House of Lords
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.]
Way 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.
Celebrity and courtesy
It’s not every day that I receive an envelope bearing the House of Lords crest. So perhaps I can be forgiven for tearing it open casually without noticing – and ruining the envelope in the process! But anyway it was the contents that prompt me to tell you about the experience, not the crest. A charming throwback to a byegone era.
The letter was from Baroness Mary Warnock – probably the best-known moral philosopher in the country, for those of you who don’t instantly recognise the name. The Warnock Report? Ring any bells?
I’ve read lots of her writing; heard her speak. But I finally met her in person at the Edinburgh International Book Festival last year when we appeared together at an evening event about assisted dying. We’d both brought out books on the subject within weeks of each other (her’s: An Easeful Death; mine: Right to Die). She’s in her eighties now but a wonderfully switched-on lady who still sparks controversy in the press periodically (mary-warnock). Good for her. I don’t always agree with her but I hope my synapses are still crackling as merrily if I ever reach that age. Anyway, at her request, a few weeks ago I sent her a copy of my latest manuscript, Saving Sebastian (about a family seeking treatment to have a baby of the same tissue type as an older child with a fatal illness). ‘Sent her a copy’ – sounds casual, doesn’t it? In reality it was a heart-in-my-mouth sensation posting it. Because not only does this amazing woman have a planet-sized brain, but she has committees named after her – distinguished committees on related topics.
And this envelope held her response. Big breaths. Steady the racing heart.
The endorsement was very encouraging. Very kind. So, why do I mention this here? Because the letter itself was exceptional: hand-typed (complete with uncorrected errors – lots of). The crested envelope was hand-written. This famous and brilliant lady took the trouble not only to read the book within a fortnight of receiving it, but to personally and laboriously write a proper courteous letter to me about it – no dictation to a secretary, no hasty email. That kind of attitude towards ordinary people impresses me more than any prestigious awards – and she’s had her fair share of those.
