National Advance Care Planning Week – 20-26 March – is the perfect time to start the conversation and share what matters most for our future healthcare, writes Xanthe Sansome.
Bill’s story reflects how advance care planning helps our loved ones and health providers know and respect our treatment preferences if we become seriously ill and no longer able to communicate our treatment decisions.
Until recently, Bill lived with his wife, June, in their home of 40 years. The home where they raised four children and shared many special memories. Home and family were important to Bill, who was raised in Scotland and emigrated to Australia.
Bill was diagnosed with Parkinson’s disease eight years ago and was finding simple daily tasks more challenging – things like getting dressed and getting out of bed. With sheer determination and the support of family and home care staff, Bill remained at home, enjoying family, his garden and “good jokes!”
This all changed when he fell while gardening. This was his third fall that month, but this time, June couldn’t get him up.
After he was admitted to hospital, a nurse asked Bill what mattered to him and how he thought his health and abilities would be in six months. Bill explained, “I must accept I need help with nearly everything. It’s getting harder for June and the family to support me, even with extra help. June covers for my forgetfulness regularly.
“Happiness for me means time with family, an occasional beer, my garden and, if I’m honest, not being scared that I will fall again.
“I have lived a good life and I hope for five more years but would not find life enjoyable if I need bathing in bed or my family couldn’t understand my words or needs. I am not good with pain.”
The nurse suggested Bill write these things down in an advance care directive so that if his health or memory deteriorated further, his family and staff could make decisions that aligned with his preferences. He didn’t want to move to residential care but thought he might be getting close to that. Bill and the nurse discussed this with his family the next day. They agreed that moving into care was the safest and most realistic next step. The family assured Bill they would find a facility close to home, with a garden, and one that could cope with his dad jokes.
Bill moved into the facility the following week. The family brought photos and plants from home. Family members visited daily and walked with Bill in the beautiful gardens. Bill showed them his “new home” as he called it, with the raised garden beds that he could work from and where he and the “other gents” watched soccer with their beer twice a week. Bill’s family noticed how kind and caring the staff were. Bill had his favourite staff who laughed at his jokes, but he said all of them were kind. He liked living there.
Bill’s memory loss progressed over time, and he needed more staff to help him shower. His family was sad to see Bill’s physical and cognitive function decline, but were not surprised given his disease, even with the excellent care provided.
Bill’s wish to stay in his ‘new home’
One morning, June was told Bill was unable to be roused from his sleep. While still breathing, he wasn’t responding to any requests, even to open his eyes. The nurse encouraged June to get the family together to discuss Bill’s care and explained that this sudden deterioration was not unexpected. They explained they were skilled in managing pain and other symptoms but wanted to know Bill’s preferences regarding transfer to hospital and other care, as he was nearing his end of life.
Bill’s advance care directive said he wanted to stay in his new home. The family could move Bill’s bed from his room to the garden and to the TV room with the gents on soccer night. The staff offered him a beer-soaked swab which he obviously savoured. The family noticed Bill seemed content, surrounded by the people and things that mattered most to him.
On his last night, Bill’s family stayed with him overnight and reflected on good times and the great husband, father and grandfather he had been. They were grateful that Bill had been so clear about his preferences so they could focus on being with him, rather than wondering what was best. Bill died peacefully the next morning surrounded by his family who mattered most to him in this world.
The time is now to talk about what matters most to you
Have a heart-to-heart with someone close to you this National Advance Care Planning Week and document your values and preferences. Your advance care directive can become a powerful statement about who you are, and what you value most about living.
Ask your GP to sign your advance care directive. Check if they can upload your advance care planning documents to My Health Record or you can upload them yourself. Share copies with your chosen substitute decision-makers, family, friends, local hospital, and other health providers. This will ensure documents can be accessed when they’re needed most.
Free resources and support
Visit advancecareplanning.org.au to access advance care planning documents for your state or territory.
You can also find free events and online webinars available Australia-wide during National Advance Care Planning Week at acpweek.org.au
For free advice or to request a posted starter pack call the National Advance Care Planning Support Service on 1300 208 582 from 9am – 5pm (AEST/AEDT) Monday to Friday.
Xanthe Sansome is the national program director at Advance Care Planning Australia – which is funded by the Australian Government and administered by Austin Health