The sad death of Sir Terry Pratchett has once again put the assisted suicide debate back into the spotlight. The subject is always delicate and extremely personal but one that always gets people talking and thinking.
Just over a year ago we spoke to Sir Terry Pratchett and Anthony Ozimic about the subject.
Author, Sir Terry Pratchett is something of an accidental campaigner. Soon after his diagnosis with what he describes as the ‘Rolls Royce’ of Alzheimer’s – PCA (posterior cortical atrophy) he was interviewed by the Daily Mail newspaper and outlined his thoughts that assisted death should be an option for people with terminal or debilitating illnesses.
Anthony Ozimic represents lobbying and campaigning society, SPUC Pro-Life who defends the standpoint that life is always worth preserving. Although many of SPUC’s members have a religious viewpoint the society is not specifically a religious organisation.
Debate over choices and rights surrounding the issue of assisted suicide have been grinding on for years without firm resolution. Entrenched parties’ argue from polar points. The idea of assisted suicide to many is a method of applying mercy to someone unable to help themselves’ out of suffering, when drugs and medical intervention becomes insufficient. Cases concerning debilitating illnesses and dementia tend to be the stories that make the newspapers. These involve people who either live with catastrophic failure of their own body or who would like to avoid it, even if not living at all is the only way.
On the other side of the debate are those that cannot accept that life should ever be purposely terminated. For them it’s a question of sanctity and morality and at times one that raises their concerns over the possibility of abuse; in other words, when suicide becomes murder. The ‘pro-life’ perspective is often supported by religious groups who, according to their accepted codes, are unable to see termination of life as nothing other than sin. To a certain extent other ideas such as the preservation of dignity also appear to them as self indulgence.
There are so many overlapping variables and difficult consequences to deal with. Since the issue though is about ‘death’ let’s start with ‘life’ or more accurately what it means to be ‘alive’ as distinct from ‘living’.
‘Quality of life’ is a stock phrase of the pro-choice side and is used to define in very basic terms how bearable a person’s life is and whether it is literally worth continuing. Perhaps it’s the brutal nature of the phrase that infuriates religious groups in particular, that see it as demeaning and an insult to the God that (in their view) created that life. On the other hand, for pro-choice campaigners it is the very essence of the notion that we should have the choice to avoid suffering or an overwhelmingly poor quality of life if we so wish. They point to the fact that suicide is no longer illegal in the UK and suggest that people who would otherwise take such action be given assistance in doing so.
Andrew Ozimic of SPUC Pro-Life says: “Obviously when somebody is in those difficulties it is going to be difficult for them to accept a contrary message. What I think is very, very important is that everyone is given the message that there is a value to human life that you can’t put a price on. It’s inestimable. Human rights law says it’s inalienable.
Terry Pratchett’s view is different. His opinion rests on a person’s right to make certain choices; in typical ‘storyteller’ fashion he explains how his own father instructed him saying: “When I am no more use to anybody and I’ve got pipes and tubes in me, please tell them to shut me down”. He was a mechanic and he used to talk like that.
He was in a hospice and we were waiting more or less for him to die. My mother was very worried. I didn’t go and turn any knobs and levers; that would be a bloody stupid thing to do. You knew that he was dying of (the effects of) morphine because that’s what so many people do, eventually. I thought: “why does it have to be so prolonged?”
From these opening statements it’s clear how wide the chasm is and how difficult it is to find a workable compromise that could be translated into guidelines or into law.
There is a distinction between mind and body, though, of course, they are vitally connected. Pro-choice defenders would point out that there is a definite distinction between liberty and imprisonment and say that we should have the right to not only direct our lives but also the nature of our own decline and death and the option to preserve the dignity so often lost after the point where the patient looses the mental capacity to make decisions.
Patients who are living with, or suffering from pain may well ask their doctor to end their lives (and therefore their suffering) once they realise that they are terminally ill and that they have nothing but a painful last session or deteriorating mental clarity to endure.
The essential question remains: is helping somebody to end their life acceptable? Grey areas abound even in a regulated organisation such as the NHS. There does seem to be some passive acceptance that doctors should ‘help’ patients to die as a result of their so called ‘treatment’ knowing full well that the drugs are not going to make them better but set them on course for a swifter end.
SPUC Pro-Life are very clear in their thinking regarding medical application: “As long as what is given is a correct dose rather than say, an overdose and that there’s been no intention either on the part of the staff or of the patient for that person’s life to be shortened or ended,” is Ozimic’s view whilst making the further suggestion about dosing saying: “We know because of recent medical studies into this that proper doses of drugs such as morphine at the end of life don’t in fact shorten life or cause death and in fact help to prolong a life somewhat”.
Pratchett’s views are different and stated simply: “I think I’d start off from the position of human rights. Do you own your own body? Give or take the relationship in a marriage where you might well say that there’s a second party; when you die, it’s you who dies and when you live it is you who’s living”.
Terry Pratchett has already been diagnosed with PCA, a form of Alzheimer’s that might well mean that he eventually loses the capability to make decisions. He worries about patients that need to act before it’s too late to signal their intentions. As things stand for the moment this would mean asking somebody to break the law to enable them to die in their preferred way. It may be a surprise to find that he is reluctant to fully bestow responsibility to those around him once he passes the figurative ‘point of no return’ saying: “I believe that the patient has to do something, even if it’s just pressing a button, but if something goes wrong, a doctor will assist because that then becomes a medical emergency anyway.”
As I’ve already alluded to, there are so many variables to deal with under this broad topic. Physical condition of patients is one thing but the emotional and human side of things is far less easy to quantify. SPUC Pro-Life deals with this simply and efficiently by counting any vital signs as ‘life’ but remains concerned that the spirit of the law that currently protects it is slipping away and that doctors have started to take matters into their own hands. Ozimic says: “It needs to be dealt with in a sensible and a rational way. We know that the number of these cases is relatively small in the UK but there are worrying instances of this happening. Euthanasia of a different kind where doctors and medical staff have withdrawn or withheld appropriate medical treatment or appropriate care such as food and fluids again with an intention to cause the patient’s death or shorten their life should be investigated. There have been court judgements that have ruled in favour of food and fluids being removed from patients such as Tony Bland who was one of the victims of the Hillsborough soccer stadium disaster and who was in what is popularly called a ‘persistent vegetative state’. We would call that euthanasia by omission or neglect in contrast to euthanasia by commission, that is by act, such as a lethal injection.”
Pratchett seems to want to open a deeper debate that involves a frank and open discussion involving more than just a consideration of the medical facts and to what extent medical care is about caring enough to make the ultimate adjustment.
For the moment, UK law sets out that whilst it is no longer illegal to commit suicide, it is against the law to aid someone in dying. From the perspective of a patient, this defies their ability to make final choices. It is worth considering that a patient who is not suffering might not consider taking their own life but after a sudden onset of debilitation change their mind. At this point, they may lack the ability to do it themselves (legally). This has lead to a sympathetic surge in popularity towards pro-choice reform of the law that many now consider is all but a prison sentence.
Pressure on medical staff
This is one of the reasons why in the opinion of SPUC Pro-Life there is now more pressure on doctors to help their patients to die. In some instances there is anecdotal evidence that doctors are making their own decisions and wantonly dosing patients to death to prevent suffering. Such action is illegal.
SPUC Pro-Life is worried about a supposed trend of acceptance towards assisted suicide. Ozimic says: “it is increasing I think, because of the general discourse of society and the medical profession about assisted suicide and euthanasia. We know that the principles that allow euthanasia by neglect and omission are now part of law and are part of guidance from the medical profession so that we fear that this is becoming an increasingly widespread practice that is being used to put pressure upon members of Parliament to change the law to allow death by lethal injection.
We have a situation whereby assisted suicide is now easy for people to participate in without any legal comeback and we don’t think that’s a very good situation where we have a legal ban, but that it’s not enforced.”
Pratchett has more sympathy with practitioners and views those who bend the rules as people with the simple humanity to want to end suffering. “I remember speaking to a very elderly lady who way back in the 1930’s was a nurse and under the aegis of a lot of other senior nurses who took her by the hand and told her how to do things. We were talking about that and other matters and she said that she had killed two people. The first one was a man who was dying of cancer and screaming as he died and she and the man’s wife suffocated him with the pillows because she said that there was nothing they could do.
We know already that suicide is not illegal and it’s strange to think that in my lifetime, it was illegal. You’d be put in prison, possibly to show you that life was worth living!”
Telling us what to do
Perhaps it’s the amount of information choices that we are now presented with that has started to impact the modus operandi where people accepted the perceived wisdom of the government or the church. We are far less likely to follow orders without at least understanding some detail concerning the true ramifications than we ever used to. Many of us now defy the idea that we should simply let the ‘Nanny state’ take care of us and tell us what is right and wrong.
For SPUC Pro-Life any deviation into compromise is a non-starter but even pro-choice campaigners like Pratchett are not in favour of an all-out, rule-less, lawless approach: “The Government, to an extent, at least, have an interest in not having dead bodies lying around in the street but I think we’ve been somewhat lured by the National Health Service and other things into believing that the Government really should have some control over, sooner or later, everything we do.”
Pratchett is involved in the argument first and foremost as an individual with choices to make about his own life. He suggests compromise and the idea of at least gaining some form of second opinion to help establish a sound mind at work in making such a decision as asking to die.
Following the rules
Even with a handy portfolio of rules to refer to, it seems as though there will be a large element of variation in interpretation and therefore application. How ill is somebody? Do they really understand what they’re doing? Are they under pressure from ill meaning parties?
SPUC Pro-Life insists on a no-compromise stance. They continue to raise concerns over the potential for abuse and a widening of the view of assisted suicide as just another treatment with Ozimic stating definitively: “We are opposed to any intentional killing of innocent people. Consent or non-consent is not material to that material objection but for those people that don’t share that fundamental principle we can see from countries like the Netherlands that whilst they think their safeguards are going to work, their safeguards are quickly put aside.”
Pratchett has thought long and hard about his own views and how a law that can protect and serve everyone would work saying: “That’s why I suggested that why we have a reverse version of a coroner’s court”.
Spirit of the law
Ozimic stopped short of saying that practitioners involved in cases of assisted suicide should be accused of murder but he did suggest that investigations should be carried out where the suspicion of an assisted death lingers. If the spirit of the current law is being eroded SPUC Pro-Life would like to see it bolstered before it becomes pointless.
Where we have mentioned death and the possibility of murder we must mention motive; if only to try to get a sense of the framework that assisted suicide exists in. There does seem to be a shift in the argument towards responsibility. In this sense there is some gathering of opinion that a patient shouldn’t put others through the misery of a difficult death as much as a responsibility of families’ to allow loved ones to escape such a conclusion. Pratchett immediately remembered the man he travelled to the Swiss clinic (set up to deliver assisted suicide) with. “I come to talk about what the future had in store for Peter Smedley. I think he was an incredibly brave man and the most incredibly courteous one. As soon as he had taken the potion he shook me by the hand and said, “have a good life, I know I have”. You can’t help thinking that this is style – to die like that. And then he was gone.
I had a whole mixture of feelings because it was, a man is dead – that’s a bad thing. But he wanted to die, because he had a very unpleasant disease and he certainly had all of his marbles. He got what he wanted which is a good thing.”
Dealing with grief
Death has an effect on everyone involved. It is likely to be a highly unsettled time when everyone in the room simply wants the best for everyone else. The problem is that our perceptions at these times can become skewed.
The other major factor appears to be background and upbringing. For religious people the real question is arguably: ‘is it acceptable in the eyes of God?’ For the moment, the law seems to side with them and it is arguably unfair to make people without religion bear this weight. Pratchett says: “I wouldn’t want you to think that it’s taken over my whole world; I only got into it because I had written that piece in the Daily Mail and that had started a bit of a storm. I objected to the people who were against – the people who said you can’t do it like this or this. Once you start going through this you find that ultimately those people fall back on saying that it’s against God’s law.
Regrettably or not, God’s law doesn’t seem to be running quite so well as it used to. I’m a humanist and on the whole I don’t want to take orders from the Vatican or God. “
Trusting our instincts
The instinct for survival trumps most of the others; so it can be rationally suggested that a decision to die is the result of an unsound mind. SPUC Pro-Life hasn’t suggested as much but have certainly stated that we need to look at further ‘what if’ scenarios in order to give anybody considering such a deed every opportunity to follow a different path. They also persist in the belief that the popular notion of suffering or a loss of control isn’t undignified but is actually a part of the human condition. Ozimic summarises: “the coordinator of our ‘no less human’ group has multiple disabilities and has had a great deal of physical and mental suffering through her life and for many years she had strong suicidal tendencies and she attempted to commit suicide. But she was shown by her friends that they loved her and that her life was of value and she said that if they had not done that, she’d have missed the best years of her life. She now campaigns against assisted suicide and euthanasia and tries to convince people who are depressed or who are having difficulties or who do feel undignified to try to see things differently.
Pratchett disagrees. Although he does agree that under certain circumstances he’d be disappointed if somebody were to make a rash decision. “Throughout this whole debate I’ve said that I’d be very upset with say, someone who is 19 and wanting to die; especially because their girlfriend had walked out on them. After all, you can do things: get a better hairstyle, go to discotheques with low lighting and you never know. I think there are some ailments that none of us would wish to have and in those cases I think that many of us would think that we know that death is going to be the ultimate end.
You may not agree with someone’s decision to leave before the whistle but I think it’s their decision and whilst they’re compos mentis then I’m not certain why society should intervene.”
If certain parties want to criticise assisted death, should they also criticise assisted living? Beyond preserving dignity and protecting people from pain, is keeping someone alive beyond their natural capacity equally ‘playing God’ as helping somebody to reach their end a few days or hours quicker than they might otherwise?
Ozimic treads carefully saying: “Obviously life prolonging treatment needs to be calibrated in a way which is in proportion with the patient’s medical condition and their state of health and their suffering etc. There may be cases where a patient didn’t need to be given the level of treatment and level of medication etc because they were in the dying process and that unnecessarily interfered in that dying process. What we are concerned about here is the opposite, of doctors having some sort of power to end life or shorten life.”
Perhaps we have a cultural responsibility to adopt a more realistic view. The whole issue appears to be shrouded in the taboo surrounding death. Whilst we need emotions and common humanity to be included in our decisions we shouldn’t allow them to become an indulgence.
Bringing balance to the law
Given that UK law broadly defends the position adopted by SPUC Pro-Life it may be time to adjust it towards a more balanced outlook. Of course pro-life lobbying groups are absolutely against any such notion and campaign vigorously against such a change.
Pratchett has been studying the landscape of the debate for years now and illustrates a new (to the UK) way of looking at things. It would require a change it the law though. He explains: “I suggested that we, in effect, take a coroners court the other way around. So Mr Smith’s got his wife with him and the rest of his family and let’s say he’s got motor neurone disease or whatever and he wants to die and they’ve got his medical records etc.
The coroner’s court sometimes has a coroner’s jury who are normally two local people known to the coroner as decent and amiable people. The point of this is that their insight into what is being proposed may well be based on the conversation when something unexpected comes up or it may be that they say “Mr Smith you’ve made your case: Your wife has said this; your doctor has said that…. We wish you all the best”. Or they might possibly, in looking over his shoulder be thinking about how much he has been influenced by his daughter. The kinds of people who become coroners know people. They’re good at reading people.”
One of the problems that SPUC Pro-Life has with compromise is that they view seen the current law as eroded, in terms of it’s current application and so worry that a more lax approach would result in an even looser interpretation. Ozimic asserts that: “Those type of safeguards are in operation or are meant to be in operation in Holland for example, so we have no confidence in those and we know that there are often miscarriages of justice. We can’t now give the power of life and death over what would be a large number of innocent human beings to so-called experts, people who are appointed say, by a political process or a vested interest. We simply have to return to the fundamental basis of medicine which is to preserve life or prevent suffering and to treat illness rather than now appointing medical or medical legal people to a committee to decide who qualifies for death and who doesn’t.”
I asked both Ozimic and Pratchett if they felt that a change in UK law to support some instances of assisted suicide was inevitable. SPUC Pro-Life’s position was predictably entrenched but not without reasoning with Ozimic stating: “No, I think for many Parliamentarians and people in society it is a step too far to give this direct power of life and death to doctors and clinics like the one in Switzerland. We’ve seen that legislation tabled in Parliament has been rejected several times and it’s also been rejected several times by the British Medical Association so I don’t think it’s inevitable that the law will change.
Although Pratchett is also committed to the pro-choice movement, given that he is speaking as an individual, he has much more freedom to state his personal feelings. SPUC Pro-Life currently feels that the law is correct (although they would like to see stricter enforcement). Pratchett simply feels that he has grounds to continue to debate its validity to our own time and social attitudes. His passion and determination are no less clear as he concludes: “We are a very stable country, I think we’re one of the most stable in the world. We are a bunch of nut jobs admittedly but we are a fairly stable lot of nut jobs and the idea that if one person is allowed to die means that everybody else will want to do it too is unlikely.
Dealing with bias
For the moment we are lumbered with law that is biased towards the pro-life campaign and in need of adjustment to the way we live today. Whilst there is some sense in erring on the side of caution, people continue to suffer and are having their rights to ‘living’ and as an adjunct, ‘dying’ denied.
Certainly there are better minds at work on this issue than mine but I do think that further compromise is necessary and that pro-life campaigners cannot expect everyone to respect a law fundamentally based on religious doctrine.
Every case is different and should in my view, be examined from different perspectives that always include the views of those closest to the patient, medical practitioners and some form of living coroner. A collective decision should then be presented for record as a starting point.
There are loopholes and imperfections with these suggestions but it does seem that more compromise and choice is needed if the public are to be expected to provide the necessary consent to continue in their respect of the law.