Once again, Australian state parliaments are debating the issue of euthanasia – this time in Victoria and NSW. If the legislation is passed in Victoria, it is expected that by 2019 assisted suicide will be available to those who choose it.
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 which 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 / assisted suicide is 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.
How do doctors feel about euthanasia?
Studies of doctors’ attitudes to voluntary euthanasia and physician assisted suicide (PAS) or voluntary assisted dying (VAD) have found that a higher percentage of the general public agree with euthanasia compared with the 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 with euthanasia, and in some studies unanimously disagreed. Of those interviewed who did agree, a very small proportion felt that they themselves would perform this task.
I have over the years cared for many people dying. I have clear memories of a 4-year-old I treated as a houseman, dying of leukemia, 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 would say “cows” and his beautiful family would take him to the fence where he seemed to find those big brown munching creatures in some way healing. Did I prescribe pain relief and sedation when it was needed? Yes. Could I have even considered euthanasia for those two little people? The very thought sends shivers down my spine.
Where do I stand?
I know where I stand – while my head may ask some questions, there is a resounding “No” from my body, whose responses I have learned to trust. It is not something I could do, nor do I think I should be expected to do it. If that is the case, how could I ask another 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 those who wish to die prematurely to relieve their pain, be it by euthanasia or by physician assisted suicide, but how do we as doctors feel about taking on this role?
Legalising Euthanasia/Assisted Suicide
There are several countries which have legalised voluntary euthanasia and others including Canada and some American states which have legalised physician assisted suicide. The Netherlands was the first country to do so, introducing it 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 last November. The Victorian White Paper recommending the legalisation of euthanasia has the backing of the State Minister for Health and has obviously been strongly debated. It has closed many loop holes present in previous legislation and the practice of euthanasia will follow strict guidelines with penalties if these are not adhered to.
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 it 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
It is of interest to me that where euthanasia or PAS have been legal for many years, the uptake is very low. This suggests to me that at least some of those saying yes to legalisation have the need to feel they have a safety net they can use if life becomes intolerable. This is something I can understand.
People fear not so much death itself but the process of dying, the pain, the indignity, the loss of autonomy.
Whether this bill passes or not, it is imperative that we research, develop and fund effective palliative care which is delivered to everyone who needs it, wherever they live and whatever their circumstances, it in a compassionate and dignified way. If this is available, the fear of the dying process may be significantly reduced.
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, in our work over many years, to many 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 issues facing medicine currently is so-called “futile treatment” where life is prolonged for inappropriate reasons. 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 generated 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 which 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 dying, so that some of the fear may be removed, making euthanasia less needed.
There are times as doctors when we share in hard decisions to withdraw care and allow the dying nature has decreed. I cared for a woman in her late forties with terminal Huntington’s chorea, who was close to my heart as my own mother died prematurely from multiple sclerosis. We knew that the time would come, if she became more distressed, when we would have to make the hard decision not to replace the feeding tube when it next blocked. I knew this would be difficult for her husband who shared in this decision, but also for the nurses who had cared for her and become very close. It was a blessing when she died peacefully without us having to stop feeding and use sedation.
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. And the patient may be able to connect with the essence of themselves in ways they may otherwise not have found, and may experience love such as they have never felt. Those professionally caring for the dying often have the capacity to bring true compassion where 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 spontaneous as in a group who knew each other through Alcoholics Anonymous and another who were part of a larger healing group. In all these situations the giving and receiving of love was beautiful to experience, and healing for 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 strong association between requests for euthanasia and depression, 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 request.
Although the public tends to think of requests for euthanasia 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 person may be helped, who may assist and to answer questions as truthfully as possible may allay fears. Depression and anxiety may be addressed and treated.
Healing into Dying
Dying is a very precious part of living. I was amused by the black humour of a joke which equated euthanasia to circumcision, saying it was just a little bit of life at the end that you don’t need and can easily be cut off. But life is too precious to be cut off, and who knows what beautiful and perhaps unexpected moments may be missed, what healing may take place.
In the classic Australian film “Last Cab to Darwin” Rex, a cab driver, finding he has inoperable cancer, travels to Darwin where he believes his life can be ended legally. The film closes with him in the last stages of his life, driving the 4 days home to the woman he has realised he loves and the house that his “mates” have lovingly, if irreverently, painted for him. He died, but in the process of dying, he lived.
For me, it is simple – the answer to the question “Should euthanasia be legalised?” is: “No”. I personally cannot do this because I do not feel it is right and I do not believe I should be asked as a doctor to do it. It is not that I lack compassion; rather that I feel there are more loving ways to support the dying.
Thank you Jane for your sharing around this. It is great you have made us stop and consider whether doctors really want to be in this position of ending a life. Perhaps the most difficult part would indeed be in assessing the line of acceptability – when it is acceptable to end a life and when it is not. Like many things, perhaps this line would start out clear but become blurred along the way as we become more and more desensitised.
I cannot help but refer back to a suicide awareness workshop I attended this week that informed that males over 85 years of age are the highest risk group of suicide. So we could assist here with end of life, but would we be taking away the opportunity of healing, of being responsible for choices made along the way. These elderly years are so precious and important but if we don’t see reincarnation as true, then the decision to end a life might be more matter of fact, rather than a chance to embrace responsibility, knowing we are coming back to live life from the point that it ended. Perhaps then, we would be more determined to heal hurts and strive for love and truth until our last breath.
Managing pain is definitely needed but to end a life is a big decision that is for sure.
“Managing pain is definitely needed but to end a life is a big decision that is for sure.” – Yes very needed, as I feel if pain management can be offered til the last breath, the matter of assisted dying may not even come up.
Dear Jane, a very well thought through and compassionately written article, and I thank you for this. Recently a very dear friend of mine died of inoperable cancer, where neither chemo or radiation therapy was an option. She was offered untried medication at her own expense which resulted in horrendous side effects, running for 2 years. When I saw her about 6 weeks before she left us, she also shared that the doctors had told her that they will not be able to manage her pain for much longer and that the pain will be severe. Her choice then was when that time comes, to choose assisted dying. She lived in the Netherlands. And that time came, as I received a message from her partner to say that for the first time she woke up not being her gorgeous self anymore, and the next day I was told that she now had gone. Whether she died on her own merit or whether she was assisted in that, I don’t know and did not feel like asking. I am wondering though, if there is no pain management at all possible anymore – what then? I know that with our learning and expanding and healing with the help of Universal Medicine much more is possible, yet for those that have not chosen a path of self love and self care – what then? I am very aware of the energetic ramifications of an assisted passing over – yet the question remains – how do we go about it when unbearable pain can not be managed any longer?
We are continually learning how to provide more effective pain control. Severe pain is something which is feared by everyone. I feel that we need to put more resources into symptom control in the dying phase. Our understanding has over the period of my career expanded exponentially but there is still a long way to go for us to be able to say:”You may fear death itself but we have the ways to offer the assistance which can remove the fear of the dying process itself.”
Thank you Jane – I hope that there is some good progress to help those who are dying, with the pain relief so that they do not feel they have to make a choice that for many is difficult to accept …
Thank you Jane for your beautiful sharing. Lovely to read that you have read that diary, I live in Holland and they made that book into a TV series that I just started watching. Great insight in how it is to live in an elderly place and what goes on for people. Euthanasia is a huge topic here in Holland and more and more available. It seems we always talk about it in a very mechanical and mindful way, but also that we seem to use it more and more for when ‘have had enough of life’. It is an interesting subject and it feels great to have an open conversation about it.
Thank you both, Jane and Karina for discussing this important issue. I only can say – may God save us from such situations! Love you!