Square Deal on Dying

By Nick Boles, October 19, 2017

We sat around his bed, perching on the sides as we used to do each Christmas Day as children when opening our stockings. He lay propped up on the pillows, tanned, his eyes shining, with a full head of nearly white hair, the only sign of his illness being the transparent tube carrying oxygen that snaked out of his nostrils and across the counterpane to the metal bottles on the floor. The vicar from St James the Great in Talaton, where he was church warden for many years, conducted a short service before giving him communion. And then he turned to each of us with a few particular words of farewell, knowing exactly what to say to make each of us feel singled out as a special object of his love and pride.

In a final private chat with my stepmother, he suggested and she agreed that the time had come for the oxygen to be switched off. The district nurses came, made him comfortable, and gave him the generous dose of sedation that would help him slide from consciousness into sleep. We took turns to sit with him, his breath rasping horribly, but no sign of distress in his face. It was my brother who was with him at the end. In the middle of the night, in the house he loved, with his family around him, sure in his faith, and at peace, my father died. He was 88.

Until recently, like most Members of Parliament, I have opposed proposals for reform of the laws relating to “assisted dying” and shared many of the concerns of those who oppose it still. My greatest concern was the idea that people with terminal illnesses might worry that they have become a burden on their nearest and dearest, and feel under pressure to take action to bring their lives to an end before they are ready. I was also troubled by the idea that doctors and nurses, who go into medicine to heal the sick and save lives, might be expected to contribute to a process that will bring about death not stave it off. I recognised the deep anxiety of those who champion the interests of disabled people and who fear the creation of a slippery legislative slope which might one day lead to euthanasia for people who are severely disabled but not terminally ill. My opposition to reform of the law is sufficiently recent, and fresh in my memory, that I have nothing but respect for those who are still opposed, and believe that their concerns must be taken seriously and, as far as possible, allayed. But I have changed my mind.

My father was lucky. He had a good death. He had enough time to prepare himself, and to say his goodbyes. When he was ready, thanks to the wonderful care of the district nurses, the end came quickly.  Not everyone is so fortunate. Many are forced to endure appalling and utterly avoidable suffering because the law denies them the right to control the timing and the manner of their passing. It is my own recent experience of serious illness that led me to think about the possibility of death, and to ask myself what I would want if the cancer had become terminal. The answer was simple: I would want control. With a disease that had started at the base of my skull and had penetrated my central nervous system, I had a deep horror of the idea that it might spread to my brain and destroy my mental grasp long before it killed me. If it had come to that, I know that I would have wanted the opportunity to make an active choice, while I was still capable of doing so.

The fundamental purpose of liberal reform through the ages has been to give people greater control over their lives. We believe that no man or woman should be forced to live in servitude. We believe that people should choose those who make laws and govern their country on their behalf. We believe that women should have control over their bodies and be allowed, within limits, to have an abortion. We believe that gay people should be free to marry the person they love. The next great frontier for liberal reform is to give those who are currently condemned to suffer appalling anguish and degradation before death a way to take control of their final moments. As modern medicine develops ever more ways of keeping people with advanced terminal illnesses alive, the constantly expanding possibilities of intervention to prolong life must surely be balanced by a respect for the individual’s desire to shape the quality of that life and determine how it ends.

Noel Conway, who is currently challenging the Suicide Act in the High Court, has described living with Motor Neurone disease as like being ‘entombed’ (1) Currently people like him are faced with an awful set of choices. They can endure the horror of a long drawn out death marked by choking or suffocation. They can conspire with family and friends to take their own lives here in the UK, knowing that it will put the people they love most at risk of prosecution. Or, they can spend thousands of pounds travelling to Dignitas in Switzerland, and accept that they will probably need to arrange their death several months earlier than they would otherwise want, so they are still strong enough to make the trip. Whatever the current law offers, it certainly isn’t justice.

We need a law that respects the humanity of Noel Conway and other people with advanced terminal diseases. We need a law that gives people who are already suffering greatly the comfort of knowing that when the time comes, they will be able to exercise their free will and decide for themselves how their lives should end. We need a law that enshrines as a basic human right the right to dignity in dying.

I do not support euthanasia (whereby a doctor rather initiates the final act that causes death) or assisted suicide (by which I mean helping people who do not face a terminal illness kill themselves.) The law that I want to see enacted is one that would impose strict limits on the right to seek an assisted death (as set out in the bill moved by Lord Falconer in 2014.) It would only apply to people, who are suffering from a terminal illness, who have the mental capacity to make a decision of this nature, and who, according to the independent assessment of two doctors, have less than six months to live. The individual would have to take active steps to initiate the process and would be given comprehensive information about palliative care. A High Court judge would have to be satisfied that they had made a voluntary, clear and settled decision to end their life, with time to consider all other options.

There are many people, living with deeply distressing afflictions, and suffering from a very low quality of life, who would not be able to receive assistance under this law: it would not apply to people with severe depression, or dementia or any other conditions that are not definitively terminal or where the person’s capacity to decide is in doubt. No doctor or nurse would be required to take part in any of the procedures relating to an assisted death, although the relevant health authorities would be required to ensure that people who meet the criteria have access to the necessary assessments, counselling and prescriptions. Every year, the Secretary of State for Health should be required to publish a report analysing the incidence of assisted dying, and checking for evidence of abuse. After ten years, Parliament should hold a debate on assisted dying and be given the chance to indicate through a vote whether they wish the Government to make time for the legislation to be amended, or repealed.

Public opinion already outstrips the instincts of politicians. In 2015, Populus polled 5,000 people and found that 82% supported the change in the law proposed by Lord Falconer (2).  Although most churches oppose assisted dying, 80% of those identifying as Christians in the Populus poll supported the proposed change in the law as does former Archbishop of Canterbury Lord Carey and Archbishop Desmond Tutu. For a long time the medical profession has been implacably opposed to assisted dying. But this is beginning to change. In February 2018, the British Medical Journal reported that a survey of 733 doctors on doctors.net.uk found that 55% supported a change in the law to allow assisted dying (3).

We should not rush this reform. We should take the time to understand people’s anxieties, and do everything we can to reassure them that the safeguards built into the legislation will be robust and secure. But, in time, at some point before the next election, Parliament should be offered the opportunity to debate a revived version of Lord Falconer’s bill. It should of course be a free vote with MPs and peers voting as their consciences dictate. But I would like the Government to follow the example of David Cameron on same sex marriage and introduce the bill to Parliament as a government bill to be debated in government time. Every generation has a chance to extend freedom to those who have been denied it, and to expand the individual’s control over the shape of their lives. This is our chance. We must not duck it.

Notes

(1) The Independent. 2018. Terminally ill man begins appeal against ban on assisted dying. Available at: https://www.independent.co.uk/news/uk/home-news/terminally-ill-man-noel-conway-appeal-court-ban-assisted-dying-euthanasia-a8331281.html

(2) Populus. 2015. Dignity in Dying poll. Available at: https://www.populus.co.uk/wp-content/uploads/2015/12/DIGNITY-IN-DYING-Populus-poll-March-2015-data-tables-with-full-party-crossbreaks.compressed.pdf

(3) The i. 2018. Assisted dying case now ‘stronger than ever’ with majority of doctors now in support. Available at: https://inews.co.uk/news/health/assisted-dying-debate-bmj-doctors-majority-support/

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One Comment

  1. Chris Walsh says:

    I am delighted to see you have changed your mind about assisted dying and I agree with a great deal of what you say in this paper.

    However, I believe there could be a problem with your sentence “The law … would only apply to people, who are suffering from a terminal illness, who have the mental capacity to make a decision of this nature, and who, according to the independent assessment of two doctors, have less than six months to live.

    Taking your own case, if the worst had happened and your mental function had failed to the extent you were unable to make a decision but your life expectancy was 6 months or more, then an assisted death would have been denied to you.

    Perhaps there should be some way of notifying the NHS through a note on the GP’s records that each patient is – or is not – agreeable to assisted dying. A straight-forward question with a signed statement would be sufficient and this would be made available to the treating hospital and relatives of the individual at the time well before 6 months prior to estimated natural death.

    In this way, each individual would be able to make their thoughts known to their GP at any stage of their life when their mental ability is not in doubt. They would, of course be able to change their mind at any time provided their mental health is deemed to be stable.

    There is also the situation where a person may be trapped in a paralised body with no ability to communicate through visual or aural means yet still have a fully operation brain and nervous system.
    This situation may continue for many years supported by medical assistance.

    Speaking personally, I consider that to be akin to purgatory.

    Perhaps there should be a consideration of quality of life in the preconditions for assisted dying.

    I wholeheartedly agree that the law needs to change and we need to think this through carefully before passing legislation. However, it does need to be changed soon.

What do you think?

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