Dan Hyde comments on the new report from the Commission on Assisted Dying

Published on 6 Jan 2012 under category: cubism

By Wesley Johnson, Press Association Home Affairs Correspondent - Jan 5, 2012

Poor quality end-of life care in the UK is driving people to travel abroad to die and the UK needs to provide an alternative, author Sir Terry Pratchett has said.

Sir Terry, who has campaigned for a change to the law over assisted dying since being diagnosed with Alzheimer's disease in 2007, said care homes have the same connotations for some older people as workhouses used to have.

Today's report from the Commission on Assisted Dying (Full report downloadable), which he helped fund, did not go far enough, he said, but he admitted there was little prospect of progress over the next few years.

The award-winning Discworld author said the poor quality of end-of-life care in the UK was leading to people travelling to the controversial Dignitas clinic in Switzerland, where he filmed the Choosing to Die documentary last year, to die.

While Sir Terry, 63, conceded he does not "necessarily agree with everything Dignitas stands for", he told the Press Association: "I'm glad that it's there, because it's a spur.

"If you don't like people going to Dignitas, what can you provide them with here?

"And what you can provide them with is a certain amount of commonsense thinking.

"And I would say a declaration that somebody's life is their own and does not belong to the sodding Government."

He said that one older woman who told him she wanted control over her death "dreads the idea of going into care, which these days has for some people the same connotations as the word workhouse used to, once upon a time".

"I know I'll get into trouble for saying that, but frankly the industry has brought it on itself," he said.

Dementia care in the UK

"Certainly, since the time I've had Alzheimer's, I've run into cases of old ladies being force-fed against their wills which is illegal.

"I have some doubt that our cash-strapped services can find much money to make things better."

He highlighted a review of dementia care in hospitals in England and Wales last year which found "what you might call a complete breakdown in care".

Sir Terry said it was "a misunderstanding of basic care, like keeping the patient comfortable, seeing if they're in pain, if they are eating properly, things like that".

"What was a really nasty thing to hear, at some hospitals carers came to the researchers and said they thought they hadn't had enough training in dealing with dementia," he said.

"It was appalling.

"That, and other things, and the fact these days we do see what's going on, that's what's leading people to go to Dignitas and indeed to support assisted dying here.

"I think it's terrible that people have to go to another country to die.
That seems the worst part of it, almost worse than the death."

Asked if he was resigned to the prospect that little would change over the next few years, Sir Terry said: "Yes.

"Bear in mind that I have a lot of money, which makes options somewhat easier.

"I'm sorry and embarrassed I have to say that. The reason I'm doing this sort of thing is because other people don't."

He added: "As far as the Alzheimer's is concerned, I don't know what you can possibly do, except insist on improving care."

But he said he was "pretty OK" at the moment, finishing two further books and also working on a third.

"PCA (posterior cortical atrophy) sits on the top of the real Alzheimer's and I haven't even got to the bottom of the top, so I'm pretty OK, so that's why I can be somewhat sanguine about this."

He added there was a time when old ladies would go to Harley Street "where a man would see them OK".

"Whether they still do that sort of thing, I do not know," he said.

"But they would do it quite possibly the rich man's way. I sincerely hope that still exists."

Sir Terry called for tribunals, rejected by the commission for being too bureaucratic, to be brought in to assess whether someone should be helped to take their own life, saying people know how to read others and would be able to protect vulnerable people.

He went on: "I'd like to see a certain amount of discussion under the title of who actually owns your life.

"I feel that if someone is beset with a debilitating, and ultimately killing, disease, wishes to die and there's a physician who is willing to help you do that and, most importantly, the patient is totally compos mentis at the time of making his decision, why does the Government think it has control over that man?

"Especially since the quality of care in the UK these days could not be said to be all that good.

"The Government could not walk a mile in that man's shoes, but it says that he cannot die when he wants to."

The year-long commission called for doctors to be given the right to be able to help terminally-ill people with less than a year left to live to kill themselves.

But stringent safeguards must be in place to protect those who might not have the mental capacity to make such a choice, or who might be clinically depressed or experiencing pressure from friends or relatives.

The commission, chaired by former lord chancellor Lord Falconer, said that, under their proposals, a terminally-ill person would need to be able to take the medication themselves, as a clear sign their actions were voluntary.

Reactions to the Falconer Report

One member of the 11-strong commission, the Reverend Canon Dr James Woodward, said he was unable to back its majority decision, saying it was not the right time to consider changing the law until a greater ethical, moral and social consensus had been generated on the issue.

Sir Terry said: "If you have to wait until everyone in the country is ready for something then nothing is ever going to change."

Deputy Prime Minister Nick Clegg said the report would help people come to conclusions on the issue of assisted suicide, but any vote on the law would be taken by MPs individually, not along "Government" lines.

"Assisted suicide is one of those issues where governments generally, and I think quite rightly, don't take a sort of Government position, because this is something which is very much for individuals and their consciences to decide their own moral and ethical judgments."

But opponents of a change in the law accused the commission of being biased and "seriously flawed" and warned that its proposals risked increasing the pressure on vulnerable people to end their lives out of fear they might become a burden for others.

The Care Not Killing alliance warned that the proposed safeguards were "paper thin" and has previously said a change in the law could lead to around 13,000 deaths a year.

Nola Leach, chief executive of the social policy charity Care, said: "At the beginning of this new year we should be thinking about the steps we can take that will challenge our society to value the vulnerable and people with disabilities more.

"The last thing we should be contemplating - especially at a time of economic hardship - is changing our laws so that those with a terminal illness, who believe they are a burden, are more likely to feel pressured into ending their lives."

Since new guidelines for prosecutors in assisted suicide cases were brought in in February 2010, anyone acting with compassion to help end the life of someone who has decided they cannot go on is unlikely to face criminal charges.

But assisted suicide remains a criminal offence in England and Wales, punishable by up to 14 years in prison, and individual decisions on prosecution will be made on the circumstances in each case.

The commission called for Parliament to consider developing a new legal framework for assisted dying, saying that the "current legal status of assisted suicide is inadequate, incoherent and should not continue".

Dan Hyde Comments

Dan Hyde, a consultant at Cubism Law, said the commission's proposals were "fraught with danger".

"They place a huge burden on doctors who would have to decide if a person has less than 12 months to live, that they have mental capacity, are not being coerced and are otherwise within the qualifying conditions," he said.

"In addition, the prescribed lethal dose is to be self-administered, which might be difficult or lead some to ask for assistance which presumably would be a criminal act.

"Experts often differ and one could envisage relatives subsequently alleging criminality or professional negligence against the doctors."

He added that many cases, such as those with locked-in syndrome, dementia and illnesses that have a life expectancy of 12 months or more, would be outside the scope of the proposals, leading to possible legal challenges in the courts.

"This is a highly complex area that does not lend itself easily to legislation," he said.