“Planning for the end of life is something that few of us want to think about when we’re healthy. Lots of us don’t consider how we might want to be cared for until we witness the death of a loved one, or experience the first symptoms of an illness. Yet when we start to think about illness or our own deaths…”
Esther Rantzen, Patron of Compassion in Dying
Imagine that upon waking you can’t move your body or speak but you can hear everything in the room around you that is happening. Maybe there is a doctor having a conversation with a loved one and you realise they are speaking about you, but you cannot alert them to your presence.
You cannot communicate what you need: that you feel unbearable pain and that you are deeply afraid.
If you have ever suffered from sleep paralysis, a condition that occurs between sleep and waking, where you are conscious but can’t move, then you have experienced a small glimpse of just how frightening it can be, to not be able to shout out when you want to scream.
Fortunately, sleep paralysis only lasts seconds, whereas pseudocoma, otherwise known as locked-in syndrome, is a permanent paralysis where the patient can only move their eyes. Pseudocoma usually occurs as a result of a stroke or brain trauma.
The condition was brought to mainstream attention in the 1Wycombe, Beaconsfield & South Bucks > News7 book, and 2007 film, The Diving Bell and the Butterfly, an account of the experience of Jean-Dominique Bauby, the editor of Elle magazine in France, who suffered a massive stroke at the age of 43 and awakened to locked-in syndrome.
Bauby narrated the entire book to an assistant through the blinking of his left eyelid.
82% of the public support the choice of assisted dying for the terminally ill
For many people, the thought of locked-in syndrome is understandably terrifying and they would rather make the choice to end their life than endure the suffering.
Huntington’s disease is genetic and causes the death of brain cells which results in cognitive decline, difficulty in swallowing, breathing, speaking and moving. People living with the fatal disease can find the latter stages distressing and difficult to deal with.
Amyotrophic lateral sclerosis (ALS), is a form of motor neurone disease (MND) that affects the messaging from the motor neurons in the brain. This results in the loss of voluntary control of muscles and people with the disease will ultimately lose the ability to speak, move, eat and breathe.
Also, most forms of cancer will result in pain that is difficult to manage.
There are many diseases that can be distressing for a person to deal with and when facing an extreme level of both pain and suffering, then death can feel like a welcome relief.
The ability to take back control over an illness that cannot be controlled is a person’s way of coping and enables them to face death with dignity.
Assisted dying is a vast ethical discussion with no easy answers but should it not be a person’s right to choose how they deal with their terminal illness, and inevitable death?
Noel Conway is a campaigner for assisted dying, as he faces the latter stages of ALS. He only has movement in his head, neck and right hand, and spends up to 23 hours a day on a ventilator and says that he feels ‘entombed’ by his illness.
In June 2018, Noel had his case rejected by the Court of Appeal and his intention is to now take his case to the Supreme Court to continue the campaign.
Noel commented after the hearing “I will keep fighting for myself and all terminally-ill people who want the right to die peacefully, with dignity and on our own terms.”
High-profile supporters of Noel’s case include Sir Patrick Stewart and Prue Leith, who watched her brother David suffer through terminal bone cancer.
Although the person who chooses to end their life is in control and must be mentally competent to request this, there are differences between assisted dying, assisted suicide and euthanasia3.
Assisted dying is the act of a person who is terminally ill taking control of their death and saying when that should happen. These people do not want to die, they are not ‘suicidal’ but they do want to end their life with dignity and with as little suffering as possible. Life-ending medication is prescribed and the person must take this themselves to end their life.
Assisted suicide is the act of a person who may have either an incurable disease or be disabled and who faces unbearable suffering, although they are not terminally ill when they make the choice to end their life. In this instance, life-ending medication would be prescribed for a person to take to end their ongoing suffering.
Voluntary euthanasia is in the case of a person who is terminally ill or has an incurable disease and is incapable of physically administering their own medication. A doctor administers the life-ending medication at the request of the patient.
The Netherlands, Belgium and Luxemburg all have laws (with varying differences), that allow a person of competent mind, who has an incurable disease and who is experiencing unbearable suffering, to request voluntary euthanasia or medical assistance to die.
Every eight days, a person from the UK travels to Switzerland for a legal assisted death.
In the UK, Dignity in Dying5 are supporting people like Noel Conway to campaign for a new law which allows for assisted dying, to alleviate the suffering of terminally ill people.
To offer people who want to end their life as much protection as possible, their proposed bill includes limitations of:
86% of people in the UK with a disability support a change to the law
Seeing someone you love in pain and being helpless to end their suffering is hard to deal with. When a person has either a terminal or an incurable illness and is suffering a great deal, then this can be just as difficult for the loved ones supporting them.
Some people dealing with a terminally-ill loved one, will go into a state of denial and others will try to micromanage everything in an attempt to regain some control. Regardless of feeling able to cope or not, life does go on for the families and losing a loved one can be just as difficult as facing end-of-life.
What is important to remember, is that the choice of what course of treatment or action to take, can only be made by the person who is ill. This can be difficult for loved ones to accept and let go of.
Direct and open communication is the best way to tackle any difficult situation, and those with a terminal illness should gently prepare their loved ones for what their wishes are.
44% of people in the UK would break the law to help a loved one to die and face 14 years in jail
Just as there are many high-profile campaigns such as Noel Conway and supporters such as Prue Leith and Sir Patrick Stewart, there are also those who are opposed to the idea of any form of assisted dying.
Dr Kevin Yuill operates a website called No Assisted Suicide and believes we should reject any proposed bills in parliament, because:
The website claims that disabled people fear that granting assisted suicide on the basis of physical criteria, undermines their equal treatment.
Baroness Jane Campbell founded Not Dead Yet UK, a network of ‘UK disability activists’ opposed to assisted suicide – all of those involved, including Baroness Campbell, are disabled.
However, according to Dignity in Dying 86% of people with a disability support a change to the law.
Care Not Killing0 are a UK based alliance with the aim of:
Everyone has their own point of view, but no one really knows how they will react to a situation or what is right until it happens to them. Fundamentally, what is being argued about is whether one person has the right to tell another how they can deal with their own illness or how to live their life.
For anyone of competent mind, surely it is their right to decide how they should be treated in the face of their own imminent death or suffering?
79% of religious people support an assisted dying law
A Living Will is now called an Advance Decision.
For any person that has made a choice, that at a future date they do not want to be resuscitated or medically treated, then an Advance Decision can be completed so that if an accident or sudden illness occurs you know that your wishes must be upheld.
Considering how you would want to be treated if you had an unexpected accident or a terminal illness is best done when you have clarity of mind and are not clouded by emotional distress. Therefore, thinking about this long before you need to is a sensible option, much like the choice to carry a Donor Card.
You can read a document here that explains when an Advance Decision11 is legally binding and it offers advice if you want to prepare one.
Age UK have advice on preparing an Advance Decision here.
The campaign group, Compassion in Dying have launched a website called My Decision. This offers an online questionnaire that ends with a legally binding Advance Decision online contract, that covers what your wishes would be if you could not communicate them.
The Compassion in Dying14 website supports people to use their existing rights within the law and offers advice of how to approach this subject with loved ones.
300 terminally-ill people end their life in the UK every year.
Get in touch with your local Radfield Home Care office today and find out more about the support we offer and the difference we can make.