Assisted Dying Bill [HL]

Baroness Campbell of Surbiton Excerpts

Friday 16th January 2015 Lords Chamber

[Lord Ashton of Hyde (Con)]

My Lords, the noble Baroness, Lady Campbell of Surbiton, has been trying to get in for some time. I think the Committee would like to hear from her.

[Baroness Campbell of Surbiton (CB)]

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.

We have been told time and again that disabled people with life-limiting conditions—and I use that term advisedly because we do not recognise the terms “terminal illness” and “months” or “weeks to live”; but more about that later, under a suitable amendment—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 and terminally people are rightly frightened that the Bill, as currently named, puts them at risk. The purpose of the amendment is to provide some safeguards through the use of plain language. “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.

[Lord Deben (Con)]

My Lords, there is a deep reason why so serious a Bill should be particularly careful about the language it uses. One of the problems we have today is that people use language in order to establish not the truth but a slight version of the truth that they wish to pass off. I hope the House will excuse me if I use what may appear to be a flippant example but I think it sums it up.

In the register of interests, I declare that I am the chairman of the Association of Professional Financial Advisers. The Financial Services Authority decided to call the changes that it wanted in the industry, “treating customers fairly”. This was done to suggest that anybody who did not agree with every fact in the policy would be treating customers unfairly. It was designed to have a particular effect.

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[Noble Lords]

Hear, hear.

[Baroness Campbell of Surbiton]

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. That is why I wanted to give noble Lords my reasons today, and to take my time to do this, because I feel that it is one of the most important parts of the Bill that we must make safe. I know that the noble and learned Lord, Lord Falconer, would agree with me that we must make this safe for people who may die, who may not otherwise, because of this definition and because of the number of weeks that we are supposed to live or die. That is why I support the noble Baroness, Lady Finlay, and the noble Lord, Lord Carlile, on a reduction of the time limits.

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. However, the Bill is before us now, and I have to accept that I need to do what I can to limit the harm that it would cause to terminally ill and disabled people were it to be enacted. That is why I support the amendment moved by the noble Baroness, Lady Finlay, and any other amendment that would introduce a shorter time limit as a safeguard to the central part of the Bill.

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.

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[Lord Low of Dalston]

My Lords, I wish to make three brief points. The noble Baroness, Lady Campbell, has told us that disabled people are worried that disability will be equated with terminal illness and that they will be made the subject of “do not resuscitate” notices—indeed, that this happens or, at least, has happened in particular cases. Like all of us, I hugely respect the sincerity of the noble Baroness and appreciate the strength and eloquence of her advocacy, but I genuinely believe that the fears that she has expressed, that this Bill will make the situation worse for disabled people, are misplaced.

I say this for two reasons. First, it is very important that we should be clear that the disabled person has to ask before they can be offered the facilities of this Bill to end their life. Secondly, they need to make an act of conscious choice before they avail themselves of these facilities. With all the safeguards in the Bill, it will actually make the situation of disabled people better.

Thirdly, it is further argued that, in consequence of these fears, disabled people are strongly opposed to this legislation. However, in actual fact, a recent YouGov poll found that 79% of registered disabled people—that is nearly four-fifths, very much in line with the rest of the population—support assisted dying for adults of sound mind with a terminal illness. So, for all these reasons, with the greatest respect, I believe that the arguments that have been advanced on behalf of disabled people are misconceived.

[Baroness Campbell of Surbiton]

My Lords, I feel urged to come in here after the noble Lord, Lord Low, with whom I have worked and whom I have known for many years. We have discussed this subject on numerous occasions, and noble Lords will imagine that we have had some quite heated discussions. I shall add a little bit of information to add clarification. The disability community is made up of people with terminal illnesses. Outside the House today, as noble Lords will know if they have gone out to talk to them, are people sitting in their wheelchairs with terminal conditions saying, “No, this is not about choice—this is not about me asking”. They have often been in situations when they have felt so low that they felt that they had no options; their social care and healthcare was bad and they wanted to die. They could have taken advantage of the Bill proposed by the noble and learned Lord, Lord Falconer, because they have a terminal illness. There are at least six people outside these walls today in the freezing cold who have a terminal illness.

There are many people with terminal illnesses in the disability community, and those people have come together to demand that on this Bill we should slow down and think again. They have campaigned for choice and autonomy all their lives, and now they are saying, no, this is not about choice—and we have to listen to them. So please do not tell me that this is not about disabled people. It is very much about us because we are the people with experience of these issues. With the greatest respect, many people who are campaigning for this measure have not experienced these issues. They are people in control of their lives. They are people who fear becoming what they see us as. So I ask, please, that disabled people should be very much a central part of this debate. We have to listen to what they say, even if we do not like what they have to say.

I wish also to make a point of clarification. There seems to be a misunderstanding among noble Lords that I think that terminal illness is about having a chest infection. If I thought that, I would think that I was dying at least three times a year. I am not talking about that. I am talking about life-threatening terminal situations, such as muscle deterioration in the throat, whereby you can no longer eat or drink. That is what I have. Part of the GMC’s guidance on terminal illness concerns that process. I refer also to muscle deterioration within the lungs so that you can no longer breathe. That is terminal. Muscle deterioration around the heart is terminal. COPD is terminal. People with these conditions are part of the disabled community. They are out there—go and talk to them. Answer the letters from disabled people who say that this is not about choice. Ask them why they are saying this. Do not make assumptions about them. This is why I felt that I had to intervene at this point.

[Lord Low of Dalston]

If people with terminal illnesses do not wish to take advantage of the provisions of this legislation, what is there about it that forces or requires them to do so?

[Baroness Campbell of Surbiton]

My Lords, the answer to the noble Lord’s question is that they fear that they will take advantage of this legislation when they are at their lowest with no choice. The noble Lord, Lord Low, will understand as much as I do about terminal situations where you do not have choices. These people have said that they do not want this Bill because they know that they might take advantage of it.

[Lord Alton of Liverpool]

Before my noble friend completes her remarks, has she had a chance to read the briefing that was sent to Members of your Lordships’ House only yesterday by the disabled people’s charity Scope, which says—this reinforces the point she has just made—that in the US state of Washington, where assisted dying is legal,

“61% of those requesting to end their lives did so because they felt a burden on friends, family or care-givers”?

Scope says in its briefing to your Lordships in support of the amendments we are considering:

“The definition in the Bill of ‘reasonably expected to die within six months’ would capture many disabled people”.

[Baroness Campbell of Surbiton]

I think that was a question to me from the noble Lord, Lord Alton. The answer is, yes, I did know about Scope’s role. In fact, Scope approached me to ask me to emphasise issues around prognosis in the debate today.

[Lord McColl of Dulwich (Con)]

My Lords—