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End of Life Issues - Update: Care Not Killing Newsletter June 2007

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  1. Joffe Bill – one year on

  2. Diane Pretty – five years on

  3. Independent letters

  4. Putting pen to paper

  5. Palliative care on Radio 4

  6. Morphine kills pain not patients

  7. BMJ rejects neonatal euthanasia

  8. Palliative Care Bill progresses

  9. Kelly Taylor drops case

  10. Mental Capacity Act’s code of practice

  11. Living Wills and MedicAlert

  12. Action Points

1 Joffe Bill one year on


It's a year since the Assisted Dying for the Terminally Ill Bill was resoundingly defeated by 148-100 votes in the House of Lords. We played a major role throughout by mobilising ordinary British people, and by putting forward expert spokespeople from disabled people's groups, palliative care groups and faith groups to speak on the media. In the weeks leading up to the debate on 12th May 2006, peers received thousands of letters and, on the actual day of the debate, our representatives presented 102,363 signatures to 10 Downing Street. The day culminated with a rally where hundreds gathered outside the House of Lords in Parliament Square whilst peers debated the Bill. Later in the afternoon, many of our supporters were present in the Lords' public gallery to witness the Bill's defeat.


One year on, we continue to be grateful for what has been achieved. However, we are not complacent. Those who would like to see euthanasia and assisted suicide legalised are mobilising once again and we fully expect another 'Joffe Bill' later this year. Read more


2 Diane Pretty – five years on


Five years ago – on 11th May 2002 – Diane Pretty died of Motor Neurone Disease in a hospice in Luton, having failed in her High Court and European Court battles to obtain immunity from prosecution for her husband, should he assist her in taking her life. Each anniversary of Diane's death seems poignant: last year’s Joffe Bill was scheduled for 12th May, one day after the fourth anniversary. And on 8th May this year, the Independent ran a deeply concerning front page feature, pegged around the fifth anniversary. Read more


3 Independent Letters


Many of you responded to the Independent’s feature. Alison Davies – a patient with spina bifida, hydrocephalus, osteoporosis and emphysema – wrote:


Sir: Your article "The right to choose death" (8 May) was little short of an advertisement for the Dignitas clinic, and a propaganda exercise to persuade suffering and terminally ill people that they will be "dignified" only in death.


I have spina bifida, hydrocephalus, osteoporosis and emphysema, and I use a wheelchair full- time. I am paralysed below the waist, and have no feeling in the right side of my body. I am also doubly incontinent. I suffer severe spinal pain daily, which is not well controlled, even with morphine. When the pain is at its worst I cannot think, move or speak. There is no prospect of recovery, and the pain has been getting steadily worse.


In the mid 1980s, when I was suffering similar pain and doctors (mistakenly as it turned out) thought I didn't have long to live, I decided I wanted to die. It was a settled wish that lasted more than 10 years, and during the first five of those years I several times made serious attempts to end my own life. I was saved only because friends found me in time and had me taken to hospital, where I was treated against my will.


Had assisted suicide or euthanasia been available then, I would definitely have requested it. Had the Dignitas clinic existed then, I would have found a way to go there. I would then have missed the best years of my life, and no one would ever have known that the doctors were wrong in thinking I didn't have long to live, and that the future held something better for me.


Suffering people need better than being encouraged to see death as the best (or only) option. What we need is help and support to live with dignity, until we die naturally.


4 Putting pen to paper


And we continue to encourage you to make your views known to the media. Our website lists contact details for the broadsheet editors, and gives guidance on writing effective letters:


  • Make your letter stand out.

  • Peg your letter around a current affairs issue or refer to a subject on which the newspaper has written recently.

  • Start your letter 'Dear Sir/Madam' or 'Dear Editor'.

  • Keep your letters brief, less than 200 words.

  • After a very brief introduction, make distinct points, ideally in separate paragraphs.

  • Where possible, relate your points to your personal experience.

  • It is better to cover one or two points well than to gloss over multiple points.

  • Avoid being derogatory to those with opposing beliefs.

  • If possible, e-mail your letter in to the newspaper.

  • Include your full name, address and phone number at the end. 

5 Palliative Care on Radio 4


On a more positive media note, recently Radio 4 broadcast a very enlightening programme about palliative care on its weekly Case Notes series. GP presenter Dr Mark Porter interviewed Professor John Ellershaw, consultant in palliative medicine at the Royal Liverpool University Hospitals and Medical Director of the Marie Curie Hospice, who provided particular reassurance on the subject of morphine in end-of- life care. Read more


6 Morphine kills pain not patients


And a major new study has exploded this myth, that doctors use morphine to hasten the end for terminally ill patients. Commenting on the research, Andrew Thorns, Chair of the Ethics Committee of the Association for Palliative Medicine representing 800 UK palliative medicine doctors, said:


Morphine is a safe and effective pain killer. It should never be necessary to give such high doses of morphine for pain that the patient dies as a result…Research and clinical practice shows that good symptom control involves far more than simply prescribing medication and can be achieved without the risk of shortening life.


The study by Estfan and Colleagues at the Taussig Cancer Clinic in Cleveland, USA, was published in Palliative Medicine, and involved 30 patients with severe cancer pain. It demonstrates clearly that when prescribed properly in patients with severe pain, opioid drugs like morphine do not cause respiratory depression. There were no significant changes in objective measures of respiration such as oxygen saturation and CO2 before and after the pain was controlled. Read more


7 BMJ rejects neonatal euthanasia


Other major medical journals are now coming out with editorials on the side of care rather than killing. In a recent British Medical Journal commissioned editorial, professor of paediatrics Kate Costeloe reviewed the situation in the Netherlands, where neonatal euthanasia is occurring, before going on to consider the situation in the UK. She referred to the Nuffield Council of Bioethics' November 2006 paper, Critical care decisions in fetal and neonatal medicine, and stated that its position – rejecting neonatal euthanasia even when life is intolerable - was received with relief by most UK paediatricians. Read more


8 Palliative Care Bill progresses


Back in Parliament, another palliative care expert, Baroness Finlay, continues to promote care of the dying. Her Palliative Care Bill has now passed through the House of Lords. The Bill, which seeks to promote the provisions of palliative care across England and Wales, is being supported by Care Not Killing. However, in order for the Bill to become law, it must also pass through the House of Commons; and, as hinted at by Health Minister Lord Hunt during the Bill's second reading on 23rd February, it is thought unlikely that the Government will support it by granting it time during the current parliamentary session. Read more


9 Kelly Taylor drops case


It appears that Kelly Taylor has been giving further thought to palliative options, as she has dropped her High Court case. The 30 year old Bristol woman who suffers from the life limiting conditions Eisenmenger's syndrome (congenital heart disorder)and Klippel-Fiel syndrome (congenital spinal disorder), had begun a court case seeking permission for doctors to sedate her with morphine until unconscious, and then to withdraw food and fluids in line with her 'living will' with the intention that she die. However, she has now withdrawn the case after her request for an adjournment was refused. Read more


10 Mental Capacity Act code of practice


Still though, as its code of practice is published, concern continues over the potential for the Mental Capacity Act (MCA) to tie doctors’ hands.


We will be following carefully the implementation of this new legislation to ensure that there are no abuses of vulnerable people. We are particularly concerned to make sure that there is no scope for persons or parties with an interest, financial or otherwise, in a person's death to influence these critical decisions. Read more


11 Living Wills and MedicAlert  


We have consistently opposed the concept of legally binding advance refusals, believing that, in the wrong hands, they could force doctors to make decisions that they feel are clinically inappropriate and not in patients' best interests. So it is with concern that we note that Dignity in Dying (DiD) – the Voluntary Euthanasia Society as was – is campaigning for a national register of living wills, to ‘ensure that living wills would be respected’. Their members are being asked to petition Lord Hunt of Kings Heath, the Health Minister, and their own MPs via a specially set up website.


The charity MedicAlert, which provides identity tags to alert medical professionals to patients’ medical problems, is assisting DID in this by providing tags advertising the fact that a patient has ‘special concerns – living wills/advance medical directives’. And MedicAlert Foundation International (based in USA) already has a facility for centrally storing patients’ advance directives for them. 


12 Action Points


  • Stay informed. The Joffe Bill was defeated last year but we expect further legislation to start making its way through Parliament within the next year. Our website is updated regularly with the latest palliative care and assisted dying stories.

  • Speak up. As and when media stories break, write to newspapers and politicians. Medical members can also write to BMA News and the medical journals and magazines.

  • Fundraise. Last year we achieved so much on a very tight budget. We now need funds for several new projects. Every donation, no matter how small, is gratefully received.

  • Hold a meeting. Care Not Killing can provide high profile speakers for your events. Why not drop us an e- mail about your requirements?

Care Not Killing