8. STEVEN

To the Editor,

 

My parents are assisting me to write this letter due to reasons which are a matter of public record. Although I have some feeling in my arms and hands, it takes me roughly an hour to write a single sentence, so it was necessary for them to help me. My mind is intact, however, and these words are my own. I have checked and approved everything contained in this letter. I admit that I am not much of a writer, so if I come across as clumsy, the fault is mine and not my parents. They have been nothing but supportive throughout this horrible ordeal and although they have some reservations about my choice to end my life, they recognize that it is my choice and nobody else’s business.

I understand that some people are upset about my decision. I’m sorry for that. It was never my intention to mock or belittle the disabled or what they have to go through every day. They’re braver than I could ever be, because I cannot live as a disabled man. I am not strong enough.

It’s been one year since the accident happened and I’ve had plenty of time to think about who and what I am, so this isn’t a knee-jerk reaction. I’ve tried to reassemble my life as best I can and I’ve got nothing but appreciation for the professionals who helped me during that recovery, but they could only do so much; they had very little to work with. If I was a car, they would have written me off at the scene of the accident.

I am a sportsman at heart, it defines who I am, and I weep every night when I think what I have lost. I will never be able to come to terms with that. Even my psychiatrist has conceded that I am not suffering from any mental aberration and that my arguments against continuing are intelligent, coherent and not based on emotion. I am depressed, but I defy anyone not to be depressed in similar circumstances. I do not want to spend the rest of my life on anti-depressed designed to fool me into some kind of fake happiness.

Despite my decision, I hope that the professionals who helped me do not believe their time was wasted. They gave me the chance to say goodbye to the people I love, which I would otherwise not have been able to do. They also taught me the limits of my endurance. I thought when I played rugby or did a heavy session at the gym that I was a hard bloke, but the process of being wheeled in and out of endless hospitals for endless tests and treatments and drug programmes has finished what little willpower I had left. I didn’t know there were so many ways to measure the human body when it failed - certainly a lot more than when it worked! For a while I even managed to convince myself that if I just trained hard enough, increased my stats, took the right supplements, I would eventually be springing around like new. Even the smallest whisper of strength or feeling somewhere new in my body felt amazing. If you have that mind-set, you can look a doctor in the eye while he’s giving you more bad news and think to yourself “I’m going to surprise you. I’ll be back playing rugby in a few years.” You can flirt with the prettier nurses and ignore the signs of pity in their faces. Then it hits you all at once. You’re trapped in there. You’re no-one without your body and you’ll never be able to run again or walk again or even piss on your own again. You’re a child in a wheelchair. That’s how people see you, a child in a wheelchair.

I want people to remember me the way I was. Those are the last memories that mean anything to me. I’m tortured by how good my life was before this happened and unless you’re in my situation, you can’t understand how that rips into me every day. Physical pain is one thing and it can be managed, but that kind of pain doesn’t let up. The newspapers seem to delight in printing pictures of me in the rugby club, me with my girlfriend, me on holiday with the lads, as if the comparison wasn’t obvious enough with my current state. So the idea that those same newspapers can moralise over my decision to go to Switzerland, the same papers that delight in showing before and after photographs of me, defies belief.

I am a proud Englishman and I wish I could die at home with the people I love around me, holding my hand, whispering into my ear how much they care for me. The law in this country means that I have to travel to a foreign land where I cannot even speak the language, and spend huge amounts of my parents’ money on airfare and the fees associated with my death and my subsequent repatriation. This cannot be right. My grandfather died at home and it was good, dignified. I remember thinking at the time that we could be proud that we supported him and that we were with him right up to the second he died.

I understand the arguments against changing the law are strong ones but most of these can be met with regulation and common sense. No – one wants billboards advertising assisted suicide as if it were a McDonalds drive – through, but we have to trust in our country’s values that it can be provided in a sophisticated and intelligent manner. Dignitas employs an extensive system of professional examinations and checks that take place over a long period of time. I gather from talking to one of their managers that less than 30% of the people who attend their clinics actually go ahead with the service. There are numerous safeguards in place to ensure that the procedure is followed without deviation or corruption, and when I look at how humane, dignified and safe the Dignitas clinics are, I cannot help but feel that the reason that we fear the introduction of laws allowing assisted suicide are due to our own lack of trust in our lawmakers, our doctors, our lawyers and even our own families. Britain’s inability to at least look at this issue in any detail shows a complete lack of seriousness. We have in our mind foremost some kind of apocalyptic situation where grasping families are colluding with grasping clinics and grasping lawyers to push some poor man into the flames, but this is childish nonsense. So is the idea that murderers might successfully attempt to hide their behaviour away or seek to justify it with these kind of laws.

We are denying the human rights of genuinely suffering people on more than the unfounded fear that we cannot run a safe, kind and humane system like Dignitas does in Switzerland.

There’s a lot of misunderstanding about such organisations. They’re very professional and you have to go through an extensive screening process before they even begin to make arrangements. It’s scaremongering to suggest there’s some kind of factory line mentality in place where we get treated like animals to the slaughter. I’ve been told the dropout rates are high, which means that only those people who are serious and committed follow the process all the way though. The company then books a final date at a comfortable external location like a hotel room or a spa where your loved ones can be around you, if they so wish. There’s no shocks or surprises and if you want to turn it into more of a ceremony, they allow you within reason to do so, but the emphasis is on it being a medical procedure rather than anything else. The bare bones of it are as follows: they initially administer an oral dose of an anti-emetic drug, then half an hour later you receive a lethal overdose of powdered pentobarbital dissolved in a soft drink or water. During that half an hour, you are asked at intervals whether you wish to go ahead. If you are physically able to take the fatal dose yourself, you take it yourself. I intend to drink it by straw so that it remains my decision. Within ten minutes, I fall asleep, my breathing gets shallower until I fall into a coma, and then within thirty minutes of taking the overdose, I suffer a full cardiac arrest and die.

If it sounds strange for me to relate the nuts and bolts of the process in such a simple straightforward way, this is genuinely how I see it. My life has reached a point where it has no value to me and I do not want to carry on. In order to die, I have to go through a process and that is what I intend to do. If I had any doubts, or believed I might feel differently a few years from now, then I would take a step back. There are plenty of opportunities with the process to change your mind, but I do not intend to do so and I know that I will be dead by this time next month.

To those people who have religious objections to me killing myself and take a religious view on the sacred nature of life, all I can answer is no God of mine would force me to live a life of constant misery, pain and humiliation. I was brought up C of E and the main message that was drilled into me from an early age by the teachings of Christ is you should be tolerant of other people’s point of view. I should not have to “make a case” for the choice to take my own life. It is my life, my body and that is the end of the argument. I’m asking for mercy. Is that too much to ask?

I believe that in any event, in fifty years' time, the argument will be won and we will have clinics in this country. All I hope is that this badly-written letter in some small way re-ignites the debate and pushes us closer to that time.

 

Yours sincerely

 

Steven Edwards

 

 

[Ed: there follows a letter from Professor James Dangerfield of the University of Essex on the same issue. Professor Dangerfield requested space to write a full article concerning assisted suicide, which would have effectively acted as a rebuttal to the heartfelt letter from Mr. Edwards above, but it was felt this would give the larger piece an unfair advantage in terms of presenting and expanding key arguments and introducing outside support material.

It was felt therefore in the interests of fairness and balance, we should refuse the request for an article but agree to publish an unedited letter of a similar size from Professor Dangerfield at this time. This does not preclude us from dealing with the controversy surrounding assisted suicide at a later date in a wider form, including a further contribution from Professor Dangerfield, but it was felt that one of our journalists would be better placed to write such an article. Mr. Edwards was consulted and agreed with our approach.]

 

 

Dear Editor,

 

It is impossible for us to imagine the pain and suffering of those who are severely disabled or terminally ill. As human beings, we are instinctively sympathetic but we can have no real sense of scale unless the destruction is also wrought on our own life. The tragedy is too great for us to ignore, we protest, but in truth we are programmed to attribute more importance to immediate concerns, unless the sufferer is so close to us that we share those concerns as if they were our own. There are numerous documented cases of sympathetic reactions of this kind, such as partners developing similar sleeping patterns or a limp or a change in eyesight in reaction to the afflictions of their loved ones.

It is an easy mistake to assume that our natural sympathies (at whatever level) should be the basis of a strong ethical or legal system, but legislating on the basis of isolated cases or emotion or mass appeal has a long history of creating bad law. The crowd remains untruth. We have only to look at the lax gun laws in some States of America which are currently sending tremors through the racial divisions in that country, in particular those States that favour giving the shooter the benefit of the doubt if they felt threatened. The laws in and of themselves were based on an emotional response to a perceived belief that the criminals were “on top”, “all carried guns” and were “amoral killers”, and that owning a gun was in some way fighting back against both the criminals and an interfering central government. Putting aside the truthfulness of any or all of these factors, the change in the law was clearly a lunatic’s charter, dropping any pretense that reasonableness or civilization should be guiding factors in legislation. The consequences were as chilling as they were predictable.

We move to assisted suicide. The three main argument against AS are well known but it is worth re-iterating them here in summary: (1) that it will cause a change in our view of the value of life and in particular “disability”; (2) there is a conflict of interest between the doctor and his patient, and the patient and the financial interests operating within the health system; (3) the slippery slope argument, which posits that the small step of allowing a small amount of perceived deserving cases commit suicide will eventually lead step by step to increasing circumstances in which suicide [and possibly murder] are justified. All of these arguments are interlinked and I have a relatively small space to elucidate them, so I will discuss them generally.

The first argument is perhaps the most developed because it is commonly raised by a very vocal religious lobby and has been debated at length. Life is of course the central fact of our existence and the most valuable possession that each individual holds as their own. Even if we do not believe it is sacred in the sense in which Christians suggest [I am a committed Methodist and do indeed believe this], one might say it is self- explanatory why we as a community guard against any infringement upon it, especially from the State. Once we accept that life is a category rather than an essence, we offend the deeply held beliefs of many and open the right to discuss whether one life is “better” than another or more “disposable”. It is intellectually dishonest to suggest that euthanasia leads naturally to eugenics, and most supporters of the slippery slope argument have not gone this far, but it is equally dishonest to say that if we allow people to choose the end of their own lives because those lives have falling below a certain standard that we are not also devaluing life itself.

I sympathise with Steve Edwards; he was struck down in the prime of his life and will be confined in a wheelchair for the rest of that life. I should say however that plenty of people have gone on to enjoy happy lives in similar circumstances. It seems to me that once we have moved from a society in which we encourage and facilitate disabled people people of varying abilities / disabilities to meet their dreams and aspirations to one where we regard the quality of life as a defining factor in whether that life should exist, this is a sea change in opinion for the worse. It makes other arguments plausible that we currently find morally repugnant, such as how we value the quality of an old person’s life against the resources that they take up. I would not be at all surprised if in this brave new world significant pressures are placed on old people to simply move out of the way as the next generation marches through.

The Pro lobby seek to avoid this argument by stating baldly that a proper system would only allow people to kill themselves who are suffering from terminal diseases and crippling pain, but this leads naturally on to the second argument, which is a practical one. Quite apart from the indignity of a person having to prove they are worthy of assisted suicide, this puts the decision of whether a person dies in the hands of a medical professional and not with the individual. In the case of a private healthcare system, whether you live or die has a financial consequence to the system, i.e. it is preferable that you die. In the case of a state operated healthcare system like the NHS, the same financial equation is in place but is lower in the mix.

A more important line would be crossed, however, that of giving the State the power to take the lives of its citizens (under certain circumstances). It is impossible for us to consider that the State in its current form and scope simply did not exist 200 years ago and our generation and the few that preceded us are in fact experimenting with the form of the State. The ideological exercise of power without restraint or consideration for individual life led directly, I believe, to the policies of National Socialism and Communism, and it is not a stretch to say that the sanctity of life acts as bulwark against this type of totalitarianism. We seem to have accepted the right to freedom of speech, family life, freedom to associate, so it seems peculiar that we should allow the State any place in the single most important decisions of our life. The naysayers claim that the State already makes the kind of life and death decisions about care and whether expensive drugs should be used for terminal patients. I would answer that one folly does not have to usher in another folly.

We should also note that doctors are singularly unsuited to this kind of work, as they are trained to save lives, or alleviate pain, and not to take life. Decisions of this type would inevitably be delegated to a different level of administration.

Neither type of system is well suited to the detailed analysis necessary before the stamp of approval is given for assisted suicide. It is therefore highly likely that specific smaller clinics will grow up in the same way they have in European countries where some euthanasia is legal. The same problems would occur as noted above, but accountability would be even more difficult to guarantee. Also: limited companies have a duty to their shareholders to ensure a certain level of profitability, which I predict will have disastrous effects. I oppose these type of clinics explicitly.

Let us then be clear about the world that we would be ushering in, as we would not simply be creating an “exception” for the most worthy cases in a medical system. The slippery slope argument does not even need to be invoked (and I have my doubts about whether it has any validity in any event) to see that this change could not be limited in the way suggested, as it requires a sea change in thinking for the worse. I want the NHS to regard my health as something worth protecting at all costs and that if the decision has to be made to remove life support, it is made with the utmost seriousness and consequence to the professional with my care. I do not want it to be the tick of a box that decides my fate.

There is a fourth argument that I have not put forward in any detail because I do not have reliable statistics on the same and it is a very sensitive one. It seems to me common sense however that a good reason for not introducing assisted suicide is that it occurs informally across the country or abroad, in places like Switzerland. This is a matter for personal conscience and I hope that I never have to face the decision to take a loved one’s life, but I accept that the decision is sometimes made by family members in one form or another, often with the unofficial assistance of doctors and nurses. I understand that there are legal consequences to such actions, but it is clear to me that the Courts are willing to turn a blind eye to assisted suicide in this sense and accept it where such decisions are made out of love and at the request of the patient. While no politician or clinician could ever explicitly acknowledge this is occurring, or condone it, it seems to me infinitely preferable than granting power and resources to professionals or businessmen so they can be actively involved in the process.

 

Yours sincerely

 

Dr. James Dangerfield,

University of Essex