UK: More on Jane Campbell – Baroness of Surbiton

assisted suicide, jane campbell, medical decisionmaking, medical killings, Our News & Commentary Blog, Terrie Lincoln, United Kingdom

I hope to get a transcript and/or link to video up later, but it turns out that Baroness Campbell of Surbiton delivered a speech during debate of the Falconer bill that caught everyone’s attention – and may have significantly affected the outcome of the vote.

Om July 7th, the Daily Mail ran an article about Campbell and her statement to the House of Lords:

Speaking from a wheelchair and needing help from a colleague to sip water, Baroness Campbell condemned the amendment for ‘turning the traffic light from red to green on state-sanctioned assisted dying – albeit in another country’.

She said she had been told by doctors that her life was at an end – and said she could imagine that others would come under similar pressure from relatives.

‘I tick every box of Lord Falconer’s criteria to die. I could go tomorrow and, believe me, I would have no trouble in persuading two doctors. Three years ago two doctors persuaded me it was time for me to go on my way.’

She added: ‘It takes extraordinary will to rise above these views, especially when such views are held by loved ones.’

Baroness Campbell, who needs a ventilator to breathe at night, added: ‘Legalising premature death is a treatment option to plant the seeds of doubt about one’s right to demand help to live with dignity and undermines the state’s responsibility to ensure all citizens can live with dignity.

‘If this amendment were to succeed I believe it will place a new and invidious pressure on disabled and terminally ill people to think they are closer to the end of their lives. Some will consider death is preferable to fighting for the support to live with dignity. It would be the cheapest, quickest, simplest option.’

That wasn’t all there was to the story, either. On July 11th, The Telegraph ran another story on Campbell, with even more detail:

Baroness Campbell considers herself very, very lucky. Her husband was able to tell the medical staff what his wife could not: that she already spent every night on a ventilator. And yes, she did want to be resuscitated. Her condition may be degenerative. But she was a fighter, and she wanted to live. To the hospital’s shame, he was forced to show doctors photographs of Lady Campbell receiving an honorary doctorate in law from Bristol university to ”prove” the quality of her life.

”What frightens me about that night is that I knew these doctors were doing what they thought was best,” she says. ”Doing what they thought I would have wanted. But if Roger hadn’t been there, there would have been no one to tell them my wishes.

”What was even worse was the isolation I would have felt if I had been alone. Part of me began to think: ‘would I have want to live on a ventilator? When you are in that situation it could be very easy to be persuaded that maybe you wouldn’t. I knew they weren’t right but I remember thinking: ‘how much say have I got in this? If Roger wasn’t here, would I have been allowed to die because the doctors believed it was kinder to end my life?”

Campbell’s story is disturbing and stops short of where real horror lies.

What if Campbell had been a lower-middle class pensioner with no higher educational degree or notoriety of any sort?

Let’s push it farther than that:

What is happening right now to disabled people with little education or income – and with no one to convince doctors that their lives are worth living?

Readers of this blog might note similarities between Campbell’s story and the one posted last month about Terrie Lincoln and her family’s fight to make sure she survived a spinal cord injury.

The recent vote in the UK, along with the attention given to Campbell’s story in the press, indicates stories like those of Baroness Campbell and Terrie Lincoln are powerful advocacy tools. I strongly suspect that these stories are just the tip of the iceberg. We need more of these stories – and people willing to tell them. The trick is finding people who actually survived these kinds of situations. –Stephen Drake

NY Case on Feeding Tube Withdrawal – Gary Harvey

life-ending decisions, litigation, medical decisionmaking, neglect, Our News & Commentary Blog, Surrogate Decisions & Guardianship

Unfortunately, there’s an all-too-familiar scene playing that’s been playing out in Chemung County in New York. In January 2006, Gary E. Harvey had a heart attack and fell down a flight of stairs. The injuries left him permanently and severely disabled.

Gary Harvey was placed in Chemung County Nursing Facility – and a familiar battle began. Sara, Gary’s wife, started complaining about the quality of care – or lack thereof. After pushing their own allegations, the facility was successful in having Sara removed as her husband’s guardian, severely limiting contact and removing any right to make decisions on her husband’s behalf.

Sara Harvey is the best person to tell her story – and she’s done so at the National Association to Stop Guardian Abuse.

Here is an excerpt from her entry on May 18th on their blog:

Jan. 2006, my husband Gary E. Harvey, age 55, suffered a tragic accident leaving him severely brain injured. As his wife and sole advocate, I’m fighting to ensure he gets the best possible care and quality of life. We’ve been abused and taken advantage of by Chemung County, CCNF, APS, DSS, Attorneys, and Supreme Court.

I pray that Gary has a full recovery. A man who served his country should not be treated this way! No matter what, I want him home where he’ll be loved, safe, and properly cared for.

The County is divorcing me from my husband and holding him prisoner.

All they care about is money. I only count when it comes to keeping health insurance on Gary and paying the bills; an obligation – not a WIFE. We are not rich and don’t want to see our home and all we worked our entire lives for, taken by the county.

For more information, please check out the link (bizarrely named) “Dying with Dignity” for a televised report on the situation.

Next up is a hearing in Chemung County on July 27th. Sara hopes to prevent impending orders to implement both “DNR” orders for Gary and removal of his feeding tube. She also wants to regain guardianship.

What, ultimately does she want? Again, she says it best herself:

I want my husband home where he belongs and where he will be safe and taken care of – and where he will be allowed to interact with not only his family, but his friends and his priest. Socialization is vital to his well-being as it is for anyone. I fear if he is not rescued from CCNF soon, he will lose his will to live, his spirit will diminish and I will lose him forever. I see him losing his spirit a little more each day. Time is an enemy here. The longer he remains in CCNF, the more his will suffers.

I also fear if he is forced to remain incarcerated in CCNF, he will die of a neglectful action resulting from ongoing, documented inadequate care. Gary trusts me; he cannot speak for or defend himself. He has no one to advocate for him at CCNF because the court has rendered me helpless to protect him.

More on this situation in the next week, as we get more information. –Stephen Drake

More on Falconer Bill: Open Letter from Leaders of Disabled People’s Movement in UK and USA

advocacy, assisted suicide, blog recommendations, bloggers, dave crippen, Our News & Commentary Blog, United Kingdom

Over the weekend, a letter opposing the Falconer bill was circulated among disability advocates/activists in the US and the UK. Diane Coleman and I both signed on to the letter on behalf of NDY. But the majority of the endorsers are disability advocates and activists from the UK.

The letter was submitted to a couple of newspapers in the UK, but was never published. It did get circulated by other means, though, and was probably seen by people who needed to read it.

The letter is up now – on Crippen’s blog. Dave Lupton is a disability activist and a funny and talented cartoonist, whose works are posted on his blog. Best of all, Dave takes accessibility seriously – all of his cartoons are provided with alternate format rich text descriptions of their content. Dave’s blog is just one of several hosted on the site “Disability Arts Online,” which is a site well worth checking out to find out what the more artistically talented members of our community are doing.

As mentioned at the top of this post, Dave Lupton has posted the Open Letter on his own blog and is titled “Final Solution.”

Here is an excerpt:

As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact onthe lives of disabled people.

If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.

The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.

Read the rest, with the list of endorsers, at Crippen’s Blog. –Stephen Drake

Tom Shakespeare Makes a Less Than Honest Case For Assisted Suicide

assisted suicide, bioethics, media coverage, Our News & Commentary Blog, reality check, Tom Shakespeare, United Kingdom

Tom Shakespeare is well-known in the disability community in the UK. In the US, it’s mostly the disability studies community that is familiar with him. Shakespeare has his feet planted in the realms of disability rights, bioethics and disability studies.

Over the past couple of years, Shakespeare has taken a strong position favoring legalization of assisted suicide for the “terminally ill” (although he generally doesn’t define “terminal”) and has harshly criticized disability activists and organizations that oppose such policies.

Therefore, it didn’t come as a surprise when Shakespeare published an essay in The Guardian yesterday, reiterating his support for legalization and his lack of respect for disability advocates and activists who oppose those efforts.

His essay is titled “A chance for dignity in dying” and carries a partial subtitle of “Jane Campbell is wrong” (referring to Campbell’s essay in the same paper).

Let me say it plainly: Tom Shakespeare is wrong. His essay relies on some rather easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws.

After first relating that over 100 people from the UK have gone to Dignitas in Switzerland, Shakespeare writes:

This is not a progressive or humane state of affairs. First, because partners or friends who travel to support dying people are at risk of prosecution once they return, a problem that Debbie Purdy’s campaign has highlighted. Second, because organisations like Dignitas appear indiscriminate about whom they help to die. Available information suggests that at least five of the British people whom Dignitas has assisted did not have a terminal illness, but conditions such as spinal injury and diabetes.

Lord Falconer’s amendment is a temporary solution to the first problem, and one that is rightly backed by disabled peer Colin Low. The director of public prosecutions has indicated that the current practice of not prosecuting relatives is out of step with the law, which makes assisting suicide illegal in all circumstances.

First of all, it should come as no surprise to Shakespeare about the nonterminality of many of the “clients” accepted by Dignitas. Having a terminal illness or being close to death has never been a requirement for “eligibility” for their “services” – although having the right amount of cash is important.

Second, laws should address real problems. Shakespeare doesn’t point to any prosecutions of relatives accompanying family members to Dignitas, because there haven’t been any. That would include the families of people like Daniel James, a young man with tetraplegia. Does Shakespeare think that somehow granting immunity to the “terminal” cases will mean that cases involving nonterminally ill people will now be prosecuted? What does “terminal” mean, anyway? For the people with MS or age-related chronic conditions, which are terminal and which aren’t? Shakespeare seems unconcerned with such details.

But Shakespeare really goes beyond some familiar-sounding polemics when he offers gross distortions of euthanasia laws outside of the UK:

But the real answer is to bring in effective assisted dying legislation in Britain, designed for mentally competent adults in the later stages of terminal illness, and with suitable safeguards to protect vulnerable people from abuse. Across Europe, laws are being introduced to give access to assisted dying in terminal illness: the Netherlands led the way, but Belgium and Luxemburg have now introduced similar legislation, while Spain and France are now actively contemplating legal measures to help people at the end of life.

Bullshit alert: Holland, Belgium and Luxembourg don’t limit “eligibility” for assisted suicide and euthanasia to “terminal illness.” Either Shakespeare hasn’t bothered to research this or he is deliberately misleading readers. If it’s the former, it’s inexcusable from a scholar and if it’s the latter, it’s intellectually dishonest.

And, if Shakespeare had delved into the Netherlands a little more closely, he’d find too much to support disability rights activists he ridicules, as in the recent decriminalization of the euthanasia of disabled infants in that country.

Shakespeare, like all of us, is entitled to his opinion. And we should all be entitled to factual honesty and integrity when we debate these issues. –Stephen Drake

Breaking News (UK): Falconer Swiss Suicide Tourist Immunity Voted Down!

advocacy, assisted suicide, legislation, Our News & Commentary Blog, Switzerland, United Kingdom

This just in: The House of Lords has voted down the Falconer amendment to extend legal immunity from prosecution to families who take disabled and ill people to Switzerland to commit suicide with the “help” of Dignitas.

From the BBC:

The House of Lords has defeated a motion to change the law that makes it a crime for loved ones to help the terminally ill to travel abroad to die.

In introducing the proposal, Lord Falconer said there exists a legal “no-man’s land” that requires clarity.

The Lords voted to defeat the amendment to the Coroners and Justice Bill by 194 to 141.

At least 115 people from the UK have gone to Swiss clinic Dignitas to die, but as yet no-one has been prosecuted.

The debate in the Lords thrust the issue of assisted suicide back into the spotlight and drew sharp criticism from church leaders and advocates for the disabled.

More on this later. –Stephen Drake