'What happened when our daughter chose to pass away from home.'

Before we lost our beautiful daughter to cancer, she made clear her desire to pass away at home. Nothing will replace Ashleigh but we are comforted by knowing she passed peacefully and we did everything she wanted of us, writes Lindsay Collins.

We lost our beautiful 20-year-old daughter, Ashleigh, six months ago after a three year battle with cancer. Before passing away she had provided specific instructions to us on everything that was important to her, including a wish that she die at home.

Ashleigh was a bright and bubbly 17-year-old in her HSC year at Kiama High when she received the terrible news that she had a rare form of adolescent cancer. She showed amazing strength in accepting this terrible news and was determined that she would make the most of whatever time she had left.

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When she was ultimately told that no further treatment options were available she had to call on all that strength again. She was given counselling and a DIY Cancer Foundation booklet “Voicing My Choices” – effectively a checklist of things to think about for those facing death. Ashleigh’s desire to pass away at home arose out of these deliberations.

In canvassing this wish, we were continually assured that nothing could be provided in hospital that couldn't be done at home - an assurance that proved absolutely true. Plenty of preparation was required though - additional medical facilities in the home, arrangement of back up support from the palliative care team and extensive education in how to administer drugs, give injections, etc.

On arriving home, Ash let all her friends know and our house was full of fun and laughter right up till a few days from the end. She also managed to work through her checklist and give us explicit instructions on what mattered most.

The community and palliative care nursing teams provided around-the-clock support. They were increasingly called on to adjust painkilling medication. When pain escalated dramatically at the end, they tried desperately to get it back under control, before Ash requested the injection she knew would put her to sleep until her body shut down.

The following three days were days of peace - Mum, Dad and her best friend in the world, her pet dog Lulu, maintained a constant vigil at her bedside. Talking to her and stroking her and making sure she was comfortable. The silence and solemnity was such a contrast to the pandemonium of the previous day and grieving really started at this point.

Finally at 3.55am, with Mum in bed with her, Lulu on her legs and Dad holding her hand, she took her last breath - an unforgettably beautiful, peaceful and serene moment.

Immediately after her death we started implementing the first of her wishes - by having the on-call nurse assist Mum in dressing her in the outfit that she had chosen for her funeral.

Ash was then placed on a cold plate on her bed - a device that extended the time we could spend with her before the funeral directors took her away. We then spent the next couple of days in confinement - still stroking her and talking to her, with Lulu seeming to totally understand what was going on. Having Ash still so close to us helped us deal with our initial grief and we were ready for the funeral directors to take her on day three.

Ash had given us a very clear idea of how she wanted her funeral service to be conducted - the venue, the speakers, the tone, the music etc.

She wanted a non-religious service in the local Kiama showground pavilion. The service was conducted by a family friend who she loved and respected, with a combined effort from several family and friends, whom she had consulted. We were all able to give her the service we know she would have loved. This left us all with a shared sense of peace, gratitude and satisfaction.

WE HAVE ABSOLUTELY NO REGRETS.

The peace of mind we feel after all this has made an immense difference to our grieving. Ash was encouraged by the medical teams to consider dying at home, she very much wanted it and they supported us wonderfully. We were able to control each stage of the process - at our own pace and under no pressure to satisfy the requirements of hospitals, doctors, funeral directors etc, which can sometimes be at odds with those of the family.

Knowing exactly what Ashleigh wanted and delivering it also made a huge difference to us. Making decisions on so many things on behalf of a lost loved one can be very difficult when you are dealing with intense grief. Removing any uncertainty is therefore very important.

Nothing will replace the loss of our beautiful daughter but we are comforted by knowing she passed peacefully and we did everything she wanted of us. This helps us to accept her loss and to try to fulfil her last wish - that we enjoy the rest of our lives.

This article is published as part of Open Drum's callout on death and dying. Open Drum is a collaboration with ABC Open and invites readers to have their say on what's happening in news and policy debates. Read other stories submitted to Open Drum.

Lindsay Collins is an ABC Open contributor.

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