Conversations about the end

Range of views: Country Labor candidate for Port Macquarie Kristy Quill, The Greens’ candidate for Port Macquarie Drusi Megget, Dying with Dignity Victoria vice-president and retired urologist Dr Rodney Syme, The Nationals’ candidate for Oxley and Parliamentary Secretary for Regional and Rural Health Melinda Pavey, moderator and ABC Nightlife presenter Tony Delroy, Voluntary Euthanasia Party (NSW) lead upper house candidate Shayne Higson, Palliative care physician Dr Frank Brennan, The Greens’ Senator Richard Di Natale and MC and Dying with Dignity NSW president Dr Sarah Edelman at the forum.THERE aren’t enough conversations about end of life choice and the medically assisted dying debate, a 427-strong audience heard on Saturday.

A question and answer-style panel discussion at Port Macquarie Panthers brought together medical experts, politicians and candidates.

The audience heard the case for and against medically assisted dying.

MC and Dying with Dignity NSW president Dr Sarah Edelman said hopefully the forum was the start of a bigger conversation.

Dying with Dignity NSW aims to bring about legislative reform so terminally ill individuals who experience profound suffering can choose to die with dignity.

The Port Macquarie Group of Dying with Dignity NSW staged the forum which delved into issues from palliative care to education, advanced care directives, nursing home resources, education, current end of life choice, the push for legislative change and legal issues.

Palliative care physician Dr Frank Brennan said best practice palliative care was about having a broad combination of patient and family support through life limiting illness, not only addressing the physical aspects but the psychological and psycho-spiritual aspects.

Best practice palliative care also included meticulous symptom control, he said.

Voluntary Euthanasia Party (NSW) lead upper house candidate Shayne Higson said even the best palliative care could not alleviate all suffering.

Dying with Dignity Victoria vice-president and retired urologist Dr Rodney Syme said he was an unabashed advocate for palliative care. He would like to see a palliative care system where people could get all the benefits of palliative care but ultimately had control over the end of their life.

Dr Syme said he believed patients were the best judge of when pain was insufferable.

Meanwhile, Dr Brennan said the law allowed a competent patient to refuse treatment.

“If there is a sense that later on you wish to refuse treatment at a point when you’re not competent, you can make an advanced care plan,” he said.

An advanced care directive gives formal instruction on medical care if an individual is unable to communicate due to injury or illness.

Panellist and The Greens’ Senator Di Natale said it was important to recognise advanced care directives were only as effective as the communication and the system which supported them.

Senator Di Natale has introduced an exposure draft of a bill, which if supported, would give terminal patients around the country control over the manner and timing of their death.

Dr Rodney Syme:

AFTER over 25 years of counselling people about end of life concerns, the following ‘givens’, or self-evident truths have become apparent to me.

* That dying may be associated with intolerable suffering

* That such suffering may crescendo in the last days or weeks of life

* That some suffering may only be relieved by death

* The doctors have a duty to relieve suffering

* That doctors must respect patient autonomy

*That palliative care cannot relieve all pain and suffering

What then should a doctor do when treating a patient with intolerable and unrelievable suffering at the end of life, when person asks that doctor to hasten their death, in order to relieve that suffering?

This is a dilemma for the doctor, because, at least in theory, a doctor who deliberately hastens death, even by a short time, is guilty of murder.

In practice, the doctor can protect him or herself by arguing that their intention was to relieve suffering, not to hasten death.

The drugs used are strong analgesics like morphine and sedatives, the combination of which causes unconsciousness, depression of respiration, and if combined with a lack of hydration, will result in death. But this palliative process, to avoid accusations of intention to hasten death, must occur slowly, by accumulation of drug effects.

Moreover, it is difficult to prescribe morphine for people who do not have severe pain, and much of the suffering at the end of life is not simply physical pain.

Quite apart from people in the terminal phase of a terminal illness, there are a very large number of people who have an advanced stage of an incurable illness, such as motor neurone disease, Parkinson’s disease, all of which cause progressive neurological failure, and heart, respiratory, liver and kidney failure. These people may have intolerable and unrelievable suffering, but there is no effective palliation. Because their death is not clearly in sight, they may suffer for far longer than someone with a terminal illness.

It is not the nature of the illness, or the stage of an illness that underlies the problem, it is the presence of intolerable and unrelievable suffering.

As a society, should we demand that these people must go on with their suffering lives to the bitter end, commonly dying in a nursing home, hospital or hospice, the very place where the majority of Australians do not want to die?

Shouldn’t these people, if they are mentally competent to make their own decisions, and fully informed about the availability of every treatment or care, be able to make a request to their doctor for assistance to die, to have that request treated with respect, and acted upon by the doctor, with all due care, in a legal and humane manner? Ideally, that wouldinvolve providing the person with medication that they could take themselves, if and only if their suffering became unendurable.

They would have control of their own life and death, and that is what the vast majority of Australians want.

Most would not need it, but their great comfort is in having the choice.

Dr Frank Brennan:

THOSE who favour and those who disagree with a physician assisted death start at a common point – the simple acknowledgement of human suffering.

Let us start by looking at the existing care of suffering patients.

If the answer was ‘nothing exists’ then the situation would be shockingly stark.

Modern Palliative Care arose in response to this suffering and says to patients and families: we can and should do better.

Our skills and compassion must extend to the most vulnerable and those where there is no hope for survival.

To the public and to many health professionals there is probably no discipline so enshrouded in misconception. Palliative Care is the concerted effort to control pain and other symptoms, to support the patient and the family through this challenging and precious time and to allow death, when it comes, to be dignified and loving.

In terms of the debate about physician assisted death, therefore, our point of commencement is the same, but the destination is different.

People often worry that at the end of their lives, they will be kept alive unnecessarily. They worry that they will not be allowed to cease treatment and die.

In fact, that right to refuse or withdraw from treatment already lawfully exists. Doctors must listen when a patient says they have had enough. At this time palliative care can step in and say ‘enough’ and act as an advocate for the patient. Yes, modern medicine can do many things but we need to recognise a simple and incontrovertible truth – we are all mortal.

Another worry is the fear that doctors and nurses will abandon you when you are dying and that you will greatly suffer.

People worry that, at the very moment of their greatest vulnerability, health professionals will walk away.

This is the precise moment palliative care should and does get involved, dealing with these issues, addressing pain, nausea and other symptoms, making sure families and carers are supported, hearing the rhythms of fear and loneliness and despair and doing everything to make sure the death of the person is dignified.

Palliative care acts as a firm and clear voice in response to any health professional who says to an ill patient and their family “I am sorry, there is nothing more I can do”.

Palliative care says “No, there are many things we can do.”

We all commence with a genuine sense of the vulnerability and suffering of very ill people. Alongside the debate on the rights to assisted dying we should have a debate about the right to receive good Palliative care.

The fulfilment of that right would ease the concerns of many people.

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