"Think about it now, talk to your family and then get on with living."

By DR SARAH WINCH

In 2008 in Australia 143,900 deaths were registered. This story is about one of those, my husband, Lincoln Gregory Winch. He was 48 years of age, a former triathlete, regular runner and bike rider who had a life-long interest in sport and fitness. We were together for 24 years and have two children, who were 21 and 12 at the time of his death. He lived for only 4 months following the discovery of cancer that had spread though his body.

How do you function after a diagnosis like this? You must have heard of these incredibly sad stories. We certainly had and now we were living one.  At the time I knew obviously that something catastrophically awful had happened to me, and my family, but most importantly Lincoln! I figured there would be time later to assume the foetal position and howl at the moon, but the immediate priority was to regain control! Lincoln’s needs, wishes, wants were to be paramount. As far as I was concerned he may be losing his life, but he was not going to lose his dignity. He was going to die on his terms, his way, within current legislation and treatments.  The words of the famous mystic Rumi (1251) echoed through my brain, “sit, be still and listen because you’re drunk and we’re at the edge of the roof”. Roughly translated I took this to mean, take care, this is one thing you cannot stuff up – Lincoln has to get the best death possible. No second best will do.

It was clear we were in a terrible situation with a devastating end but we had some advantages. For one thing, I, Sarah, know things about dying and end of life care! I am a nurse, sociologist and ethicist who has worked in this area conducting research, teaching medical students, managing community services and nursing dying people. I knew it was possible to plan for a good death, to work out where you wanted to die, to organise the support you need. I know what is good, what is bad and how to avoid getting caught up in another person’s version of what your “good death” should look like. Lincoln did have the good death he sought. He wanted to support our children, keep fit, write about this experience, stay out of hospital and die at home. This happened as planned, except Lincoln died in hospital. This was his choice and it worked out well.

Two days before he died Lincoln asked, “Who else knows these things? You must write about this!”. So I did. Best Death Possible, A guide for dying Australians blends our story with the information and skills you need, to get a good death however you define it. None of this has to be complicated plus it makes sense to give your own death some thought. National Palliative Care Week is a good time to consider these matters. Think about it now, talk to your family and then get on with living. When that day comes when you need to plan your death or that of a loved one, you will have some end of life skills and plans sorted. You will have a light in what can be a very dark place.

Here are ten tips to get you started.

1. What does life mean to me – Consider what quality of life means to you by writing a few sentences on what is important in your life, and how you would like to spend the precious time remaining.

2. A good death – Write down what you consider a ‘good death’ would look like. What does ‘good’ mean to you?

3. A ‘bucket list’ – Develop a list of things to do before you die, or as Lincoln did a ‘reverse bucket list’ – things you never want to do again!

4. Build a support crew – Identify two support teams who are dedicated to getting you to the end of your journey. One will be your healthcare support team, a range of health care professionals who will deliver a range of palliative care services, and the other will be your personal support team.

5. Write down a care wish list – Consider the treatments you would like to continue and which you consider no longer worthwhile. These can change but give you and your team a direction. Your palliative care team can be the first port of call for any questions.

6. Where you would like to be – Decide where you would like to receive palliative care services: Is it your home, a hospice, or hospital?

7. The legalities – Research and understand the legal requirements for the state you live in. Get your affairs in order by completing an advance care plan and ensuring other planning and financial documents are up to date.

8. Cultural and religious requirements – Incorporate the cultural or religious requirements that you would like to observe.

9. Communicate! – Discuss you goals and plans with your loved ones and determine whether these are feasible in terms of support others can give. Identify whether you need to bring others on board. Palliative care professionals can care for both you and your family in times of need.

10. Knowing what you want and how to get it will help you resolve care or treatment issues that cause you concern.

Dr Sarah Winch is an ethicist with over 30 years of health care experience in a career characterised by innovation, collaboration and sustainability. In 2013, she published Best Death Possible: A guide to dying in Australia in 2013. It shares with those who have received catastrophic news (and their carers), how to manage the Australian health care system to get the best death possible.

For further information contact Palliative Care Australia.