clinician who sees the child
episodically due to the provision of their speciality, the fragmented nature of
shift systems and so on. These observations suggest that intimacy is a key
component in a parent’s ability to contribute to decisions.
The importance of intimacy in parental decisions resonates
with Hegel’s theory that families are a unique and intimate community
characterised by love (Hegel, 1851/1976: 110). Hegel argued that parents have a
duty to imbue in their children a sense of individuality and self-worth, since
this sense of individuality will lay the foundation for moral autonomy (Blustein, 1982:
90–95). In a similar position, Ross (1998: 20–38) and others (Schoeman, 1985; Downie and Randall, 1997;
Erickson, 2010) have
argued that parental authority in decision-making is drawn from the intimate
nature of families. This intimacy distinguishes them from other collections of
individuals since they know each other best, share each other’s goals,
their wellbeing is intertwined and the boundary between the interests of their
members is blurred. For Ross, these interconnected interests mean that families
should make unfettered decisions about their members, and controversial
decisions such as those based on the quality of a child’s life should
remain within the family’s ambit. Other thinkers argue that parental
authority in medical decisions rests upon parents’ exposure to grief
(McHaffie,
2001:393–415) or the burden of care they will carry if their
child has a disability (Harrison,
2008). While they may have merit, because these arguments rest on
reducing burdens for the parents rather than the child, they are inherently
controversial.
Other theorists are wary of involving parents in
decisions. For instance, Dare
(2009) contends that parental perceptions of best interests may be
mistaken, and that mere possession of a beneficent motivation does not single
parents out from doctors or other well-motivated carers; indeed, as Archard (2004:
137–149) observes, it is dangerous to assume parental beneficence. Dare
also suggests that parental knowledge may be plausible in some circumstances,
but that the family has no intrinsic knowledge of the needs or motivations of an
infant, nor does the burden of care which falls upon families reasonably entitle
them to disregard medical facts and likely prognoses.
Responses from BIPIC give us a lens through which to
consider these theoretical contributions. It seems that Ross is correct to
identify the importance of intimacy to parental decision-making, however, this
is not because parents share the child’s interests, but because intimacy
is a source of knowledge about (and, as I will consider later, emotional
connection with) children’s best interests. The value of this claim
rests on important presumptions. The first is that the parent is actually an
intimate with their child; clearly a parent who has had little contact with
their child (such as an absent father) will have no intimate knowledge.
Secondly, the parent must be competent to both remember and report the clinical
narrative. This will often be the case but, as parents have a range of
abilities, there will be instances where parents will not be able to meet the
intellectual or emotional demands that this involves. However, assuming these
caveats are met, intimacy, and especially intimate knowledge, is a credible
criterion on which to found parental authority in shared decision-making.
10.5.2 Intuition
In BIPIC, intimacy also gave parents a strong sense of
intuition about their child’s best interests, and the contributions to
shared decisions that parents reported relied strongly upon their intuitions. In
many cases these intuitions were derived from their intimacy with their
children, and the knowledge that this gave rise to. Thus parents were used to
the way their child looked and behaved when they were well, and this drove their
intuitions that their child was becoming sick. Crediting this type of
‘gut feeling’ with authority seems reasonable, since it is based
on the knowledge that will be gained from close association. But parental
intuitions were not limited to areas about which they had intimate knowledge.
Intuitions about whether treatment or non-treatment was in the best interests of
their infant were not based upon parents’ past knowledge of their child;
and infants could not have communicated their wishes about the length and
intensity of efforts to continue their lives, even if they had had such
thoughts.
In these circumstances it is helpful to consider how
intuitions have been perceived in moral philosophy. In metaethics, the study of
the nature of right and wrong, intuition has been considered at length. G.E. Moore (1903) regarded
intuition as the only way of directly appreciating what is
fundamentally morally right (in other words, we could not find secondary reasons
for moral approval without also possessing an intuition); a century later, Audi (1998) wrote that
intuition was epistemically equal to inference in detecting fundamental moral
principles. Yet, in the realm of clinical ethics, since we are uncertain about
what is fundamentally morally right, moral intuitions are given less status than
in metaethics, being seen instead as playing a part in moral behaviour, without
alone being regarded as sufficient to make moral decisions. Such a view is
espoused by McMahan (2000),
who does not disregard intuitions (since he believes they may harbour deeply
important beliefs that are essential to humanity), yet he rejects the idea that
intuitions alone can provide moral answers. McMahan instead argues that moral
intuitions are important because they offer us somewhere to start our moral
inquiries. Our intuitions let us take a guess at the correct answer, from which
we can try to reason using the knowledge, observations and arguments at our
disposal. I therefore contend that parental intuitions about critical treatment
decisions may lead to the discovery of important, hitherto unarticulated,
reasons that may influence the final decision. Such intuitions should prompt
further inquiry. Yet these intuitions cannot form the sole basis on which to
continue or discontinue treatment. Knowledge, rather than intuition, must be the
bedrock of parental authority.
Intuition does, however, have a further role to play. As I
noted above, parents are not just a source of knowledge about their infant, but
also a source of intuitive emotional connection. A parent who appreciates their
child as an individual is expressing a fundamental tenet of parenthood. While
this may have no bearing on the validity of their opinions, it may nevertheless
be an important reason for involving families in decision-making. In the
emotivist ethical framework of David Hume (1998/1751), emotional sympathies, rather than
rationality and argumentation, are the source of moral feeling.
Hume argued that, while rationality can provide us with moral answers, it is
emotional sympathy that gives us the moral questions – for example, it
is because we emotionally value human life that bioethics debates how to promote
this value. 3 In
practice this means a parent’s intimate emotional connection to their
infant may make them emotional catalysts who can ensure that
‘rational’ clinicians focus on what is valuable about the
infant. For instance, parents may draw attention to the value of their child
when clinicians have submerged that concern in a multitude of others, or have
written off a child as a ‘futile’ case. Thus parents may offer
an antidote to prejudice, emotional fatigue or overwork amongst staff. Because
this emotional sympathy does not need to be informed, while a powerful reason
for considering parents’ views about the child’s treatment, it
should not represent grounds for parental authority on its own.
10.5.3 Requests for treatment
Parental intimacy, knowledge, intuition and emotional
connection come together when parents request treatments in the belief that they
will improve the quality of their child’s care. Parents may fight for
what they perceive as the interests of their child with stamina that exceeds any
other party. A parent, as a child’s advocate, can literally demand the
attention of doctors and nurses, and such behaviour may advance their
child’s care in a way that will be effective in a large, busy hospital.
For instance, a clinician may be encouraged to give extra pain relief, to
expedite an important test result or to seek a second opinion, where these steps
may otherwise not be undertaken. This is an important consideration, for if we
wish to do what is best for children, a strong advocate is an important asset.
Thus, while English law tells us parental demands are not
determinative, some, perhaps many, parent requests for
treatment actively improve the quality of their child’s care, an
undeniably important role.
The benefits of these requests must be tempered with a
recognition that advocacy is a two-edged sword. Parents may also request
treatments that work against the benefit of the child and are
at best a distraction, and at worst impede clinicians from doing their best for
the child. Even if we assume such instances are rare and the usual outcome of a
treatment request is to do good to the child concerned, parental inclination is
to maximise their own child’s opportunity, which may clash with another
important clinical motive, that of treating patients equitably. This
equitability is based on inherent limitations of resources, such as the finite
time clinicians have to spend at the patient’s bedside. Parents who
demand a larger share of these resources for their child deprive others whose
parents are quieter or less effective at making their case, not to mention those
children who have no parent to advocate for them. Although this phenomenon has
not been studied in a hospital setting, a recent review offers compelling
evidence that articulate, middle-class public service users are adept at
vocalising and advancing their needs (Matthews and Hastings, 2013). 4 This underlines
international evidence from primary care settings indicating that patients from
wealthier, more articulate social groups receive longer consultations (Deveugele et al., 2002; Furler et al., 2002; Mercer and Watt, 2007).
Although not directly analogous to the sort of microallocation that takes place
between patients at the ward level, there are clear parallels.
There is thus a mixed picture of the effects of parental
requests for treatment which adds more nuance to the legal position, and helps
us tease out the difference between a demand and a
request for treatment. Some additional perspective can be
gained by considering phenomena related to the family more generally. Rawls (1971/1999) argued
that, since families vary in wealth and ability and are motivated to use what
resources they possess to benefit their children, they are basic drivers against
social equality. Such observations go back at least as far as Plato’s
Republic and have led to utopian experiments with
collectivised child-rearing in various modern societies, such as Maoist China,
Israel and Soviet Russia (Archard,
2004: 213–215). Because of this patchy history, Blustein (1982:
212–214 and passim) concludes that we must respond to Rawls’
critique, yet we have no convincing model that improves upon the family itself
as a nurturing environment for children. Instead, if we wish to benefit children
at large, individual families must be restrained in their ability to advantage
their members. These observations are important because they clarify the basic
conflict between a parental desire to benefit their child and the
clinician’s desire to offer care fairly and equitably. Parental requests
for treatment as a means of achieving a good quality of care must therefore be
divided from a presumptive right of families to benefit their child at
disproportionate cost to others, and the latter, which we could label treatment
demands, should be beyond the limits of family
authority.
10.6 Conclusion
Throughout Europe, decisions about children, and in particular
children who lack the capacity to express their wishes, are made in their best
interests. These are broadly conceived as arising from a shared decision between
doctors and parents, but, while clinical roles in a shared decision are clearly
defined, the scope of parental authority in shared decision-making is ill-defined.
This is equally true of bioethical accounts and, in the UK at least, clinical
guidelines and the law. Clinical guidance in some cases appears to consider parental
input to be based on intrinsic knowledge of the child’s best interests,
while bioethical accounts lack detailed or consistent criteria for placing
limitations on parental authority. Even the lack of authority to demand treatment
within the law lacks clarity since it relies on the vagaries of the best interest
test.
Interviews with parents about their own contributions to
shared decisions reveal contributions in several related areas. Parents’
intimacy with their child may make them sensitive to their child’s health
and behavioural norms. Their close proximity to their child throughout their
clinical stay may give them access to an unbroken clinical narrative, and their
emotional intimacy may lead them to communicate the unique value of their child to
others. This intimacy may be felt as an intuition, although parents may also have
strong intuitions in areas where they have no underlying experience. Proximity,
intimacy and intuition may also make parents powerful advocates for their
child’s cause, requesting treatments to improve the quality of their
child’s care and making sure their interests are heard by clinicians amongst
the demands of others.
Such contributions provide powerful reasons to include parents
in shared decisions, but they also give us criteria to demarcate some consistent
limits to parental authority: Parents must have intimate contact with their child
and the capacity to use this knowledge. Parental intuitions that are grounded in
intimacy and knowledge appear more authoritative than those ungrounded intuitions
that are more suppositional. We must be wary of giving both types of intuition the
same status, and when parents are in new and unfamiliar situations their intuitions
may represent the beginning rather than the end of a moral inquiry. Parental
requests for treatment are in many cases reasonable and likely to benefit their
child, yet the authority of these requests must be bound by reference to the needs
of others. Articulate parents must not be afforded benefits for their children to
the detriment of others with less effective advocates.
While offering robust theoretical criteria, the scope of
parental authority offered here is intended to help guide consistency and
transparency in practical cases. While shared decision-making between doctors and
parents represents a significant area of consensus, we risk inconsistency if we
share decisions without inquiring into why parental views may be authoritative. By
analysing the contributions that parents make to shared decisions in practice, we
can bring clarity to an area where authority is too often assumed to be
self-evident.