Hazel McHaffie

Margo MacDonald

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 The current laws (and lack of laws) around assisted dying in Scotland are cruel, outdated and discriminatory.’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

When is a spade not a spade?

Phew. What a week! We might have seen history in the making but I for one will be devoutly thankful when the dust settles from this jolly old general election. And rest assured, I have absolutely no intention of extending the agony here.

But I do want to talk about one particular politician, Independent MSP Margo MacDonald. Last week, in the midst of all the election hype, I was invited to go and hear her in person talking about her proposed End of Life Choices (Scotland) Bill. Of course I leapt at the chance. It’s a subject dear to my heart, as you folks know.

On this occasion she stoutly maintained that having Parkinson’s Disease herself hasn’t influenced her in taking up this Bill, but I have to admit her personal circumstances give her a certain edge in my estimation. Anyone who campaigns so tirelessly when they’re battling personally commands my respect.

But here she was, asking for comment and questions about her proposed Bill from a largely medical audience, which included lots of psychiatrists and some palliative care specialists, both of whom have a lot riding on this. Of course, they challenged her. And why not? She wasn’t seeking any latitude because she has an illness herself. And more importantly, by her own admission, she’s asking an awful lot of doctors: viz to end the lives of human beings. Quite deliberately.

Now, if you’ve read my novel on this subject, Right to DieRight to Die, you’ll know that I fully understand the dilemmas for those people who suffer horrific degenerative neurological diseases. You might detect that I have a lot of sympathy for those who want to end their lives ahead of nature’s schedule. But what you won’t know from that book, is that I personally have very mixed feelings on the subject of assisted death. Depends where I’m standing what it looks like, I guess. But because I feel honour bound to try to present the picture fairly and honestly (well, I’m not a politician), Margo’s debate with the doctors compels me to spell out a few angles thrown up in the discussion that made me think, even though some at least appear in the novel in one guise or another. (Incidentally the book predated Margo’s Bill by a couple of years.)

Here’s roughly how it went (my paraphrasing).

MMacD: This is a Bill to help a small number of people with intolerable or terminal conditions have the kind of dignified death they wish for.
Audience: Let’s call a spade a spade. It’s euthanasia.

MMacD: Ending a life is too big a responsibility for families who, in any case aren’t knowledgeable enough about medical matters; they might guff it up and not know how to correct their mistakes. Ergo, doctors should do the deed.
Audience: Doctors aren’t trained in how to kill either. They wouldn’t know how to. And given the projected small numbers* eligible for this service it’s hard to see how they could be trained, or build up expertise.
*(Based on the Oregon experience, MMacD had projected 55 per annum in Scotland.)

MMacD: Doctors already end lives because of the double effect of the drugs they use: big doses of pain relief shorten lives.
Audience: This is a myth. Research shows that when medication is carefully titrated against pain by palliative care specialists it doesn’t shorten life. It’s only when non-experts panic this happens.

MMacD: The Bill requires psychiatrists to assess the patient’s definition of ‘an intolerable life’.
Audience: Assessments like this are notoriously difficult.

MMacD: The patient drives this. It’s what they personally find intolerable that counts.
Audience: So what are the doctors assessing?

MMacD: One of the rules for this Bill is that the patient isn’t being coerced or subjected to undue influence to die.
Audience: It’s incredibly hard to decide if they are. Pressure comes in many guises.

MMacD: Whilst she has no quibble with religious or moral objections to this Bill, MMacD gets annoyed by the people who make false claims about its risk to vulnerable people. But she also said she feels guilty she’s being too conservative about who would be eligible for this service.
Audience: No, they didn’t say a word!

It’s only fair to underline a couple of points.
– MMacD was inviting challenges. And she stated that she had every intention of having medical experts present at the discussion stage.
– the Bill is at a very early phase. It could change in lots of ways before it becomes law – if it ever does.
– the doctors who spoke are not necessarily representative of all medical opinion and she is not representative of all politicians.

Do add your comments either on the blog, or to me in confidence (see my contact page), I’d love to hear from you. Especially if you can help to clarify my own thinking on some of this. What a minefield!

In the midst of all this turmoil, it’s been a tonic to involve myself in Christian Aid week. The annual Book Sale at St Andrew’s and St George’s in Edinburgh’s George Street is a fantastic example of love in action. (It raised £101,000 last year!) And the people who go out of their way to be sure their donations get to me if I miss them in my door-to-door collecting – they restore my faith in human beings. As did the church I visited the previous week, who really reach out to their local community in practical ways as an integral part of their Christian service. These are the kind of folk who get my vote. Politicians please note!

, , ,

Comments

Medical ethics writ large

What a week since I last posted a blog! The news has been a positive playground for medical ethicists!!

IVF clinics reported to be destroying embryos with minor conditions; a ‘genetic breakthrough’ which could help treatments for breast cancer to be tailored to individual need; a mother who forced her son to fake illness being sent to prison; a manager of a home accused of giving elderly residents overdoses of drugs; a powerful torch being trialled in the detection of malignant tumours; patients who travel to Switzerland to die in Zurich’s suicide clinic potentially facing a £30,000 death tax; the novelist, Martin Amis, recommending ‘euthanasia booths’ on street corners where elderly people could end their lives with ‘a Martini and a medal’; a girl of 5 who suffered brain damage during labour being awarded £1.25m by an Essex Trust … enough! enough!

Crucial Decisions at the Beginning of LifeRight to DieNot surprisingly given my overt interest in the topic (Crucial Decisions at the End of Life and Right to Die) I want to home in on the matter of assisted death. Yes, again! Because it’s been a big week for this topic. Lots of column inches; lots of airtime devoted to it.

In 2007 Tom Inglis fell out of an ambulance in which he was being treated following a pub fight. He sustained brain damage and was paralysed. This week (my blogging week ie) his mother, Frances Inglis, was jailed for life for killing him with an overdose of heroin – on the second attempt. She really really intended to kill him this time, no doubt about that. She posed as his aunt to get admittance to his nursing home, she was armed with a syringe and £200 of heroin, she wedged an oxygen cylinder and a wheelchair against the door and poured strong glue into the lock to delay anyone entering for as long as she could. But, ‘you cannot take the law into your own hands and you cannot take away life however compelling you think the reason,’ said the judge, before telling her she must stay in prison for at least nine years. Outside the court Tom’s brother praised her courage and love. He asked, how could it be legal to withhold food and drink to allow a patient to die slowly, but not legal to end suffering in a quick and calm way. But a crucial point here is that Tom wasn’t requesting death himself. And at least one doctor predicted that he would eventually recover many of his faculties.

Kay Gilderdale’s daughter, Lynn, did request that she could end her ‘miserable excuse for life.’ She’d had ME for 17 years, she was in excruciating pain, and she’d had a premature menopause at the age of 20. Kay provided her with the means to do so. The 31-year old injected herself with the heroin, her mother topped it up with more of the same plus sleeping pills and antidepressants and injections of air into her bloodstream. She too really really intended her daughter to die. But this week she has been acquitted of the charge of attempted murder. Nevertheless she will have to live for the rest of her life with the memories and knowledge of what she has done.

On the same day that Frances Inglis was sentenced to nine years in prison, three senior judges were deciding that an Asian businessman, Munir Hussain, should walk out of prison, his sentence for grievous bodily harm (after beating a burglar with a cricket bat) replaced with a suspended sentence. Justice, compassion, mercy, upholding the law … all the reasons are trotted out for the differing penalties.

But what would you instinctively do if you found a menacing burglar threatening your family? What would you do if your daughter/son was lying in torment, physical and/or mental and begging for your help? Or if you were on the jury deciding the fate of a mother who has deliberately killed her child?

So-called ‘mercy killing’ raises powerful emotions. Campaigners are re-doubling their cries for a change in the law. The current attempts to do so hinge around cases where people are wanting to end their own lives because of terminal illness or intolerable suffering. Similar arguments; important circumstantial differences. But the potential consequences of such a change are sobering too. Doctors under pressure to speculate as to the time left to give credence to the ‘terminal illness’ (the Lockerbie bomber case springs to mind), disabled lives categorised as inferior and worthy of terminating, patients under pressure to end their lives before they become a burden or inconvenience, a slippery slope to euthanasia of the unwilling … You’ll have read the lists too.

Many people face the dilemma of deciding between two tragic choices, not just the few who hit the headlines. Some of them contacted Any Questions? and Any Answers? this week each with their own painful story. I’ve heard many more. I’ve been personally involved in such cases. Some families go ahead and break the law, some think it would be right to but can’t bring themselves to perform the act, and others believe life is sacred and not to be cut short by human hand. And opinion is fierce on both sides.

Independent MSP, Margo MacDonald, found the same thing when she listened to people caught up in these difficult questions, and her appreciation of the fine nuances is reflected in her proposed End of Life Assistance (Scotland) Bill published this week. It’s hedged about with safeguards:
– a minimum age of 16
– at least 18 months registration with a GP in Scotland
– late stage terminal illness or a degenerative condition or permanent incapacity
– intolerable life
– agreement by two medical practitioners
– a psychiatric assessment of capacity to decide
– 2 witness signatures
– a cooling off period of two days.
She’s a persuasive campaigner and her own situation (she has Parkinson’s disease) gives her a strong platform. But no-one knows how her parliamentary colleagues will react (this is not a vote-winning cause) and without their support it can’t even get through to the next stage. But if it does become law then Scotland could become the first part of the UK to legalise assisted suicide, so it’s a critical issue.

MSPs are expected to vote on this Bill in the autumn – a free vote so they can go with their conscience and not along party lines. Keir Starmer, the Director of Public Prosecutions, is due to issue new guidelines on assisted suicide within the next eight weeks.

Which way would YOU want them all to go?

, , , , , , , , ,

Comments