Euthanasia as a choice?

2010-01-19 by

“Should I take my own life?” The case for euthanasia and for life, explored by a conscientious writer, Charlotte Raven, as published by The Guardian

I read the article with apprehension as I could tell that Charlotte Raven would offer a very articulate and rational argument for the cause of euthanasia. Although I am not at all religious, the idea of taking someone’s life or taking my own feels absolutely abhorrent to me – no matter what the circumstances. The potential for the legalization of euthanasia in the UK fills me with fear for those terminally ill or severely disabled people who might feel compelled to choose it.

Reading through the experience of Charlotte however, I could not blame her at all for her feelings of despair at being diagnosed with Huntington’s, an incurable degenerative disease. As the nervous system gradually loses its functions, the person affected experiences ‘involuntary movements, difficulty in speech and swallowing, weight loss, as well as emotional changes resulting in stubbornness, frustration, mood swings, depression’.

At first what really shocked me was how keen she was to find out whether she had the disease or not, after discovering her father had it. The disease affects most people when they’re older, symptoms are less likely to occur at Charlotte’s age, which is 40. Had I been in her shoes, I would have avoided finding out at all costs, but I suspect that having recently given birth to a baby girl, Charlotte must have been spurred on by an irresistible mother’s desire to plan and make life better for her little girl. How? By attempting to feel in control and make some provision towards pending serious illness and such a devastating life challenge.

I was surprised that she was frustrated by her husband’s non-acceptance of her desire to kill herself while ‘still in control’ and his lack of rationale against her proposed suicide: his was an emotional, gut-response kind of refusal. If this refusal could not be ‘rationalised’ does it make it less valid?

In her quest for answers, Charlotte went to Venezuela to find out about a community of people with Huntinton’s who live there their last final weeks or months (or even years) with their families. She finds out about a woman, Mariela, who is severely affected by the disease but is also a mother to six children and is seven months pregnant. Initially Charlotte is shocked and saddened at the woman’s choice to keep having children and keep her family close. She is surprised about Mariela’s rejection of suicide, especially as her symptoms are greatly worsened by the pregnancy.

Then the revelation: “Maternal love pins Mariela to the shore, defiantly producing children. I no longer feel she is irresponsible to refuse sterilisation. Mariela is landlocked, I realise, and so am I….Suicide is a fantasy. Loving my daughter, I am doomed to live”.

Could it be just a possibility that the promise of moments of unforgettable love might be enough to distract Charlotte away from her longing for a controlled death?

Charlotte’s husband does not want her to die: he loves her and choosing life gives them more time together. Perhaps it’s not rational, it’s not intellectual, maybe difficult but it might just be true. If their baby daughter could speak, what would she say about her mother’s choice to die?

Charlotte’s independence is of greatest value to her. But she is also confronted with having to accept help and support and that her love and the love others for her might just be enough. She actually has a right to live with dignity: in the UK too many families with an terminally ill or severely disabled dependent are still unsupported and risk disintegration as the pressure of care takes its toll.

While it’s understandable that like Charlotte, millions of disabled people with severe impairment do not want to be a ‘burden’ – it’s important that they are enabled to live with dignity through appropriate care. All of them still have a lot of living to do and much to contribute. Perhaps Charlotte would have not been so hasty in her quest for euthanasia if she felt confident her family would receive the best support necessary.

I think that euthanasia is not the answer at all, and that the crux of the problem for those wishing to die, like many disability rights campaigners have pointed out for years, is that their families and themselves do not receive adequate personal assistance, nor palliative care. Then they would not have to feel ‘a burden’ but focus on the moments they have with their family.

Adequate personal and palliative care is not enough in themselves to help us in our fear of pain and death: the latter can be terrifying – no matter how ‘easy’ Dignitas wants us to believe they can do it.

Minnelli, its director, with his rationale of ‘no life without autonomy’ sounds like a modern-day Nazi, exploiting our fear of death and dependency and pocketing the money of desperate families who think are doing the right thing. I worry that many families who have chosen the Dignitas option are caught in a horrifying dilemma and want to spare each other’s pain but often do not know their rights to receive care and support for living. Euthanasia is not about dignity, like Charlotte says “it’s a fantasy”, an illusion of a painless and fearless death, when actually pain and fear are inevitably part of life itself.

After much self-introspection and serious research, Charlotte came to a conclusion:

“Registering the discomfort of existence, I felt a great wave of self-pity, the first since my diagnosis. I felt worthy of being cherished and knew I’d do whatever it took to survive. Back home, I told my husband he was right. The case for carrying on can’t be argued. Suicide is rhetoric. Life is life”.

Charlotte in her article explains that fighting for her right to die had given her a sense of purpose initially. I hope that she will feel a greater sense of purpose if she focuses on ‘whatever it takes to survive’ and understands that it is her right to receive support and professional care., By choosing to live she is a great example to those with severe impairments and terminal illness, who, even if scared and in pain, want get on with the business of loving and living.

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