I have just sent a letter to the politicians via http://www.yesuntiltheend.co.uk/ . This is an important issue and the law NEEDS TO CHANGE.
Please click on the link, watch the short video and then click YES to send the letter.
This is my letter, personalised.
I am writing to let you know I support the Assisted Dying Bill and I want this government, and any future government, to allow time for this issue to be fully debated in the House of Commons.
Parliament needs to act on assisted dying to ensure that fewer dying adults – and their families – face unnecessary suffering at the end of their lives.
Assisted dying, limited to terminally ill, mentally competent adults, should be an option alongside access to good quality end-of-life care. We need a compassionate, strictly safeguarded and clear approach to suffering at the end of life.
It cannot be right that individuals have to take their plight to the courts, or into their own hands without the advice and support of healthcare professionals. A change in the law would bring clarity to the law and provide safety and security for the terminally ill and healthcare professionals.
Above all it will give dying adults peace of mind that the choice of assisted dying is available if their suffering becomes too great for them in their final months of life.
Without a change in the law, terminally ill patients will continue to take decisions without adequate safeguards, whether by travelling to Dignitas to die, ending their lives themselves, or being illegally helped to die by doctors.
The state of Oregon passed an assisted dying law in 1997. There have been no cases of abuse and no calls to extend the law beyond terminal illness. According to Ann Jackson, Executive Director of Oregon Hospice Association from 1988 to 2008, assisted dying “. . .has been responsibly implemented with none of the predicted dire consequences.”
My view is that there is no reason a similar law cannot work safely in the UK.
Two of my brothers had Huntington’s disease (as well as my father and my aunt). One of my brothers lived until this terrible disease finally killed him; not being able to walk, talk, feed himself or even swallow. He was doubly incontinent and had no quality of life. My other brother, Nigel Goodman, did not want to live to become so trapped in his body and suffering in this way. He begged his family and friends to be with him at his death and to help to end his suffering. My Mum assisted his suicide and was initially charged with murder and then aiding and abetting a suicide. She was very alone and she broke the law because Nigel was suffering and he did not want to die alone. The Assisted Dying bill would not have helped her but because of my story I have had many, many people express their views to me of how their hands were tied when their suffering loved ones begged them to help them end their suffering at the end of their lives. How can we be so cruel as to just say, “I’m sorry, I can’t help you.”
I am a holistic therapist and I work in various care-homes. I work with people with locked in syndrome and with MS patients, dementia and other conditions. I see how much love is around these people and that some of them have some sort of quality of life. But this is about CHOICE at the END OF LIFE. The law in Oregon is not abused. With proper safeguards in place we can move forward to be loving people who care as much about a good death as a good life.
Who are we to tell individual people, suffering from a terminal illness, that they have to live and get on with it? We are not God. Each individual case is different. It’s about choice. It’s about human love, kindness and empathy. Please listen to the people.
My view is shared by the overwhelming majority of the British public: “The statistically robust British Social Attitudes survey suggests that a substantial majority of people agree the law should be changed so that terminally ill, if not other people can be assisted to end their own lives.
There have been several other surveys of varied statistical merit but none of these has reported a majority opposed to change” (Ministry of Justice, May 2014)
I believe it is time for Parliament to act, and for the main political parties to show leadership. I would be very interested in hearing your views on a much needed change in the law.
The book includes a foreword by Sir Terry Pratchett and contributions from philosophers, religious leaders, healthcare professionals and people who’ve been personally affected by the current legal status of assisted dying in the UK.
Half of the royalties raised from the sale of the book go towards the campaign for Dignity in Dying.
My family story is included in the book.
- Lesley Close (pictured) whose brother John died at Dignitas has written this blog on the Humanist Life website
- Jo Cartwright Dignity in Dying’s Press Manager has written this article for the Huffington Post
I was thrilled to be invited by the principal of Bromley College, Sam Parrett, to speak to their students about my experience with Huntington’s disease and to have a Question and Answer session on dying with dignity.
Psychology lecturer, Stephen Elworthy gave a presentation on the origins of Huntington’s disease and showed a video of Nancy Wexler’s amazing work in Venezuela. Mrs Parrett then introduced me with what I can only describe as a ‘big up’! She praised me for my charity work, my treks and my book, which she has read and enjoyed. I must admit, I got quite emotional as I listened to her kind words about me.
My lecture was well received and I managed to get through it without too much of a problem. I did get a bit choked up a couple of times and a student in the front row was very emotional too. Thankfully Mr Elworthy was on hand with the tissues! I almost managed to break the microphone as I forgot the battery pack was resting on the lectern. As I walked away from it to pick up a book, the pack flew off of its resting place and fell on the floor, splitting open and throwing the batterys across the room. Oh dear, and the whole lecture was being videoed.
We had a short break and returned for a Q & A on Dying with Dignity. I spoke about Lord Falconer’s assisted dying bill and explained what it would and would not cover. Many of the concerns from the audience were about people who have been diagnosed with a terminal illness who want to die before the illness gets too difficult for them to cope with. The questions were also about people who were no longer competent to make that choice for themselves. There seemed to be a strong view that these people should be allowed to end their lives.
I totally understand and agree with their concerns and Lord Falconer’s assisted dying bill does not cover this. But the bill is a step in the right direction and I hope and pray that the law is changed.
The assisted dying bill WOULD
- Provide safeguarded choice and control to terminally ill adults and prevent prolonged suffering among these dying adults who want to have choice over how and when they die.
- Ensure that terminally ill adults who have assistance to die do so having met clear pre-determined criteria and have explored all their alternatives; rather than as at present, in secret, when checks are only made after someone dies (as set out in the prosecuting policy on assisted suicide).
The assisted dying bill WOULD NOT
- Legalise assisted suicide for people who are not dying (for example disabled people or older people).
- Legalise voluntary euthanasia where a doctor administers the life-ending medication. Under the Assisted Dying Bill the person choosing an assistance to die would take the final action to end their life, by taking a prescribed life-ending medication.
- Legalise a system where the person being directly helped to die is no longer competent to make that choice for themselves. This Assisted Dying Bill would only apply to adults with mental capacity both at the time of their request and at the time of their death.
I am a member of Dignity in Dying, a national campaign and membership organisation with over 25,000 active supporters campaigning to legalise assisted dying, within upfront safeguards, for terminally ill, mentally competent adults.
Please join the campaign – go to http://www.dignityindying.org.uk
The session ended with the signing of some books and a couple of photos for a press release. I was presented with the most gorgeous paperweight by the college as a mark of their gratitude, which I love and will display with pride. A couple of the students came up to me with a big hug to share, which was lovely, and two of the colleges professors (I think that’s what they call college teachers, or is it Lecturers?) congratulated me on my talk and suggested that they would like me to speak to their students, so watch this space, I hope to be invited back again 🙂
The college has purchased a few copies of my book, Hummingbird, for its library.
Hummingbird book is available on Amazon. http://amzn.to/17egMgv The college is writing a press release and below are comments from two of the students who are both studying on the Level 3 Health & Social Care course.
“Deborah’s story was eye opening, heart-warming and emotional – I hung on her every word! I want to work in nursing and I’ve learnt so much from Deborah today about Huntington’s Disease.” Siobhan
“It made me realise the ins and outs of Huntington’s Disease and how it is passed on through families. I hope to use this knowledge in my work placement with people with disabilities.” Jade