Monday, February 2, 2015

British disability leader speaks out against assisted suicide - "I am convinced that a change in the law would put our lives at risk."

These are the two speeches by Baroness Jane Campbell in the British House of Lords on January 16, 2015 opposing the assisted suicide bill.

Baroness Campbell was Commissioner of the Equality and Human Rights Commission (EHRC) from 2006–2008, Chair of the Disability Committee which lead on the EHRC Disability Programme, former Chair of the Social Care Institute for Excellence (SCIE) and Commissioner of the Disability Rights Commission until October 2006.

Cambell has been featured in several articles on assisted suicide such as: ● Assisted Suicide could lure me to the grave, ● Why I oppose assisted suicide and ● Assisted suicide bill in Britain is fatally flawed.

Baroness Campbell's first speech in the House of Lords - January 16, 2015. 
My Lords, I thank the Minister. I am sorry I have not got a loud voice. I may be a little slow. This is not because I want to hold up the Bill, I just have things to say.

Baroness Jane Campbell
We have been told time and again that disabled people with life-limiting conditions—and I use that term advisedly because we do not recognize the terms “terminal illness” and “months” or “weeks to live”; ... have nothing to fear from the Bill. We are told that it is necessary only to help a few desperate individuals to end their lives when they have weeks or months to live, and that, if enacted, it will not touch anyone who does not want it. 

I do not believe that and, it seems, neither do the authors of the Bill. Why else would they elect to name it the Assisted Dying Bill instead of the assisted suicide Bill? If it is truly concerned only with personal autonomy and choice, surely that should be celebrated and clear.

By avoiding the term “assisted suicide”, the Bill circumvents the framework of measures in place to review, monitor and prevent other forms of suicide. It seeks to exclude deaths under the Bill from the general requirement for a coroner’s inquest to be conducted where suicide is considered a possible cause of death. It contains a provision for publication of annual statistics of “assisted deaths” separate from the established arrangements for collecting and publishing statistics on deaths by suicide. It provides for a death under the Bill to be recorded by the registrar as an “assisted death”.

I have a question for the Minister. This Government, like their predecessors, have a major cross-departmental suicide prevention strategy. It seeks,
“a reduction in the suicide rate in the general population in England”,
and defines suicide as,
“a deliberate act that intentionally ends one’s life”.
In the light of this definition, will the Minister inform us whether, if the Bill were to become law, he anticipates a rise in the suicide rate, and would he expect the suicide prevention strategy to contain measures to reduce the numbers in this group intentionally ending their own lives?

We all, in this House and outside, understand the word “suicide”. It centres on the individual. The act of suicide is the responsibility of the person who commits it, and no other. It is impossible to commit suicide without first consenting to do so. The same does not apply to the word “dying”.

Assisted dying is practised in Belgium, the Netherlands and elsewhere. Whatever the initial intentions were, decisions to end life in those places are now not taken only by the individual. It is not an autonomous act. The slippery slope is oiled by the vague euphemism of “assisted dying”. Disabled people are rightly frightened that the Bill, as currently named, puts them at risk. ... “Assisted suicide” makes it clear that only the individual may instigate and control the process leading to an early, state-sanctioned death. I urge noble Lords to support this argument.

Baroness Campbell's second speech in the House of Lords - January 16, 2015. 

Baroness Campbell speaking to the
Not Dead Yet UK rally in July 2014.
I thank the Minister. My Lords, there are many reasons why I strongly oppose the Bill and why I have spoken against it in the past. But one of the most important reasons why I oppose the Bill is the definition of terminal illness and how many months, weeks or years we have to live. The definition in the Bill gives rise to uncertainty and is therefore terribly open to misinterpretation and abuse. Proponents of the Bill claim that “disabled” and “terminally ill” are distinct from one another. We are told that disabled people can be assured that the Bill is not intended to apply to them.

I am not reassured, and I beg the patience of the House while I explain my reasons.

I have personally worked for more than 20 years with very severely disabled people with life-threatening conditions, great numbers of them with the definition of terminal illness. I know about terminal illness—believe me, I know. I know personally and professionally. ...

I am fearful of the Bill not least because terminal illness is defined as an
“inevitably progressive condition which cannot be reversed by treatment”.
That definition could equally apply to many disabilities, my own included. It reinforces confusion between terminal illness and disability. The fear is that disabled people with progressive conditions will fall within the scope of the Bill. The clause on terminal illness does nothing to dispel that fear.

I remind your Lordships that not a single organisation of disabled or terminally ill people is actively campaigning for this legislation. We need to ask ourselves why. Why will they not campaign for a Bill that gives them autonomy to choose the time when they are to die? On the contrary, growing numbers of national charities are coming out to campaign against it. For example, Scope and Disability Rights UK, which have thousands of members who have progressive conditions, are also joining grass-roots networks of disabled people such as Not Dead Yet UK and the Disabled People’s Network. They all agree that it is impossible to create clear blue water between disability and terminal illness and as regards how many months until one might die. ...

The definition of terminal illness in the Bill starts from:
“an inevitably progressive condition which cannot be reversed by treatment (a ‘terminal illness’)”,
from which the person,
“is reasonably expected to die within six months”.
The Bill adds the caveat:
“Treatment which only relieves the symptoms of an inevitably progressive condition temporarily is not to be regarded as treatment which can reverse that condition”.
I therefore looked at who the Bill might encompass. The brain, eyes, lungs, kidneys, pancreas, joints and nerves can all be subject to “inevitably progressive” conditions deteriorating at widely differing rates. Various forms of cancer, heart disease and neurological conditions can fit the criteria for “inevitably progressive” at some stages.

Children and young people are born and are surviving with a variety of life-limiting conditions for which the prognosis is very uncertain. Overall, significant numbers of children and adults fall within categories to which the definition,
“an inevitably progressive condition which cannot be reversed by treatment”,
is applicable. I found that it is only the fact that most are not,
“reasonably expected to die within six months”,
that keeps them outside the scope of the Bill. That is no protection at all, and I will explain why.

It would take only a chest infection or a small change in my muscle capacity for me to be put at risk. Throughout these debates we have heard from the noble Baroness, Lady Finlay, and from other noble Lords in the medical profession who are far more qualified than I, how prognosis is unreliable and that individual life expectancy is virtually impossible to predict with any accuracy. The catch-all of six months sends the invidious message that once you are down, you are on your way out, that once death is on the agenda of life, it outweighs every other consideration. For any newly diagnosed individual, it allows the early seeds of fear and doubt to be sown, perhaps by the individual, perhaps by family and friends, or perhaps by both. Words of hope and encouragement will have to compete against advice and expectation to shop around for a doctor willing to give a prognosis of six months or less. It invites everyone involved in the care and support of the individual to do less than their best. It is hard to believe in the value of life for a person who has been deprived of that belief themselves.

As someone who has come close to death on several occasions during my childhood and adult life, I know how essential it is to have a positive outlook. I am only too aware that there are times, sometimes long periods of time, when one grows weary and one’s spirits are low. One believes that one is going to die. That can be for weeks or even months. Has no one heard of fluctuation? When and if you get through that period and if, as in my case, a new ventilation system is suddenly developed, you get better again. Perhaps you have a week, a month or, as in my case, you have another two years. However, during the weary low period when everyone expects that this is the time when you are going to die, you could easily take advantage of an assisted dying exit.

Other disabled and terminally ill people have spoken of enduring such periods for years before their spirits finally lift. People felt that they were going to die. They do not take out pensions. I can tell noble Lords that I do not have a pension. Why is that? It is because everyone was telling me that I was going to die. Please remember that when I want a free lunch.

What pulls me and others through those periods—there are hundreds of others; do not believe that this Bill is for the few because I know of many who would fit these criteria—is the unfailing support, encouragement, love and understanding of those around us, both professionals and friends. It is seeing their efforts and determination to make one feel better, to do what they can—such as invent another ventilator—whatever it takes and whatever the prognosis, that lifts one out of oneself step by step. It makes one want to participate in a shared endeavour and make the best of whatever time is left. Hope is a great healer. When we cannot heal, it is at least a balm and a great comfort.

I am fortunate in knowing that those around me will always do their best for me. They include amazing doctors and nurses who have treated and cared for me. I know that their focus will always be on making my life better, not on providing me with another option. I know that they will always be searching for ways to improve the treatments and the technology to care for me, and I am grateful that I am here because of them. Each time my body weakens, they find another aid, adaptation or medicine which might compensate. Metaphorically, every time I approach life’s finishing line, those doctors and nurses do their damnedest to push it further away again. The ventilator I am using now is one example of that. It is this newest invention in ventilation technique that is preventing me having a tracheostomy. I cannot have a tracheostomy because, if I do, I will never speak again. Can noble Lords really imagine that and would they want it? Well, perhaps some might.

Others are not so fortunate in the medical care that they receive, in the support that they get from their families and in the social care available to them to help them live with serious illness and disability. We need to remember that, especially now, when economic austerity has diminished the quality of care and support that one can expect. We should avoid the unthinking assumptions that the lives that we live are the lives that others live. Many seriously ill people’s experience of life is not about exercising autonomous control; it is more about being done to than doing. The Bill has all the makings of a law for the strong at the expense of the weak.

Last weekend, I went to see the film “The Theory of Everything”, a very engaging and honest biography of Professor Hawking and his contribution to theoretical physics. The film closes with Stephen speaking to a group of the most distinguished scientists. He had outlived his sell-by date by 52 years. He was often in the state of terminal progression, but he is still here. In fact, we are both in competition to see who lives the longest. I was deeply moved when he said, “However difficult life may seem, there is always something that someone can do and succeed at”. I have lived my life according to that belief, which is why I am here with your Lordships today. We do not walk that path alone; it requires everyone’s optimism and belief in us.

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