Terminally ill adolescents and assisted death

The Terminally Ill Adults (End of Life) Bill has been described by many as one of the most significant shifts in the legal landscape of England and Wales in our generation. Whether this claim overstates the matter is open to debate. What is not in dispute, however, is that the Bill raises profound questions about the relationship between the state and those it governs. Unsurprisingly, its existence, proposals, and suggested amendments have generated extensive discussion and controversy. In this blog series, leading voices in the field of assisted dying reflect on the Bill, what it means for the state to sanction the deliberate and knowing ending of an individual’s life, and how we might tread a path forward.

Isra Black, University College London

Keywords: assisted dying; assisted death; physician assisted suicide; children; adolescents

The Terminally Ill Adults (End of Life) Bill does what it says on the tin insofar as it restricts access to physician-assisted death (by way of supply of lethal medication for self-administration) in England and Wales to adults who are terminally ill. Should the Bill become law, provision of assistance to die to minors—in this jurisdiction, individuals not yet 18 years of age—will remain unlawful.

In Parliament, the Bill’s restriction of assisted death to adults has elicited little debate. Though in the House of Lords, Baroness Berger’s Amendment 4 to raise the floor for access to individuals aged at least 25 years received discussion at length.

In this post, I sketch the case for permitting minors who otherwise meet the Bill’s substantive eligibility criteria (decision-making capacity, terminal illness, residence, GP registration, and a voluntary, clear, settled and informed wish to end their own life) access to assisted death. In most cases, such minors will be in adolescence, and so this stage of life is/these individuals are my focus. I argue that a) a terminally ill adolescent may have the decision-capacity to make a decision to end their own life; and b) special concern for adolescents need not require placing assisted death entirely outwith the scope of their decision-making.

Adolescent capacity and assisted death

Let us stipulate that a decision to end one’s own life with the assistance of medical means is either a decision about medical treatment or sufficiently like such a decision that: a) we can draw inferences from the literature on adolescent decision-making in health care to the context of assisted death; and b) for minors aged 15 years or younger, the Gillick capacity test would govern decisions in respect of assisted death.[1] At present, the approach to capacity in the Terminally Ill Adults Bill is to import the Mental Capacity Act 2005 test, which governs the capacity of 16 and 17-year-olds when the Act applies.

The literature on adolescent decision-making in health care shows that some minors acquire decision-making capacity well ahead of the age of majority. A systematic review by Giovanna Parmigiani et al (2025) of minors’ decision-making capacity in a variety of clinical settings ‘revealed consistent findings, suggesting that a subset of minors may demonstrate good decision-making capacity… [and] that minors over the age of 13 may show an acceptable decisional capacity’. In respect of adolescent decision-making more generally, Grace Icenogle and Elizabeth Cauffman (2021) observe that:

By around 15–16 years old, youth have the requisite cognitive capacities to rationally and thoughtfully deliberate in ways indistinguishable from adults in decision-making contexts where deliberation is enabled.

If the empirical evidence reads across to the context of assisted death, it supports the view that many adolescents would have the capacity—on the Gillick or MCA 2005 tests, respectively—to decide whether to end their own lives with medical assistance/means. Or at least possess decision-making capacity on a par with adults in this regard. (As a conceptual matter, the standard approach to evaluating the value of death—the deprivation account—aligns with how we compare the value of alternative courses of action for agents who are alive. To wit, the approach to decision-making capacity ought to be the same.)

Of course, Icenogle and Cauffman’s qualification regarding decision-making context is important. As the authors note:

[Enabling deliberative contexts] lack pressure to decide quickly and without immediate (proximal) external influences (e.g., friends or persuasive adults), which may discourage thoughtful consideration of choices as they relate to the individual’s values and long-term goals, or involve explicit encouragement by others to be deliberate (e.g., a medical or legal professional advising a patient or client to take his time).

A feature of permissive legal regimes for assisted death in general (see eg the Netherlands, Belgium, or Victoria), and of the Terminally Ill Adults Bill in particular, is the enactment of a procedural framework that seeks to ensure appropriate deliberative conditions for individuals considering ending their own lives with assistance. Thus, clause 1(2) of the Bill refers to the clauses 8-30, which:

… in particular, require steps to be taken to establish that the person—

(a) has a clear, settled and informed wish to end their own life, and

(b) has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it

As Nataly Papadopoulou, Liz Wicks, and I note elsewhere (forthcoming, JDSAM nº46, 2026):

The Bill’s procedural regime involves a sequence of requests for assistance to die, medical and panel assessments, and reflection periods… [comprising] a minimum of nine distinct procedural stages (each inclusive of discrete procedural elements).

It is an open question whether the Bill’s procedure-heavy regime strikes the appropriate balance between safety and access (Black, 2025; Papadopoulou, Wicks, Black, 2026; Martin, 2026). But it is not credible to assert that the Bill as drafted fails to give individuals requesting assisted death time to reflect on their decision, or that it fails to prompt requestors to reflect on the considered and enduring nature of their wish to die, or that it fails to offer iterative opportunities for scrutiny of the degree of decision-making influence exerted by others.

Given the irreversibility of death, we rightly worry about the deliberated quality of individual’s decisions to end their own lives. The Terminally Ill Adults Bill does not shy away from this concern and, in so doing, addresses the matters that trouble us about adolescent decision-making capacity: whether the agent has time, space, and support to engage in considered, values-engaged reflection about what to do. I suggest that the Bill provides a framework in which we might be confident in the capacity of terminally ill minors vis-à-vis assisted death, and that their exclusion lacks justification.

As I shall elaborate, however, accepting that terminally ill adolescents may have the capacity to decide about assisted death and bringing them within the scope of legislation would not commit us to abandoning them to exercise their agency vis-à-vis assisted death alone.

The prudential good of shielding and adolescent assisted death

In the House of Lords, Baroness Berger’s argument for raising the age-related eligibility criterion for assisted death to 25 years was that:

It is by this point that the brain is more fully developed and decision-making capabilities are more secure. In general, the brain does not finish developing until a person is in their mid-20s, which is particularly the case for the prefrontal cortex, which governs our decision-making functions and our ability to think flexibly about potential outcomes.

While Baroness Berger’s claims about brain development are true, it does not follow that we ought entirely to restrict the scope of adolescent (and indeed young adult) decision-making vis-à-vis assisted death. As I noted above, the evidence suggests that many adolescents acquire the requisite cognitive skills well before formal adulthood; thus, what seems required is a procedural framework that facilitates deliberation, mitigates risk, and provides an environment in which adolescents  deploy their developing self-regulatory capacities effectively (Icenogle and Cauffman, 2021). This is an issue of political equality: Baroness Berger’s proposal treats adolescents and young adults differentially on grounds of alleged shortcomings in agency, when said deficits are remediable with appropriate institutional support.

Of course, agency is not all that matters, and we might worry that terminally ill adolescents may possess decision-making capacity, legally speaking, yet fail to make substantively good decisions in respect of assisted death.

In England and Wales, for high stakes medical decisions—such as refusals of life-prolonging treatment—competent adolescents share the normative power to decide with adults and the court; parents or the court may override an adolescent’s decision when it poses a significant threat to the latter’s well-being (Re R [1992] Fam 11; Re W [1993] Fam 64). Anthony Skelton, Lisa Forsberg, and I (2021, 2025) have sought to justify concurrent decision-making powers by reference to the distinctive prudential goods comprising the well-being of adolescents, in particular, ‘shielding’:

the non-instrumental prudential good of being protected from the full effect of one’s decisions or possessing a variety of freedom from making certain kinds of decisions in the absence of a safety net.

Shielding might provide grounds to add a safety net to terminally ill adolescents’ decisions about assisted death. I take it that this would be asymmetrical in nature—adolescent requests for assisted death would be subject to routine substantive review, while no third party would have the power to request assisted death on an adolescent’s behalf.

Plausible as the suggestion is, the Terminally Ill Adults Bill already provides for extensive review of requests for assisted death. The procedural framework for assisted death under the Bill is not merely procedural; it provides for iterative substantive evaluation of whether the eligibility criteria for assisted death are met, including whether the person requesting assistance to die has a ‘clear, settled, and informed wish to end their own life’. As well as multiple layers of physician review, clause 17 of the Bill provides for scrutiny of requests by a multidisciplinary panel to ensure the eligibility criteria are met, including mandatory live proceedings. Thus, we might say that something like shielding underpins the Bill’s institutional design. Individuals requesting assisted death cannot ‘self-certify’, and requests may fail at various stages if review parties lack confidence that the eligibility criteria are met.

It might be argued that review as envisaged in the Bill fails to go far enough, if we are to expand the scope of assisted death to adolescents. Rather, in addition to or as an alternative to panel review, we might require referral to the Family Division for a welfare determination under the Children Act 1989. Some might worry about the optics of such proceedings—that they ask for a determination that it is in a minor’s ‘best interests’ to die. Optics matter, but this characterisation misrepresents the doctrinal position; the question is whether, by reference to the minor’s well-being, an intervention is appropriate to provide (Re J [1991] Fam 33).

While routine court involvement might signal the special concern we have for adolescents, I question what else formal legal proceedings would add to the scrutiny of adolescent requests for assisted death. We should be mindful that, in the typical context of adolescent medical decision-making, the sharing of normative powers and proceedings to consider overriding the decision of a minor with capacity are in part justified by the expectation that with treatment, the minor in question might live a life of normative duration. Terminally ill adolescents made eligible for assisted death under an amended Bill would occupy a different position: their life expectancy being six months or less. We should be wary of imposing processes or outcomes on adolescents at the end of their lives under the guise of shielding, when refusal to extend access to assisted death to adolescents or its extension under burdensome review is in fact attributable to adults’ failure to acknowledge that minors ought not always be treated as mere children.

Notes

[1] I hedge a little because recent scholarship has sought to establish assisted death as an ‘existential’ rather than ‘medical’ matter, which one might take to limit the relevance of the adolescent health care decision-making literature, and indeed the applicability of Gillick. I respectfully demur, but that is another conversation.