Usually upbeat and unflappable, Touchstone founder CEO Dr Merran Cooper became emotional when she appeared at the Senate Inquiry into the new Aged Care Bill and spoke about the loss of her husband Mark, and some of the difficult moments she faced as a hospital physician when advance care plans were unavailable.
Read Merran’s moving opening statement or listen to the audio below:
COMMUNITY AFFAIRS LEGISLATION COMMITTEE
Aged Care Bill 2024 [Provisions]
PUBLIC HEARING Friday 11 October 2024
Speaker’s Hall, Queensland Parliament Brisbane, QLD
Good morning, Senators.
Thank you for the opportunity to speak today. I’m Dr Merran Cooper. My journey in health and aged care spans 40 years, beginning as a physiotherapist in home care to becoming a doctor in my 50’s.
My personal experience of end-of-life care was shaped by the death of my husband Mark who passed away peacefully in 1984 surrounded by family and doctors and me. That experience gave us all closure peace and dignity, and I’ve strived to deliver the same throughout my career.
Six years ago, as a 57-year-old junior medical officer, I founded Touchstone Life Care, a technology platform that enables meaningful digital advance care plans (ACPs) to be created and shared ahead of need and made available at the point of need. I did this because I saw what goes on in our hospitals to our elderly.
Whether you are treating a 40-year-old 70 kg man or an 87-year-old 40 kg lady with advanced dementia and heart failure, the medical guidelines are the same. That’s why I found myself holding down – with two bulky security men – a 97-year-old lady with advanced dementia to reinsert the IV she had pulled out for the 3rd time that day. “If you don’t do this Merran,” my boss said by phone that Saturday night, “her heart will stop from lack of potassium on your shift, under your care.”
Another boss, a respiratory specialist, suggested I restrain both wrists of my 84-year-old patient while I inserted a Nasogastric tube to stop her worsening pneumonia. When that lady’s son complained, the doctor reflected to me: “You know, our hospitals are bed blocked with people with advanced dementia and pneumonia, and I can fix them all. But is that what they really want?”
Without digital ACPs we don’t know what they really want.
Decisions are made quickly in aged care that are irreversible and trigger a cascade of treatments that, the research tells us, are expensive, often futile and not what the person would want if they were able to make a choice.
APCs offer that choice. They offer control and autonomy. Peace and dignity. They are used when a person can no longer make or voice their own decisions.
But they only work if they’re accessible. Including on the hospital computer on level 3 of the respiratory ward. Not in a lawyer’s drawer, or on a fax machine, or left behind in the ambulance.
Our platform is used by more than 40 aged care providers throughout Australia with over 4,500 ACPs. We are supported by ANDHealth+ and funding under the Medical Research Future Fund, but still uptake of advance care planning throughout aged care, even paper versions, remains less than 7% despite Recommendations 68 and 66B from the Royal Commission.
I fully support this Bill’s emphasis on digital advance care planning, but measures are needed to ensure uptake at scale, and would like to offer the following recommendations:
- Mandatory Digital ACP Integration into clinical management systems.
- Support for aged care providers to adopt digital advance care planning solutions.
- Enforcement of advance care planning completion and sharing ahead of need.
- Ongoing regulation and monitoring of compliance.
With the Act’s implementation and enforcement, I’m optimistic digital advance care planning will become normalised and the wishes of older people – what they really want – will be at the centre of all care given to them, even when they can no longer make or voice their decisions.
