Cross Examination: Withdrawal of Life Support Without Parental Permission?

BY HANNAH YANG

The issue of withdrawing life support from a child against parents’ wishes is one ileich has come under public scrutiny recently in the UK, with media closely following the case of Charlie Gard, an infant who suffers from a fatal and incurable disease. The case attracted much public controversy and after much attention on social media, ultimately culminated in threats and abuse directed at hospital staff.[1] Although, it will be seen, the outcome is not without humanity, nor the law without logic, as the furore might lead some to believe.

Charlie Gard

Charlie is, as of this writing, an 11-month-old infant who suffers from a mutation of the RRM2B gene resulting in mitochondrial DNA depletion syndrome (MDDS).[2] MDDS causes the dysfunction of several organ systems.[3] The result is that Charlie is deaf, cannot move his arms or legs, must rely on a ventilator to breathe, and shows no usual signs of normal brain activity.[4]

Charlie’s parents agreed that this quality of life at present is not worth sustaining, however, they wished to take him to the United States for nucleoside therapy treatment.[5] This was objected to by Great Ormond Street Hospital (GOSH), on the grounds that the treatment would not be in Charlie’s best interests. There is no evidence that this treatment would work and it has not been tested on either mice or humans with the RRM2B deficiency,[6] but it may well cause Charlie pain and suffering.[7] Accordingly, GOSH applied for a declaratory order from the court that it would be lawful to keep Charlie in the United Kingdom, withdraw artificial ventilation, and not to undergo the treatment.[8]

After consideration, the Court granted GOSH the declarations it sought, ruling that the treatment would not be in Charlie’s best interests.[9] This was later upheld on appeal,[10] then confirmed again back in the High Court on 24 July after a new hearing, by which time MRI scans showed that Charlie’s state was beyond the help of even pre-experimental treatment.[11]

English Law

In this context, the question that naturally arises is why it is that the court decides the fate of the child, and not the child’s parents. The answer lies in the approach taken by the law in such cases. The legal test that operates is not what parents wish for their child, but what is in the child’s best interests, as held in Wyatt v Portsmouth Hospital NHS Trust.[12] It must be emphasised that this is an objective test. What parents wish for their child, while perhaps relevant to the objective inquiry, is not necessarily the same as what is in the child’s best interests.

The steps to be taken were clarified in An NHS Trust v MB.[13] Ten points were set out in that judgment:[14]

  1. Where a dispute arises between doctors and parents and one party appeals to the court to make a decision, the court has a duty to make such a decision with objective judgment.
  2. The right and power of the court to make the decision arises because the patient cannot decide for themselves (whether due to age or otherwise).
  3. The decision is not what the judge subjectively deems to be reasonable.
  4. The decision is to be made by applying an objective test.
  5. This test is the best interests of the patient, and encompasses the widest considerations possible.
  6. Such considerations cannot be weighed mathematically, though the court must do its best to strike a balance.
  7. Considerable weight is to be attached to the prolonging of life, but this is not absolute, and it can be outweighed if suffering is sufficiently great and quality of life is sufficiently small.
  8. All cases are highly fact-specific.
  9. The views of both doctors and parents are to be fully considered, with an emphasis on parents’ opinions regarding relevant matters of fact, as opposed to their subjective wishes.

In the case of Charlie Gard,  while it was accepted that the sanctity of life must always be the starting point,[15] it was ultimately found that the treatment would have so little benefit that it would make no difference to Charlie’s condition.[16] So to undergo it would not be in his best interests. While there has been a new hearing since, the ruling has not changed, and in any case the decision for a new hearing turned on an apparent change in fact, not law. The case therefore remains an affirmation of the best interests test in the UK, that in certain circumstances it may be legal to withdraw artificial ventilation or other forms of life support from children or incompetent patients, against the wishes of family.

New Zealand Law

In New Zealand, the position is similar to that of the UK. While withdrawing life support or ventilation from a patient without their consent would generally be a culpable homicide (as defined under section 160 of the Crimes Act as the killing of any person by an unlawful act or omission), it has been held that the withdrawal or non-administration of life support may be lawful if certain tests are met. In Seales v Attorney General, Collins J ruled that withdrawal of life support would not be illegal if the circumstances are considered “medically futile”.[17]

While authoritative, the ruling does not provide much in the way of elaborate explanation. A more informative discussion can be found in Auckland Area Health Board v Attorney General, which concerned a man with Guillain-Barre syndrome who was dependent on artificial ventilation in order to remain alive.[18]

In this judgment, on the matter of jurisdiction, the Court reaffirmed its ability to make declaratory orders on the legality of doctors’ decisions.[19] While it was acknowledged that the court in its civil jurisdiction would not normally usurp the function of the criminal court, and that even where a declaration was made it could not be binding on a criminal court, these factors were nevertheless outweighed by the need to give doctors more certainty as to how they may act while carrying out their profession.[20] The result is that it is established in New Zealand that courts may make declaratory orders on such matters, albeit sparingly and with great care.

On the matter of the central issue of whether withdrawal of life support would be legal, the Court held that the question was a highly fact-sensitive one, a position which we have seen is echoed by the English courts. Whether a case would fall under s 151 of the Crimes Act, which at the time imposed a duty on a doctor to provide a patient in their care with necessaries of life depends on the extent of the patient’s chances of recovery. If life support is required to prevent a disease that is endangering the health of the patient, it would be deemed a necessary, and the doctor would be under a duty to provide it. However, if the patient is beyond recovery and life support is the only thing that is keeping them alive, the life support shall not be considered a necessary of life.[21] The challenge is in deciding where to draw that line, a challenge which has been made more difficult due to advances in life-supporting technology as it becomes unclear at what point it can be said life has ended and death has begun.[22]

The Court in Auckland Area Health also held that even where the life support is deemed to be a necessary of life, doctors would still have a lawful excuse for discontinuing treatment where there is no medical justification for continuing it.[23] The test is whether such discontinuation is in accordance with good medical practice.[24] Whether the test is satisfied depends on five things:[25]

  1. There must be a bona fide decision as to what is in the best interests of the patient;
  2. The decision must encompass practice that is generally approved in the profession;
  3. There must be consultation and agreement with specialist opinion;
  4. There must be consultation with the profession’s recognised ethical body; and
  5. The patient’s family must be fully informed and freely agree with the proposal.

This strict criteria was later softened by the court in Shortland v Northland Health Ltd, which held that the five points laid out in Auckland Area Health was not necessarily entirely applicable to every situation.[26] Again, the emphasis is on the uniqueness of each individual case. Notably, the Court of Appeal here held that points four and five are not always mandatory. Firstly, point four would be inapplicable where a decision is purely medical and no ethical questions arise.[27] Secondly, point five cannot be mandatory, as to require family consent to discontinue treatment would be to give them the power to demand treatment, a position which is inconsistent with the existing medico-legal framework.[28]

As a result, the two main considerations what is the best interests of the patient, and what is good medical practice approved generally by the profession and specialists in the field. Considerations to be made when deciding on the best interests of a child patient were elaborated on in Auckland Healthcare Services Ltd v L.[29] These are:

  1. The child’s relevant rights;
  2. The therapeutic or medical benefit of treatment;
  3. The chance of recovery;
  4. The parents’ views; and
  5. The impact of treatment on the child.

The New Zealand position is therefore similar to that of the UK, in that the patient is treated as deserving of independent decision-making, regardless of age. The question is what, objectively, is in the patient’s best interests, subject to what is good medical practice, and not what the parents, or even doctors, personally wish for the patient.

A Gap in the Law?

One point that remains unclear is whether doctors still have a duty to provide child patients in their care with the necessaries of life. At the time of the last withdrawal of life support case concerning a child in 2011,[30] s 151 of the Crimes Act was relevant because the duty extended to anyone in charge of any person who is unable to provide themselves with the necessaries of life.[31] Since that case, s 151 has been amended such that the duty under the section applies only to those who have charge of a vulnerable adult.[32] The duty to specifically provide children with necessaries is set out in s 152, however, this applies only to parents or those in place of a parent with charge of a child. Therefore, it appears that the result of these amendments is to have removed the duty previously placed on doctors, and in fact any person other than a parent or caregiver, to provide necessaries even where one would expect a duty to do so.

Perhaps this was an unintentional result, as the purpose of the amendments were to toughen the law around child abuse,[33] in the wake of infamous cases such as those of Nia Glassie and the Kahui twins.

Intentional or not, the apparent implication of this is that under ss 151 and 152, a doctor would not be committing an unlawful omission by withdrawing life support from a child patient regardless of their prognosis, as there is no corresponding duty to provide the life support. This is not to say, however, that the behaviour would certainly be legal. Sections 155, 156, and 157 may all be construed to cover doctors’ duties to their child patients. Section 155 imposes a duty on those administering medical treatment to exercise reasonable skill and care. Section 156 imposes a duty on anyone in charge of a dangerous thing to avoid such danger. Finally, s 157 places a duty on anyone who undertakes to do an act, the omission of which would be dangerous to life, to carry out that act. The crucial questions in the case of a doctor who decides to withdraw life support from a child, are whether such an act can be considered “administering medical treatment”, whether a ventilating machine counts as a “dangerous thing”, and whether the doctor can be said to have “undertaken” to provide the life support at all.

It appears that these questions have not yet been tested in the courts, and so they remain, for now, areas of some uncertainty.

It is an unfortunate truth that occasionally the outcome of a case, while legally justifiable, will be perceived in a way that does not align with the public’s sense of justice. Where death is involved, strong feelings naturally arise and the gravity of the perceived injustice is all the more heightened. In such cases, it is imperative that the facts and law of the case are well understood before jumping to conclusions. Certainly the law ought not and does not pretend it is a flawless construct, but if anything is to be taken from Charlie’s case it is that ill-informed opinions help no one and may bring harm to all parties involved. In the words of Mr Justice Francis, the judge who presided over this case:

“[t]he world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based”.[34]

I submit that it is against this kind of overhasty thinking which we must all endeavour to guard ourselves.

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[1] Great Ormond Street Hospital v Yates [2017] EWHC 1909 (Fam) at [16].

[2] Great Ormond Street Hospital v Yates [2017] EWHC 972 (Fam) at [20].

[3] Great Ormond Street Hospital, above n 2, at [53].

[4] Great Ormond Street Hospital, above n 2, at [58].

[5] Great Ormond Street Hospital, above n 2, at [48].

[6] Great Ormond Street Hospital, above n 2, at [89].

[7] Great Ormond Street Hospital, above n 2, at [49].

[8] Great Ormond Street Hospital, above n 2, at [5].

[9] At [23].

[10] Yates v Great Ormond Street Hospital For Children NHS Foundation Trust [2017] EWCA Civ 410.

[11] Great Ormond Street Hospital, above n 1.

[12] Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181, [2005] 1 WLR 3995 at [87].

[13] An NHS Trust v MB [2006] EWHC 507 (Fam), [2006] 2 FLR 319.

[14] At [16].

[15] Great Ormond Street Hospital, above n 2, at [126].

[16] At [119].

[17] Seales v Attorney General [2015] NZHC 1239, [2015] 3 NZLR 556 at [115].

[18] Auckland Area Health Board v Attorney General [1993] 1 NZLR 235 (HC).

[19] At 243.

[20] At 243–244.

[21] At 249–250.

[22] Auckland Area Health Board v Attorney General, above n 18, at 245.

[23] At 250.

[24] At 250.

[25] At 251.

[26] Shortland v Northland health Ltd [1998] 1 NZLR 443 (CA) at 442.

[27] At 443.

[28] At 443.

[29] Auckland Healthcare Services Ltd v L [1998] NZFLR 998 (HC) at 1003–1004.

[30] Re C; Hutt District Health Board v B [Guardianship: life support] [2011] NZFLR 873 (HC).

[31] Crimes Act 1961, s 151, reprint as at 1 June 2010.

[32] Crimes Act 1961, s 151, reprint as at 1 March 2017.

[33] Crimes Amendment Bill (No 2) 2011 (284–1) (explanatory note).

[34] Great Ormond Street Hospital, above n 1, at [11].