THIS euthanasia debate is our debate and we have not yet been fully engaged in it. This is our debate because we will be the ones expected to write the scripts, to administer the medications and to make the final decision within the boundaries of the law. We will be the ones to be considered lacking in compassion if we refuse a patient’s request or to feel pressurised by patients when nobody else is available. How do we feel about this?
The debate on euthanasia has troubled the medical profession, the parliament and the public for several decades. What is clear is that this is a multifaceted problem, with many shades of grey and no clear answer that serves everyone, but it engenders passion in both advocates and those opposing it.
What troubles me is that I feel that there is a presumption that euthanasia and physician-assisted suicide (PAS) are a doctor’s role – indeed, could it morally, ethically and legally be performed by any other professional? – but that somehow the question of whether we would want to play this role and how it should be regulated has not been fully discussed with us.
Recently a bill supporting PAS was passed in the lower house of the Victorian State Parliament. It will now go for debate in the Victorian Senate. NSW is also preparing to debate the subject.
There are several countries which have legalised voluntary euthanasia and others, including Canada and some American states, which have legalised PAS. The Netherlands was the first country to do so, introducing euthanasia in 1984 and fully legalising it in 2000 under strict guidelines, so there is extensive literature about the practice of euthanasia. In Australia, euthanasia was legalised in the Northern Territory for a short period before the bill was overturned. There have been robust and recurrent debates in many states. In South Australia alone the Death with dignity bill was rejected for the 15th time in November 2016.
Both in the media and in the Parliament we have heard highly emotional stories. These indeed invoke compassion in us all, but they do not lead to the informed debate on this subject that we need.
The bill passed in Victoria has very strict and included well formulated guidelines limiting the availability of PAS to those in severe pain — but only if over 25, not cognitively impaired and likely to die in the next 12 months. Of concern is how these conditions could be expanded over time – the slippery slope. There are ethical concerns in the Netherlands because of an increase in the number of people choosing euthanasia because of mental health issues. In 2010, two people with insufferable mental health conditions chose euthanasia. By 2017 this number had increased to 56.
What constitutes “unbearable suffering” is very subjective and making such decisions would be very complex. In other countries which have brought in euthanasia laws, while the initial laws have been tight, they have subsequently been expanded, for instance to cover patients with dementia, disability and mental illness, and also to cover children. This is what we risk if euthanasia becomes legal in Australia.
Where do Australian doctors stand?
Just as there is a diversity of opinion within the community so there is division within the medical profession.
Internationally, surveys of doctors’ attitudes to voluntary euthanasia and PAS have found that a higher percentage of the general public agree to euthanasia compared with doctors interviewed. They found a different attitude among doctors working in different specialties. Importantly those working in palliative care, perhaps at the coal face of dying, were least likely to agree. In a German survey of palliative care specialists only 5.3 % said they would be willing to carry out euthanasia and this number decreased when asked about assisting patients who were not terminally ill. One hundred and seven of 109 national medical associations affiliated with the World Medical Association have statements opposing PAS.
In a 2016 AMA survey 38% of doctors thought euthanasia should be legalised. So, there is a depth and complexity to this debate. In Australia there is an acceptance that death hastened by treatment to alleviate symptoms does not constitute euthanasia – indeed this is what is currently practiced in palliative care in the final phases of life. However, the AMA statement on euthanasia says clearly that “doctors should not be involved in interventions that have as their primary intention the ending of a person’s life”.
Where do I stand?
I know where I stand. While my head may ask some questions, there is a resounding “no” from my heart, a very strong negative reaction in my body. I believe in the sanctity of human life and that this underpins the oath I took when I first qualified. It is not something that I could do, nor do I think I should be expected to do it.
If that is the case, how could I ask another practitioner to do it?
I chose this profession to attempt to bring relief to suffering in life, not to take that life. That is a power I did not ask for, am not trained for, nor do I want.
It has been generally accepted by the public, by the government and by the profession itself that doctors are the appropriate professionals to work with patients who wish to die prematurely to relieve their pain, be it by euthanasia or by PAS, but how do we, as doctors, feel about taking on this role?
I have over the years cared for many people dying. I have clear memories of a 4-year-old dying of leukaemia, who I treated as a junior doctor, who had a good laugh at me riding my bicycle – a doctor on a bicycle, and a lady doctor at that! The little fellow laughed so merrily, and later that week died peacefully. More recently, I helped in the care of a 2-year-old with an inoperable brain tumour. He loved cows and whenever he was well enough he would say “cows” and his family would take him to the fence where he seemed to find those creatures in some way healing. Did I prescribe pain relief when it was needed? Yes. Could I have even considered euthanasia for those two little people? The very thought sends shivers down my spine.
I have been reading The secret diary of Hendrik Groen, 83 1/4 years old. He writes of life in an aged care facility in the Netherlands. While written with a wry humour, it also touches on the indignities of ageing. In the book, he mentions euthanasia several times and, at one point, he mentions a local clinic where people can go if their GP is “uncooperative”. Would I, under those circumstances, be an uncooperative GP? Such a thought made me grateful that I have never had to explain my own beliefs to my patients, but have been simply been able to say it is illegal. In our roles as doctors, there are other times when we may be considered uncooperative, but few of these, apart from pregnancy termination, invite a moral and ethical stance.
Prioritising adequately funded and more effective palliative care
The proponents of euthanasia would say that those opposing it are disrespectful of patients’ autonomy and dignity, and that choosing their way of dying is a basic human right. They would say that to deny this right is lacking in compassion because we are asking that patients continue to suffer in pain.
As one of many who have been witness to numerous deaths from medical causes, some of those prolonged, some accompanied by severe pain and many by loss of autonomy, I still feel there are other ways to bring dignity into dying, and euthanasia is not the way.
One of the other important ethical problems facing medicine currently is the so-called “futile treatment”, where life is prolonged for inappropriate reasons. There are times as doctors when we share in hard decisions to withdraw care and allow the dying nature has decreed. Debates on euthanasia and ways of reducing futile treatment may both have their answers in effective, accessible palliative care.
The science of palliative care increasingly understands ways to effectively treat pain and other symptoms associated with dying, which in the past have had the potential to cause untold suffering and generate fear for both the patient and their carers.
Pain control in palliative care is not euthanasia. It aims to improve the quality of life experienced in the process of dying and to help patients to retain their dignity. In my experience, doctors are not afraid to give increasing levels of pain relief or sedation to reduce suffering. Doctors are grateful if there has been discussion in the form of advanced care directives that can assist in their decision making, but these need to be more effective, universal and readily accessed, perhaps through a central, controlled and confidential data bank. Priority needs to be given to researching and funding effective symptom control for people who are dying, so that some of the fear may be removed, making euthanasia less needed.
Can dying be a time of healing?
Dying can bring healing even when pain and other symptoms are overwhelming. Families may come together, forgiveness may be given, solace may be found in caring. The patient may be able to connect with the essence of themselves in ways that they may otherwise not have found, and may experience love such as they have never felt.
People professionally caring for the dying often have the capacity to bring true compassion when there are no others to bring it, and it is of utmost importance that they be given the time and space to do so. I have also been involved in care for several patients where a whole community has come together to care for the dying. Sometimes this has been formalised, sometimes it has been spontaneous, as in a group who knew each other through Alcoholics Anonymous. In all these situations, the giving and receiving of love was beautiful to experience and healing for the carer and patient alike.
I found this piece written by a woman who had died from a sarcoma, had been in a lot of pain and reacted badly to chemotherapy. Her husband wished it to be read by those debating euthanasia in the British parliament.
“Contemplating mortality is not about being prepared to die, it is about being prepared to live. And that is what I am doing now, more freely and more fully than I have since childhood. The cancer has not made life more precious – that would make it seem like something fragile to lock away in the cupboard. No, it has made it more delicious …”
In bringing compassion into requests for euthanasia, first and foremost, we need to take time to listen. There is a strong association between depression and requests for euthanasia, as indeed there is between chronic disease and depression. Listening fully in a compassionate and non-judgmental way will help to bring clarity to the reasons behind the euthanasia request. Although the public tends to think of such requests as being in response to intolerable pain or fear of such pain, in fact studies in Oregon showed that the most common reason behind such a request was loss of the ability to do the things they enjoyed and loss of autonomy. In many ways it is brought by fear of the unknown, though in my experience, it is dying that people fear and not death itself. Taking time to explain how the patient may be helped and to answer questions as truthfully as possible may allay fears. Interestingly the JAMA article says that despite legislation the take up of euthanasia remains relatively low.
The suffering of those with mental health issues cannot and should not be underestimated. The suffering of those who feel lonely and isolated should not be underestimated. The suffering of carers watching their beloved partners, children and family in their illness should not be underestimated. Could the answer to these problems truthfully be in euthanasia, or is it not time that we as a profession and as a society find more compassionate solutions?
While I fully respect other physicians’ beliefs, for me, it is simple – the answer to the question “should euthanasia be legalised” is a resounding “no”. I personally cannot do this because I do not feel that it is right, and I do not believe that I should be asked as a doctor to do it. It is not that I lack compassion; rather that I believe that there are more loving ways to support the dying.
Dr Jane Barker has been practicing as a GP in northern NSW for 30 years. She is a GP academic at the University Centre for Rural Health based in Lismore and a GP at the local Aboriginal Medical Service. Her interest in global health problems comes from growing up in Zambia and later working in Papua New Guinea.
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