Don’t let my kids' memories of me be an emaciated body, gasping for breath and beaten by pain

I’m 44. A Dad to two young children. A husband, a doctor and I’m dying.

In 2016, my wife had to tell our kids, my parents and siblings that I have mesothelioma. A terminal, asbestos related cancer affecting the lining of the lung.

As an emergency physician I have insight into how this cancer will take my life. From what I have witnessed, it isn’t a peaceful death.

My kids’ experience of my death will be carried forward with them forever. It is never going to be good. There are gentle and peaceful deaths − the good deaths that most of us would wish for ourselves and our loved ones when the time comes. Unfortunately, I have also witnessed prolonged suffering and uncontrollable pain. I have watched families devastated as loved ones deteriorate into physical and emotional states that are completely removed from the father/mother/sister/brother they once knew. I have heard their pain at being powerless. Who would want that for their family?

I would like to see assisted dying laws introduced into Western Australia, to protect families like mine. It’s hard enough knowing that I will die, leaving my kids before they complete school. I don’t want their enduring memories to be of me in pain, struggling to do things for myself. I want to retain my dignity and control over my life and death.

Watch Colin's message to WA MPs:

I appeal to WA politicians to support voluntary assisted dying legislation for the terminally ill. We, and families like ours, already face immense suffering. I want to be able to choose when the pain or the suffering is too much and to end my life on my terms. For me, that ideally means dying at home painlessly, at a time when my family can be there to share last words and farewell me as I drift off into a deep sleep and stop breathing.

From Day One my wife and I have been honest with our kids regarding my terminal diagnosis. We’re upfront – we don’t sugar-coat and we don’t wallow in doom and gloom. We encourage them to ask questions and talk about the future. My kids have seen me through numerous rounds of chemotherapy. They have adjusted to waiting for Dad to catch up. They, too, are affected by the side-affects − the nausea and the fatigue that progressively get worse.

As a family we have talked about voluntary assisted dying and what it means to each of us for WA to make it law. The kids are supportive, they want to be able to remember their Dad as I have been, as I am now. They don’t want to be afraid of what’s ahead. despite grappling with the concepts and gravity of death and dying of growing up without their Dad.

Please respect my right to have a choice. Nobody is forced to use the legislation, but without it, people are left with no choice but to take matters into their hands. That isn’t fair on anyone.

In my 20-year career, as a Doctor, I’ve come to appreciate death is not a failure. We all die at some stage. Ours is not to preserve life at any cost, but to preserve the sanctity of living. Which means preserving the dignity, the autonomy and humanity of each individual. Life is precious – but when there is no hope of recovery, where there is suffering, our focus should be to maintain dignity and the well-being of the patient in accordance with their wishes.

I firmly support palliative care options and hope that they prove an effective way to control my pain and prevent unnecessary suffering. As a doctor I have seen that palliation can not guarantee this. Voluntary assisted dying laws allow me to continue to be in control of my life to the very end, knowing that I can choose to end my suffering if it becomes unbearable.

Assisted dying laws - whether I chose to use them or not − in the end would put my mind at ease, allowing me to concentrate on living the remainder of my life, my way.

Voluntary assisted dying is an extension of palliative care – an additional tool. Health care professionals need to talk and to listen to their patients: To be brave and frank about the limitations of medicine. Ultimately, they should seek to prevent unnecessarily suffering in line with patients wishes.

For most of us, it’s easier to not think about dying at all – particularly when we are fit and healthy. Even as an experienced doctor, I have had to learn to be comfortable with the realities of my own death and the process of dying. We as a society need to think and talk about it − to put ourselves in the position of the terminally ill. Or to think of our loved ones. On an individual level what would you do? Would you spare the pain, anguish and indignities of a prolonged but unavoidable death?

Voluntary assisted dying laws simply provide a choice. I say to those making decisions on our behalf; If you hold beliefs that prevent you from considering assisted dying as a personal choice, I respect that. Please respect my right to have a choice. Nobody is forced to use the legislation, but without it, people are left with no choice but to take matters into their hands. That isn’t fair on anyone.

To me, having the option of assisted dying takes away worry about how my death will be experienced by my family. That gives me comfort. The alternatives are inhumane and unbearably grim: I don’t understand how voting against the legislation protects or benefits anyone.

It’s been two and a half years since my diagnosis. The average lifespan for mesothelioma sufferers is 12-18 months. Perhaps a little more at my age. I’m in no hurry to die. I will take all the time I can get. Five years would be long enough to see my daughter into high school and to see my son graduate high school. You have the power to help them remember me, the fun Dad. The Dad that plays games and takes them snorkeling and bike riding at Rottnest Island. Don’t let their last memories of me be of a weak, emaciated, suffocating body, gasping for breath and beaten by pain.

 




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