Assisted Dying – My Speech

After an emotional debate on whether Guernsey should set up a working party to look at the introduction of assisted dying, I thought I would publish the speech I made yesterday in the Assembly.  I do so mainly because we have had so many people e-mail and write to us to whom I haven’t responded, that I thought it only right to set out my position on this most difficult subject.  So for the benefit of those who weren’t able to listen yesterday or for those who did but want to read every word here it is:

“Sir, I have found it difficult to put into words why I did not support this Requete nor do I support Propositions 1 to 4.

I have found it difficult because the more I considered my position the more I believed my reasons for doing so differed from many although yesterday I realised I am certainly not alone.  It was also difficult to be satisfied that I had reached the right decision, at least for me, as we have read and listened to the heart wrenching stories of suffering: none of us would wish anyone to suffer.

For helping me with this decision, I also want to add my thanks to the very many people who have taken the time to e-mail or write to let me know of their views.

Sir, I cannot support the first four propositions for two reasons: firstly because I feel that we should not just have capacity legislation in force; we need to also ensure that it is effective.  A working party set up to consider the test for what is effective does not give me the comfort that the legislation would not be properly tested before bringing in assisted dying.

And secondly, the idea that I and obviously others have found difficult to reconcile.  If those essential safeguards are indeed in place and effective, why are the Requerants arguing that only a few people will be eligible to benefit?

Why delude ourselves that it is fair or reasonable that with the appropriate safeguards that assisted dying should not be available to those who truly want to have autonomy?

But that leads me to why I absolutely cannot agree to go down this path without those safeguards in place.  Why I cannot, yet, grant the people of Guernsey what has been described as this crucial aspect of personal autonomy.  However simple this concept appears, having been involved in ascertaining whether someone has the capacity to make a decision, has this autonomy, I was concerned that the complexities were being dismissed as one those clever draftspeople can overcome.  Whilst, we do have excellent professionals and an approach to legal drafting which provides for simpler Laws than the UK, we still need to understand that the Law will need to be interpreted.

This is a complex area and one I wanted to illustrate in my speech so think how pleased I was to note that late yesterday afternoon, I was sent the May edition of the Mental Capacity Report.  This report is sent to members of the Society for Trust and Estate Practitioners, produced by the barristers practising in England and Wales known as 39 Essex Chambers.  In it was a very interesting article entitled “The relationship between autonomy and adult mental capacity in the law of England and Wales”  How timely.

In it the author considers the underlying relationship between autonomy and mental capacity as discussed in various judgments dealing with this issue.  I have decided to go into the arguments raised to illustrate the complexities of what we are discussing.

The author, Paul Skowron, who is a Research Associate on the Wellcome Trust funded Mental Health and Justice project, working at the York Law School, divides the relationship between mental capacity and autonomy into three types identified by judges.  The first is the gatekeeper type where having mental capacity is treated an overriding reason not to interfere with their wishes, not to interfere with a person’s autonomy.  Another type is the insufficiency type where capacity is not enough to be autonomous. Freedom from coercion and undue influence is also needed.  For example in one case, ‘Mrs L’ had capacity and did not wish to bring proceedings for a non-molestation order against her son. Nevertheless, she was found to be “a vulnerable adult whose autonomy has been compromised by a reason other than mental incapacity” so a wide range of injunctions were made restraining him so Mrs L was found both to have capacity and to lack autonomy.

Lastly, the relationship between mental capacity and autonomy can be described as one of “survival”.  Mr Justice Baker said this was when “personal autonomy survives the onset of incapacity.”  But that is not the end of it and the author goes on in his article to say “it does not mean that everyone, regardless of capacity, is so autonomous that the state should not act against their wishes. It merely holds that some people without the relevant capacity might be so autonomous, and that the issue is decided as part of the best interests decision.”

For example, one factor is ‘the strength and consistency of the views being expressed’.  The author says “Fairly often, people without capacity know what they want, want it for intelligible reasons, or would be utterly distraught if what they wanted was disregarded. By softening the link between autonomy and capacity, the survival type allows these things to be taken into account.”

But Mr Skowron concludes “One of the original aims of the Mental Capacity Act introduced in 2005 in the UK was to simplify the law, but it does not appear to have done so.”  There are a wide range of factors that judges take into account when assessing a person’s autonomy and whilst capacity is relevant so, for example, is coercion.

For those who are interested the full article is available albeit for a fee – not to me I hasten to add.

Sir, I mention this as the debate has focused on freedom of choice, “my life my choice”, – if the decision before us were that straightforward I would find this debate a lot less challenging.  But it is not that simple because it is about competing demands – not just the legalities but practicalities too.

Giving due regard to those demands is the most important aspect of government as we must not allow them to be overshadowed by the emotions of the argument.  My feelings of empathy may pull me one way but my conscience says another.

As can be seen from the various Propositions before us, we are on a very long journey.  We have already agreed upon most of the stages of that journey as it will involve the introduction of an effective Capacity Law, non-discrimination and equality legislation for disabled islanders or preferably an Equality Law, the extension of international conventions and an even better palliative care service than we have now.

But what I find is unacceptable from a purely practical point of view is that we are being asked to combine these aims with that of enabling one person to assist another to die.  As I have said it is not the outcome that I have issue with but that these other most essential steps could be in anyway thwarted by association.

I believe there is a real risk of that happening because of the nature of the safeguards required because of the limited number of people to whom the right of assisted dying is being proposed to be given and so inevitably the greater number who will need protection from those safeguards.

It is also not about the person seeking to exercise the right that needs protecting.  It is not just about giving the right to an individual to die but it is also about protecting the ‘third person’ – the one who has the difficult task, even with well-written legislation, of assessing capacity, the one who has to write the prescription, the one who administers it and the family and friends who are left behind.

We are told by supporters that it is “a given” that we should have the very necessary protections for the vulnerable in place before we can move forward but do these four propositions really provide for that?  Do they adequately cover all of those people affected by such a decision?

The letter of comment from the Committee of Health and Social Care, a Committee on which I sit, sets out many such concerns.  As Deputy Soulsby, as President of HSC, will be commenting further I will say no more.

The question I need to answer is do I feel sufficiently reassured by those Propositions to believe these people will be protected by laws, processes and support networks BEFORE anyone is assisted to die.

As a glass full person, some may be surprised Sir by my scepticism – that I feel the need to ensure the safeguards are in place first.  But what has happened is that I have repeatedly, throughout my preparation for this debate, drawn on my own personal experiences both of my family and as a lawyer.  I too do not apologise for this as I believe these experiences are most relevant to this debate.

For 25 years, my primary task, as a solicitor who practised law in England and Wales, used to be discussing death – whether it was with an individual before their demise or afterwards with their family and friends.  For that reason, I am extremely pleased that the most difficult subject of death is being discussed openly with so many people.

During Dying Matters week, or as we call here it here on Guernsey “Going Out with the Tide”, we have an opportunity to break the taboo and stress the importance to talk about what needs to be done in the event of illness, incapacity and death so that our loved ones are aware of our wishes and have the tools to ensure those wishes are carried out.  It is also an opportunity to hear from professionals about what happens when people die, how the body functions in the last days.  Details difficult to hear but important to understand.

Getting people to talk about their ultimate and unavoidable demise, has always been difficult but usually occurs after someone has suffered a loss or an experience which they felt they did not want to go through themselves.  Whether that be someone dying without having made a Will or because, as we have heard over and over recently, their loved one had a painful death.  I have made Wills for people and then attended their funeral only the following week.  I have also helped people who had thought they were going to die a painful death, often because of an HIV diagnosis, only to receive joyful messages from them some 20 years later.

My role was to enable a discussion to, as we use to call it, put “ones affairs in order”.  In the UK, this would include a Will, plans for the funeral and an Enduring Power of Attorney which gave the power to someone to make decisions in respect of financial matters in the event of someone becoming mentally incapable. There was also the advance directive or Living Will which dealt with medical matters.

Together, this suite of documents could enable families to get on with their lives feeling confident they could deal with the eventualities of life.

However, life, or rather death, is not like that.

There have been occasions when I have been in despair over the way in which the law has operated.  I have watched as families fight over assets and debating whether someone had the legal capacity to take a certain action.  I have seen the despair when documents thought to be valid be declared invalid due to a technicality and I have seen well-constructed Wills be overturned because a family member who was excluded had managed to persuade a Court they needed the money.  Despite what the Deputy St Pier said in his speech, I have had to make it clear to clients that they do not have autonomy over their assets either before or after death – they can only give an indication of what they want as nothing can be set in stone.

In particular I have watched the issues around the introduction in the UK of the Lasting Power of Attorney which combines the financial powers of an Enduring Power of Attorney and a health and welfare section which is akin to the Living Will or advance directive.  That legislation has brought untold problems due to the way it has been administered.  One such example was a case where the person ticked two boxes on the form instead of one giving a contradictory instruction of what to do if the donor was in a vegetative state.  This resulted in the provision in the Lasting Power of Attorney being struck out and, if the donor had not been able to make another directive, their wishes would have been ignored.

This leads me on to my second concern.  To explain this I find it easier to refer to a conversation I had last week.  A parishioner asked me to vote for assisted dying advising me that if I did he would not need to go to Switzerland when he could no longer take care of himself.

Even if these propositions are successful, my parishioner would not live to see the legislation nor do I believe he would be eligible as he is a fit octogenarian!  I am concerned about this false expectation as people seem unaware of those who the Requerants intend should benefit from assisted dying.

During this time I have reflected on the life of my cousin who was diagnosed with multiple sclerosis when he was 21.  He was given 6 months to live and so could perhaps be someone who, under the proposed regime, could have been assisted to die.  Instead, knowing his life-expectancy, he successfully completed the 9 months left of his degree course and, whilst not being able to even feed himself, he continued to be the most inspiring person I have ever met for another 21 years of his life.  My Aunt, who cared for him every day, never once advocated assisted dying although later, when she found out how cannabis could have helped him, her anger was immense.

So, as the majority of people will not be able to take advantage of an assisted death, once this is acknowledged will there be the clamour for an extension before even the safeguards are in place?  Will the coming years in this Chamber be ones of twoing and froing from this stated position, raising expectation only to dash them later – and all this whilst essential work which benefits the whole Bailiwick is sidelined.

Or simply should we wait until we have the necessary safeguards – sorely needed – in place and effective – have the continued dialogue over what happens shortly before death, what we need to plan for, how palliative care can help and improve – and then agree and only then agree what if any assisted dying legislation we should have?  Some may say this is kicking the can down the road – something I would never wish to do unless it was right to do so – but this to me is the right time.

So, without safeguards that work, that are thorough and effective, I cannot agree to start a process that has so many uncertainties, with so many people who could be effected without their protection at the forefront.  Considering there are just so many things we need to do to benefit Islanders, I cannot agree to spend money on a fundamentally flawed and expensive process to give help to a few.

There are lessons that I hope we can all learn from this debate and which costs nothing and that is to do our utmost to ensure people do not feel a burden.  To help people to realise how much they are valued.

We also need to reiterate how all these aspects of life and death intertwine and that the horror stories we have heard are not what we or are families and friends are going to face – that we as a government are providing the care to make this very unlikely.  Let’s us explain in greater detail what is available and to remove that fear at least.

Saying that Sir I cannot sit down until I have complimented our Palliative Care on this Island.  All our healthcare staff have had the training to provide such care and we have an excellent Specialist Palliative Care team for the last weeks and days of life such care which can, of course, be improved.

And for me, personally, I put my faith in their care and that they will be there for me when I need it rather than having faith that there will be truly effective safeguards in place.

Before I conclude, I should add that, whilst I voted for this Amendment, it was because I wished a clear and straightforward debate not because I can vote for its effect. I should also add that Amendment 7, if it had been successful, made no difference and nor will any amendment which tries to water down the contents any further if it still associates any workstreams with assisted dying.

I cannot agree to a path which can in any way deter us from the so important aims we seek to achieve – they have been and continue to be hard enough to achieve without assisted dying be added in the mix of the goals we seek.”

 

 

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