Jane MacDonald: Let me choose the time and place of my death

As a nurse, I am aware there is a chance of dying in distress with a loss of my dignity

Thursday 11 May 2006 00:00
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Those people who do not want the Assisted Dying for the Terminally Ill Bill to become law are no doubt well-intentioned. They are often, however, people who have religious beliefs or make points directed at empowering doctors. This isn't about doctors or God: it is about patients.

Until recently, I had breast cancer with bone secondaries that caused me a great deal of pain, despite partial control with strong pain-killers. Thankfully my cancer is in remission following treatment, although I still experience some pain. I also have multiple sclerosis, which brings other problems in the form of muscle spasms, incontinence, lack of mobility and loss of motor control. MS is incurable, and symptomatic treatment is at best only partly palliative.

For now, the quality of my life is reasonable, but as a nurse I am aware that, despite the best medical care and the finest hospices, there is a chance of dying in pain and distress with a loss of my personal dignity. I would like the opportunity to choose the time and place of my death if life becomes unbearable.

To do this, I might need the help of a doctor, but anybody assisting me under the current law would be open to prosecution. The law needs to be changed so that this simple humanitarian assistance can be offered to those who wish for it, with appropriate safeguards, within the law.

My options are not very favourable. If I chose to travel to Switzerland, any friend of mine knowing about my wish and wanting to help me could be liable to prosecution after my death. Is this how people should be treated? Whether one believes in a god or not, should not one's own wishes be respected?

Why should family and friends be threatened by the existing legislation? This Bill goes some way to helping people in my situation and giving them the opportunity to discuss the whole matter with doctors. Doctors in this instance should be able to assist if they so wish and confirm that the individual is sound in mind. For me, the major benefit of a change in the law would be that I could discuss that choice openly.

I urge Independent readers to take a look at the Bill, available on Dignity in Dying's website (www.dignityindying.org.uk). I don't think it puts anybody at risk. All I want is the right to choose; even if I never have to ask for help to die, I want to know that it is there for me. We all have to die of something. Our deaths should be our own. What constitutes dignity, in one's dying days, is not something that doctors or the churches determine. It is deeply personal.

When the House of Lords Select Committee reported in detail on this Bill, it concluded that "the demand for assisted dying is particularly strong among determined individuals whose suffering derives more from the fact of their terminal illness than from its symptoms and who are unlikely to be deflected from their wish to end their lives by more or better palliative care". This was unanimous among the committee, and I suppose that I may be regarded as such an individual. My determination is not so much to have the help to die, but to have it available as a choice.

In Oregon, where they have a regulated assisted dying law, the patient has to go through the procedure of asking for help, a range of safeguards protects vulnerable patients, and the patient can decide at any stage to back out. Many people look into it and decide not to have the help. I am told that frequently they find the simple existence of the help a reassurance that allows them to die well, less afraid, less unsure. It is often called an "insurance policy". The Oregon law has been free from abuse since its introduction in 1997 and has helped to prevent nearly 100 violent suicides.

I feel very sorry for those people who are not able to make their views known due to their medical conditions. However, that should not preclude those who have the ability to control their own destiny. Such people face far more risk from abuse when the law places decisions over patients' end-of-life treatment exclusively in the hands of doctors. Patients all experience suffering differently: we know more about this than anybody else. Please, let us judge for ourselves.

I have no intention of giving up my life, and I am fortunate to have been given more time to live through the excellent treatment and palliative care that I have received.

Doctors and nurses provide patients with wonderful support, and make it clear to them what they have to go through and how they can help themselves. If and when my time is running out, I would like the same level of help in facing my final decision, but with the difference that I will have a real choice, and the final say.

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