I welcome this opportunity to share my thoughts relating to the Rights of the Terminally Ill Bill. I agree with Mr Cohen when he says that terminally ill individuals should be able to die in dignity and with comfort. However, I do not think this bill is the way to achieve it.
Today I would like to explain why I do not support a change in the law to allow euthanasia. I will do this in two stages:
1. Euthanasia should not be legalised because it is increasingly unnecessary.
2. Euthanasia should not be legalised because it is dangerous.
During my talk I will refer to some comments made by Mr Cohen during his second reading of the bill last year, as I believe he is mistaken regarding the practice of palliative care and the implications for the legalisation of euthanasia.
In our discussion today, euthanasia will be defined by the bill before us, that is, the deliberate action taken by a doctor to terminate a patient’s life for compassionate reasons.
I don’t know how many terminally ill patients I have cared for in the past, but I imagine it must be in the thousands. I would like to assure the audience today that at the end of your life and that of your loved ones, you will not be faced with only two options - on the one hand pain and suffering, or on the other hand, euthanasia. There is an alternative, and it is that alternative which I would like to present to you as the reason why legislation for euthanasia is unnecessary.
By now I am sure all of you have heard of palliative care, but I would like to quickly define it for those of you who are unsure of its significance. As explained by Palliative Care Australia, palliative care is specialised health care for dying people aiming to maximise quality of life, and to assist families and carers during and after death. It is holistic care. Palliative care services acknowledge dying as a physical, psychological, social, spiritual and cultural process that is experienced uniquely by each person and family. Palliative care services respect dying as a shared and ultimately unavoidable consequence of the gift of life.A Commonwealth review in 1997 estimated that less than half of the Australian population that would benefit from palliative care, receive it.
Why is this?
The main reason is that, although churces established the first hospices in the 19th century, the modern palliative care movement is relatively new. There was no mention of it when I was at medical school (not so long ago): we were educated in an era of technologically sophisticated medicine where dying patients were viewed as failures. I believe this is a significant point. While this educational deficit has now been rectified for medical students, you must realise that there are whole generations of doctors in the community who are practising medicine, unaware of many of the advances that have been made in this area. Just by discovering that different types of pain respond to different treatments has revolutionised care of the dying. GPs may also be unaware of the benefits of the multidisciplinary approach. That is, involving a team with doctor, nurse, social worker, chaplain etc.
This has led to the situation where far too many people in the community have seen someone die badly. Perhaps in pain, perhaps without dignity, perhaps in turmoil. Maybe this is your experience. This should not happen. But it still does sometimes, and as a result, people like Ian Cohen and Marshall Perron from the Northern Territory, call for the legalisation of euthanasia. We are told that a large percentage of the population approves such moves. While I have serious misgivings about the methodology of some of these surveys, I have no doubt that many people would say they are more afraid of dying that of death, because of the suffering they have witnessed in others.
However, the public needs to be better informed of their options when they are faced with terminal illness. For one, I find that many people are unaware of their right to refuse treatment. No-one has to undergo futile or burdensome treatment if they don’t want to. NSW has traditionally followed a non-legislative pathway in the area of End of Life Issues, with the Dying with Dignity Guidelines published by NSW Health in 1993. This document clearly supports patient autonomy in decisions on refusal of medical treatment. Knowledge of the right to refuse treatment would ease many of the concerns felt by those who fear being kept alive by artificial means against their wishes.
However, if someone with progressive disease should start to experience discomfort, much can be done to help these people. The World Health Organisation has estimated that up to 90% of pain problems could be managed by general practitioners if they had the knowledge and expertise required. Not everyone needs to be seen in a palliative care specialist unit. But all dying patients would benefit in some way from exposure to palliative care in some form. The aim of palliative care is to relieve symptoms and to neither hasten nor defer death. It aims to liberate patients from the discomfort of their symptoms so they can do the important things they want to do before they die. Their problems may or may not be physical. Within a multidisciplinary team, there is always something we can do for these patients.
The overwhelming majority of patients with pain can be helped. Very occasionally the severity of distressing symptoms may require careful sedating of the patient. The patient may be delirious. This is done carefully in consultation with the patient and their family in order to preserve the patient’s dignity. The doses are titrated to allow regular awakening so that the patient and their loved ones can communicate. In all areas of care we seek direction from the patient as to where we should place our efforts.
Our challenge in this new century is to transform our care of the suffering and the dying, not to legalise an act which would all to easily substitute for the palliative competence, compassion and community that human beings need during the most difficult moments of their lives. We need to continue to fund specialist palliative care services and seek to educate the general practitioners who are the primary caregivers so that death is not seen as the only way to relieve suffering.
We also need to recognise that, essentially, suffering is not a medical problem. It is an existential problem which extends beyond physical pain. Suffering is influenced by psychological, cultural and spiritual factors.
As a society we have lost touch with the spiritual concerns surrounding death. We don’t know how to die anymore. We have lost our traditions and many people have ignored the spiritual dimension for years by the time they face death. This can be scary. Often pain and other physical symptoms can be dealt with and the suffering may well remain. In essence, suffering is not a medical matter, and we should not medicalise dying just as we should not medicalise living.
Why do we medicalise euthanasia anyway? Does it make it seem safer? But what will happen to doctor- patient relationships if doctors cannot be trusted to always be a protector of life? Commentators on the Dutch situation tell us that many elderly people in Holland are now scared to present for medical care. Disability groups issue cards so their members can indicate that they don’t want to be killed.
The practice of euthanasia violates historically accepted codes of medical ethics since the time of Hippocrates. The World Medical Association, Medical Associations and Palliative Care Associations in many countries including Australia have all been firmly opposed to a change in the law to permit euthanasia.
If we therefore accept that dying is part of life, are there any positives?
When a person is dying, he and his family find themselves in a crisis situation with all the joys and regrets of the past, the demands of the present and fears of the future all brought together. Help may be needed to deal with guilt, depression and family discord, but in this time of crisis there is the possibility of resolving old problems and finding reconciliations which greatly strengthen the family group. There is an incredible potential for personal and family growth at this stage and it is because of this that most palliative care workers object strongly to the legalisation of euthanasia. When relatives think back on the last days of their loved one, how much better to remember a time of peace and reconciliation than one of anguish which is violently cut short.
Death does not have to involve pain and suffering.
I might mention that recent papers in the New England Journal of Medicine indicate that in both the Netherlands, where euthanasia is legal, and Oregon USA, where physician assisted suicide is legal, the complication rate is up to 23%. That means, for nealty one if four cases, things go wrong. Euthanasia apparently does not guarantee a peaceful death for everyone.
Palliative care is improving all the time. The compassionate solution is to promote this care. Legalisation of euthanasia is unnecessary.
Now for my second point. Legalisation of euthanasia is dangerous.
Arguments supporting such laws presuppose a world of ideal hospitals, doctors, nurses and families. But we do not live in an ideal world. We live amongst humans who make mistakes and can have selfish motives. And for this reason, legalisation of euthanasia carries the following risks:
Firstly, we cannot be sure that euthanasia, once legalised and socially accepted, would remain voluntary. Vulnerable and burdensome patients may be subtly pressured to request termination of their lives in ways which are not sufficiently overt to be avoided by this legislation.
Consider the difficulty of having a relative in hospital long term. The stresses of daily visits can be enormous. These patients aren’t stupid. They know the burden it is for you. They don’t need to be told, and it is unfair to introduce this pressure, this option of euthanasia into their environment.
A second risk is that doctors may not be able to resist the extension of euthanasia to those who don’t, or who are unable to, request or consent to termination of their lives. Government reports from the Netherlands regularly show that a significant number of cases of euthanasia are performed without patient consent. The Remmelink Report from 1991 showed that 1000 reported cases were non-voluntary. This is not speculation, this is observation. There are stringent guidelines in place in the Netherlands, but they have not stopped the abuses.
I am concerned to read in a recent study in the Medical Journal of Australia that more than a third of 683 Australian surgeons surveyed report giving drugs with the intention of hastening death, often in the absence of an explicit request. Apart from the worry that they did not consult the palliative care team, if these doctors do not follow the law now, what guarantee do we have that they will do so once euthanasia law is in place? It is distressing for doctors to watch their patients die. Don’t tempt them.
Thirdly, with euthanasia legalised, would we be a caring society ready, in times of financial constraints, to invest money and resources in continued attempts to improve the care of the terminally ill. The Health dollar is being stretched, but I believe western medicine has progressed as far as it has because we have valued all human lives and continued to seek cures for the diseases which afflict us.
Lastly, with legalisation of euthanasia, would we avoid the intolerable abuses that other civilised countries have slipped into before us. We all reject the notion that the Nazi euthanasia programmes could happen again, but at the Nuremberg trials it was established beyond doubt that they had their origins in the promotion of mercy killing by German doctors in the 1920’s. Once you accept that some lives are not worth living, what will happen?
In the Netherlands, euthanasia was legalised last year after 20 years of widespread practice under legal guidelines. By the time that law was passed, the courts had already legitimised the death of patients not terminally ill. Shortly after the law was passed, the Dutch Health Minister suddenly widened the debate by advocating the use of suicide pills by old people who are ‘tired of life’. The campaign to legalise suicide pills is now underway and the Dutch Voluntary Euthanasia Society is hoping for a successful conclusion soon.
Will our Voluntary Euthanasia Society also add new criteria? Already the bill before us is very vague as to who will qualify for euthanasia. It suggests in Clause 7 that anyone suffering from a disease which will result in death and who does not find treatment acceptable can be euthanased. But what does that mean? Untreated diabetes can be terminal. Can someone who doesn’t like needles receive euthanasia to avoid insulin treatment? Can a multiple sclerosis patient be killed after diagnosis to avoid psychological suffering, despite the possibility that they may be physically well for another good 20 years? Both illnesses qualify under the Dutch rulings. Also psychiatric illness and handicapped newborns. We ignore the lessons of the Netherlands at our peril. The signs of overt discrimination and racism and utilitarian insensitivity to the vulnerable in our society are too prominent for us to be naﶥ about proposals to decriminalise euthanasia .
Now let us look at what is probably the main argument for legalisation of euthanasia. That of the right of the individual to determine the timing and manner of their own death.
I want to consider this argument in light of what I have just said. Despite all the advances of modern palliative care, perhaps when all physical problems have been addressed, there will be a small number of patients whose suffering will persist - yes, there are limits to what we can do, even in the new millenium. Some of these patients may request euthanasia. Now, it will not always be because of pain. A review in the latest edition of Ethics and Medicine found that the most common reasons for a request for euthanasia worldwide tended to be psychosocial, that is things like social isolation, and a fear of what might happen, rather than what has actually come to pass. The symptom most difficult to treat in palliative care is probably fatigue, or lack of energy. But whatever the reason, euthanasia is what they want. What are we to do for this small number of people who rationally request that their lives be terminated after all our attempts to care for them are still not enough?
There is tension here, between those people who rationally request euthanasia, and the vulnerable people who would be at risk of being killed against their will, as is happening now in the Netherlands. Autonomy - the right of the individual to determine the timing and manner of your own death - versus Justice - the right to protection and security of the person as expressed in the values of the larger society. How are we to resolve this?
Is there a right to die? Well, man is free to end his life when he chooses, but that does not mean he has a right to do so. He certainly does not have a right to compel someone else to kill him.
But many people say that when they are facing death, they would want to be able to request euthanasia. Mr Cohen has quoted 60-80% support in the community.
Well, let’s see how many of them actually follow through. A study from the Central Sydney palliative care service published in 1995 showed that during a 12 month period, only 2.8% of patients expressed a wish to die when first seen. After palliative care was commenced, the number was reduced to less than 1% of those referred. The New England Journal of Medicine showed the same pattern in Oregon, where only 0.56% of cancer deaths occurred by physician assisted suicide. This, despite the surveys reporting 60% of the population in favour of physician assisted suicide. There is no publically funded palliative care programmes in Oregon, so I expect the numbers would be even lower if it was. But we are left with a figure of less than 1% of dying patients actually asking to be killed.
I am not surprised by these figures. It is my experience that patients at the end of life are more likely to want more time, than less.
The way I see it, we do need to respect autonomy, but not as an absolute. And anyway, someone is going to lose autonomy whichever way you go, be it deciding for the incompetent person, you must die, or for a competent person, you must live. Are we going to throw out the right of the incompetent for protection? Surely it is the responsibility of our society to care for those who cannot care for themselves.
An English lawyer reviewing the Dutch situation for the House of Lords in 1989 wrote this: ‘The value of the Netherlands experience is not in the establishment of a right to die a dignified and humane death. The value is in providing an example of the perils of active voluntary euthanasia as a whole, and for each vulnerable person within that society. Certainly, older persons who are medically dependent and disabled deserve substantial and procedural safeguards to protect their rights to life, liberty and property equal to those given to common criminals. A right to die, once accepted, too easily becomes a duty to die, or an excuse to kill. Euthanasia in the Netherlands is a notorious example of how unprincipled ‘humanitarian’ intentions, produce chaos in law, medicine and health care”.
In view of the very small number of people demanding autonomy, I believe that justice must prevail. Those demanding euthanasia will not have what they want and that is terrible. But we must protect those frail and vulnerable people who wish to live.
The Cohen bill suggests that euthanasia only affects the patients and their carers. But this is not the case. It cannot be. Legalisation of euthanasia must affect society as a whole because in legalising euthanasia we are changing one of the most basic tenets of our society. That is, that we do not kill each other, even for reasons of mercy and compassion.
We can see what happens to a society that accepts that some lives are not worth living, as is the presumption underlying legislation such as that we are discussing today, just by looking at the situation in the Netherlands. The elderly, the disabled, those who are a burden on society are being encouraged to end it all. They are not valued, they are told that their lives are not worth living. How does this affect our perception of them? Their perception of themselves? Our understanding of the value of life? It is interesting that the euthanasia debate is a phenomenon of western countries at a time when we have more medical cures than ever before. It has been suggested that the euthanasia debate is a reflection of loss of direction in western society.
Dying forces us to face the big issues of life - what does it all mean, what are we doing here? These are matters of a personal and spiritual nature. By legalising euthanasia we are saying that death is meaningless and therefore life is meaningless. Is this the attitude we want to pass on to future generations? We already have a problem with teenage suicide.
We need to reject this type of thinking. All lives are valuable and we need to continue to protect the vulnerable in our society from the dangers that legal euthanasia will bring. We do need to improve the lot of those dying in our community but not this way. Euthanasia is increasingly unnecessary and it is dangerous. For those of you who will have the opportunity to vote on the Rights of the Terminally Ill Bill, I ask you to vote no.
Dr Megan Best
March 2002
