More Than Compliance: Listening to Children with Type  1 Diabetes in Medical Law

Abstract

This article examines the complex legal and ethical question of whether children should be  permitted to refuse medical treatment, with a specific focus on children living with type 1  diabetes. Drawing on UK case law, statutory provisions, and peer-reviewed literature, it  examines the balance between autonomy and best interests, particularly where refusal may  lead to life-threatening consequences. Case studies and experiences of diabetic children are  used to illustrate the tensions between respecting young patients’ choices and ensuring their  welfare. The analysis culminates in recommendations for developing nuanced, child-centric  legal approaches.

Introduction

Imagine being a ten-year-old child, trying to process the implications of a chronic diagnosis  that demands absolute vigilance. Your day begins not with cartoons or carefree play, but with  needles, blood checks, carbohydrate calculations, and contingency plans for hypoglycaemic  emergencies. This is the reality for thousands of children living with type 1 diabetes, a reality  where the concept of medical treatment is not abstract, but personal, continuous, and often  overwhelming.

Children with type 1 diabetes are not just patients; they are active participants in their  healthcare from an early age. They learn quickly to understand their bodies, anticipate  symptoms, and often educate others around them. Yet when it comes to decisions about their  treatment, particularly decisions to refuse, it is their voice that is most easily dismissed.  Clinicians and courts invoke protection, acting in the name of ‘best interests,’ but where does  that leave the child whose refusal signals psychological burnout, fear, or simply the need to  be heard?

This article examines whether children, particularly those managing type 1 diabetes, should  be allowed to refuse medical treatment, and how the law navigates the delicate terrain  between autonomy and protection. It asks what it truly means to act in a child’s best interests  and whether the refusal of care can ever be a rational, valid expression of agency. Drawing on  UK legal standards, such as Gillick and Re W, as well as peer-reviewed research and lived  experiences, this article confronts the challenges posed by chronic illness in young people.

It argues for a more nuanced legal approach, one that listens with compassion, weighs context  carefully, and ultimately respects children as capable contributors to decisions about their  bodies.

The following sections will explore the legal foundations of consent and refusal in child  healthcare, analyse judicial reasoning in key cases, and incorporate the lived experiences of  children with type 1 diabetes. By reframing refusal not as defiance but as a form of dialogue,  we can begin to build a legal culture that is not only protective but also empowering.

Background

The legal and ethical landscape surrounding children’s refusal of medical treatment is shaped  by a delicate interplay between autonomy, protection, and the evolving recognition of  children’s rights. In English law, children under 16 may consent to treatment if deemed  Gillick competent, a standard established in Gillick v West Norfolk and Wisbech AHA [1986]  AC 112 (HL), which recognises a child’s ability to understand and appreciate the  implications of medical decisions.¹ However, the right to refuse treatment is not equally  protected. Courts have consistently prioritised the child’s welfare, often overriding refusals in  life-threatening situations, as seen in Re W (A Minor) (Medical Treatment: Court’s  Jurisdiction) [1992] 4 All ER 627 (CA)²and Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386.³ This legal asymmetry reflects a paternalistic approach that, while  protective, can silence the voices of children who live with chronic conditions like type 1  diabetes. These children often develop a sophisticated understanding of their health, yet their  refusals, whether rooted in emotional fatigue, fear, or a desire for agency, are frequently  dismissed. The Children Act 1989, s 3(1), and the Family Law Reform Act 1969, s 8, provide  frameworks for parental responsibility and consent, but they do not resolve the tension  between safeguarding and respecting autonomy.⁴International instruments, like the UN  Convention on the Rights of the Child, particularly Article 12, advocate for children’s  participation in decisions affecting them, urging a shift from passive protection to active  engagement.⁵In the context of type 1 diabetes, where treatment is relentless and refusal may signal deeper psychological distress, the law must grapple with more than clinical outcomes; it must confront the lived reality of children who are not just patients, but people.

Main Body

Understanding Refusal in the Context of Type 1 Diabetes

Children diagnosed with type 1 diabetes often become intimately familiar with their condition  from a young age. Unlike acute illnesses, diabetes demands constant vigilance, daily insulin  injections, blood glucose monitoring, dietary restrictions, and emergency preparedness. This  relentless routine can lead to emotional fatigue, burnout, and a desire for autonomy. Studies  show that adolescents with type 1 diabetes frequently express frustration with the rigidity of  their treatment plans, and some begin to resist aspects of their care, including insulin  administration.⁶ Such refusals are not necessarily irrational; they may reflect a child’s attempt  to assert control over their body and life, especially when they feel overwhelmed or unheard. In University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC  1670 (Fam), the court confronted the harrowing reality of a 16-year-old girl with type 1  diabetes who refused insulin therapy despite developing life-threatening diabetic ketoacidosis  (DKA). B had a history of non-compliance and expressed a clear wish to die, yet she  demonstrated full understanding of her condition and the fatal consequences of refusing  treatment. Clinicians confirmed her capacity under Gillick, but her refusal was overridden by  the court, which authorised intravenous insulin and fluids without her consent. Mr Justice  MacDonald acknowledged the gravity of B’s wishes and the emotional complexity of her  situation but ultimately ruled that the law permits intervention when a competent minor’s  welfare is at serious risk.⁷ This case starkly illustrates the legal asymmetry between consent  and refusal: even when a child is deemed competent, their refusal may be set aside in favour  of preserving life. For children with type 1 diabetes, whose refusals may stem from  psychological exhaustion rather than defiance, the ruling raises profound questions about  autonomy, agency, and the limits of legal protection.

Legal Balancing: Autonomy Versus Best Interests

In the Matter of C (A Child) [2024] EWHC 3331 (Fam), the court was asked to determine  whether a 14-year-old girl, diagnosed with a chronic autoimmune condition, could refuse a  proposed course of immunosuppressive therapy. C had expressed clear and sustained  opposition to the treatment, citing both physical discomfort and emotional distress, and had  demonstrated a sophisticated understanding of the risks involved. Her clinicians  acknowledged her capacity under Gillick yet remained concerned about the long-term  consequences of non-treatment. Mr Justice Peel, while recognising C’s maturity and the  sincerity of her views, ultimately authorised the treatment, emphasising that the court’s duty  was to act in her best interests.⁸ The judgment acknowledged the emotional toll of chronic  illness and the importance of listening to children, but reaffirmed that competence alone does  not guarantee the right to refuse. For children managing lifelong conditions like type 1  diabetes, this case reinforces the legal reality that refusal, even when informed and heartfelt, may be overridden if the perceived risk to life or health is deemed too great.

Lived Experiences and the Case for Listening

Narratives from children and families affected by type 1 diabetes reveal a recurring theme:  the desire to be heard. Many children report feeling excluded from decisions about their care,  even when they are capable of contributing meaningfully.⁹ Advocacy groups like Diabetes  UK emphasise the importance of involving children in treatment planning, not only to respect  their rights but to improve compliance and outcomes.¹⁰ The UN Convention on the Rights of  the Child, particularly Article 12, supports this participatory approach, affirming that children  have the right to express their views in all matters affecting them.¹¹

Yet, the law remains cautious. In Re X (A Child) (No 2) [2021] EWHC 65 (Fam), a 15-year old Jehovah’s Witness with sickle cell disease sought to refuse blood transfusions. Despite  being Gillick competent, her refusal was overridden.¹² The court reaffirmed that neither  Gillick competence nor age 16 confers an absolute right to refuse treatment. While the  judgment acknowledged the child’s religious beliefs and emotional maturity, it ultimately  prioritised her best interests, defined narrowly as survival.

Counterarguments and Ethical Complexity

Critics argue that overriding a competent child’s refusal undermines their autonomy and may  cause psychological harm. Forced treatment, especially in chronic conditions like diabetes,  can erode trust and lead to disengagement from care.¹³ Moreover, if a child is deemed  competent to consent, it seems inconsistent to deny them the right to refuse. As Harris notes,  “to be competent to consent implies competence to refuse.”¹⁴ This inconsistency suggests that  the law may be more concerned with outcomes than principles, a stance that warrants  scrutiny.

However, the stakes are undeniably high. Allowing refusal in cases where non-treatment  could result in death or irreversible harm places a heavy burden on the child, the family, and  the healthcare system. The law’s protective stance reflects society’s duty to safeguard  vulnerable individuals, even at the cost of limiting their autonomy. In practice, courts rarely  override refusals for routine treatments, but they intervene decisively when life is at risk.

Discussion

The legal framework governing children’s refusal of medical treatment is marked by a  persistent tension between paternalistic protection and the growing recognition of children’s  autonomy. Courts have long operated under the assumption that safeguarding life must take  precedence, especially when refusal could result in death or irreversible harm.¹⁵ Yet this  approach, while well-intentioned, often fails to account for the nuanced realities of children  living with chronic conditions like type 1 diabetes, children who are not merely recipients of  care, but active participants in their survival.¹⁶

For these children, refusal is rarely a simple rejection of treatment. It may be a cry for help, a  signal of emotional exhaustion, or a plea for agency in a world that demands constant  compliance. The law’s tendency to override such refusals, even when the child is deemed  competent, risks silencing voices that have already learned to speak with remarkable clarity  and courage. 

This disconnect reveals a systemic flaw: the legal system often treats refusal as defiance  rather than dialogue. It assumes irrationality where there may be insight and imposes uniform  solutions on deeply personal struggles. In cases involving children with type 1 diabetes,  courts have similarly prioritised survival over autonomy, even when the child demonstrates a  clear understanding of the consequences. 

In University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC  1670 (Fam), the court authorised intravenous insulin for a 16-year-old girl in diabetic  ketoacidosis, despite her explicit refusal and her Gillick competence.¹⁷ B had expressed a  wish to die and understood the fatal implications of refusing treatment, yet the court ruled  that her welfare demanded intervention. Likewise, in In the Matter of C (A Child) [2024]  EWHC 3331 (Fam), a 14-year-old girl with a chronic autoimmune condition refused  immunosuppressive therapy, citing emotional distress and long-term fatigue.¹⁸ Although she  was deemed competent and her views were sincere, the court authorised treatment,  reaffirming that competence does not guarantee the right to refuse. These cases reflect the  legal asymmetry between consent and refusal: children may be empowered to say “yes,” but  their “no” is often overridden. For children with type 1 diabetes, whose refusals may stem  from psychological exhaustion rather than defiance, such rulings raise profound questions  about dignity, agency, and the emotional cost of protection.

Children with type 1 diabetes face a unique burden. Their condition demands constant  vigilance, and their refusals, skipping insulin, avoiding blood tests, often stem from  psychological fatigue rather than medical ignorance.¹⁹ Studies show that these children  frequently feel excluded from decisions, even when they are capable of contributing  meaningfully.²⁰ Advocacy groups like Diabetes UK emphasise the importance of involving  children in treatment planning, not only to respect their rights but to improve compliance and  outcomes.²¹ The UN Convention on the Rights of the Child, particularly Article 12, supports  this participatory approach, affirming that children have the right to express their views in all  matters affecting them.²²

Yet, the law remains cautious. While Gillick established that children under 16 can consent to  treatment if they demonstrate sufficient understanding, it did not grant an equal right to  refuse.²³ Courts have repeatedly held that refusal can be overridden if it endangers life, even  for children aged 16 or 17.²⁴ This asymmetry, the right to say “yes” but not “no”, reflects a  legal culture more concerned with outcomes than principles. As Harris argues, “to be  competent to consent implies competence to refuse.”²⁵

A more compassionate and context-sensitive model is urgently needed. This would involve  assessing not just chronological age or clinical risk, but emotional maturity, support  networks, and the underlying motivations behind refusal. It would require interdisciplinary  collaboration, involving paediatricians, psychologists, legal advocates, and, crucially, the  child themselves.²⁶ As the UN Convention affirms, children have the right to be heard in all  matters affecting them.

Legal reform should reflect this ethos. Statutory provisions must be updated to address  refusals in chronic care settings, where the risks are cumulative rather than immediate. Courts  should be guided by frameworks that mandate the inclusion of children’s views in care  planning, and clinicians should be trained to interpret refusal not as opposition but as an  opportunity for engagement.²⁷ Such reforms would bring domestic law into closer alignment  with international rights standards and foster a more ethically sound practice, one that  protects life without extinguishing voice.

Ultimately, the question is not whether children should be allowed to refuse treatment, but  how we listen when they do. In the words of a young diabetic advocate: “I’m not asking to be  left alone. I’m asking to be part of the conversation.”²⁸

Conclusion

Children with type 1 diabetes do not simply live with a diagnosis; they live with a daily  negotiation between survival and selfhood. Their routines are shaped by needles, alarms, and  calculations, but their identities are shaped by resilience, insight, and the quiet courage of  growing up under constant scrutiny. When such children say “no” to treatment, it is not  always a rejection of care; it may be a plea to be seen, to be heard, to be understood beyond  their blood sugar levels.

The legal system, in its pursuit of protection, must not lose sight of the person behind the  patient. One-size-fits-all doctrines, however well-meaning, risk flattening the rich complexity  of a child’s lived experiences. Courts rightly prioritise life in emergencies, but life is not  merely the absence of death; it is the presence of dignity, agency, and voice. To override a  child’s refusal without listening to the story behind it is to treat the symptom, not the soul. Allowing children limited rights to refuse treatment, with safeguards, support, and  compassion, is not a threat to their welfare. It is a recognition of their humanity. It fosters  trust between young patients and their caregivers, encourages honest dialogue, and may lead  to better long-term health outcomes. More importantly, it affirms that children, even in their  vulnerability, are capable of wisdom.

In the end, the question is not whether we can protect children from harm, but whether we  can protect their right to be heard, even when what they say challenges us. The law must  evolve not just to save lives, but to honour them.

Bibliography (OSCOLA-Formatted)

Case Law

• Gillick v West Norfolk and Wisbech AHA [1986] AC 112 (HL)
• In the Matter of C (A Child) [2024] EWHC 3331 (Fam)
• Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386
• Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1992] 4 All ER 627 (CA) • Re X (A Child) (No 2): An NHS Trust v X [2021] EWHC 65 (Fam)
• University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC 1670 (Fam)

Legislation and International Instruments

• Children Act 1989, s 3(1)
• Family Law Reform Act 1969, s 8
• UN Committee on the Rights of the Child, General Comment No 12: The Right of the Child to be Heard (2009) UN Doc CRC/C/GC/12

Books and Chapters

• Goold I and Herring J, Great Debates in Medical Law and Ethics (3rd edn, Macmillan 2018)
• Harris J, ‘Is consent to treatment enough?’ in Goold I and Herring J (eds), Great Debates in Medical Law and Ethics (3rd edn, Macmillan 2018)
• Herring J, Medical Law and Ethics (8th edn, OUP 2022)

Journal Articles

• Kimbell B et al, ‘Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence’ (2021) 21 BMC Pediatrics 160
• Roper SO et al, ‘Adolescent perspectives on living with type 1 diabetes’ (2021) 18(1) Journal of Pediatric Psychology 110–118
• Simpson S et al, ‘A systematic review of parents’ experiences of raising a child with type 1 diabetes’ (2021) 21(1) British Journal of Diabetes 35–45

Websites and Advocacy Publications

• Diabetes UK, ‘Children’s rights and involvement in diabetes care’ (2022) https://www.diabetes.org.uk
• Diabetes UK, ‘Children’s voices in care planning’ (2022)
• NHS, ‘Consent to treatment – Children and young people’ (2022) https://www.nhs.uk

¹ Gillick v West Norfolk and Wisbech AHA [1986] AC 112 (HL).

² Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1992] 4 All ER 627 (CA). ³ Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386.

⁴ Children Act 1989, s 3(1); Family Law Reform Act 1969, s 8.

⁵ UN Committee on the Rights of the Child, General Comment No 12: The Right of the Child to be Heard (2009) UN Doc CRC/C/GC/12.

⁶ Roper SO et al, ‘Adolescent perspectives on living with type 1 diabetes’ (2021) 18(1) Journal of Pediatric  Psychology 110–118.

⁷ University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC 1670 (Fam).

⁸In the Matter of C (A Child) [2024] EWHC 3331 (Fam).

⁹ Diabetes UK, ‘Children’s rights and involvement in diabetes care’ (2022) www.diabetes.org.uk ¹⁰ UN Committee on the Rights of the Child, General Comment No 12: The Right of the Child to be Heard (2009) UN Doc CRC/C/GC/12.

¹¹ Re X (A Child) (No 2): An NHS Trust v X [2021] EWHC 65 (Fam)

¹² Goold I and Herring J, Great Debates in Medical Law and Ethics (3rd edn, Macmillan 2018).

¹³ Kimbell B et al, ‘Parents’ experiences of caring for a young child with type 1 diabetes: a systematic  review and synthesis of qualitative evidence’ (2021) 21 BMC Pediatrics 160

¹⁴ Harris J, ‘Is consent to treatment enough?’ in Goold I and Herring J (eds), Great Debates in Medical Law  and Ethics (3rd edn, Macmillan 2018).

¹⁵ Re W (A Minor) (Medical Treatment: Court’s Jurisdiction) [1992] 4 All ER 627 (CA).

¹⁶ Roper SO et al, ‘Adolescent perspectives on living with type 1 diabetes’ (2021) 18(1) Journal of Pediatric  Psychology 110–118.

¹⁷ University Hospitals Plymouth NHS Trust v B (Urgent Medical Treatment) [2019] EWHC 1670 (Fam). ¹⁸ In the Matter of C (A Child) [2024] EWHC 3331 (Fam).

¹⁹ NHS, ‘Consent to treatment – Children and young people’ (2022) [1].

²⁰ Simpson S et al, ‘A systematic review of parents’ experiences of raising a child with type 1 diabetes’  (2021) 21(1) British Journal of Diabetes 35–45.

²¹ Diabetes UK, ‘Children’s rights and involvement in diabetes care’ (2022) [7].

²² UN Committee on the Rights of the Child, General Comment No 12: The Right of the Child to be Heard (2009) UN Doc CRC/C/GC/12.

²³ Gillick v West Norfolk and Wisbech AHA [1986] AC 112 (HL).

²⁴ Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 386.

²⁵ Harris J, ‘Is consent to treatment enough?’ in Goold I and Herring J (eds), Great Debates in Medical Law  and Ethics (3rd edn, Macmillan 2018).

²⁶ Goold I and Herring J, Great Debates in Medical Law and Ethics (3rd edn, Macmillan 2018). ²⁷ Herring J, Medical Law and Ethics (8th edn, OUP 2022).

²⁸ Diabetes UK, ‘Children’s voices in care planning’ (2022) [18].