Living wills: 'My right to choose'

By Liam Allen
BBC News

People with severe illnesses could make "living wills" saying they want medical treatment withheld if they become incapacitated, under a controversial new bill.

The new bill would put decisions in the hands of the sufferer

"Everyone has the right to choose," is the view of a retired police inspector from Cardiff with Motor Neurone Disease.

After the latest in a long line of hospital stays, Michael Baker realised he "probably wasn't going to make it" and decided to make a living will.

Signed by proxy by his wife Jill, it states that when his condition deteriorates he does not want a tracheotomy and does not want to be kept alive on a ventilator or be resuscitated if he stops breathing.

He has the full support of his family in the decision.

"It's a definitely a quality of life issue," Mr Baker said.

My wife's seen me go through this for the last four years and she knows that many days I'm in agony, not from the pain but from the crippling disease Michael Baker

The 57-year-old was diagnosed with the muscle-wasting disease four and a half years ago.

Life expectancy is usually between two and five years following diagnosis, he said.

He has no movement in his limbs and is "completely dependent" on his wife, three children and carers.

"My wife's seen me go through this for the last four years and she knows that many days I'm in agony, not from the pain but from the crippling disease."

There is, though, currently no law specifically covering living wills.

MENTAL INCAPACITY - THE FACTS Up to 2 million people in the UK are affected by lack of capacity More than 700,000 people currently suffer from dementia Ten to 15 per 100,000 suffer severe head injury each year An estimated 120,000 people suffer long-term effects of severe brain injury 1% of population suffer from schizophrenia at some time Source: Department of Constitutional Affairs

It states that a doctor cannot deliberately be a party to ending a patient's life, but does acknowledge a patient's right to refuse life-sustaining treatment.

It is unclear under what circumstances a living will could be legally binding.

Carers who make day-to-day decisions for people who are severely ill also have no legal protection if a complaint is made about those decisions.

Legal force

The Mental Capacity Bill plans to clarify the situation by providing legal force to living wills.

The danger of a living will when it becomes part of statute law is that a proxy could make a decision to do away with someone for the motive of killing someone Archbishop of Cardiff Peter Smith

It would allow "lasting powers of attorney" to be given to a designated person to enable them to refuse treatment in the event of the patient's mental incapacity.

But opponents say it gives too much power - the power of life and death - to doctors.

They are also worried that allowing a third party to direct doctors to stop giving treatment could allow "euthanasia by omission".

Opponents of the bill include Peter Smith, the Archbishop of Cardiff - Mr Baker's home city.

Proxy decision

"The danger of a living will when it becomes part of statute law is that a proxy could make a decision to do away with someone for the motive of killing someone," the archbishop said.

"The other thing is that this bill does impose on the doctor a statutory duty to follow the instructions of the proxy even if it's against his better medical judgement."

Mr Baker remains convinced that if critics of the bill were in his position, they would have "a different viewpoint".

"How can they make a judgement decision without knowing what people are going through?"