End of life

How we leave this life matters as much as how we live it. Reflections on dignity, suffering, choice, and having a say in how life ends.

At 17, I was a nursing student and had my rotation on the geriatric ward of the hospital. Seeing people lying in beds bathing in their own excrement with loss of cognitive ability was waiting to die with no dignity. I made a decision then about how I wanted to face the end of my life. If old age, illness or suffering ever left me without dignity or any meaningful quality of life, I wanted the right to decide when it was time to go. If that choice was not legally available to me, I believed I would find another way.

We have come a long way since the seventies but not where I believe where we should be today. The laws vary depending on where you live in the world. Voluntary assisted dying is legal in all states of Australia except northern territory where it remains illegal. The ACT has removed the specific 6-month requirement though the person must still have an advanced and progressive condition. It is carefully regulated, requiring patients to meet strict criteria regarding terminal illness, remaining life expectancy, and unmanageable suffering.

Euthanasia is not a term that is is generally used in Australia. Voluntary assisted dying (VAD) is preferred as it focuses on the patient’s voluntary choice rather than something that is done to them. While euthanasia usually implies a doctor administers the lethal medication, VAD can sometimes involve the patient self administering the prescribed medication themselves.

Canada uses the term Medical Assistance in Dying (MAID) and the United States also uses this term or death with dignity. In Europe countries like the Netherlands and Belgium euthanasia is still officially used when referring to a doctor administering the medication at the patients request. The Netherlands and Belgium where the first countries to legalise physician administered euthanasia. The United States allows physician assisted death in many states, but active euthanasia is illegal nationwide.

When working as a nurse at Peter MacCallum Cancer hospital even though doctors and nurses were caring, the whole process of suffering is drawn out for both patient and relatives who sometimes spent hours, and weeks by besides. There is no certainty or end in sight for all as there is no definitive time frame for anything.

Palliative care is often described as providing a peaceful death, but how can we know what peace means to someone who is dying and may no longer be able to communicate? I have seen people become agitated and distressed during the dying process despite receiving palliative medication. They did not look peaceful to me, and it made me question whether the experience of dying is always as peaceful as we are told it is.

If we look at it there isn’t much peace about it for the patient, friends and family as they wait it out. In palliative care there is an act in helping a person die even though it called keep them comfortable, and out of pain which requires upping the dosage of morphine. The higher the dose the more th risk that they drift into a coma and eventually die.

It treads a thin line which is often called 'the Principle of Double Effect' where the aim is to relieve pain using high doses of medications like morphine, and midazolam even if known it suppresses breathing and inevitability speeds up death. Upping a patient’s morphine doesn't determine how long the process will be thus its an imprecise science, whereas VAD offers a defined end time giving both patient and family more control of the process.

This raises an uncomfortable question about where we draw the line between relieving suffering and knowing that the medications being given can suppress consciousness, breathing and ultimately contribute to death. The intention may be to relieve pain and keep someone comfortable, but the reality is that these medications can also change the way a person dies. For me, this is where the distinction between palliative care and voluntary assisted dying becomes difficult to reconcile.

This highlights how exhausting a long goodbye can be. Even with the best of medical care, the uncertainty is a form of torture for everyone involved. As a nurse, I lived the reality of the "Slow Euthanasia" that happens in palliative care. There is definitely a gap between medicine and human compassion. We still struggle to respect the soul and what suffering means to each person.

The oath doctors take of 'do no harm' was often really a do not let the heart stop regardless of the trauma inflicted on a patient to keep it beating. Things like resuscitating a frail elderly person, cracking ribs and leaving them on a ventilator just to say the save was successful often felt more like a violation than a success. The shift from preserving life to respecting the person is finally happening but we are still only halfway there. We have moved from resuscitate everyone to we have the right to refuse treatment. Missing is, we have the right to actively end suffering on our terms.

The laws need to change in Australia and other countries as viewing terminal death diagnosis as the only criteria for VAD dismisses the immense suffering others have who do not have a terminal illness. Chronic pain, dementia and mental heath should also be allowed VAD especially when no medical treatment has improved these people’s quality of life and intolerable suffering which is intolerable. The terminal label is an arbitrary line that ignores the very real, lifelong suffering of people who just want to be done on their own terms.

This is already happening in the Netherlands, Belgium, and Luxembourg: In these countries, the law does not require you to be terminal. Instead, the legal standard is "unbearable and hopeless suffering" from a medical condition. This can include chronic physical pain, advanced frailty, or even treatment-resistant mental illness.

In 2021, Canada expanded its "MAID" laws (Bill C-7) to include people whose death is not reasonably foreseeable. This allows people with chronic, life-altering disabilities or illnesses to choose assisted dying if their suffering is intolerable.

In Switzerland, assisted suicide is permitted under the law provided the person has decision-making capacity, makes the final act themselves, and the person assisting is not acting from selfish motives. Unlike countries that require a terminal diagnosis or a defined life expectancy, Swiss law does not impose a 6-month countdown.

In practice, medical guidelines apply additional safeguards, including that the person is suffering intolerably from a medically defined condition and that alternatives have been considered. This has made Switzerland an option for some people with non-terminal conditions who cannot access assisted dying under the laws of their own country.

Suffering is subjective, if a person lives for 20 years with a condition that causes them extreme daily pain or a total loss of independence, it is cruel to force someone to wait for a terminal diagnosis when they are already suffering intolerably. Why should someone with cancer get the option to end their pain, but someone with a non-terminal but devastating condition (like a severe spinal cord injury or advanced multiple sclerosis) be forced to continue? Quality of life should be our own judge as everyone’s perspective on quality is not the same.

When people are backed into a corner by suffering and a lack of legal options, they sometimes resort to taking their own lives by whatever means they can. It is more compassionate to bring people like this into the existing medical framework, where they are supported and offered a reliable exit from their suffering.

My hope is that Australia will one day move towards laws that recognise suffering beyond a terminal diagnosis, as Switzerland does. I believe it is cruel to make someone endure immense and unrelenting suffering simply because their illness is not expected to end their life within a particular time frame. For me, the choice to end suffering with dignity should not depend on how close someone is to death, but on the person's own experience of their life and what they consider an acceptable quality of life.