The charity providing the only hospice services in Scotland for children and young people has raised “serious concerns” over proposals to legalise assisted dying.
Children's Hospices Across Scotland (CHAS) has told MSPs that they are anxious about the legislation, which, in its current form, would allow anyone "mentally competent" aged 16 or over to “voluntarily choose to be provided with assistance by health professionals to end their lives”.
They argue that Assisted Dying for Terminally Ill Adults (Scotland) Bill — introduced by Lib Dem MSP Liam McArthur MSP — does not take into consideration scientific evidence on brain development and decision-making capacity in the under 25s.
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In their submission to Holyrood’s Health, Social Care and Sport Committee, CHAS complains that the Bill has been drafted with older adults in mind.
They say they do not take “a moral position for or against” the legislation currently making its way through the Scottish Parliament but are anxious that it does not “appear to have given due consideration of the specific needs of young people.”
They want to see the minimum age increased and “additional tailored safeguards for younger adults up to the age of 25”
The charity also questioned the process for judging if a person is mentally competent enough to decide to proceed with assisted dying.
They say they do “not believe the proposed process in the legislation is not fit for purpose for assessing capacity in the complex cases of young people.”
CHAS states: “We have concerns about the lack of detail on the face of the Bill regarding how capacity will be assessed. The process for assessing capacity is not specified.
“These matters are left for Scottish Ministers to determine through regulation, although they are fundamental safeguarding components of the Bill and should be set out up-front and subject to scrutiny.
“The Bill also doesn’t specify the level of skills, knowledge, experience and standard of diligence required by assessing medical practitioners for assessing capacity. Again, we would expect to see this level of detail set out on the face of the Bill.”
They also call for “clear guidance on identifying where coercion is taking place, and training available for professionals to learn what behaviours might indicate this as it manifests in young adults.”
The group also calls for an “opt-in” system rather than a legal obligation on hospices to be places where people can choose to end their lives.
They say children’s hospices would not be suitable places to facilitate assisted dying, as this could have an impact on younger children, young people, families and staff.
Their submission to the committee states: “CHAS strongly recommends that any Bill explicitly precludes criminal and civil liability for organisations that do not provide assisted dying or associated services. We also believe that an opt-in model would be more appropriate for non-NHS providers/ independent healthcare providers.
They argue that if assisted dying is legalised, then it should “operate as a separate, specialist service integrated with but sitting separately from” the NHS.
CHAS has also warned that the definition of "terminal illness" in the Bill is too imprecise and that there should be a clear difference between young people with a life-shortening condition who may have years of stable life ahead and those with imminent death.
The charity will be giving evidence to the committee on Tuesday as Mr McArthur’s Bill makes its way through Parliament.
The Lib Dem’s Member's Bill has been overshadowed in recent days by a growing row over a similar bid to legalise assisted dying in England and Wales.
Unlike in Westminster, where MPs will vote on the general principles of the legislation at the end of the month, the Scottish Bill is still going through Stage 1 scrutiny in Holyrood.
Currently, MSPs on the Health Committee are taking evidence from a number of stakeholders.
Tomorrow, as well as hearing from CHAS and others providing palliative care, they will speak to bodies representing healthcare professionals, including the Royal College of GPs (RCGP), who are strongly against the legislation, and the British Medical Association which is neutral.
In their evidence, the Royal College of Nursing (RCN) expressed concerns about the potential for nurses to be left alone while administering the lethal substance. They say this could leave their members “open to accusations of coercion or wrongdoing and represents an unacceptable risk”.
“It cannot be assumed that family members would be supportive of assisted dying and the procedural safeguards established by the Bill need strengthened to protect the health professionals involved,” they add.
Both they and the Royal Pharmaceutical Society also call for clear guidelines and protocols to address potential complications, such as the substance failing to work as intended or producing "an unforeseen circumstance.”
There is broad consensus over the need to adequately fund palliative care.
The RCGP, RCN, and Marie Curie all say if the legislation goes ahead then there needs to for adequate resources and funding for assisted dying services to ensure they do not take away from already over-stretched services.
In their evidence, the BMA also calls for buffer zones outside healthcare settings providing assisted dying.
“Given the strong views around assisted dying, it is possible that similar protests [to those that took place outside clinics providing abortions] could take place close to facilities providing assisted dying.
“Although there is no evidence of harassment outside establishments in other countries, the BMA strongly supports the need to protect both staff and patients in the event of any harassment taking place.”
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Responding to CHAS’s concerns, Mr McArthur told The Herald: “I am confident that my proposals represent a robust and well safeguarded bill, allowing Scots access to the choice of an assisted death if they have an advanced, progressive terminal illness and the mental capacity to make the decision. For example, anyone wishing to access that choice would have to convince two doctors that they fell within the scope of the bill.
“For the purposes of medical consent, Scots Law treats 16 year olds as full adults, which is why that is the age that is proposed in my bill. However, I am keen to hear the evidence taken by and views of the Health Committee in their scrutiny of my bill and I remain open to discussing amendments on this if that is the will of Parliament.
"The public polling is consistent across age range, disability status, geographic area and religious belief: Scots want a change in the law to allow terminally ill people the choice of an assisted death."
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