• Robyn Massey

Make sure your health care and treatment wishes are known!

My mum died last month. She was almost 97. Mum had lived independently with help from family, friends, neighbours and a Veterans Affairs Homecare package up to the age of 95 years. Eighteen months ago mum moved into residential aged care as both her cognitive decline and physical support needs had reached a point where we could no longer support her to remain safely at home.

Mum was dignified, independent and very clear about how she wanted to live her life as she aged. Mum was also very organised and had put in place arrangements for the future including a Power of Attorney, a Guardianship and Administration Order and an Advance Health Directive.

The last 18 months of mum’s life was not as she would have wished. Despite caring staff and almost daily visits from her family, Mum’s cognitive decline, the physical limitations and pain she experienced on a daily basis due to her chronic osteoarthritis and the grief she felt at the loss of her independence seriously compromised her quality of life. Neither mum or our family ever imagined this would be how her final days would be lived.

My sister and I were joint guardians and along with my brother, we knew mum’s wishes that she did not want to prolong her life when she was unable to live a happy, pain free, independent life. Thankfully, we are a close family and were all supportive of the wishes mum had expressed when she was able to articulate them. However, this is still an emotional time, irrespective of how unified and supportive a family may be.

Having mum’s Advance Health Directive made it so much easier. It meant that, when it came time to talk with her treating health professionals and staff at the aged care facility about ongoing medical treatment, her instructions provided direction and comfort, and helped facilitate what are often difficult and emotional conversations.

Having a formal, legal document which clearly articulated mum’s wishes regarding medical treatment and interventions which would have prolonged her life provided assurance to all and ensured her wishes could be implemented without family feeling conflicted and even more distressed.

Mum’s Advance Health Directive formed the basis of all of our conversations with her doctor and support staff on issues such as tube feeding, medications and potential hospitalisation, and ensured mum remained in a comfortable, familiar environment with the medication she required to be pain free and comfortable, without extending a life of pain, frustration and unhappiness.

Mum died peacefully with her family by her side and while we miss her, we are confident it was what she wanted and that she had made the key decisions about the health care she received towards the end of her life.

I do not want my children to have the responsibility and emotional stress of trying to implement my health care wishes if the quality of my life diminishes and I lose the capacity to retain control and make decisions. So, while facing one’s own mortality can be confronting, I’ve now started on the development of my own Advance Health Directive.

My key learnings are

  • Don’t delay in developing an Advance Health Directive. You must be deemed able to make an informed decision to put one in place and the reality is a sudden stroke or accident could take away that ability overnight. You can always make changes if you change your mind.

  • It’s important to talk to family members, people you trust and your doctor, but the treatment instructions you include in your directive need to reflect what you want. It is your life.

  • Be as specific as you can about what treatment you want and in what circumstances you want your health instructions to be implemented. The Advance Health Directive can be expressed on your own words. You do not need to use medical terms but it is important to be clear.

  • Ensure your directive is signed and witnessed by appropriate people.

  • Make copies available to your doctor, trusted family members and other people who are close to you. Be sure to also keep a copy with other legal documents such as your Will and Enduring Power of Attorney and Guardianship if you have one.

For more information on developing an Advance Health Directive click here. Become a Live Well Longer member to access further helpful practical information and free resources.