End of life

I was 17 when I decided what I wanted for my life regarding old age, illness or unmanageable suffering. When came the time if it wasn’t available on my terms, I would take care of it myself.

I first contemplated end of life when 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 then decided I strongly believed in euthanasia for humans, and it was what I hoped for the future for myself and others who wanted to leave on their own terms.

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 a term rarely used now in Australia where it is mostly obsolete. Voluntary assisted dying (VAD) is used 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 taking the prescribed medication themselves (self-administration).

Canada uses the term Medical Assistance in Dying (MAID) and the Unites 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 at Peter McCullum hospital (Peter MacCallum Cancer Centre) even though doctors and nurses were caring, the whole process of suffering is drawn out for both patient and relatives who sometimes spent hours, 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 a long process eventually achieving a so-called peaceful death but at what cost and if we look at it there isn’t much peace about it for the patient, friends and family. 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 they drift into a coma and die.

There is a very thin line which is often called the Principle of Double Effect where the primary goal is to relieve pain (using high doses of morphine or midazolam), even if a known secondary effect is that it suppresses breathing and speeds up death. While upping a patient’s morphine is an imprecise science, VAD offers a defined end time giving both patient and family more control.

This highlights the exhaustion of the long goodbye. Even with the best 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 a a gap between medical capability and human compassion. We struggle to respect a person’s soul and their own definition of suffering.

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. Next 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 aid or treatment has improved these people’s quality of life and 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 their law is based on "decisional capacity" and lack of "selfish motives" rather than a 6-month countdown, which is why people with non-terminal chronic conditions travel there to end life.

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 medical framework where they are supported and offered a reliable exist to end their suffering and say goodbye.