Book review: Hard Day’s Journey Into Night, by Noel Conway

BOOK REVIEW: HARD DAYS’ JOURNEY INTO NIGHT – Memoirs of an MND warrior and human rights campaigner

The subtitle of Noel Conway‘s book “Hard Days’ Journey into Night” is “Memoirs of an MND warrior and human rights campaigner”. Noel was certainly both of these, but the subtitle really does not do justice to either the book or to Noel. In fact, this book has several themes each of which would on its own make it a good read.

During a long career as a consultant clinical neurologist, I have talked to many dozens of people to explain their diagnosis of MND and I am familiar with their various outward reactions – but one is often uncertain what they are thinking. Noel describes how the neurologist, with a quiet, dignified and professional manner, confirmed to him the diagnosis of MND that Noel had already suspected. Noel sat unmoving with Carol’s hand in his, screaming inside his head “I know what I’ve got! That’s not what I want to know!” In an equally quiet and dignified voice, Noel asked the all important question “How long have I got?” So starts the story of an extraordinary journey from able-bodied to paralysed from the neck down. A journey that at various times has been a rollercoaster of emotions both highs and lows, physical challenges to be either overcome or circumvented, good friends and less good friends, and carers who cared and those that didn’t seem to; losing the ability to do some things and finding other meaningful activities to replace them.

In those early days Noel had access to all the facts and statistics about MND, but what he could not find and what he really wanted to know was how people with MND actually felt, how they lived with it, and how they coped. Even back then the seed of this book was sown – the idea of providing a narrative of a life with MND. This book provides just that – the story of Noel’s extraordinary and inspiring life with Carol by his side and a story of the people who helped him and continue to help him to lead the best life he can, people to whom he dedicates the book. For someone with MND or for members of their family, this book would be of interest and helpful for this reason alone.

But there is another major and fascinating theme to this book which is Noel’s legal challenge concerning the current law on assisted dying as set out in the 1961 Suicide Act. Noel’s account of his battles (so far – the war is not over yet by any means) is an enthralling read and he provides an excellent review of the arguments for and against a change in the law. He vividly depicts the heavy guns on either side, seen through the eyes of someone fighting for his life (and for his right to decide its end) in the front line. If the law on assisted dying does in time change (as many of us hope), it will be thanks to the hard work, courage and persistence of those like Noel. This part of the book would be a good read for anyone interested in the issues involved.

Quite apart from the fascinating accounts of Noel’s battles with MND and with the law, we also have an account of his early working class upbringing in “the grim industrial landscape of the North” and of the determination, enterprise and sheer hard work that lead eventually to a successful and well-regarded career in further education. Noel from a young age was acutely aware of the unfairness and inequality in society, but unlike so many of us who shrug and say “well what can we do?” he became socially and politically active. Noel relates the evolution of his activism in local politics, as trade union officer, in secularism to reduce undue religious influence in society, in opposition to fascism and racism, in labour party politics and more recently human rights issues, such as law change on assisted dying.

I first came to know Noel, not through any medical problem, but due to our shared interest in campaigning with Humanists UK to eliminate inappropriate religious influence in public life, be it bishops in the House of Lords or State-funded faith schools.

As if all these different lives crammed into one were not enough, Noel also describes with relish his love of the outdoors including walking, climbing, mountaineering, skiing and cycling – all of which have been progressively eliminated from his life by muscle weakness as has even his love of cooking. But the muscle that Noel still flexes with gusto and to great effect is the muscle of his fierce intellect and his passion for languages and for books and for writing. While too weak to use a keyboard, Noel has written (using voice recognition software) and published not only “Hard Days’ Journey into Night” but also “Tales from the Hill” a delightful book of short local folklore stories and a number of articles in various publications.

Throughout the book there is a clear sense of Noel’s strong personality. On one hand his kindness, his humour and his love of family and friends and on the other is his fierce determination to confront injustice and unfairness wherever he finds it. This is an inspiring book on many levels.

Dr Simon Nightingale MBBS BSc FRCP MD, Retired Consultant Neurologist

Noel Conway’s report on the campaign for Assisted Dying

For the Hot Potatoes open mike session on 17 January, Noel Conway wrote an update on legal action concerning a change in the law on assisted dying. Noel is unable to attend in person, so the text was read by Simon Nightingale.

Dear colleagues,

Simon has asked me to bring you up-to-date with where we are regarding the assisted dying campaign.

The law on assisted dying: Noel Conway’s talk to the Shropshire Humanist Group

Noel Conway’s talk was presented on his behalf by Simon Nightingale to the Hot Potatoes evening on 18 January. Noel is a member of Shropshire Humanist Group.

By coincidence, we heard on the same day that Noel was given permission to take his case to the Court of Appeal.

The following is a slightly revised version of the talk presented.

Dear Friends,

Simon has asked me to put together a few words for you for your open mic session tonight, which I am happy to do. Hopefully, it will clarify where we are at present with regard to trying to change the law on assisted dying. I would like to be there with you but I find it too difficult to get out in the evening, when it is dark and cold.

The High Court (administrative division) held in the last week of July last year, finally produced its judgment on 5 October. This rejected my claim that the Suicide Act 1961 section 2 is incompatible with Article 8 of the Human Rights Act, undermining my right to personal autonomy, i.e., to an assisted death. The rationale for the judgement was particularly disappointing as I explain below but there was one aspect which was favourable. This concerned the issue of whether the courts were competent institutionally to judge on the matter and not leave it to Parliament, which the previous Supreme Court judgment in the Nicklinson case had.

My legal team argued that it was the job of this court to decide whether it was ‘practically feasible‘ for Parliament to devise a scheme whereby people in my situation i.e. of sound mind, over 18 years, terminally ill with not more than six months to live, could be assisted to die without threatening other weak and vulnerable people. The potential threat to those who are ‘weak and vulnerable’ is the long-standing reason given to support a blanket ban on any form of assisted dying on the grounds that it is not possible to devise any scheme that would protect such a group. My legal team did put forward such a scheme supported by a considerable amount of expert evidence. However, the High Court did not address this question but instead addressed the question of whether Parliament had ‘a proper basis‘ for maintaining the blanket prohibition. Consequently, the High Court did not adequately address the expert witness evidence that we had provided, saying merely that it had referred to some of the evidence that had been provided by us.

The High Court therefore referred to a wide range of evidence, principally provided by opponents of any change to the law, and extended its scope beyond looking at protections for ‘the weak and vulnerable ‘ to the more general arguments of whether (a) it will devalue the sanctity of life principle and, (b) undermine the doctor patient relationship. This is a surprising focus by the High Court, because neither of these issues were considered to be relevant by the Supreme Court in the Nicklinson case, which is held to be the most recent senior legal authority on the whole argument. Indeed, the High Court produced lengthy quotes and references from organisations like the British Medical Association, the British Geriatrics Society and the organisation, Not Dead Yet, a leading opponent campaign group established by Baroness Campbell, who was also quoted. The weight of evidence selected and the comments and conclusions drawn by the High Court, therefore, were extremely biased and one-sided.

The judgment also dismissed any notion that assisted dying bore any resemblance to the argument surrounding refusal to accept further medical intervention or the withdrawal of such. It took the view that it was not possible to identify when people with MND are in the final six months’ stages of life, preferring to accept the view of Baroness Finlay, a palliative care expert (and longstanding campaigner against assisted dying), rather than Prof Barnes, an MND expert, who concludes that whilst prognosis of death is difficult to establish it is not impossible with appropriate clinical experience.

In 2010, following the Debbie Purdy case, the Director of Public Prosecutions introduced guidelines which clarified that people who had helped others to go to Switzerland for assisted dying (or to end their life at home) would not be automatically prosecuted under section 2 of the Suicide Act. Each case would be investigated, and where there was evidence that a crime had taken place, prosecutors would then have to decide, taking into account the range of factors in the guidance, whether or not it was in the public interest to prosecute. Broadly speaking, where it was established that people have acted compassionately and not for personal gain or malice, they will not be prosecuted. Many people regard this as exposing ‘the weak and vulnerable’ to much greater danger of criminal abuse than the safeguards proposed by Lord Falconer under the Assisted Dying Bill, and by my legal team. This important issue was not raised or discussed by the High Court.

Consequently, for many of the reasons outlined above and others, my legal team believe we have a strong case to appeal the judgement. Whether we can proceed to the Appeal Court will be decided at a hearing on 18 January.

Latest Good News! We have just heard that the Permission to Appeal Hearing approved our request to go to the Appeal Court. This is an excellent result especially as the Court approved all 7 grounds for appeal, thus vindicating our legal team’s core argument that the High Court in July had directed itself to the wrong issue.

Noel Conway, 20 January 2018

Dying Matters Awareness Week

Many humanists are interested in matters relating to death and dying for various reasons, such as humanist funerals, topical issues such as assisted dying and existential questions about life and death. During Dying Matters Awareness Week (8-14th May), there are three public events in Shropshire.

SHREWSBURY 10TH MAY
On Wednesday 10th of May at 6.60pm, Dignity and Dying, who are supporting Noel Conway in his high court action to enable assisted dying, are holding a meeting for a new Shropshire branch in the Hobbs room of Shrewsbury Library.

SHREWSBURY 12TH MAY
Dying Matters Shropshire is holding a public event in the Square Shrewsbury on Friday 12th May from 10am to 2pm. There will be crafts, a talking about death & dying cafe, florist and so much more, encouraging the public to talk about death and dying asking people what they want to do before they die, and how they would like to be remembered. Simon Nightingale will be there (in the morning) to answer questions abut humanism and humanist funerals. Come and join us! For more details see here.

TELFORD 12TH MAY
Dying Matters Shropshire is also holding a public event called “You only Die Once” in the Telford Shopping Centre (TF3 4BX) from 9 am to 6pm on Friday 12th May. It will outside Pandora, which is near Marks and Spencer. There will be representatives from community health teams, Samaritans, Hospice etc. Humanism will be represented there with a table display staffed by some of the local humanist funeral celebrants, including Sue Falder and Simon Nightingale (in the afternoon). Come and join us.

Noel Conway is seeking funding for his legal fight on assisted dying

A couple of months ago we highlighted our member Noel Conway, who has motor neurone disease and  is currently seeking, with Dignity in Dying, a judicial review that could result in a change to the law on assisted dying.

He is seeking funding for his legal case, and you can donate at Crowdfunder. Shropshire Humanist Group has made a donation of £100 from group funds.

Noel Conway on assisted dying and his application for judicial review

Noel Conway is a Shropshire Humanist Group member who has motor neurone disease. He is currently seeking, with Dignity in Dying, a judicial review that could result in a change to the law on assisted dying. Simon Nightingale presented this contribution on his behalf to our Hot Potatoes evening on 19 January. He asks people to write to their MPs in support.

Dear colleagues, Simon has asked me to talk briefly on the issue of assisted dying. If this paper is being read to you it is because I’m not well enough to attend and I do apologise for not being able to be with you.

As you may have noticed in the media recently, I am chief claimant seeking a judicial review to change the law with regard to assisted dying. I’m sure that most of you will be aware what the main issues and arguments are. By the Suicide Act 1961, suicide was decriminalised. However a new offence was introduced making it illegal for anyone to assist another in committing suicide. Specific reference was made to health practitioners and medical professionals. The penalty for providing such assistance is a maximum of 14 years in prison. I’m working with the campaign organisation Dignity in Dying to change the law so that terminally ill people like myself can receive assistance to die in a humane and dignified way. The legal challenge to current British law rests on the argument that the Suicide Act 1961 is incompatible with article 8 of the European Convention on Human Rights 1998 which provides a right to private life that the European Court in Strasbourg since 2011 has held means a Right to make decisions about the end of your life and your death.

There does of course need to be provision to protect vulnerable people from abuse. Consequently, the proposed changes are limited to those who are terminally ill and likely to die within six months. Two doctors must confirm this and that the person is mentally competent to make such a decision for him or herself. The law will only apply to people over the age of 18 years who have made a clear declaration that is their wish. A High Court judge must also confirm that each individual case is free from undue influence and pressure. Furthermore the individual must be able to administer a lethal dose him or herself. This is not euthanasia.

The attempt to introduce an assisted dying law in Britain is not new. There have been a number of legal and parliamentary attempts since 2002. In each case some progress has been made. A significant development was a legal challenge by Debbie Purdy, who had multiple sclerosis, in 2008-09 to seek clarity on how the law on assisted suicide was applied by the Crown Prosecution Service – she wanted to have a better understanding of how her husband was likely to be treated if he supported her to have an assisted death overseas (for example by travelling with her and providing moral support). The Supreme Court directed the DPP to introduce guidelines for anyone who assisted another to die on compassionate grounds by for example helping them to go abroad, for example, Switzerland where there is an assisted dying facility. A prosecuting policy now exists for this purpose but the courts have emphasised this has not decriminalised assisted dying in the UK and each case must be investigated individually. To date no one has been prosecuted by helping their loved ones obtain an assisted death in Switzerland. However, it is still clearly an offence for a doctor to prescribe, advise or assist in assisted dying in the UK.

The BHA has supported these attempts, the most recent of which was that by Tony Nicklinson in 2014. Tony Nicklinson had locked in syndrome after having a stroke in the mid-2000s and could only move his head. Although his claim that UK law was incompatible with his basic human rights was rejected, the Supreme Court showed a majority of the nine law Lords had tremendous sympathy for his situation. Two would have ruled in his favour and another three declared that whilst the court could rule on assisted dying, Parliament should first have the opportunity to address the issue. They took the view that it was preferable for Parliament to rule where there was such a conflict between two apparently conflicting human rights, the right to life versus the right to die. However, they stated clearly that if Parliament did not fully engage with the issue of assisted dying, then it would be for the courts to do so and they expected in that event that there would likely be a future and successful challenge made.

As you will recall, the Falconer Bill, which received majority support in the House of Lords was overtaken by the General Election of 2015. Rob Marris reintroduced an identical bill to the House of Commons in autumn last year where it was defeated by a large majority of 188 to 330. A further Bill was introduced by Lord Hayward in June last year but this has not received a second reading nor is it likely to do so. Consequently, the blanket ban on assisted dying remains in Britain and since Parliament has not provided for the terminally ill as the Supreme Court Justices signalled, the initiative must return to the courts.

It must be said that it will still be possible for Parliament to ignore any ruling by the Supreme Court that UK law is not compatible with article 8 of the Human Rights Act 1998. It is essential therefore that the legal case is accompanied by a robust media campaign to change the law and I would urge all those of you who support it to campaign locally by contacting the MP for Shrewsbury and Atcham, Daniel Kawyczinski, who has so far opposed any change in the law. You can also join Dignity in Dying or sign up to its email list or facebook or twitter for regular updates.

Although the House of Commons has proven particularly unsupportive, though not the House of Lords, there is consistent and robust evidence to show that 80% of the electorate in the UK support assisted dying. Despite this, change will not be easy given the opposition of three powerful vested interests: the Church of England, the British Medical Association and pressure groups representing the disabled such as Not Dead Yet.

As a humanist, I’m committed to a rationalist and humane perspective and support all measures which are not to the detriment of others. I have been a supporter of the principle of assisted dying for many years. Now that I find myself terminally ill with MND and perhaps less than 12 months to live I am even more of the view that a change in the law is essential in a civilised and humane society.

Meeting report: Assisted Dying

On 25th June, Shropshire Humanist Group organised a meeting to look at the complex issue of Assisted Dying.  A group whose views represented practically the whole spectrum of opinion on this topic listened with great interest to a presentation by Simon Nightingale, a consultant neurologist, on the current situation.

He explored the meaning of the phrase `assisted dying’ and outlined the legal situation currently where `assisting suicide’ is a crime whereas `not preventing suicide’ is not. The proposed changes to the law, he pointed out, had inconsistencies and there were phrases such as `terminal’ and `unbearable distress’ which are open to more than one interpretation.

Moral questions involved in the subject include the instinctive human opposition to killing another, questions of personal autonomy and arguments about the `slippery slope’ from voluntary to involuntary euthanasia.  And, although a majority of public opinion is in favour of changing the law, Simon suggested that the number of people such a change might affect is really very low.

There were several doctors in the audience, as well as members of Dignity in Dying, and there was a spirited discussion about the `double effect option’, where higher doses of a pain-killing drug are given to patients with terminal disease, which may in fact (but won’t necessarily) shorten their life.

The fear that attends the idea of terminal illness was felt to be a large factor in people’s wish to have assisted dying as a legal option. But the medics suggested that in their experience, with good palliative care, the reality was in the main quite different and that `quality of life’ was not something which could be judged by other people. We were reminded, too, that doctors and their diagnoses are fallible.

Probably nobody’s mind was changed by taking part in this discussion, but all points of view were listened to with equal respect and everyone found it a thought-provoking and informative evening.

Sue Falder