Hazel McHaffie

Parkinson’s Disease

Assisted dying … again!

In spite of everything that’s happening in Parliament this week – unprecedented machinations relating to Brexit: rebellions … the prime minister publicly losing his slim majority … the house voting not to go along with his plans … grandees being slung out of the political party they’ve survived for decades … breathless historically significant happenings – in spite of all that, assisted dying has hit the headlines once again.

It must be a surreal feeling, mustn’t it, counting down the days till you die? Rather like life on Death Row.

Sixty-five-year-old Richard Selley is doing just that. Born and bred in the Westcountry (my homeland), he taught Economics at Loretto School in Musselburgh (a few miles from where I live), and now lives in Perthshire. Tomorrow he will die far away in Switzerland.

Four years ago he was diagnosed with MND, and since then he’s been campaigning for a change in the law to allow people in the terminal stages of illness to end their lives peacefully and with dignity. In spite of his struggles with movement and speech, he has managed to write a book, Death sits on my Shoulder, and maintain a blog, Moments with MND.

In a letter to MSPs he makes this heartfelt plea:
‘If the choice of an assisted death was available to me here in Scotland so many of my worries would have been eased and my remaining time would have been spent in better ways than burdensome and complex admin. Instead, that precious time would be spent with my wife, my family and my friends. The current laws (and lack of laws) around assisted dying in Scotland are cruel, outdated and discriminatory.’

And indeed, Mr Selley hugely regrets the necessity to go to Switzerland for this service as he explains here.

Most of this effort has been below the radar, but now, at the eleventh hour, his case has been reported on the national news; during that precious time when he is spending his final week quietly at home with his wife and family and friends, doing ordinary things – like watching box sets, sharing memories. All for the last time. Knowing. Knowing, that tomorrow – Friday 6 September 2019 – he will take that lethal dose of medication, say his final goodbyes. Tomorrow.

He is quick to express appreciation for the ‘outstanding care’ he’s received from the NHS, but he now faces the end phase of this cruel illness, and has decided that enough is enough: ‘As I enter the final stages of this journey, and the prospect of total paralysis, I have decided that I would prefer to leave this world before too much longer. To use the terminology of Brexit, I have had my own little referendum, and decided that I wish to leave rather than remain. I don’t wish to crash out in an undignified manner, so I am hoping to negotiate a withdrawal agreement that will not require a long transition period.’

On top of the mental anguish – which he relates on his blog – it will cost him about £10,000, and he’s very aware that not everyone could afford such a step. He also has to be fit enough to fly, which means taking action earlier than he might if he were able to stay in this country. He can no longer swallow, so he’s practising the movements required to administer the poison via his feeding tube. And on top of all that he’s adamant he must make all the arrangements himself to protect his wife Elaine from prosecution. A tough call indeed.

As he says himself, ‘I think if those who oppose assisted dying could spend just one day in my shoes they would change their view.’ In reality, opponents of legalising assisted dying express enormous sympathy for Richard Selley and others in similar situations, but they say they have to consider wider societal harms, and the potential for abuse and exploitation. Elderly and dependent people could so easily feel under pressure to end their lives rather than being a burden on their families or society. The right to die could soon segue into a duty to die.

In spite of huge advances in palliative care, it’s estimated that eleven terminally ill people die a painful death every week in Scotland. It’s a significant problem. Of course, proposals for a change in the law have already come before Holyrood twice; on both occasions failing to get parliamentary backing, in spite of the powerful voice and image of Margo MacDonald MSP who had Parkinson’s Disease herself and died in 2014. To be fair, public as well as professional opinion has changed following a series of campaigns and high profile cases, but are we ready for the law to catch up? Can such a delicately nuanced matter even be captured in legal terms?

We should all be indebted to people like Richard Selley who use precious resources – energy and time – to bring these ethical dilemmas so vividly and urgently to our attention. I do hope he has the peaceful death he has worked so tirelessly for.

, , , , , , , , , , , , , ,

Comments

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.

, , , , , , , , , , , , ,

Comments