Dr Rodney Syme, the 84-year-old urologist and physician who has advocated for dying with dignity for more than 20 years, says how we die is important: “It is at the core of how our loved ones remember us.”
There is great interest in the community about death and dying and, in particular, the choices available to us at the end of our lives.
Everyone wants a “good death” but unfortunately many people do not experience this, despite incredible advances in medical science. Why is this, and what can be done to achieve a peaceful, dignified death?
This was the topic of a forum last Sunday at which Andrew Denton led a panel discussion attended by 500 people and watched by many others online. Denton was joined by medical professionals Dr Rodney Syme, GPs Dr David Leaf and Dr Jill Gordon, and nurse Coral Levett to discuss “The Truth about End of Life Choices”. Also present were Jan and Jessica Edwards, who spoke of the distressing death of their husband and father, Tim, from mesothelioma earlier this year.
Topics ranged from the realities of medical treatment of the dying and limitations of palliative care, to the experiences of GPs and nurses “at the coalface” dealing with patients and their families. It is clear that many people experience a “bad death” with great pain and suffering, causing lasting distress to their loved ones.
Modern medicine is focused on curing people but struggles to confront suffering where death is inevitable and unavoidable.
Suffering is not just about pain and physical symptoms. For many, the loss of dignity, independence, physical immobility and inability to communicate with loved ones can have devastating effects. Even with optimal palliative care, many people still experience unbearable physical and mental suffering as they approach death.
Is it any wonder that fear of dying drives many people to take their own lives in often violent and lonely circumstances, with devastating consequences for those left behind.
The report from the recent Parliamentary Inquiry in Western Australian estimated that 10 per cent of all suicides in that state are carried out by people suffering from a terminal or debilitating chronic illness.
Recent surveys show 85 per cent community support for voluntary assisted dying laws to permit doctors to prescribe medication to allow terminally ill patients to die quickly and peacefully at a time of their choosing. With such high levels of public support, it is inexplicable that our parliaments are so reluctant to pass these laws.
This is despite clear evidence from other jurisdictions where similar laws have operated for many years and have proven safe, effective and popular within the community.
Everyone wants a “good death” but unfortunately many people do not experience this, despite the incredible advances in medical science.
It seems that opponents of these laws, who represent a small but vocal minority, have succeeded with their campaign of misinformation to sow seeds of fear, uncertainty and doubt in the minds of members of parliament. As a result, Victoria’s hard fought Voluntary Assisted Dying Law is under threat from an alliance of Right to Life and Christian groups and certain parts of the medical profession.
We can only suggest that people contact their elected representatives to ask why they won’t listen to the overwhelming majority of the community on this important issue.
We must demand that they vote based on “facts not fear”.
If there was one message to take away from this discussion, it is the importance of talking about these issues, with our families, our doctors and communities. We must understand what lies ahead and express our wishes. It helps us and our families at a time which can often be frightening, confusing and require urgent and difficult decisions.
The medical profession must communicate better with patients about end of life options and recognise their natural inclination to prolong life does not always accord with the patient’s wishes or best interest.
The importance of advance care planning cannot be overstated. We must record our wishes about future medical treatment and appoint a substitute decision maker.
We must know our rights to refuse treatment and become more confident in dealings with doctors.
In the absence of a legal regime for voluntary assisted dying to allow us the right to determine how we die, we must arm ourselves and our families with the knowledge and courage to give us the best chance of the good death we all hope and pray for.
Penny Hackett is president of Dying with Dignity NSW.