Give terminal patients the right to choose

Illustration: Eric Lobbecke

On Monday night, I appeared on Paul Murray Live on Sky News. A discussion ensued on euthanasia, which many people have been talking about his week. I spoke with some passion in this debate because those with moderate to severe disabilities are likelier to have to deal with this question than most other people.

As euthanasia advocate Andrew Denton speaks eloquently about this life-and-death question, he always points out that very few of us will have to make this decision, but those who do are in desperate straits. You will often hear people say they “don’t want to be a burden” to their family and loved ones. For those of us who are already a burden, this statement hits very close to home.

Since my operation 18 months ago, my life has changed dramatically and so have the lives of my wife, Amanda, and my son, D’Arcy.

The first casualty of my disability was dignity. With my left leg useless and no feeling in my left foot, the question of mobility has reared its ugly head. Ever since different nurses helped me with my daily shower, dignity went out the window. I still have to be washed when I’m in the shower because I am so vulnerable to a fall on slippery floors. During the eight months in hospital, nurses, both male and female, washed my private parts, and you learn to get over any embarrassment.

As my carer, Amanda has been forced to develop considerable nursing skills: 1½ years after the operation, I am still bleeding from two wounds on my backside. She must change those pads a couple of times a day and try to stop the blood leaking on to the bedsheets or my clothes. It is a constant pressure for her and that is only one of the welter of things she has to do or get for me.

She is stuck with me 24 hours a day on weekends and most of every weekday. Too much of her time is spent as a chauffeur because I can no longer drive.

Although in automatic cars you need only use your right foot, and that is my good foot, because of pins in bones, bones removed and other bones like the hip and the coccyx being heavily shaved to enable the surgeons to remove my organs, my right foot does not like moving to the left — from the brake to the accelerator.

The sciatic nerve was sacrificed for the same reason and that is why my left foot will not obey my commands and the leg muscles continue to atrophy.

All of this means I can’t drive a car, and the taxi industry together with OC Limousines are the big beneficiaries. Amanda is the biggest loser. Yesterday she took me to the podiatrist, today the dentist, tomorrow it’s the endocrinologist. The medical merry-go-round is now an integral part of my life.

Graham Richardson with his wife Amanda and dog Molly Emily. Picture: Ryan Osland

Of course, to go anywhere I have to be helped into the car and someone has to put my walker in the boot and bring it to my door when we arrive at our destination. Also, I have a ridiculously expensive cushion that must go everywhere with me.

I have a faeces bag and a urostomy bag attached to my body. There are occasional accidents with both, which means more cleaning and washing for Amanda. I can’t put my shoes and socks on either, so Amanda has to bend her back and get down to do that. My little bloke D’Arcy turned 10 on Wednesday, and Amanda has to look after him too.

It is no fun being a carer, yet she is there doing the job day after frustrating day.

None of this has been written to earn your sympathy. My life is so much better than those of thousands of others. I suffer from niggling pain but not agony. I get tired faster than the average person and need 10 to 12 hours’ sleep a day.

I am lucky enough to have plenty of mates and I go out to lunch with them three days a week. I follow my sport on TV and got to three Dragons games this year. I intend to go to the Sydney Ashes Test as well. And, best of all, I do not ever feel sick. From the shoulders up, I am as good as ever.

When I think of what elderly parents do while looking after sons or daughters with severe mental and physical disabilities, I know that it is they, and not the generals and the departmental heads, who should get the medals on Australia Day. They are the real heroes, as are the single mums who battle huge odds to look after their disabled children. Carers are undervalued in this country. They should be paid more and receive much more respite care, so they can clear their heads and rest up before they return to the extremely difficult path they have chosen for themselves.

This is one of the most powerful moments we have ever had on #pmlive.@SkyNewsRicho on euthanasia.

We love ya brother.@SkyNewsAust pic.twitter.com/zFVlhSype8

— Paul Murray LIVE (@pm_live) October 17, 2017

The doctors tell me that if my heart could survive what I went through last year, it will not give up on me anytime soon. I will live to see my boy turn 21, hopefully reconcile with my older children, and pass away quietly in my sleep.

There is, of course, the other possibility. Other parts of my weakened frame will probably waste away faster than those of most people. It is likely I will face the euthanasia conundrum, and if I do I would like to nominate when I go. I don’t want to wait until I am non compos mentis and have someone else make that decision.

I want to make my choice and I want that choice to be legally available. I don’t want the doctor to make a decision and increase my dose of morphine until it’s over, as is so often the case now. I do not wish to be secretive about it because doctors may fear prosecution. I just want the right, if my situation deteriorates markedly from what it is today, to face my mortality head on.

I commend Daniel Andrews for his courage in taking on a fight few pollies have the guts to even think about. I know many people have a different view and I can see how the conscience vote is the only way to go on an issue such as this. In Victoria, Deputy Premier James Merlino is out there contradicting his Premier and campaigning against the bill.

Surveys suggest two-thirds of Australians support euthanasia — and, as in the same-sex marriage debate, the majority should be represented in parliament. I hope Victorian MPs show the rest of Australia’s weak-kneed lot the way forward.

Dignity is never more important than at the end. Nine’s 60 Minutes did a piece on me a few months ago and cleverly put together a collage of me saying “Amanda” again and again and again. They noticed what is fast becoming for her a harsh reality.