Assisted dying: 'I watched my mum suffer and die slowly for three days - it was horrific'

A woman says it was “horrific” to watch her mum suffer for days before dying after being declared brain dead.

It comes as MSPs on the Scottish Parliament’s Health Committee said the upcoming vote on assisted dying was a “matter of conscience” and they would not be making a recommendation either for or against the plans to legalise assisted dying for those suffering from a terminal illness.

The Committee also highlighted several areas it says will require further consideration at Stage 2, should MSPs vote to approve the Bill at Stage 1.

Liberal Democrat MSP Liam McArthur brought forward the legislation at Holyrood, which aims to give terminally ill adults the right to request help to end their life.

“I didn’t expect to be sitting there day and night watching her slowly die”
Lucinda Kingham

Lucinda Kingham watched her mother Julie-Anne die following a brain haemorrhage at 59 years old.

She sat with her grandmother for three days as her mum, from Scotland, struggled.

She says that her experience highlights the need for legal reform after her mum was declared brain dead.

Lucinda Kingham talks about her mum, Julie-Anne who suffered for three days before she died. STV News

She told STV News: “They removed all her life support in the hospital and that was it.

“They gave her sedation and said we essentially need to wait for her to die. I asked the consultant how long it would take… they said it would take days and it did.

“She had nothing wrong with her heart or lungs but she wasn’t alive. She was brain-dead.

“We spent three days in the hospital watching my mum suffer. There was a lot of secretions coming up, she was gargling which made it sound like she was drowning.

“It was horrific to witness. The most distressing thing was being there day and night for three days, sleeping there for no reason, because she was not alive.

“But we had to witness the most horrific things happening to her.”

She added: “We got to a point we just wanted it to be over. It needs to end. My mum is dead. Why is she being kept alive?

“I could physically see her suffering.”

Lucinda says Julie-Anne wanted to “die with dignity” and would have supported assisted dying had it been in place at the time of her death.

“I didn’t expect to be sitting there day and night watching her slowly die,” she said.

Assisted dying: Vote going through Holyrood and Westminster

The Holyrood committee acknowledged the definition of terminal illness in the Bill does not include a life expectancy timescale and that this would mean widening eligibility for assisted dying to include individuals who, although living with an illness or condition that is progressive and untreatable, may not be approaching death for a considerable period of time.

MSPs also concluded that the issue of conscientious objection for healthcare workers will require further attention should the Bill progress to Stage 2, to ensure the relevant provisions of the Bill provide an appropriate level of legal clarity and certainty for all parties involved in the assisted dying process.

Clare Haughey, convener of the health, social care and sport committee, said: “Ultimately, our Committee believes the Stage 1 vote is a matter of conscience for each individual MSP and as a result has made no overall recommendation as to how they should vote on the general principles of the Bill.

“However, should the Bill progress to Stage 2, we have highlighted a number of areas which we feel will require further consideration before the Bill can become law.

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“These include issues around human rights, coercion, eligibility criteria, provision of assistance, self-administration and conscientious objection for healthcare workers.

“We also recognise that there are particular complexities associated with those aspects of the Bill which extend beyond the limits of the powers currently devolved to the Scottish Parliament.

“If the Parliament approves the Bill at Stage 1, there will need to be an open and constructive dialogue between the Scottish and UK Governments to resolve these issues and to allow the Bill to take full legal effect.”

On the issue of capacity, the committee said this would need to be assessed in a “fair and non-discriminatory way” for those with a mental disorder, while also seeking to give “suitable protection for vulnerable individuals”.

Additional safeguards could also be considered against “so-called ‘doctor shopping” – where people try to find a doctor who will support them to end their life.

The Bill is centred around allowing terminally ill people in Scotland to be assisted in their death. It has restrictions on what conditions it would apply to, the person would have to be 16 or over and resident in Scotland for at least 12 months, as well as have the capacity to take the decision.

This is the third time Holyrood has voted on the issue – there was also a proposal in 2004 that didn’t get enough support to be introduced.

However, the last vote on the issue was in 2015. Since then there’s been two Scottish elections, Westminster has started examining the issue following a Bill introduced by Labour MP Kim Leadbetter and, just last month, assisted dying passed its final legislative vote on the Isle of Man.

This is the third time Holyrood has voted on the issue – there was also a proposal in 2004 that didn’t get enough support to be introduced.

But the last vote on the issue was in 2015. Since then there’s been two Scottish elections, Westminster has started examining the issue following a Bill introduced by Labour MP Kim Leadbetter and, just last month, assisted dying passed its final legislative vote on the Isle of Man.

At Holyrood, this will be the first time that 86 of the 129 MSPs will have casted a vote on the issue. And for between ten and 20 of them, it’s still a decision they are wrestling with, meaning the Bill’s potential to progress is on a knife edge.

First Minister John Swinney said last year that he was “actively and carefully” considering his position, and would make his views known on McArthur’s Bill ahead of the vote at the Scottish Parliament.