I only have 38 summers to enjoy before I die

 

I only have 38 summers to enjoy before I die. The smell of cut grass, ocean breezes on my face, cicadas, summer storms and the sense of new “life”. Perhaps 38 sounds like a lot, but I have only had 36 summers. I am nearly half way through my life. Other people my age have 48, but living with Multiple Sclerosis means I will enjoy 10 less summers.

I also have a 3 year old. I am a mother and a father to him. He’s amazing. I hope I live long enough and healthy enough to watch him become a man. To teach him to drive, show him the world, watch him get married, become a father himself. But I realise that may not be.

I am also a daughter. My parents are the most loving, gentle, kind and patient people I have ever met. They are my inspiration, my mentors and my rock. Without them, I would not have the courage or gumption to face my adversity. They encourage me to excel, be positive and make a difference.

We all live together in a three generation household. We all draw strength from each other. We all raise my child together. We have to, I’m dying, and perhaps sooner than my 38 summers. We’ve had the death talk. We had to.

By all means, I am not an expert on death, I have never died, so how could I be? But I am a Registered Nurse, and have practiced nursing for nearly two decades, and performed A LOT of palliative care counselling and been privileged to be with many people as they passed on to  the “Eternal Care Unit”. And the one thing that always astounds me, is our western perception of death and the taboo nature of it in regards to even talking about death.

There’s the myth that talking about death gets you there quicker, when in fact talking about death gets you there better.

I wish I lived in a Latin American country, where death is not taboo, not hidden and not feared. In many Latin American cultures death is embraced, talked about and is front and centre of discussions, even joked about, well before the event. It would make my job a whole lot easier. It’s an awkward conversation to have at 2am, as someone is dying, to ask them what their wishes are. Buried? Cremated? Priest? Celebrant? Church? Grave? Eulogy? Pertinent questions that need not be left to the last minute.

Most surveys conducted globally conclude the same outcome; people want to die at home. So why do only 16% of people die at home?  84% don’t. They die in the hospital, a hospice or nursing home.[1] So what’s with the 84%? It’s not all about death. Do you value quality of life? Or life above all else? What about CPR? Ventilation? Pain relief? Have you thought about it? What do you want? What’s your choice?

There is a document available to all called an Advanced Health Care Directive. I believe it is one of the most amazing documents ever produced. Not just for death, but for life. It forces the conversation, and allows ALL your wishes to come true. Yes, that’s right. You are in charge of all your health decisions, not just death. BUT you have to have the talk, an open and transparent conversation with a person or persons who you entrust to follow your directions.

Every competent Queensland adult has the right to accept or refuse any health care recommendations. It’s legislated. It’s your right. A simple piece of paper that allows YOU to legally state YOUR directions, for YOUR health care, for YOUR medical situation when YOU can’t voice YOUR wishes.

Simple.

Free.

It is not a euthanasia document, it is a document designed to empower you. It is certainly not able to address each and every possible scenario. That’s for your discussion with whomever you assign Enduring Power of Attorney to. But the Advance Health Care Directive opens the dialogue for you to discuss your terminal, incurable, irreversible, permanent unconsciousness (coma), persistent vegetative state and palliative care[2] wishes and ideology. Your decision maker, your Enduring Power of Attorney is then able to make decisions in regards to cardiopulmonary resuscitation, assisted ventilation or artificial feeding and hydration[3] based on YOUR wishes.

It is all about YOU.

In regards to me, I have had the discussion with my wonderful and magnificent parents who have my Enduring Power of Attorney. I hope that they never have to make decisions on my behalf. But if they do, they know what I want, what we want, what’s best for me, my son and them.

So perhaps I live in a Latin American style house…

Hopefully I will see out my 38 summers, perhaps I won’t. But in having the “death” discussion with my parents, I breathe a sigh of relief. My plans and wishes will be followed. Understandably, no parent wants to bury their child, but my gift to my parents will be: that decisions will be made easier for them. I gift to them no guilt or hesitancy. I gift to them peace of mind. I gift to them love.

If you love your loved ones, I encourage you to accept your legislative right to Advance Health Care Planning and fill out the form. Have the talk. And gift them this simple gift. Talking about death won’t get you there quicker, talking about death gets you there better.


[1]  Palliative Care Australia Inc. 2011, We need to talk about dying – survey  http://www.palliativecare.org.au/Portals/46/National%20Palliative%20Care%20Week%20Media%20release.pdf

[2] Queensland Government, 2013, Advance health directives, Department of Justice,http://www.justice.qld.gov.au/justice-services/guardianship/making-health-care-decisions/advance-health-directives

[3] Queensland Government, 2013, Advance health directives, Department of Justice,http://www.justice.qld.gov.au/justice-services/guardianship/making-health-care-decisions/advance-health-directives

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Nicole’s story came to us through Palliative Care Australia, the peak national organisation representing the interests and aspirations of all who share the ideal of quality care at the end of life for all. For more information about Palliative Care Australia please visit their website at www.palliativecare.org.au

 

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