Dementia expert June Andrews on assisted dying fears

She has expressed deep concerns about aspects of Liam McArthur’s Assisted Dying Bill progressing through Holyrood. The long campaign to make this law will come to a head in the autumn. Yet, while a host of A-listers have expressed support for the proposed legislation, several disabled organisations have become increasingly concerned.

They believe that once such legislation passes into law disabled people will come to be regarded as an unjustifiable drain on the nation’s resources and that subjective quality-of-life measurements will be applied to bring pressure to bear on them.

“The main issue is lack of clarity about what exactly is being asked for,” says Professor Andrews. “When people see the details of how these things are put into practice they don’t like it.

“What drugs are involved and how are they administered. Are they the kind that are used in American executions? And given the practical problems with botched executions what data do we have on the common problems such as the person retching for hours, regaining consciousness, or death being delayed for hours or days? How much of these unintended side effects are we prepared to risk? 

“Although we might quibble about words, this is really about legalised euthanasia.  ‘Assisted dying’ sounds like ‘help when I am dying’.  That could mean help with distressing symptoms, but that’s already possible, without legislation. 

“Currently, the resource available to support humans who are at the end of life is inadequate. New legislation that required every Health Board and local authority to provide adequate support at the end of life would be better, but more expensive than a new law allowing Health Boards to end the lives of patients, even at their own request.”

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Does she think there needs to be a wider debate about society's attitudes to care for the elderly and infirm and how it’s funded?

“I don’t think it’s so much a debate about attitudes to older people but about our own preparation for later life.  Research indicates that people fear dementia more than cancer. 

“Yet, many people I know with dementia are very happy for a long time. A lot of the education for nurses and others caring for people at the extreme end of dementia is about making things better. The terrible things I’ve seen are usually the result of poor care; badly trained staff; badly-designed facilities; lack of resources and other issues that could be resolved simply with more money.

Most of the cost of care of older people who are frail or have dementia falls on the individual themselves, and their family carers, thus breaking the ‘cradle to grave’ promise of the NHS. Because people are surviving longer, the cost of this promise - if the government was to fulfil it - is now so great that only a radical change in the taxation system would fix it.

“A lot of care is currently provided by the amassed capital of older people who benefited from the financial windfall of buying (below value) their rented home or council house, or the middle-class benefit of lifelong home ownership. There’s now a question of how care will be paid for in future as the current generation finds it hard to get on the home ownership ladder at all.

“It's not about our attitudes to “the elderly” but our attitudes to our own old age and end of life and how we can make it the best it can be. Most old people don’t go in care homes. Most people don’t die in agony. New legislation should be about preventing major problems by getting people to plan for the future. Currently, you need to do that on your own. Maybe one day as a society we will do that together.”

Liberal Democrat Liam McArthur (Image: Newsquest)

Some of the unintended consequences of Mr McArthur’s Bill are less about moral and ethical solutions and more about cost effectiveness. That as the cost of free health delivery continues to vex politicians, so care for older people comes to be regarded as ‘low-hanging’ fruit and the path of least resistance. Professor Andrews feels this is a process that’s been occurring for several decades.

“The NHS had already passed a lot of the cost of care for frail older people out of its responsibility. Geriatric hospitals have all but disappeared and been replaced by ‘care in the community’. When people talk about ‘bed blockers’ or ‘delayed discharge’ they’re talking mainly about older people, probably with cognitive impairment, who should not be in an acute hospital.  But there are now no long-stay geriatric services to pass them to.”

On a visit to Scotland two years ago, the renowned Canadian palliative care expert, Professor Leonie Herx spoke in graphic terms about the consequences of similar legislation in her home country. She described this as a form of eugenics where decisions are being made on which people get to live on the basis of whether a third party thinks they have the sorts of lives that are worth living. It’s begun targeting not just the elderly and people with dementia, but those with mental health issues rooted in poverty and trauma.

Professor June Andrews on care and assisted dying

Those national disability groups in the UK who have expressed similar concerns about the Assisted Dying Bill feel that it may normalise the concept of subjectively deciding which lives are worth living. Professor Andrews agrees. She also fears that people who become physically disabled are vulnerable to depression and thus more prone to thoughts of suicide and that we should be addressing this as part of their care package. She believes though, that it’s overly simplistic to blame the government. 

“We get the government we deserve,” she says. “Many people are in a lottery where they’re left to hope they’re not one of the unlucky ones who gets frail and becomes expensive. And taking their chances that they won’t, they’ll vote against raising taxes and thus sharing the risk of getting frail and expensive with everyone else. Yet, if they lose this bet, they’ll still complain that although they worked hard for all of their lives they’re now having to sell their assets to pay for care, ‘even though I paid my taxes’.

“There’s a failure to acknowledge that they’ve already drawn down heavily on the quantum of taxes they’ve paid. Your average 70-year-old has probably had free nursery care; free schooling; maybe free university and lots of health care along the way, including operations and emergencies. 

“They may have had the benefit of low-cost council housing and been able to buy that house. They’ll have had pension entitlement and child benefit, while living in a free society with defended borders. No matter how much you’ve paid in tax, what you have left won’t last very long in a care home at £2,000 a week.”

She mentions criticism of the Scottish Government for sending infected elderly patients back into Care Homes, but suggests that the roots of this practice ran deeper and challenge what the rest of us are prepared to accept.

“We had a highly centralised government which was trying to do its best with the information it had. It possessed very little knowledge or understanding of old age and frailty and no control of how care homes work. 

“Many care homes made huge sacrifices, yet were made pariahs by a government which sanctified the NHS which itself was also making mistakes. The problematic attitude was one of central controlling forces unable to believe that they were wrong or that they should listen to anyone outside their immediate circle.

“The fact that old people died in such numbers is related to the fact that they’d been allowed to languish in hospital in the first place. That’s the underlying problem and again, that’s just about money.”

My final question doesn’t really need to be asked, because we both probably agree on the answer. How much more are we prepared to pay for end of life care for other people?