Assisted dying

Assisted dying is an extremely complex issue with many ethical and moral questions at its heart, not to mention the understandably strong emotions it evokes across all parts of society.

At Together for Short Lives, we do not have a single agreed view about the ethical or philosophical arguments for or against assisted dying or assisted suicide. We represent those who support the general purpose, some who oppose it and some who are uncertain.

Our focus is on understanding and communicating the potential implications that assisted dying legislation could have for young people and young adults with serious illness, their families, and the professionals and services that provide them with care and support.

If assisted dying were to be legalised, we believe legislation, regulations and guidance would need to carefully consider these implications and include appropriate safeguards. At the same time, any future approach should recognise the importance of supporting young people and young adults to make informed choices about their care and treatment.

We also believe it is essential that discussions about assisted dying do not take place in isolation from wider challenges affecting palliative care. Access to high-quality children’s palliative care remains unequal across the UK, driven by workforce shortages, funding pressures and variation in local provision.

We cannot allow a scenario in which young adults choose an assisted death because they have been unable to access the palliative care they need in the years leading to adulthood.

Key considerations

There are a number of key considerations for young people and young adults with serious illness, their families and the professionals and services that provide them with care and support:

• Advance care planning and conversations with young people: While current proposals would apply only to adults aged 18 and over, some young people may have questions about the options available to them at the end of life once they approach adulthood. Professionals must have the education, training and guidance to navigate these sensitive discussions effectively.
• Eligibility and prognosis: Determining whether someone is terminally ill can be particularly challenging for young adults with life-shortening and life-threatening conditions, whose conditions may fluctuate or whose prognosis may be uncertain. Clear guidance would be needed to support consistent decision-making.
• Professional expertise: Young adults with life-shortening and life-threatening conditions often have needs that differ from those of older adults. Professionals involved in assessing requests for assisted dying should have the appropriate training, qualifications and experience to understand and respond to those needs.
• Palliative care and informed decision-making: Any person considering an assisted death should have access to clear information about the palliative and end of life care available to them, including the impact that such care can have on quality of life, wellbeing and symptom management.
• The impact on hospices and palliative care providers: Consideration should be given to how any assisted dying legislation would affect hospices and other palliative care providers. Organisations and professionals who conscientiously object to participating in assisted dying should have that right protected, and statutory funding should not be dependent on providing assisted dying services.
• Monitoring and review: Any future assisted dying legislation should be subject to robust monitoring and review. This should include a specific assessment of its impact on young people and young adults with serious illness, their families, and children’s palliative care services.

Any change in the law must ensure that high-quality palliative care remains available to everyone who needs it. Professionals should also be supported to have open, honest and compassionate conversations with young people, young adults and families about future care and treatment choices.

Current legislation

The Terminally Ill Adults (End of Life) Bill, introduced by Lauren Edwards MP, is currently being considered by the UK Parliament.

If enacted, the Bill would allow terminally ill adults aged 18 and over who meet specified eligibility criteria and safeguards to request assistance to end their own life.

The Bill includes a number of provisions that are particularly relevant to young people and young adults with serious illness, their families and palliative care services, including:

• An opt-out provision for professionals: the Bill would permit health and care professionals to opt-out of any involvement in assisted dying.
• A restriction on raising the subject with those under the age of 18: the Bill would prohibit any professional from raising the subject of assisted dying with a person under the age of 18.
• A reporting requirement on palliative care: the Bill would require the Secretary of State to report on the availability, quality and distribution of palliative and end of life care within a year of the Act being passed.

Together for Short Lives has produced a briefing that explores the specific implications of the Bill for young people and young adults with serious illness, their families and the professionals and services that provide them with care and support. It also sets out the changes we believe parliament should consider.

We urge parliamentarians to consider these issues carefully and ensure that any legislation includes robust safeguards for young people, young adults, families and palliative care services.

Read our latest briefing here.