Aims To formulate an ethical response to discussions around physician assisted suicide (PAS) in relation to children, in view of the Margot MacDonald proposals in Scotland.
Methods Ethical debates around euthanasia and PAS have traditionally excluded children. In 2009 Margot Macdonald MSP laid down an Assisted Dying Bill in Scottish Parliament in which 16- and 17-year olds would be allowed to request PAS. ACT (now Together for Short Lives) established a working group to develop an algorithm for formulating responses to consultation requests, and an agreed response to the specific consultation. The Group then supported staff in the presenting evidence at the Parliamentary Hearing.
The Group's role is:
▶ To clarify ethical terms, allowing lay members of the organisation to participate meaningfully in the debate.
▶ To make core recommendations regarding the role of palliative care in ethical end-of-life management.
▶ To solicit and collate members' views where appropriate.
▶ To recommend to the organisation's Advisory Council a specific response to consultation.
▶ To support individuals where necessary in giving oral evidence.
In a submission in response to consultation, and subsequent evidence at Parliamentary Hearings, the Group made three responses:
▶ Age is not the only determinant of the ability of a young person to make decisions.
▶ The inclusion of terminal illness as a qualifying condition requires clinicians to be able to provide an accurate prognosis in an uncertain speciality. This is especially problematic in the case of young people with non-malignant conditions.
▶ Proposed safeguards are unlikely to protect vulnerable young people who seek to end their life because they feel a burden to others, or who cannot see a reasonable alternative.
The Group continues to work within Together for Short Lives and has hosted the organisation's first national conference focusing on ethical issues in children's palliative care
Conclusion Membership organisations have an essential role in responding to ethical debates that impact on children, and should make recommendations based on fundamental principles of ethics and of children's palliative care. The Group's response to the Assisted Dying Bill is an example of good practice in facilitating such involvement.
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