Withdrawal of Treatment From Newborns in Australia: Baby D (No 2)  Fam CA 176
Australia has had its first reported case on withdrawal of treatment from newborns. The case involved Baby D, who was born at 27 weeks gestation. She was a twin. Both twins needed support in neonatal intensive care and had to be incubated and ventilated. Baby D’s twin recovered well and no longer needed ventilation, but Baby D’s airways had become inflamed, most probably because of the tube in her windpipe. The doctors believed that they could remove the tube and treat her inflammation, but after the tube was removed she deteriorated and attempts were made to reinsert the tube. Unfortunately, her tissue had become so swollen that this proved to be very difficult and the tube was inserted only after 35 minutes. Baby D had to be resuscitated, and it later became clear that she had suffered massive brain damage from the lack of oxygen. The tube was left in place as a means of keeping her airways open. She was attached to a ventilator, but she was breathing on her own and no longer required intensive care. She was fed via a nasogastric tube and responded to touch and was comforted when held and cuddled. She was often distressed and could feel pain. Even though she was severely brain-damaged, her brain stem (which controls basic functions of the body) appeared to be unimpaired. It was likely that she was blind or vision-impaired.
After five months, the parents and doctors believed that the best course of action would be the remove the tube. However, the doctors were unsure whether they should try to reinsert the tube if Baby D had a similar reaction to the extubation that she had the first time it was removed. The head of the treatment team referred the matter to the hospital ethics committee. The ethics committee believed that it would be ethical to withdraw the tube and not replace it should she develop respiratory distress. The ethics committee also thought that, should such distress eventuate, it would be ethical to treat her with palliative care to sedate her and reduce her pain. However, the ethics committee thought it would be appropriate for these questions to be dealt with by a court, and they recommended the parents seek the advice of the Family Court. The parents lodged an application to the court the day after receiving the advice from the ethics committee.
The Legal Issues
There were a number of issues for the court, but the main ones for present purposes include:
Could the parents consent to the removal of the tube or should it be decided by the court?
Was the decision to remove the tube in Baby’s D best interests?
Was the decision to provide palliative care in Baby D’s best interests?
Can Parents Make a Decision to Withdraw Treatment Without Recourse to Court Approval?
In Re Marion (1992) 175 CLR 218, the High Court of Australia outlined limits to the types of treatments and interventions to which parents can consent on behalf of their children. Marion was teenager who lived in the Northern Territory and had an intellectual disability. Her parents had asked the High Court either to give consent to sterilise Marion or to declare that it was lawful for parents to give the consent. The majority of the High Court found that the common law does not allow parents or guardians to give a valid and effective consent to nontherapeutic medical procedures and such procedures need to be court-approved and only where the treatment is in the child’s best interests. Nontherapeutic procedures are treatments that are provided for social or cosmetic reasons and that are not being provided for the treatment of some malformation or disease. Because the sterilisation was being offered for social reasons rather than to treat a disease, it was classed as a nontherapeutic treatment. Marion was later sterilised after it was found by the Family Court that the sterilisation was in her overall best interests (Re Marion (No 2)  FLC 92–448).
Since Marion’s Case, the courts have found a number of treatments to which parents cannot consent and that require court approval. Examples include decisions to donate a child’s bone marrow (Matter of GWW  FamCA 2), treatment for intersex (Matter of a Child (1993) FLC 92–402), treatments for gender identity disorder (Re Alex  FamCA 297), and gonadectomy for Denys-Drash syndrome (Re Sean and Russell  FamCA 948). All of these situations are controversial and one could argue that court authorisation is an appropriate safeguard. Equally one could also argue that in cases where the child is suffering from a treatable condition, and where the family and doctors agree about appropriate treatment, mandatory court approval is an onerous burden which does not add anything to the child’s protection. Part of the problem relates to the difficulty in apply the therapeutic/nontherapeutic distinction. In Baby’s D’s case, would we say that removing the tube, withholding treatment, and providing palliative care is therapeutic or nontherapeutic?
The judge in Baby D’s case (Justice Young) reviewed this history and decided that it was not necessary for the decision to be made by the court and that the parents (with the doctors’ support) could make the choice without mandatory court review. The judge concluded at [143–4]:
There are a number of distinguishing features between the procedure in Marion’s Case and the procedure(s) proposed in the matter of Baby D. The medical procedure of extubation and the foreshadowed administering of palliative care, sedation or medication in the current circumstances are for the treatment of a bodily malfunction or disease, namely Baby D’s upper airway obstruction. My respectful conclusion is that, in the particular factual context of this matter, this places the procedures within the ambit of parental responsibility as procedures that relate to major long-term issues in respect of the health of Baby D and her care, welfare and development.
Was the Decision to Remove the Tube in Baby D’s Best Interests?
All the expert medical opinions and the hospital ethics committee agreed that the tube should be removed and not replaced. The option of operating on Baby’s D windpipe was not pursued because it was felt that it was a major procedure and that such procedures should not be offered to children with profound brain damage (as it was overly burdensome, requiring her to be regularly suctioned every day). The judge summarised the evidence at :
The consensus amongst all of the very experienced and qualified medical practitioners … is that any future life for Baby D must, with certainty, be seen to be one that is, at the least, very burdensome and futile with no expectation of any enjoyment of life and without sight and any meaningful brain capacity.
On that basis, the judge agreed that the removal of the tube and the decision not to reinsert it were in Baby D’s best interests.
Was the Decision to Palliate Baby D in Her Best Interests?
The judge felt that it was in Baby D’s best interests to be given medication to sedate her and relieve her distress, should the tube be removed. The obvious risk of such treatment is that it would further suppress her breathing and in that sense possibly accelerate her death. The judge accepted that this was permissible under the ethical principle of “double effect,” a Catholic doctrine which permits medications to be used to relive pain where death is foreseen but not intended. One of the experts stated:
In such infants it is good, normal medical practice to use sedation and analgesia to ameliorate distress, just as is done in palliative care in adults and older children. The intent is to ease distress and pain. Attendant upon this may be some shortening of life due to the sedation, but this is not the primary intent and is regarded as optimal medical practice, providing the dosages used do not raise concerns about the intent of the sedation.
The judge accepted evidence that Baby’s D’s doctors may not have been able to relieve her distress without risking depressing her breathing and that medication was a humane response to the distress Baby D would feel once the tube was removed. It was therefore in her interests to be given the medication, even though it might shorten her life.
Conclusions and Questions
This case is an important one because it makes clear a number of issues about death and dying. It clearly accepts the idea that life-sustaining treatment can be withheld when it would be overly burdensome to a child. It also accepts that death can be accelerated under the principle of double effect. Most importantly, it allows parents to give consent to end-of-life care without needing to go to court.
But there remain some issues. The first is clarifying how parents and doctors together should weigh the factors in determining the best interests of the child in future cases. The test is vague (perhaps necessarily so). The second is explaining how notions of criminal responsibility for accelerating death can mesh with decisions like these. Of course, it was not Justice Young’s job to answer these issues, but they will remain critical until they are determined by later courts. In some jurisdictions (South Australia, Queensland, and Western Australia), these issues have been squarely addressed by legislation. But in the remaining Australian jurisdictions, the courts still need to provide an answer on these issues of responsibility. If legislation is a possible solution, what is really needed is a uniform approach that balances the powers of families and health professionals and that provides clear avenues for dispute resolution.
No “De-Medicalising” of Abortion in English Law
Abortion is criminally prohibited in English law under sections 58 and 59 of the Offences Against the Person Act 1861, though this statute allows that there are instances wherein the procurement of abortion is not unlawful (see R v. Bourne  1 KB 687). The Abortion Act 1967 (as amended) presents exhaustively the conditions under which abortions may be lawfully performed (see section 5(2) and Royal College of Nursing v. Department of Health and Social Security  AC 801, 826D-E, per Lord Diplock). Section 1(1) of the Abortion Act states that:
Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of the opinion, formed in good faith—
that the pregnancy has not exceeded its twenty-fourth week…; or
that the termination is necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman; or
that the continuance of the pregnancy would involve risk to the life of the pregnant woman, greater than if the pregnancy were terminated; or
that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.
And section 1(3) limits the places where abortions may be performed:
[… A]ny treatment for the termination of pregnancy must be carried out in a hospital vested in the Secretary of State for the purposes of his functions under the National Health Service Act 2006 or the National Health Service (Scotland) Act 1978 or in a hospital vested in a Primary Care Trust or a National Health Service Trust or an NHS Foundation Trust or in a place approved for the purposes of this section by the Secretary of State.
The power under sub-section (3) of this section to approve a place includes power, in relation to treatment consisting primarily in the use of such medicines as may be specified in the approval and carried out in such manner as may be so specified, to approve a class of places.
Whilst Parliament shows a general reluctance to revise the law on abortion, many would like to see it change to reflect and accommodate medical advances that arguably leave the 1967 Act outdated. In the recent case of British Pregnancy Advisory Service v. Secretary of State for Health  EWHC 235 (Admin), the claimant sought, in the words of Supperstone J in paragraph 3 of his judgment:
[T]o establish that it would be lawful, under the Abortion Act 1967, to pilot and if successful adopt, subject to regulation, a process of providing “early medical abortion” (EMA) whereby part of the treatment is self-administered by the woman at home.
The British Pregnancy Advisory Service (BPAS) is a charitable organisation, established shortly after the passing of the Abortion Act 1967, that “support[s] reproductive choice by advocating and providing high quality, affordable services to prevent or end unwanted pregnancy with contraception or by abortion” (see www.bpas.org/bpasabout). In BPAS v. Secretary of State for Health, there was no factual question on which the court had to adjudicate. Rather, BPAS was seeking clarification on whether EMA could be interpreted as lawfully falling within the Abortion Act. In his summary of the regulatory framework, the judge highlights the medical context, and thus the problem, faced by BPAS (para 5):
The Abortion Act 1967 as amended (“the Act”) provides that any treatment for the termination of pregnancy (whether surgical or medical) must be carried out in a hospital vested in the Secretary of State, an NHS Trust, Primary Care Trust (PCT) or Foundation Trust, or in a place approved for the purpose by the Secretary of State: section 1(3). The Secretary of State for Health is therefore responsible for approving independent sector service providers for the purpose of treatment for the termination of pregnancy. Independent sector providers, after having registered with the Care Quality Commission (CQC) and on receipt of approval from the Secretary of State for Health, can carry out abortions up to 24 weeks’ gestation.
Furthermore, in paragraph 9, he notes how the legislation might be said to reflect an outdated clinical model:
When the Act was passed in 1967, the normal method of abortion then in use was surgical abortion. The term “early medical abortion” (EMA) is used to describe the termination of pregnancy of up to nine weeks, by means of a combination of drugs rather than surgery. With the licensing of the drug mifepristone in Great Britain in 1991, medical abortion became an alternative to surgical abortion.
The EMA process includes two instances at which drugs must be taken: first, mifepristone, and second, within two to three days, a dose of misoprostol (there was what was held to be an immaterial disagreement between the defendant, who put the time window at 48 hours, and the claimant, who put it at 72). Under current practice, women return to the hospital or clinic to take the second drug. However, BPAS argued that women should be free to take the misoprostol at home. This would overcome practical concerns such as problems with making time for the second visit and rearranging clashing commitments and overcome welfare concerns, specifically women’s fear that they will miscarry when returning home. Although allowing women to take misoprostol at home would seem to be unlawful under English law, the court noted that it is permissible in other jurisdictions.
The claimant made two arguments concerning statutory construction: first, that the courts should interpret the law in a way that is commensurate with the purpose of the Act, which here was to ensure that abortions would be safe, as they would be using EMA (para 15); and second, “that Parliament intends the court to apply to an ongoing Act a construction that continuously updates its wording to allow for changes since the Act was framed” (para 16). Supperstone J rejected each line of reasoning:
The Claimant’s case is that the concept of treatment does not include the taking of an abortifacient because treatment refers only to the act of prescription of such a drug. The Secretary of State submits that “treatment” includes the use or administration of the abortifacient drug. In my view, the Claimant’s submission runs counter to the natural and ordinary meaning of the word “treatment.” […]
The critical phrase in s.1(3) is “any treatment for the termination of pregnancy.” “Treatment” is not, in my view, properly restricted to the act of diagnosis and the prescription of drugs or medicine. If the drugs or tablets were prescribed by the registered medical practitioner and not taken by the woman, the opportunity for treatment would have been available but it would not have been taken. The aim of the treatment, whether medical or surgical, must be the termination of a pregnancy. Termination is the consequence of the treatment; it is not itself treatment.
The interpretation put by the Claimant on the words “any treatment for the termination of pregnancy” requires it to submit that the pregnancy is terminated by a registered medical practitioner in s.1(1) when that person merely prescribes an abortifacient drug. However termination may or may not be the consequence of the prescription. A woman may decide not to proceed to take the drug.
Thus, in paragraph 34, the judge holds that:
The development in medical science on which the Claimant relies is that the drug, misoprostol, is capable of being administered by the woman to herself at home. However in the light of the express wording of section 1(3) and section 1(3A) I am of the view, applying the test of Lord Wilberforce in Royal College of Nursing at 822A-G, [that] this “new state of affairs, or … fresh set of facts … fall within the same genus of facts as those to which the express policy has been formulated”; alternatively, in my view, there is a clear purpose in the legislation which can only be fulfilled if the Secretary of State’s interpretation of the concept of treatment is adopted.
Given these reasons, and concerns that unsafe drugs might also fall into the revised regulatory regime, BPAS’ case failed. Any change in policy, it was held, would have to be instituted by the Secretary of State, who is in a position to react to scientific advances and who is empowered to extend the range of places where treatment may be administered.
Withdrawing Life-Sustaining Treatment From Prisoners: Application of Justice Health; re a Patient  NSWSC 432
New South Wales is a common law system without substantial human rights protections, and prisoners in New South Wales have had very stringent conditions placed on whatever rights they have enjoyed. In the area of medical treatment, this resulted in a policy whereby prisoners were continually treated even beyond the point of futility. Support for this policy was arguably based on the Crimes (Administration of Sentences) Act 1999, s 72A, which states:
An inmate must be supplied with such medical attendance, treatment and medicine as in the opinion of a medical officer is necessary for the preservation of the health of the inmate, of other inmates and of any other person.
Following this section, there was no practice of allowing competent prisoners to refuse treatment or of withdrawing treatment from incompetent prisoners when it was in their best interests, if the medical officer believed that the treatment was necessary for keeping the prisoner alive. Effectively this meant that prisoners were treated to death.
This practice was recently challenged by the Supreme Court in Application of Justice Health; re a Patient  NSWSC 432. The prisoner in this particular case was terminally ill with end-stage lung cancer. He was no longer competent to consent to any treatment plan or to refuse treatment, and there was no alternative decision-maker to provide any consent. The Supreme Court had been approached by Justice Health to see whether it was legally required for life-sustaining treatment to be maintained and, in particular, whether they would need to provide cardiopulmonary resuscitation should the prisoner arrest. Brereton J read s 72A against the objects of the Act which were stated in s 2A(1) to be:
This Act has the following objects:
to ensure that those offenders who are required to be held in custody are removed from the general community and placed in a safe, secure and humane environment,
to ensure that other offenders are kept under supervision in a safe, secure and humane manner,
to ensure that the safety of persons having the custody or supervision of offenders is not endangered,
to provide for the rehabilitation of offenders with a view to their reintegration into the general community.
Brereton J found that s 72A, when read in the light of these objects, should not “have the effect of making more stringent medical standards applicable to inmates than to persons admitted to hospitals in the community” (at ). Brereton J said at [13–4]:
The fundamental question is whether the mere prolongation of life, without quality, is “preservation of the health of the inmate” for the purposes of s 72A. I am acutely conscious of the undesirability of embarking on this topic in the absence of a contradictor. The evidence discloses that those who might be expected to have an interest in the patient’s care and welfare have, to the extent possible, been contacted—including a son and a former wife—but do not wish to be involved in the medical decision-making process. On the other hand, I think it is desirable that the medical practitioners be able to have a degree of certainty that the course they propose to take is not contrary to the statutory requirements of s 72A. If ever the issue is contested, the authority of this judgment will appropriately be discounted for absence of a contradictor.
In my view, treatment that is futile is not treatment that is necessary for the preservation of health. The mere fact that the treatment might prolong life, by hours or days, without quality, does not make it treatment that is necessary for the preservation of health. Although life and health are closely associated, there is a distinction between treatment necessary for the preservation of health, and treatment that might achieve the mere prolongation of life.
On that basis his Honour declared that the section did not require the patient to be given cardiopulmonary resuscitation.
The decision should be welcomed. New South Wales has a large prison population and, like all prison populations, is subject to high prevalence of serious medical conditions that often require decisions to be made about withholding and withdrawing treatment. What remains to be seen is how the courts will react to a refusal of treatment that challenges the public interest in the maintenance of order, security, and discipline. In the United Kingdom, this public interest appears to have waned. For example, in Reeves v Commissioner of Police  3 WLR 386, Lord Hobhouse at 386 stated that:
Suicide is within the range of conduct lawfully open to a person: personal autonomy includes the right to choose conduct which will cause that person’s death and the right to refuse to allow others to obstruct that choice. … Imprisonment does not deprive the prisoner of that autonomy.
In Secretary of State for the Home Department v Robb  1 All ER 677, Thorpe J came to the conclusion that the prisoner’s right to self-determination should outweigh the public interest in force-feeding him, as there was no evidence that there would be disruption of order and security in the prison.
There should be doubts about whether this represents the law in Australia. In Schneidas v Corrective Services Commission (unreported, NSWSC, 8 April 1983), Lee J relied on statutory powers concerning medical treatment to force-feed a prisoner. Lee J did note that he would refuse to grant an injunction in aid of the prisoner on the grounds that he did not wish to aid and abet a suicide. There are similar approaches taken in some United States jurisdictions: White v Narrick 292 SE 2d 54 (1982); Laurie v Senecal 666 A 2d 806 (1995); In re Caulk 480 A 2d 93 (1980); North Dakota v Vogel 537 NW 2d 358 (1995). These authorities suggest that any prisoner in Australia who refused treatment as a form of protest may find his or her right to do so very swiftly curtailed.
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Cite this article
Stewart, C., Coggon, J. Recent Developments. Bioethical Inquiry 8, 227 (2011). https://doi.org/10.1007/s11673-011-9321-3
- Palliative Care
- Gender Identity Disorder
- Justice Health