Catholic Medical Quarterly Volume 75(3) August 2025
Regarding: Lejeune Clinic Evidence
Submission - Terminally Ill
Adults (End of Life) Bill
20th January 2025
We at The Lejeune Clinic wish to submit evidence regarding the Terminally Ill Adults (End of Life) Bill 2024-25.
With decades of experience providing specialized care to children with Down syndrome, and supporting thousands of families worldwide, we are deeply concerned about the implications this Bill could have on vulnerable individuals with intellectual disabilities.
1. Our Expertise and Concerns
The Lejeune Clinic has been running for over 30 years and in that time has offered expert medical support, speech & language and occupational therapy services to children with Down syndrome, addressing their complex healthcare and developmental needs. We have firsthand experience of the challenges they face in accessing appropriate care, ensuring their rights are respected, and making informed decisions regarding their well-being.
Based on our experience and existing research, we believe the Bill presents several risks to individuals with Down syndrome and other intellectual disabilities:
2. Vulnerability to Coercion:
People with intellectual disabilities are at a higher risk of coercion due to their reliance on caregivers and professionals, which raises serious concerns about the ability to ensure fully voluntary decisions in end-of-life matters. Studies have shown that individuals with intellectual disabilities can struggle to assert their autonomy in medical settings.
3. Informed Consent Challenges:
Effective communication and understanding of complex medical decisions require significant support and expertise. Our clinical experience indicates that individuals with Down syndrome often need specialized communication techniques to ensure they fully understand their options and consequences. Without tailored safeguards, the potential for misinformed decisions is high.
4. Risk of Reduced Healthcare Investment:
Evidence from countries where assisted dying is legalized suggests a shift in healthcare priorities, with reduced investment in palliative and long-term care services. We fear that individuals with disabilities, who require lifelong support, may face reduced access to necessary services as a result of the Bill.
5. Ethical and Societal Concerns:
Legalizing assisted dying risks reinforcing negative societal perceptions that devalue the lives of people with disabilities, potentially leading to discrimination and reduced support for their inclusion in society.
6. Conclusion
We urge the Committee to carefully consider the implications of the Bill on individuals with intellectual disabilities and to ensure that robust safeguards are in place to protect their rights, dignity, and access to quality care. The Lejeune Clinic for children with Down syndrome remains committed to advocating for their well-being and offering our expertise to inform future policy decisions.
Yours sincerely,
Rev Dr Michael Jarmulowicz
Chairman of the
Board of Trustees
The Lejeune Clinic