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END OF LIFE DECISIONS FOR NEWBORNS
A South African Legal Perspective
Melanie Fourie 1
1 Introduction
End-of-life decisions for severely disabled newborns are by their very nature
controversial. Not only do these decisions raise ethical problems, but they also raise
legal issues. While this is true in all jurisdictions, South Africa is a developing country
that has its own, distinctive, dilemmas. Take, for example, the HIV/AIDS pandemic
that places ruthless demands on, as is, overworked medical personnel and the
already limited resources.2
It is estimated that by the end of 2005 between 5.5 and 6.1 million South Africans
were living with HIV3 and almost 1,000 people were dying of AIDS related illnesses
daily.4 HIV/AIDS has not only affected the adult population in South Africa. It is
estimated that by the end of 2005 there were around 240,000 children living with HIV
in South Africa.5 Of the estimated 50,000 children requiring anti-retroviral treatment
at the beginning of 2006 only an estimated 10,000 were receiving such treatment.6
The demands placed on the already limited health care resources by HIV/AIDS are
immeasurable.
Add to this lack of access to pre-natal and post-natal medical care in rural areas, the
South African reality of abject poverty, illiteracy and cultural differences and it is
obvious that the dilemmas will increase exponentially.
In this contribution attention will be given to five aspects which have a particular
impact on end-of-life decisions for newborns in the South African context.
1. The Constitution,7 and, in particular, the interpretation placed on those
rights that play an important role in end-of-life decisions for newborns,
namely the right to life8 and the right to human dignity; 9
2. the right to freedom of religion, belief and opinion10 and the best interests
of the child principle;
3. the impact of the HIV status of the newborn in end-of-life decisions;
the impact of lack of resources on end-of-life decisions and, in particular,
the interpretation placed upon the right to have access to health care
services,11 and the right not to be refused emergency medical treatment,12
and
5. end-of-life decisions and the law.
The best interests of the child principle must underlie any end-of-life decision made
for a newborn and, as such, will for the backdrop to all of the abovementioned
discussions.
This contribution does not pretend to provide a solution to the problems discussed
and is aimed more at evoking discussion on these issues.
2 Interests of the child
Children are vested with specific children’s rights in terms of section 28 of the
Constitution.13 So, for example, the child has the right to family or parental care,14
the right to basic health care services,15 the right to be protected from maltreatment,
neglect, abuse or degradation and, most importantly, the right to have his or her best
interests be of paramount importance in all matters affecting the child.16
The United Nations Convention on the Rights of the Child17 not only recognises the
child’s right to life,18 but also places an obligation on states parties to ensure to the
maximum extent possible the survival and development of the child.19 Article 23 of
the Convention lends support to the quality of life principle. In terms of this article
“[s]tates Parties recognize that a mentally or physically disabled child should enjoy a full
and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the
child's active participation in the community.”
Articles 6 and 23 of the Convention must always be read against the backdrop of
article 3 which states that “in all actions concerning children … the best interests of
the child should be a primary consideration”.
Similar provisions are found in the African Charter on the Rights of the Child.20
In addition, the Children’s Act,21 which commenced operation on 1 July 2007,
recognises that the best interests of the child are of paramount importance in all
matters concerning the care, protection and well-being of the child.22 And, for the
first time in South African law, it has been recognised that children with disabilities or
chronic illness have special needs and, in terms of section 11(3), these children have
the right not to be subjected to medical, social, cultural or religious practices that are
detrimental to their health, well-being or dignity.
In the context of end-of-life decisions, for newborns, the child’s best interests must
always be the primary and indeed the paramount consideration. It is submitted that,
in determining the best interests of the child, considerable weight should be attached
to the human dignity of the child and that any decision which promotes the human
dignity of the child will, inevitably, be in the best interests of the child.
3 The right to life and the right to human dignity
Although this contribution does not seek to traverse the veritable minefield of ethical
considerations which may play a role in end-of-life decisions for newborns, no
contribution on this controversial and contentious issue will be complete without at
least some mention of these ethical considerations. However, given the
interpretation placed inter alia on the right to life,23 the right to dignity,24 the right to
access to health care25 and the right not to be refused emergency medical
treatment26 our courts have given a clear indication the role of ethical considerations
in end-of-life decisions is limited. The purpose of the discussion about ethical
considerations is therefore merely to indicate the extent to which these
considerations can still play a role in end-of-life decisions for newborns in the South
African context.
Further, it must be borne in mind that end-of-life decisions for newborns do not only
entail the evaluation of ethical considerations, but must, of necessity also entail a
consideration of the law.27 The principle of justice requires that competing claims
must be weighed up against each other and a decision must be made on the basis of
fairness.28 In the South African context this largely entails the weighing up of
competing constitutional rights.
The South African Constitution is widely hailed as one of the most progressive
constitutions in the world.29 Any conduct which is inconsistent with the Constitution is
invalid30 and the rights enshrined in the Bill of Rights31 must be respected, protected
and promoted. The Constitution enshrines the unqualified right to life,32 the right to
access to health care services,33 the right to emergency medical treatment,34 the right
to human dignity,35 the right to freedom of religion, belief and opinion,36 and it
specifically enshrines children’s rights.37 It is against the backdrop of the
Constitution, therefore, that end-of-life decisions for severely disabled newborns must
be made and ethical considerations which may influence these decisions judged.
3.1 Sanctity of life
In terms of the sanctity of life principle, human life is seen as divinely sanctioned and
inviolable.38 In terms of this principle life is a divine gift from God and, save in
exceptional circumstances, only God has to power to end life.39 Supporters of this
principle argue that human life is sacred irrespective of the quality of that life40 and
that any treatment which would have been given to a normally healthy baby must
also be given to a physically or mentally disabled baby, irrespective of the degree of
the disability, or social, economic and personal costs.41
3.2 Quality of life
Like the sanctity of life principle, the quality of life principle recognises that life is
precious. The latter principle suggests that while life in the biological sense has
value in itself, it also holds the potential of being meaningful and valuable.42 What is
necessary in terms of the quality of life principle is to weigh up existing and future
advantages attached to treatment, together with the possibility of enjoying life,
against disadvantages such as pain and suffering.43 The quality of life principle does
not promote the preservation of life at all costs and it recognises that in suitable
circumstances, it may be better not to preserve life than to preserve it.44
3.3 Beneficence and non-maleficence
The principles of beneficence and non-maleficence are closely related45 components
of the Hippocratic Oath.46 In terms of this oath no treatment which will be detrimental
to the patient may be administered.47 The principle of non-maleficence entails that
the benefits of treatment must be weighed up against the harms thereof, while the
principle of beneficence refers to the “duty to confer benefits and actively to prevent
and remove harms”48 It is obvious that these principles overlap in that the former
requires that no action be taken that will result in harm, while the latter requires
actions to be taken to promote the “good” and to prevent harm49
The principle of beneficence may, in circumstances where pain, suffering and
discomfort will result, require that the neonate not be treated,50 while treatment is
optional where treatment holds the reasonable prospect of recovery, while pain and
suffering are unavoidable.51 Therefore, when treatment would be more harmful than
non-treatment, the principle of beneficence may require the cessation of treatment.
3.4 The right to life and the right to human dignity
In the pre-constitutional dispensation the question of “sanctity of life” as opposed to
“quality of life” was raised in the context of cessation of life supporting treatment in
Clarke v Hurst NO.52
What is important from the decision in Clarke v Hurst NO is Thirion, J’s finding that
mere restoration of certain biological functions cannot be regarded as saving the
patient’s life. Thirion, J held that
“The maintenance of life in the form of certain biological functions such a heartbeat,
respiration, digestion and blood circulation but unaccompanied by any cortical and
cerebral functioning of the brain, cannot be equated with living in the human or animal
context.”53
The court reiterated that in deciding whether a particular course of action would be in
the best interests of the patient, the courts will approach the matter with a strong
predilection in favour of the preservation of life. 54 This does not, however, mean that
life should be maintained at all costs, irrespective of its quality.55
After enactment of the Constitution in 1996 the question of “life” takes on a
constitutional aspect. Section 11 of the Constitution states that
“[e]veryone has the right to life”
While this, at first glance, seems to lend unqualified support to the sanctity of life
principle, the decision in S v Makwanyane56 suggests that this is not necessarily the
case.
In S v Makwanyane,57 the first case ever to be heard by the, then newly constituted,
Constitutional Court, the court had the opportunity to consider the content of the
section 11 right to life,58 albeit in the context of the constitutional validity of the death
penalty.59
In a concurring minority judgement, O’Regan, J made some important comments
about the content of the right to life, which indicate that the sanctity of life principle
cannot be used in an unqualified manner and that the quality of life principle should
play an important role in end-of-life decisions for newborns in South Africa. Firstly,
the right to life was given a certain, minimum content when O’Regan, J held that
“The right to life is, in one sense, antecedent to all the other rights in the Constitution.
Without life, in the sense of existence, it would not be possible to exercise rights or to be
the bearer of them. But the right to life was included in the Constitution not simply to
enshrine the right to existence. It is not life as mere organic matter that the Constitution
cherishes, but the right to human life: the right to live as a human being, to be part of a
broader community, to share in the experience of humanity.”60
Therefore, while the right to life in section 11 is unqualified in its wording, O’Regan, J
qualifies it at least to the extent that what is protected is the right to human life
coupled with the necessary cognitive ability to experience that life.
Second, O’Regan, J inextricably linked the right to life61 to the right to human dignity62
when she held that
“The right to life, …, incorporates the right to dignity. So the rights to human dignity and
life are entwined. The right to life is more than existence – it is a right to be treated as a
human being with dignity: without dignity, human life is substantially diminished. Without
life, there cannot be dignity.”63
The role of human dignity in the interpretation of rights was discussed in Dawood v
Minister of Home Affairs64 where it was held that human dignity is a fundamental
value of the Constitution,65 and, as such, informs the constitutional adjudication and
interpretation of many, and possibly all, other rights.66 Therefore, human dignity is
more than a right that must be protected; it is a value fundamental to the
constitution.67 This must play an integral role in end-of-life decisions.
The dicta of O’Regan, J in S v Makwanyane68 read with the decision in Dawood v
Minister of Home Affairs69 suggest that quality of life is an important consideration.
When the individual cannot be part of a broader community and share in the
experience of humanity, the value of life is diminished and protecting the dignity of
the newborn becomes all the more important: Even if this means that his/her
biological life must be terminated.
Adding weight to the debate surrounding end-of-life decisions, Mahommed, J in
Makwanyane, raised the following questions in his concurring minority opinion:
“’[E]very person shall have the right to life’. What does that mean? What is a ‘person’?
When does ‘personhood’ and life begin? … Does the ‘right to life’, within the meaning of s
9, preclude the practitioner of scientific medicine from withdrawing the modern
mechanisms which mechanically and artificially enable physical breathing in a terminal
patient to continue long beyond the point when the ‘brain is dead’ and beyond the point
when a human being ceases to be ‘human’ although some unfocused claim to qualify as a
‘being’ is still retained? If not, can such a practitioner go beyond the point of passive
withdrawal into the arena of active intervention? When? Under what circumstances?”70
Despite raising these questions, Mahommed, J unfortunately found it unnecessary in
the matter at hand, to comprehensively define the right to life in order to
accommodate these and other complex questions surrounding the right to life.71
4 The right to freedom of religion, belief and opinion
Section 15 of the Constitution guarantees the right to freedom of religion, belief and
opinion. End-of-life decisions for newborns are sometimes made based on the
religious convictions of the parents of the child. In some cases the parents would,
based on their own religious convictions refuse to consent to the treatment of the
child,72 while in others the parents may refuse to consent to the withdrawal of
treatment which will inevitably lead to the death of the child.
The only reported case dealing directly with end-of-life decisions for newborns is the
2003 decision in Hay v B and Others.73 In this case an infant urgently required a
blood transfusion if he were to survive. His natural parents refused to grant the
necessary consent for the transfusion, citing their religious beliefs and their concern
about the risks of infection associated with blood transfusion as the reasons for their
refusal. The paediatrician responsible for the treatment of the child brought an
urgent application for an order authorising her to administer the transfusion despite
the absence of parental consent. On the evidence it appeared that although it was
not a certainty that the infant would survive if he were to receive the transfusion, it
was a certainty that if the transfusion were not administered, the child would die.
The court, per Jajbhay, J, held that the child’s section 28(2)74 right that his interests
be of paramount importance in every matter affecting him was the single most
important factor to be considered.75 It was further held that the child’s section 11
right to life76 is an inviolable right77 and that it was in the child’s best interests to
receive the transfusion.78 The court based this decision on the fact that the child
would “live as a human being, be part of a broader community and share in the
experience of humanity”.79 It was held that the religious freedom of the parents of the
child could not override the child’s right to life.80
While the decision in Hay v B81 is valuable in that it illustrates that a decision by the
parents of the child that is not in the best interests of the child can be disregarded in
appropriate circumstances, it must be distinguished from the normal type of end-oflife
decision case. In this case it the treatment would probably have saved the
infant’s life, while non-treatment would certainly have ended the child’s life. It is
doubtful whether the dicta in Hay regarding the inviolability of the child’s life will be
useful in cases where it is doubtful that treatment would save the child’s life, while
leaving the child with no quality of life to speak of if the treatment does succeed in
saving the child’s life in a biological sense. In these circumstances the dicta of
O’Regan, J in Makwanyane82 regarding quality of life and dignity would be the more
important consideration.
What is important in the context of end-of-life decisions is that the parents or
guardian of a child may, in terms of section 129 (10) of the Children’s Act,83 no longer
on the basis only of religious or other beliefs refuse to grant consent to medical
treatment or a surgical operation unless they can show that there is a medically
acceptable alternative to the suggested treatment or operation.84 Therefore, an endof-
life decision can no longer be based on the religious convictions of the parents or
guardian of the child.
5 HIV/AIDS and its influence on end-of-life decisions
The impact of HIV/AIDS in South Africa cannot be denied. In the past, due to limited
resources, care for HIV positive children has been limited to those in whom a better
outcome is presumed.85 However, the question is whether the HIV status of a child
should be considered in end-of-life decisions for the neonate.
It is generally accepted that HIV status is a private matter86 and that a medical
practitioner should only test and/or treat a patient for HIV infection with the informed
consent of the patient.87 In the context of end-of-life decisions for newborns, the
consent of the parents or guardian88 of the child for HIV testing would have to be
obtained prior to the testing and the parents or guardian would have to undergo
counselling before consent can be given.89
Once the child has been tested disclosure of the HIV status of a child is generally
prohibited, unless it is necessary for the purpose of carrying out the provisions of the
Children’s Act,90 for the purpose of legal proceedings or in terms of a court order.91
In terms of section 130 of the Children’s Act92 no child may be tested for HIV unless it
is in the best interests of the child and the necessary consent was obtained.
This new legislation has not yet been interpreted by our courts and it is therefore
uncertain exactly when HIV testing would be in the best interests of the child. At first
glance this requirement seems to suggest that any HIV testing should only be done
for purposes of deciding whether the child needs treatment for HIV, since it does not
seem to be in the best interests of the child to test him or her for HIV for purposes of
determining whether or not the child should be excluded from care. Therefore, it is
doubtful whether HIV testing could be used to determine whether non-treatment of a
severely disabled child is justifiable.
However, the argument might be made that that, in promoting the dignity the severely
disabled neonate, end-of-life decisions would be in the best interests of the child and
therefore, the HIV status of the child could play a role in determining the best
interests of the child. However, the problem with this kind of argument is that the HIV
status of the child might start playing a decisive role instead of merely playing a
supportive role. If the HIV status of the child is merely one factor that is considered
and more weight is attached to other factors, it might be acceptable to consider the
status of the child. The HIV status of the child should, however, not be elevated to
the decisive factor.
6 Lack of resources and its role in end-of-life decisions
While much has been written about end-of-life decisions for newborns, it is
interesting to note that most of the contributions in this field emanate from developed
countries and, accordingly, there is seldom mention of the fact that resources may be
limited.93
While it is accepted that the best interests of the severely disabled neonate should be
the primary and indeed the decisive consideration in end-of-life decisions, economic
considerations cannot be ignored. It has been suggested that while the economic
and social cost of treating a severely disabled newborn is a reality and is a
consideration, it should not become the criterion against which the life of a person is
measured.94 In an ideal world this would be an acceptable solution, however, the
economic considerations cannot be ignored.95 In the South African context limited
resources is a harsh reality and end-of-life decisions must be considered in the
context of this reality.
For example, East London’s Frere Hospital recently made headline news when it was
discovered that a serious lack of resources lead to or at least contributed to the still
birth of more than 2000 babies in the past 14 years and that in July of 2007 alone, 43
newborn babies died96 in the maternity ward. It was uncovered that nurses were
“forced to play God with the allocation of inadequate facilities” and that “mass burials
[where held] for those who did not make the cut”.97 While it is not suggested that the
situation in all state hospitals are this bad, all parts of South Africa are experiencing a
shortage of nurses, doctors, pharmacists,98 and other resources.
The latest World Health Organisation statistics indicate that in 2004 the general
government expenditure on health represented a mere 40.4% of the total expenditure
on health.99 In the same year the per capita government expenditure on health at the
international dollar rate was $302.4. This can be compared to the $1149.8 of
Greece, the $1609.7 of New Zealand, and the $2106.8 of Australia. Add to this the
fact that an estimated 13.7 -15 % of the population is covered by medical
aid/insurance100 which generally entitles them to private medical treatment, and it
becomes obvious that lack of resources is a harsh reality that has to be dealt with on
a daily basis.
Further, an estimated 42.5% of South Africans live in rural areas,101 where health
care facilities are severely understaffed and under-resourced. The socio-economic
circumstances of rural families, such as the lack of electricity and even running
water, abject poverty and wide spread illiteracy also have an influence on the
evaluation of the quality of care which can be provided for the severely disabled
infant,102 which, in turn, must necessarily influence the end-of-life decision.
Furthermore, only Tertiary Academic centres and a few regional hospitals have the
facilities to provide neonatal intensive care, but none of these centres have sufficient
beds to provide neonatal intensive care to all of the infants in the region who would
benefit from such care.103 In fact, it is estimated that less than a third of the infants
born outside of the private sector in South Africa have access to neonatal intensive
care.104 The result is that some sort of rationing must practiced.105
The message is a simple one: “the health service budget is finite, the demands on it
are infinite.”106
Cooper107 suggests that a policy of distributive justice should be followed in the
distribution of scarce medical resources. This would demand a fair and equitable
distribution of resources and the application of the utilitarian maxim of triage whereby
the resources should be used in such a way to provide the greatest good for the
greatest number of people.
A similar approach was sanctioned by the Constitutional Court in Soobramoney v
Minister of Health, Kwa-Zulu Natal,108 where it was held that the right to access, inter
alia, to health care services109 together with the concomitant obligation placed on the
state to take reasonable legislative and other measures within its available
resources, to achieve the progressive realisation of this right110 is dependant on the
available resources and therefore the right itself is limited by a lack of resources.111
The court held that the case had to be seen in the context of needs which the health
care services had to meet.112 Further, it was acknowledged that difficult choices had
to be made regarding the macro and micro allocation of funds113 and that, as long as
the decisions were rational decisions, the court would be loathe to interfere with
decisions made by the decision makers (politicians) in good faith.114
As far as the right not to be refused emergency medical treatment115 is concerned,116
the court held that what is contemplated in section 27(3) was a “sudden catastrophe
… which called for immediate medical attention”.117 To place another construction on
the words “emergency medical treatment” would, according to the court, result in
terminal illnesses being prioritised over other forms of medical care, which could not
have been the intention behind section 27(3).118
In the context of end-of-life decisions for newborns, therefore, the lack of resources
may justify a decision not to provide the required life sustaining treatment, while it is
doubtful that recourse could be had to the section 27(3) right not to be refused
emergency medical treatment in the context of end-of-life decisions for severely
disabled neonates.
This approach seems to run contrary to the traditional doctor patient relationship
where the medical practitioner is required to do his / her best for each individual
patient.119 However, if one shifts the focus slightly, it can be argued that the medical
practitioner will still comply with this requirement if he/she does his/her best for each
individual patient within the limits of the available resources.
7 End-of-life decisions and the law
7.1 Active euthanasia
Active euthanasia is not sanctioned in South Africa. The unlawful and intentional
killing of another amounts to murder and the motive with which the killing took place
does not influence the unlawfulness of the action.120
7.2 Passive euthanasia
The question of passive euthanasia through the withdrawal of non-natural feeding
and hydration of a patient in a permanent vegetative state was considered in Clarke v
Hurst NO.121 The decision in this case serves as authority for the fact that, if it is in
the best interests of the patient, life sustaining treatment may be withdrawn,
particularly where the patient is suffering unbearable pain or is in a vegetative state
and that while such an action may amount to passive euthanasia, the actions will not
be unlawful. Therefore, following the decision in Clarke v Hurst NO cessation of life
supporting treatment is accepted.
7.3 South African Law Reform Commission
In 1998 the South African Law Reform Commission published a report122 in which the
desirability of legislative intervention on the position regarding euthanasia in general
was considered. Included in this report was a section dealing with the question of
indefinite artificial preservation of life and particularly artificial preservation of life in
the absence of an advance directive.
The Law Reform Commission held the view that where there is no reasonable
prospect of recovery, there is no moral or legal duty on an individual to order to
continue treatment123 of a severely disabled baby who is terminally ill.
In terms of the South African Law Commission recommendations, a medical
practitioner could authorise the cessation of treatment of a severely disabled infant
who is terminally ill,124 provided that the diagnosis is confirmed by another medical
practitioner. The cessation of medical treatment will not be unlawful merely because
it contributes to the causing of the patient’s death. However, the cessation of life
sustaining treatment may only be authorised if it is not in conflict with the wishes of
interested family members or authorised by a court order. Further, the court may,
upon application of an interested party and after considering the wishes of interested
family members, authorise the cessation of treatment. Any medical practitioner who
gives effect to such an order will not incur any criminal, delictual or other liability.
These recommendations have not been incorporated in legislation, and therefore, the
common law position still applies in terms of which passive euthanasia is permitted
provided that it is in the best interests of the patient.
8 Conclusion
In this contribution attention was given to four aspects which have a particular impact
on end-of-life decisions for newborns in the South African context and underlying all
of these considerations is the paramount importance of the best interests of the child.
First, it was shown that while the Constitution enshrines the right to life, this right is
inextricably linked to the right to and the fundamental value of human dignity. It was
shown that quality of life is an important consideration. When the individual cannot
be part of a broader community and share in the experience of humanity, the value of
life is diminished and protecting the dignity of the newborn becomes all the more
important. Even if this means that his/her biological life must be terminated.
Second, it was shown that while the right to freedom of religion, belief and opinion is
a constitutionally enshrined right, the parents or guardian of a child may no longer
make an end-of-life decision based solely on the exercise of this right. The best
interests of the child will override the right to freedom of religion, belief and opinion.
Third, it was shown that a child may only be tested for HIV if it is in the best interests
of the child. Here it was argued that it is doubtful whether the HIV status of the child
will, in future, be allowed to play a role in end-of-life decisions.
Fourth, the impact of the lack of resources on end-of-life decisions was considered.
Here is was shown that the interpretation placed on the right to have access to health
care services,125 and the right not to be refused emergency medical treatment126
suggests that lack of resources may and, indeed, must, have an influence on end-oflife
decisions for newborns.
And, fifth, it was shown that while active euthanasia is not sanctioned in South Africa,
passive euthanasia through the cessation of life sustaining treatment is permitted if it
is in the best interests of the patient.
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