Hazel McHaffie

Lord Joffe

The Assisted Dying Bill … yet again

Patience is the name of the game when it comes to legalising assisted dying, it seems. But this week there’s been a significant breakthrough.

Back in the noughties, when I was writing my novel, Right to Die, about a young man who contracts Motor Neurone Disease and contemplates ending his own life, I lived in daily dread that something would happen to steal my thunder, and the bottom would fall out of the marketing strategy, before it hit the bookshelves. That was 13 years ago! At that time, Lord Joel Joffe was expending his energy trying to get a bill drafted to ease the lot of those facing intolerable suffering at the end of their lives. I had the privilege of meeting him in London, at the House of Lords, to talk about our shared interests, and he very kindly endorsed my book. Sadly his bill didn’t get through, and he died disappointed by this.

In Scotland, MSP Margot MacDonald fought valiantly for an easement of terminal pain and suffering, her case the more powerful because she herself was suffering with Parkinson’s Disease. I listened to her too on a number of occasions, and was moved by the passion behind her case. She too died without seeing progress on this front.

These are but two of the many notable figures who have kept the issue alive, nibbling away at the edges of the arguments about the horror for some people who face a slow undignified and painful death, and who would welcome the security of knowing that, if things became intolerable, they had a way out that wouldn’t incur penalties for those left behind. Experience in other countries (the USA and Netherlands especially) shows that a large proportion of those who have an advanced directive authorising assisted death, never actually avail themselves of the service. It’s enough to know it’s there if needed.

Over the years, we’ve all heard and seen patients and families sharing their plight with the media, publicly throwing their dwindling energies and resources into fighting for compassion and understanding. We’ve listened to politicians, clergymen, philosophers, religious people, those with disabilities, putting their perspectives into the melting pot. For and against. Passionate, angry, distressed, vengeful, dogged. And gradually, over time, we’ve seen a softening of attitudes taking place.

As far as the general public are concerned, opinion has swung in favour of a change in the law; for some kind of easement of intolerable suffering. Politicians have gradually – almost imperceptibly – become less scared of picking up this hot potato.

But one group of people who’ve remained reluctant to back assisted dying has been the doctors. Small wonder: they’re the ones who will be on the frontline, actually taking those active steps to supply the fatal drugs, or even administer them, to help eligible patients end their lives, should this become legally permissible in this country. And, as we all know, doctors are in the business of caring not killing.

However, this week, the British Medical Association has dropped its opposition to assisted dying and adopted a neutral stance. Not in favour, please note. Neutral. And indeed, the vote hinged on a hairsbreadth! 49% of the representative body voted in favour of a move to a position of neutrality; 48% were opposed to such a move. They, in turn, were acting on behalf of their members: 40% of whom were in support of a change in the law to allow assisted dying; 33 opposed to it; 21% thought the union should be neutral on the subject. A position of neutrality gives scope for all ranges of opinion. It’s a major step.

And a timely one it seems. Because next month a new version of the Assisted Dying Bill is due to be put to the House of Lords for a second reading, this time promoted by Baroness Meacher – whom I have NOT met! It would seem to have a stronger chance of success this time because of the BMA shift. Time will tell, but I’ll be watching this space closely and thinking of all those who have paved the way but died disappointed.

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To die or not to die – that is the question

Yes, it’s reared its head again as another new year gets underway. The perennial dilemma. Assisted dying: should we? shouldn’t we? [Cue king-sized sigh.]

Right to DieWay back when I was writing Right to Die, (2005-2007 ish), Lord Joffe was working tirelessly and meticulously to get his Assisted Dying for the Terminally Ill Bill through parliament. I followed its progress closely, I met with the man himself, and I confidently expected him to succeed. But no,  the House of Lords blocked it. Too hot to handle.

Then two years ago MSP Margo Macdonald waged her passionate campaign to get assisted dying accepted in Scotland. I watched her in action, I listened to her in the flesh, and I honestly thought her End of Life Assistance (Scotland) Bill would get somewhere, given the publicity she generated and her own personal struggle with Parkinson’s Disease. But no. I was wrong again. It was thrown out.

Now this month Lord Falconer has published his report on behalf of the Independent Commission on Assisted Dying (set up and partly funded by Sir Terry Pratchett). The story is similar. They recognised the distressing situations people find themselves in under the present system, the anxiety it causes healthcare providers, and the challenging burden it represents for the police and prosecutors, and found the present law both ‘inadequate‘ and ‘incoherent‘. They looked for a solution for people with the mental capacity to request assistance and a clear sustained wish to die.

Once again practices in other countries that permit varying levels of assisted death came under scrutiny. The Commission ‘did not like much of what they saw.‘ In Switzerland, the Dignitas clinic is an alien environment where patients are far away from loved ones. In Oregon, patients must take 90 pills, often without a doctor present. In the Netherlands, even teenagers and people with mental illness are helped to die. The Commission deemed all these practices undesirable for Britons.

But in any case,  irrespective of the efficacy of practices elsewhere, in reality the opportunity to go abroad for death is really only available to the wealthy. Furthermore, because of the threat of legal action against relatives  who assist them, many are forced to take their own lives early while they are still physically able to do so. So, nothing new; but the painful truths revisited and reiterated.

Like their predecessors, the Commission came to the conclusion that a change is overdue. GPs should be able to prescribe lethal doses of medication for dying people to take themselves, they said.

Lord Falconer’s recommendations though, are much narrower that Margo Macdonald’s. They would only apply to people with less than a year to live, who are capable of drinking the medication unaided.  They do not include those who are suffering unbearably but for whom death is not imminent. Neither Margo herself, nor the redoubtable right-to-die campaigner Debbie Purdy who has MS, would qualify. After all they’ve done to open up the debate and clarify the law! A retrograde step surely, not to cater for the people in greatest need of help. Because in reality, terminally ill patients close to death are often helped subtly and carefully and lovingly to have a good death. It’s the ones with lingering declines because of conditions that rob them of power and control and dignity inch by degrading inch that we need to worry about most.

In fairness, this latest august committee conceded that there are dangers in what they recommend and extreme caution is needed. Pressure might be exerted on vulnerable people to end their lives – either from within themselves or from family members. Hence, in their scheme of things, disabled people, or those with depression or dementia, would be ineligible for assistance.

Or maybe they felt that a staged approach is advisable. Start small. Test the water. It’s conceivable. But could backfire.

The next step would be to discuss their report in parliament. But it will inevitably face stiff opposition. Politicians have proved themselves reluctant to back this particular hot potato. Vocal religious leaders are against the taking of life – full stop, and few politicians will risk alienating them.  And many in the medical profession are reluctant to publicly support something which appears to fly in the face of their avowed duty and intent to save life and do no harm, although, if you read the evidence to the Commission you’ll see that a considerable number of eminent doctors do privately support a change in the law.

Nevertheless the report places much of the burden for implementing change on doctors. They are the ones who must screen eligible patients, tell them about possible alternative treatments, deliver the lethal prescription, be present during the final moments, cooperate with the police, and report to a monitoring service. Burdensome indeed. Especially if you have personal reservations. And many doctors fear that allying themselves with such a death service would compromise their relationship with their other patients.

But identifying any category of person to take this role presents me with my personal biggest dilemma. It’s easy enough for those who aren’t medically trained to insist, ‘Oh yes, somebody should help these people to die.’ But would they be prepared to administer that fatal dose? To live with the knowledge that their action had killed a fellow human being? Me, I feel sick if I accidentally step on a snail! I couldn’t even finish off an almost-dead rabbit left behind by a hit-and-run driver. Squeamishness personified, me. Who am I to say, ‘Yes, we need this change, but you do it, not me’ ? That’s where all my carefully worked through logical reasoning breaks down.

This time I haven’t spoken to Lord Falconer in person, but if I had to declare my opinion as to the future of this latest attempt to offer assistance with dying in the circumstances outlined, I would rate it unlikely to succeed. Especially given the accusations flying around of bias and prejudice in this particular committee. And the problem of knowing who has less than a year to live. And the expertise required to assess people with a terminal illness for anxiety and depression – could GPs do it? And the time necessary to establish a sustained and genuine wish for death.

However, talking about these controversial and emotive issues that involve unbearable suffering and mental anguish, has to be better than sweeping them under the carpet. So if it keeps the issues alive it will have served a function. And in the meantime, let’s just hope and pray that those who need it get excellent palliative care from staff who support the concept of a pain-free dignified death.

Curious really, Right to Die came out in 2008 but is just as topical in 2012. The reverse of what I expected when I wrote it.

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