[I want to thank Isobel for allowing her email to the Members of the Scottish Parliament on Margo MacDonald's assisted dying bill, which she is reintroducing to the House, to be published here. This is a thoughtful and courageous letter from someone who is on the brink of death, and wants to be in control of her dying. While I wish her well in her ongoing treatments and care, I also recognise with admiration her courage and her determination to argue for her right, and the right of others, to receive assistance in dying and to be permitted to die with the same dignity she shows in her appeal to the Members of the Scottish Parliament.]
I understand Margo Macdonald’s End of Life Bill will be debated & voted on in the the near future. I wish my views on this matter to be known and considered.
I am 55 years old and suffering from Stage IV Breast Cancer. Although I have great faith in, and admiration for, the scientists & doctors who work tirelessly and with incredible ingenuity to produce treatments which give people in my situation a good quality of life for as long as possible, the fact remains the condition is incurable. I have, therefore, had to come to terms with my death in the not too distant future. In this I am resigned, as I can do nothing to change the fact. The manner of my death, however, is another matter and, over this, I strongly feel I can and should be able to exert a degree of control.
This Bill would mean that those with the necessary expertise, i.e. doctors, would provide a suitable drug to ensure a peaceful end. I have heard too many horror stories of dreadfully distressing attempts by family members trying to help a loved one die. A doctor takes an oath “to do no harm”. This can be interpreted as prolonging life at all cost. Weight must also be given, however, to the principle of providing relief from pain and distress, even if this results in the end coming slightly sooner for a terminally ill patient. I can understand that some medical professionals would not wish to be involved in assisted suicide and so there must, of course, be a means of allowing doctors to “opt out” if it gives them a problem of conscience.
I supported Margo’s previous Bill, but its defeat came as no great surprise. The breadth of qualification for assistance – with which I agreed – was always going to allow plenty of scope for alarmists to do their worst, ignoring examples in other parts of the world where protection for the vulnerable has been put in place and has been effective. Her new Bill is, of course, greatly pared down to applying only to the mentally competent terminally ill. Frankly, it is beyond me how anyone can seriously justify objecting to this, other than sadists and the religious. In a secular society such as ours, the latter – a minority – should not be allowed to force their beliefs on the majority. To anyone who would want to deny a peaceful and dignified death to the terminally ill, I would ask “Where is your compassion?”, “Where is your humanity?”
At the moment, the most I can do to have a say in how I am treated at the end of my life, is to write an Advance Directive stating my wishes should I be unable to communicate, and this I have done. This, however, only allows me to instruct in the negative, i.e. withdrawal of treatment or, indeed, food & water, but cannot ask for positive help to end my life. This leaves me with the prospect of possibly dying of dehydration or starvation. This is surely the very antithesis of care. Is this the way a civilised society should be leaving people to end their days? Surely a compassionate act would be to help people slip away peacefully. With a law in place such matters could be discussed openly and, if my medical attendant would not be prepared to fulfil my wishes for religious or ethical reasons, I would be able to arrange to be placed under the care of one who would. Removing the uncertainty for medical professionals and, thereby, allowing frank discussion, can only be an improvement for all parties.
Opponents of a change in legislation tell us that good palliative care, and not assisted suicide, is the answer. Firstly, in spite of what they may say, assisted dying and palliative care are in no way mutually exclusive. It is accepted that a point will generally come in the dying process when nothing more can be done. Surely then assisted dying is, in fact, the natural extension of palliative care. Secondly, can a guarantee be given to every dying person that a good level of care will be given? I don’t see how this could be possible. Whether it was provided or not can only be assessed after the event, which is of no use to the person on the receiving end. I, for one, want my final days to be, as far as possible, under my control, or that of my husband (who is of a like mind and supports me completely). The assertion that pain can be controlled is a major worry for me. The World Health Organisation has developed a “Ladder of Pain”, which is a 3-step ladder for cancer pain relief. This goes from aspirin & paracetamol, through codeine, to strong opioids, such as morphine. On their website, it states that the regular administration of these will result in 80-90% of cancer patients being pain-free. This leaves 10-20% of us with the prospect of dying in severe, uncontrollable pain. As I have found that non-opioids & mild opioids do nothing to relieve my pain, and strong opioids cause very distressing side-effects, this WHO statistic, rather that reassuring me, leaves me terrified. (I appreciate there are other drugs which can be used to control pain and probably a number of combinations can be tried. I have already had several of these with no improvement in pain relief and lots of unpleasant side effects.)
The question of “dignity” can also be a point of contention. I once heard a Palliative Care Nurse say that human dignity cannot be lost. As the concept of dignity is entirely subjective, how can she possibly make such a statement? Only the dying person can judge if his/her dignity is lost. As a strongly independent and self-sufficient person, loss of dignity is another of my major fears. Poor care, which I have seen and suffered first-hand in hospital, brings on loss of dignity all the more quickly. I have had more than 30 operations over my life time, for various medical problems as well as cancer. From this wide experience, I can say that it makes no difference what is in the Patients’ Charters, the reality is that hospital staff frequently fall short of the target always to treat patients with respect and ensure their dignity is maintained.
One of the most nonsensical argument[s] against a change in law is that dying people can become depressed, and might just be having a bad day. Any competent doctor would quickly diagnose depression and prescribe appropriately, so this would not be a factor in the request of a patient for assisted suicide. Certainly for cancer, there is a well-recognised “dying trajectory”. I will be very aware, as will my palliative care doctor & nurses, when I have reached the final stage and will know that there will be no more “good days”. To deny us the right of choice on the basis we might just be “feeling a bit low” is insulting and patronising!
With the Bill only applying to mentally competent, terminally ill people, the argument of concern for the weak and vulnerable will be greatly reduced. There is no evidence whatsoever to show that people who have used laws in any of the parts of the world where assisted suicide is already allowed have come under pressure to do so (indeed, the Oregon experience shows the opposite) Any law brought in here would, of course, incorporate the most robust safeguards to protect the weak & vulnerable. Also, anyone at this stage in their illness will be well known to a number of medical professionals, so it seems highly unlikely that outside pressure would not be picked up on. I have certainly made sure my GP and my palliative care doctor are in no doubt how I feel about assisted dying.
We must never lose sight of the point that what this Bill is suggesting will not take away anyone’s right to a natural death. We are simply asking to be allowed a choice. In every survey I have ever seen, the majority of the people in the country want the law changed. A change in the law to allow assistance (even if, ultimately, we did not feel the need to make use of it) would be of enormous comfort to those of us approaching the end of our lives, giving reassurance that we will be allowed to die at the point – which only we can decide – when we can take no more.
If a change in the law is not going to come in time for me, I have to consider what other options may be open to me if I find myself in a position where I can no longer bear my suffering. I will not travel to Dignitas, for so many reasons. I find the whole situation that dying people in Britain are put in such a position just incredible! We are supposed to be a civilised society, but we would have them go through the trauma of a long journey to a foreign country in order to receive compassionate assistance. This often forces people to die earlier than necessary due to their concerns over their ability to travel.
The only remaining option open to me is to rely on my husband to help me, should the need arise. Although he does not want to lose me, he would find it unbearable to see me suffer and do nothing. Anyone who knows us is well aware of my views and would see his assistance as an act of love and compassion. In England, under the DPP guidelines, it is highly unlikely he would be prosecuted. There is, however, still no law to formalise these guidelines. The situation in Scotland is even more unclear. Why don’t we in Scotland take the lead by bringing in legislation, as in Ms Macdonald’s Bill, to make such matters clear and thereby reflect the needs of the modern society in which we live?
- If we accept we all have the right to live, then, surely, we must automatically also have the right to die.
- If suicide is legal, then it is illogical for the assisted suicide of a terminally ill person to be illegal!
- If a much-loved pet is “put to sleep” to avoid suffering, how can a civilised society countenance human beings having no choice but to suffer? (Indeed, if an animal is allowed to suffer, the owner could be liable to prosecution!)
- If a person allows another to suffer while it is within his/her means to stop that suffering, surely this is tantamount to torture.
I hope this email gives you food for thought. I would be very interested to hear your views and comments.