Archie Battersbee: the context and the relevance of the Convention on the Rights of Persons with Disabilities

For several days, the case of Archie Battersbee has been a lead story in the media in England & Wales.   At the time of writing (3 August 2022), the final judicial word appears to have been had as the European Court of Human Rights has both refused the application made by his parents for so-called ‘interim measures’ and declared their application inadmissible.^[1]

Easily-used words such as tragic do not do justice to the case, and I do not here try to comment on its impact on all those directly involved.   However, and not least because of the number of emails asking me about this when I surfaced briefly from a break today, I do think that it is important that some of the wider elements of the case are understood, because not all of the coverage has been helpful.

In particular, it seems to me helpful to tease out the relevance of the UN Convention on the Rights of Persons with Disabilities, because of the implications of the so-called ‘note verbale’ sent by the Committee on the Rights of Persons with Disabilities^[2] to the UK Government requesting that life-preserving treatment be maintained whilst it considers the parents’ application under the Optional Protocol to the CRPD.

Summary of the Battersbee case

Before I turn to the CRPD, it is perhaps worth emphasising that with one notable – temporary – exception, the approach taken by the courts in England & Wales in Archie Battersbee’s case^[3] represents the conventional application of the law relating to decisions about life-sustaining treatment in the context of children where there is a dispute: in other words, the court resolves the dispute by asking whether it is in the best interests of the child for such treatment to be continued.  The views of the child’s parents carry considerable weight, as do the views of the child, to the extent that they can be determined, but ultimately it is a question for the court.  This is not the only approach that could be taken, but is an approach which is adopted in other countries,^[4] and is one that has been endorsed by the European Court of Human Rights, implicitly in Archie Battersbee’s case, and explicitly in Charlie Gard’s case.

The (temporary) exception in Archie Battersbee’s case is that it initially proceeded on the basis that the real question before the court was whether he was brain-stem dead; however, the Court of Appeal made clear that, given that a brain stem test could not be undertaken so as to enable a diagnosis of death to be made according to the governing professional Code, the first judge should, as a matter of good practice, have gone on to consider Archie’s best interests.   When the case returned to a different judge, Hayden J, the case proceeded on the ‘right’ basis; his decision that continuing life-sustaining treatment was not in Archie’s best interests was upheld by the Court of Appeal and Supreme Court.  An application for a stay of the decision whilst an application was made to and determined by the CRPD Committee was refused by the Court of Appeal and the Supreme Court.

The CRPD: introduction, status before the English courts, and requests for interim measures

We come now to the CRPD, which took a front seat in the last stage of arguments, and about which a number of assertions have been made which require unpicking.

For an extremely helpful outline of the background to the CRPD, and an overview of its provisions, I strongly recommend this (open access) book chapter by Dr Lucy Series.   In summary, however, the CRPD was concluded in 2006 and ratified by the UK in 2009.  The convention seeks to bring about a radical change in the approach adopted in the social, political and legal arenas to those with disabilities (and, indeed, to the very concept of disability).

Although ratified by the UK, the CRPD has not been incorporated into English law in the same way as the European Convention on Human Rights. The obligations that it imposes therefore operate at the state level, rather than (for instance) at the level of the discharge by either public authorities or courts of their respective functions under domestic legislation.    This means, as Supreme Court made clear in 2021, that the Convention cannot be used before English courts in the same way as the ECHR either to construe domestic legislation, or ground arguments that the UK has violated its provisions.^[5]  That does not mean that the CRPD is of no relevance at all before English courts: for instance, courts will often have regard to it as part of the wider canvass when considering the approach to disability – as did Lady Hale in Cheshire West and Chester Council v P; Surrey CC v P [2014] UKSC 1 when emphasising the universal nature of the right to liberty.  But it does mean that – because of a choice made by Parliament, rather than the courts -arguments based upon the CRPD have a very different nature before English courts than do arguments based upon the ECHR.

As noted above, the UK has ratified the Optional Protocol to the CRPD, which means that it recognises (under Article 1) the ‘competence’ (i.e. power) of the Committee on the Rights of Persons with Disabilities – the treaty body overseeing the CRPD – to “receive and consider communications from or on behalf of individuals or groups of individuals subject to its jurisdiction who claim to be victims of a violation by that State Party of the provisions of the Convention.”   Article 5 of the Optional Protocol provides, in turn, for the Committee to examine the communication (if it is admissible) in a closed meeting and to “forward its suggestions and recommendations, if any, to the State Party concerned and to the petitioner.”   The use of this language is deliberate – and deliberately different to language relating (say) to the European Court of Human Rights, which is a court, and can pass judgments which are binding on the state in question.^[6]  The powers of the Committee are therefore, in effect, moral powers, which it can use to place pressure upon a state which has signed the UNCRPD to bring itself into alignment with the Convention.^[7]

The Committee has powers under Article 4(1) of the Optional Protocol to send to the state “for its urgent consideration a request that the State Party take such interim measures as may be necessary to avoid possible irreparable damage to the victim or victims of the alleged violation.”   This is what happened in this case; the Committee also making clear at the same time (as is also made clear under Article 4(2)) that this implied no determination on admissibility or the merits of the application to it.

The third decision of the Court of Appeal (of 1 August 2022) and the second decision of the Supreme Court (of 2 August 2022) both turned, in part, upon precisely what the United Kingdom is required to do when it receives a request under Article 4(1) of the Optional Protocol.   Both the Court of Appeal and the Supreme Court were clear that, given the status of the CRPD in English law, any such request could not (in effect) override the operation of English law.   It is also clear that both were troubled that it appeared that the CRPD Committee’s consideration of the application might be prolonged, the Court of Appeal noting that the Committee requested a reply from the United Kingdom some two months from the date of the letter, and the Supreme Court noting that “to give effect to the application for a stay in the circumstances of this case would be to act unlawfully in conflict with the court’s duty under domestic law to treat Archie’s best interests as paramount as the Committee envisages a procedure for its consideration of the application which will extend into 2023.”

All of this may seem extremely technical; at one level it is.^[8]  It is a matter which the Committee may comment further upon in due course, but it is perhaps relevance (although not noted in any of the judgments in Archie Battersbee’s case) that the Court of Appeal and Supreme Court have taken a similar approach to the French Cour de Cassation (the equivalent of the Supreme Court) in the case of Vincent Lambert, where a request had also been made by the CRPD Committee that life-sustaining treatment not be withdrawn in respect of an adult.   In that case, a lower tier court had held that the French doctors were under an obligation to comply with the request; the Cour de Cassation overturned this decision; life-sustaining treatment was withdrawn.^[9] It appears, at least from materials publicly available, that the Committee never proceeded to a substantive consideration of the application made.   Nor did the Committee make any reference to this case or to the approach taken to life-sustaining treatment decisions in relation to adults in its 2021 Concluding Observations on the initial report of France upon its compliance with the CRPD.

The CRPD and life-sustaining treatment

Moving beyond the technicalities, as important as they are, I suggest that it is very important that those who are commenting upon or campaigning in relation to the case are on thin legal ice in asserting that the Committee on the Rights of Persons with Disabilities (if it ever considers the substantive application) would necessarily conclude that the CRPD requires the continuation of life-sustaining treatment in a situation such as this.  With Annabel Lee, I have written previously about this in the context of decisions about the continuation of life-sustaining treatment in respect of adults who are incapable of making the decision to consent to or refuse such treatment.^[10]  I reproduce the relevant section below.

For present purposes, of greatest importance is to understand that the CRPD Committee asserts (an assertion not universally accepted^[11]) that Article 12 requires states to replace legislation which provides for substitute decision-making for incapacitated adults based ‘on what is believed to be in the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences’.^[12]  The CRPD Committee also contends that the Convention requires that “decisions relating to a person’s physical or mental integrity [i.e. medical treatment] can only be taken with the free and informed consent of the person concerned.”^[13]

 Two further articles of the CRPD are of relevance:

1. Article 10, which provides that “States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others;”

2. Article 25, which provides that “States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall: […] (f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability” (emphasis added).

Given the historic treatment of – and judgments about – disabled people, one might have expected that the CRPD Committee to have expressed clear views about the nature of the right to life and the obligations that follow.   The way in which the Committee has sought to grapple with this issue is, we suggest, revealing.   To date, the Committee has not specifically addressed this question in any of its overarching general comments or guidelines, nor has it referred to Article 25(f) in any of its concluding observations.^[14]  However, in 2011, in its concluding observations on the initial report of Spain on its compliance with the Convention, the Committee:

29. […] regret that guardians representing persons with disabilities deemed “legally incapacitated” may validly consent to termination or withdrawal of medical treatment, nutrition or other life support for those persons. The Committee wishes to remind the State party that the right to life is absolute, and that substitute decision-making in regard to the termination or withdrawal of life-sustaining treatment is inconsistent with this right.

30. The Committee requests the State party to ensure that the informed consent of all persons with disabilities is secured on all matters relating to medical treatment, especially the withdrawal of treatment, nutrition or other life support.

 It is not entirely clear what the Committee meant by asserting that the right to life is absolute.  It might, on one view, be taken as asserting a vitalist^[15]  position that all must be done to save the life of the person, regardless of the cost, effectiveness and physical burden on the patient of the intervention in question.

 The 2011 concluding observations, however, stand alone and at odds with the Committee’s other concluding observations and other reports.  The Committee did not repeat its comments in its concluding observations on Spain’s next reports.  It has scrutinised other states in which withdrawal of life-sustaining treatment is permitted,^[16] and has only commented on one further state, the United Kingdom. In the advance unedited version of its concluding observations^[17], the Committee:

26 [….] observe[d] with concern the substituted decision-making in matters of termination or withdrawal of life-sustaining treatment and care that is inconsistent with the right to life of persons with disabilities as equal and contributing members of society.

27. The Committee recalls that the right to life is absolute from which no derogations are permitted and recommends that the State party adopt a plan of action aimed at eliminating perceptions towards persons with disabilities as not having “a good and decent life”, but rather recognising persons with disabilities as equal persons and part of the diversity of humankind, and ensure access to life-sustaining treatment and/or care.

 However, in the final version,^[18] the Committee made a subtle but important change in its recommendation, dropping the assertion in the first sentence:

 27. The Committee recommends that the State party adopt a plan of action aimed at eliminating perceptions towards persons with disabilities as not having “a good and decent life” and recognizing persons with disabilities as equal to others and part of the diversity of humankind. It also recommends that the State party ensure access to life-sustaining treatment and/or care.

 It is speculation, but it is just possible that this came about as a result of commentary from one of the present authors on the unedited advanced version which noted that the assertion of an absolute right to life took the Committee into some very difficult territory.  In particular, this assertion could be read as requiring treatment to be continued even where this was contrary to the best interpretation of the will and preferences of the person, the standard the Committee consider should govern decision-making where the person is not in a position to make their own decision (even with support).

 Further, the Committee’s own General Comment on Article 12 CRPD (promulgated after the concluding observations in relation to Spain) provides that “[f]or many persons with disabilities, the ability to plan in advance is an important form of support, whereby they can state their will and preferences which should be followed at a time when they may not be in a position to communicate their wishes to others” at paragraph 12.   This simply could not square with the assertion of an absolute right to life in Article 10 if such is intended to mean that there are no circumstances under which life-sustaining treatment could be withdrawn – or, indeed, by the same logic, withheld.  

The reality, we suggest, is that:

1. the Committee do not, in fact, think that the right to life is absolute, if this is to mean that all steps can and must be taken at all times to keep a disabled person alive.^[19] We are reinforced in this view not just by the analysis set out above, but also by the fact that the Committee could not take this position and yet make no reference in their concluding observations upon Belgium to the fact that euthanasia is permitted there, or, in considering the position in Canada, in which euthanasia is also permitted, limited themselves to emphasising that “persons who seek an assisted death have access to alternative courses of action and to a dignified life made possible with appropriate palliative care, disability support, home care and other social measures that support human flourishing;”^[20]

 2. the obligation is, rather, to ensure that individuals are not arbitrarily deprived of their lives, as it is in Article 6 of the International Covenant on Civil and Political Rights to which the CRPD gives effect in the context of disabled people;^[21] and therefore that

 3. even viewed through the prism of the CRPD, the lex specialis of human rights as they relate to disability, there is a balancing act to be undertaken which does not always come down in favour of the preservation of life. As Penelope Weller has observed in the context of Article 25(f), “the CRPD steers a middle path between the argument that everything be done to save the lives of people with disabilities on the one hand, and ‘quality of life’ arguments that see the lives of people with disability as ‘undignified, futile or over-burdensome’ on the other.”^[22]

At the time of writing, the CRPD Committee is considering the case of Vincent Lambert, and, assuming that finds the complaint admissible, it we will have in due course an express set of observations from the Committee concerning his position and, by extension, others in a PDOC being kept alive by artificial means.  In particular, the Committee will have to grapple with precisely what it means to construct the will and preferences of a person in a PDOC – in other words to grapple with precisely the same dilemma as confronted Mr Justice Charles in Briggs v Briggs (No 2).   We would suggest that the calibrated approach taken in that case represents – albeit in different statutory language – exactly the approach mandated by the CRPD.  The CRPD undoubtedly suggests an expansive view must be taken of a person’s ability to communicate their will and preferences – not limited by considerations of whether they have or lack capacity to do so – but English case-law equally adopts the same perspective.^[23]  There will undoubtedly be difficult cases in which what it is unclear whether the person in a PDOC is communicating a reliable set of will and preferences (or a set of preferences to be set against their will, if ‘will’ is taken to be something more stable and enduring than ‘preferences’^[24]) or whether they are, in fact, not communicating anything at all.   But what the CRPD – as interpreted by the Committee – requires is no more than (but no less than) the “best interpretation” of the person’s will and preferences, which ultimately requires an evaluative judgment.  Where that interpretation is that the person does not wish treatment to be continued, then (assuming that sufficient safeguards are in place) that interpretation should be taken as representing the exercise of their legal capacity to refuse, even if the consequence is their death. 

We therefore suggest that the CRPD confirms that:

1. it can never be correct to make the decision to withdraw (or indeed withhold) life-sustaining treatment on the basis of generalised assumptions about the quality of life enjoyed by disabled people as a whole.

2. as is already required in England & Wales in decisions about life-sustaining treatment, the intense focus must be upon the “will and preferences” of the individual person in question.  

Since this article was published, further concluding observations have been published by the CRPD Committee, including upon France (in 2021) where no comment was made upon the Lambert case and Switzerland (in 2022) where no mention was made of the approach taken in that country to medical assistance in dying.   There is therefore nothing to suggest that the CRPD Committee’s approach has changed.

Although the record of the arguments advanced on behalf of Archie Battersbee’s parents appeared to rely upon the approach to adults,^[25] it is, of course, important to recognise that this case concerns a child.   Disabled children equally benefit from the provisions of Article 10 CRPD.   However, the CRPD Committee has never to my knowledge made any suggestion that a process of individualised, focused, decision-making which might lead to withdrawal of life-sustaining treatment from a child is contrary to the provisions of the Convention.^[26]   In its recent (March 2022) joint statement with the Committee on the Rights of Children, the CRPD Committee was silent as to this issue.   Importantly, however, both Committees urged (at paragraph 4):

the States parties to apply the concept of the “best interests of the child” contained in article 3 of the CRC and 7 of the CRPD to children with disabilities with a careful consideration of their evolving capacities, their circumstances and in a manner that ensures children with disabilities are informed, consulted and have a say in every decision-making process related to their situation.^[27]

It bears emphasis, and consideration by those commenting upon the case, that best interests is precisely the test followed by the courts in England & Wales in determining these agonising cases.    The CRPD does not, it should perhaps further be added, dictate that only a parent can determine where the child’s best interests lie: rather, and as reinforced in the joint statement, it dictates an individualised focus on the interests of the child.   In light of the analysis of Article 10 CRPD above, showing how it does not afford an ‘absolute’ right to life, I would suggest that it is clear that the focus, in cases such as this, must be on whether life-sustaining treatment is in the child’s best interests: a question which must, on a proper analysis, afford the potential answer that it is not.

Conclusion

This case may have raised the profile of the CRPD, and also of its current relatively limited place in the law in England and Wales, which may feed into what is ultimately a decision for Parliament as to whether to ‘domesticate’ it.  It may also reinforce calls for an inquiry into whether mediation might provide a better framework for the resolution of disputes than the involvement of the courts (although for my part, and whilst being a huge fan of mediation, I must confess to reservations as to whether it can be suitable in all cases).

As I set out at the outset, I do not comment upon – because I cannot begin to contemplate – the impact of this case upon all those involved.  But I hope that what I have set out above helps place the decision in its wider context, and enables people to have a more informed understanding of what the CRPD adds (or does not add) to the framework within which such decisions are made.

______________________

^[1] In doing so, the European Court of Human Rights also – and perhaps strikingly – noted that its decision “did not constitute an acknowledgement by the Court that it, either in fact or in law, had jurisdiction to hear the case under Article 35 § 2 (b) of the Convention (which provides that the Court shall not deal with any application that is substantially the same as a matter that has already been submitted to another procedure of international investigation or settlement)” – in other words, leaving open the possibility that it might have declined to hear the application because an application had already been made to the CRPD Committee.

^[2] This is not available on the UNCRPD website, but the text is contained at paragraph 8 of the decision of the Court of Appeal of 1 August 2022.

[3] For a fuller summary of the position up to the second decision of the Court of Appeal, see the Wider Context section of the July 2022 39 Essex Court of Protection Mental Capacity Report.

[4] For a survey of the comparative position, see this article by Cressida Auckland and Imogen Goold.

^[5] See A Local Authority v JB [2021] UKSC 52, applying the approach to the UN Convention on the Rights of Children (another unincorporated convention) in R (SC, CB and 8 children) v Secretary of State for Work and Pensions and others [2021] UKSC 26.

^[6] I am ignoring for present purposes the British Bill of Rights Bill currently before Parliament which may seek to alter the status of such judgments within the United Kingdom (although it could not do so as between the United Kingdom and the European Court of Human Rights).

^[7] For more on the status of the Committee, including in relation to the ‘General Comments’ that it issues to set out its interpretation of the CRPD, see Essex Autonomy Project (2014) Achieving CRPD Compliance: Is the Mental Capacity Act of England and Wales compatible with the United Nations Convention on the Rights of Persons with Disabilities? If Not, What Next?, and (2017) Three Jurisdictions Report: Towards Compliance with CRPD Art. 12 in Capacity/Incapacity Legislation across the UK.

^[8] One technicality is the difference between requests under the Optional Protocol and the indication of interim measures under Rule 39 of the rules of court of the European Court of Human Rights, as happened in Charlie Gard’s case.

[9] For a discussion of this case, and also of the status of requests for interim measures under the Optional Protocol to the CRPD, see this article (in French) by Paul Véron and Marie Baudel.

[10] Withdrawing life-sustaining treatment: a stock-take of the legal and ethical position. 2019 Journal of Medical Ethics, 45(12), 794-799.

^[11] The most accessible guides to this issue can be found in the work of the Essex Autonomy Project, available at https://autonomy.essex.ac.uk/crpd/.

^[12] Committee on the Rights of Persons with Disabilities, ‘General Comment on Article 12: Equal Recognition before the law’ (CRPD/C/GC/1, adopted 11 April 2014), paragraph 27.

^[13] Committee on the Rights of Persons with Disabilities, ‘General Comment on Article 12: Equal Recognition before the law’ (CRPD/C/GC/1, adopted 11 April 2014), para 42, referring to the interaction of Article 12 with Article 17 (the right to personal integrity).

^[14] This issue has also been the subject of surprisingly little commentary, barely being touched upon in the most comprehensive commentary: Bantekas, I. et al. The Convention on the Rights of Persons with Disabilities: A Commentary. Oxford Commentaries on International Law: Oxford, Oxford University Press 2018.

[15] This is sometimes linked to Catholic teaching, but is not necessarily driven by a religious perspective.   For a useful discussion of the evolving Catholic position, see: Zientek DM. Artificial nutrition and hydration in Catholic healthcare: balancing tradition, recent teaching, and law. InHEC forum 2013 Jun 1; 25(2);145-159.

[16] Including, amongst others, Australia, Denmark, Germany and Sweden.  See, for a comparative review of different jurisdictions (including discussion of when recourse to court is required)[11].

[17] Although not available on the UN website, it can be found at https://mhj.org.uk/wp-content/uploads/sites/192/2017/09/Concluding-Observations-CRPD-Committee-UK.pdf

^[18] CRPD/C/GBR/CO/1 (3 October 2017).

^[19] For a detailed discussion of the use of the term ‘absolute’ by the CRPD Committee in other contexts, see Martin W, Gurbai S. Surveying the Geneva impasse: Coercive care and human rights. International Journal of Law and Psychiatry. 2019 May 1;64:117-28.

^[20] CRPD/C/CAN/CO/1 (8 May 2017), para  24(a).

^[21] See also the UN Human Rights Committee’s General Comment 36 on Article 6, CCPR/C/GC/36.

^[22] In her commentary on Article 10 in Bantekas, I. et al. The Convention on the Rights of Persons with Disabilities: A Commentary. Oxford Commentaries on International Law: Oxford, Oxford University Press 2018, at page 733.

^[23] See, for instance (in the context of termination) the decision of the Court of Appeal in Re AB (Termination of Pregnancy) [2019] EWCA Civ 1215.

^[24] Szmukler, G. “Capacity”,“best interests”,“will and preferences” and the UN Convention on the Rights of Persons with Disabilities. World Psychiatry 2019 January 18(1): 34-41.

[25] See paragraph 26(iv) of the second judgment of the Court of Appeal:

The parents’ counsel’s submission is that ‘a decision to remove [life sustaining treatment] from someone who previously had capacity, can only be made on the basis of the person’s will and preferences and failing this then according to the “best interpretation of will and preferences”‘. These submissions, in the context of a person who is so disabled that they have no free-standing capacity for life without artificial and intensive medical intervention, appear to stretch the parameters of this convention beyond its intended boundaries. Be that as it may, it is clear from paragraphs 39 and 45 of Aintree and elsewhere that the approach in domestic law does afford due respect to wishes and feelings in a manner that would be compatible with the principles of CRPD, Arts 10 and 12.

^[26] For the sake of completeness, I note that in its 2018 concluding observations on Oman, the Committee made clear its concern about reports of the “cultural practices of ‘compassionate killing’ and ‘honour killing,’ especially as they relate to children with disabilities who may be killed by their mothers.”  However, and not least given the position of Archie Battersbee’s mother, it would be difficult to equate this observation with his case.

^[27] The CRPD Committee are strongly opposed to reliance upon this context in relation to adults, but the term appears in Article 7 of the CRPD, which requires that “in all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.”