Data matters. At Touchstone, our digital advance care planning platform is a unique repository of de-identified data on the end-of-life wishes of Australians.
Data provides vital information to inform policy makers and care providers, ensuring the provision of necessary services and enabling them to plan for the future. It also ensures the most appropriate, kindest care is available at deeply vulnerable times.
Here is a summary of some of the insights from the 691 most recent Touchstone digital advance care plans:
Gender identified as:
Female – 64.7%
Male – 32.9% male
Other – 2.4%
The age range of the individuals in the dataset spans from 15 to 109 years old, with a median age of 61.
The most important priorities for a minimum quality of life relate to:
- The ability to communicate.
- Some degree of independence.
- Family around me.
- Maintaining personal activities for meaning.
Touchstone’s data insights
12.97% said life would not be worth living if they cannot hear anything.
30.09% said life would not be worth living if they cannot see anything.
22.5% said life would not be worth living if they cannot talk to loved ones but can hear them and understand what they say.
10.2% said life would not be worth living if they have mild to moderate pain and medication isn’t helping.
45% said life would not be worth living if they have severe pain and medication isn’t helping.
15.5% said life would not be worth living if they can only sleep for a few hours every night and medications aren’t helping.
25.3% said life would not be worth living if they have persistent nausea and medication isn’t helping.
49.4% said life would not be worth living if they cannot eat or swallow anything except sips of water.
22.8% said life would not be worth living if they have lost all control of their bladder.
35.8% said life would not be worth living if they have lost all control of their bowels.
37.9% said life would not be worth living if they are breathless for most of the day and medication is not helping.
28.6% said life would not be worth living if no-one is coming to visit them.
37.9% said life would not be worth living if their condition is impacting the lives of loved ones, and they are distressed by it.
52.9% said life would not be worth living if they do not recognise their family or whereabouts.
For CPR after a catastrophic event such as stroke, major deterioration, illness or operation:
- 40.64% said they only want CPR if it is expected they will have their minimum quality of life
- 49.12% said they do not want CPR
- 10.24% said they do want to receive CPR regardless of quality of life.
If they have a terminal illness, they want to receive palliative care if my death is expected in:
- 38.85% said they want to receive palliative care if death is expected in less than six months
- 29.14% said they want to receive palliative care if death is expected in less than one year
- 26.62% said they want to receive palliative care if death is imminent (24-72 hours)
- 5.39% said they do not want palliative care, only life-extending treatments.
If they have a terminal condition, respondents said they would prefer to receive care:
- Where it is easiest for my family and loved ones to be with me: 43.88%
- At home: 30.58%
- In a hospital or similar: 17.63%
- Other: 7.91%. (The other responses focus on preferring palliative care at home until it becomes too burdensome for the family or when nurses deem it necessary to go to hospital. Some emphasise a desire to not rely on others or a refusal of life-extending interventions when the outcome is poor quality of life.)
If they have a terminal condition, 79.86% would prefer to be told as much information as possible about their illness and treatment, while 20.14% would prefer to not be told that they have a terminal condition or the details of the treatment.
About Touchstone
Touchstone Life Care provides a comprehensive digital advance care planning platform that integrates with clinical systems and provides one-click compliance, with reports easily downloadable for accreditation purposes.
Book a demonstration to discover why residential aged care and home care providers are adopting digital advance care planning.
