If the Assisted Dying Bill - which would allow terminally ill people over the age of 18 to be helped to die by a doctor - passes into law, the government must urgently address geographical inequity in accessing high-quality end of life care, urges the children’s palliative care charity Together for Short Lives.
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The organisation has also aired concerns that terminally ill young people in poverty may be more likely to request assisted dying.
In a policy statement on its website, the charity underlines that while it does not have a single agreed view on assisted dying, careful consideration of the implications for children and young people is needed.
It states: “If assisted dying were to be legalised, there would be a number of significant implications for seriously ill children and young people, their families and the professionals and services that provide them with care and support.
“Legislation would need to carefully consider these implications and adopt appropriate safeguarding measures where necessary, whilst also ensuring young people still have the essential ability to choose their own care.
“Not only should these implications be recognised and accounted for, but it must also be acknowledged that access to high quality palliative care for children and young people depends on where they live.
“This is a result of severe workforce shortages, significant funding gaps and a lack of accountability among local NHS bodies and councils that the UK’s governments must urgently address.
“We cannot allow a scenario in which young adults choose an assisted death because they are unable to access the palliative care they need, when and where they need it.”
Key considerations according to the charity:
Professional competencies - Given the differences between children and adults, both physically and developmentally, providers providing these services would need specific competencies in children and young people.
Medicines - Jurisdictions would need to specify which medicines could be prescribed for the assisted death, and determine the form and manner in which they should be administered.
Competence, Capacity, and Parental Responsibility - Complex questions on whether parents or children can request an assisted death, and how to assess best interests, would need addressing.
Service Provision: It would need to be clarified whether assisted dying would operate as a specialist service and whether it would be part of the NHS. Clarity would also be required on whether palliative care provider organisations can opt-out without legal consequences.
Funding and Conscience Objection: Providers’ rights to conscientiously object must be protected and funding should not depend on offering assisted dying.
In its response to a government call-for-evidence, the charity also raises concerns about the potential role of poverty and social media in young people’s decision-making.
It states: “There is a risk that a child, young person or their family may feel that assisted dying or suicide could resolve potential socio-economic factors, such as distress resulting from low income or energy poverty, as well as any pain or distressing symptoms that the child or young person may be experiencing.
“In choosing between an assisted death or suicide and a later death from their condition, we are concerned that a young person could be vulnerable to influence – or could temporarily make the wrong decision to request an assisted death or suicide – when they may not actually desire to die.
“Parliament would need to consider how children and young people who are not cognitively disabled might be influenced, including through online and social media."
Skillset of professionals needs close attention
Mother Dee Cowburn, has expressed concern over the proposed new law and its potential effect on disabled young people like her daughter Tilly, aged eight, who has Rett Syndrome, a complex and rare neurological condition which has left her non-verbal and with severely impaired mobility.
The charity says Tilly's life quality is significant, despite her disabilities: She uses an eye gaze device to communicate and attends a mainstream school where she excels at reading, writing and maths.
Cowburn said: “In the bill, there is nothing to specify the role or the skillset of a professional who could assist someone to die.
“Usually, any child or young adult around them with a rare condition has a really specialised team looking after them familiar with their condition. But in emergency situations, we often see doctors unfamiliar with Rett Syndrome.
“I am sure that this is also the case for many life-limiting and life-threatening conditions children and young adults have.
“So, for someone without any specialism or specific skillset to be able to make such a big life ending decision for complex children when they are older worries me. Especially if that young person is on their own and there isn’t anyone around to advocate for them.”
The charity's chief executive Nick Carroll said: “While this bill is designed to offer assisted dying to terminally ill adults, it would inevitably have an impact on seriously ill children, young people and their families.
"Assisted dying could become part of already challenging conversations about end of life care choices that young people and their families have with professionals as they approach adulthood. It is vital that MPs consider this during Friday’s debate.
“There are many questions about the impact of this bill on children and young people which are still to be answered.
"There is a postcode lottery in access to high quality palliative care for children and young people.
"No young adult should feel compelled to consider an assisted death because they cannot access the palliative care they need, when and where they need it.”
MPs will debate the wider issue before voting on the second reading of the Assisted Dying for Terminally Ill Adults Bill on Friday.
