From time to time, we hear stories about difficulties experienced at the point of care arising from lack of timely access to advance care directives. There is sometimes confusion about what documents can be shared among health services, exacerbated by misinformed concerns about privacy restrictions. We have put together a list of key considerations to set the record straight.
1. Advance care directives are made to be shared
There is some confusion about whether privacy legislation or health and aged care services policies allow advance care planning documents to be shared. The short answer is yes.
The Commonwealth Privacy Act 1988 and your local jurisdiction health record or information act allows disclosure, sharing and transfer of advance care directives (ACD). An ACD is a vital document that can help family members and health care professionals deliver care according to the individual’s preferences. Access is everything!
2. You can only make an advance care directive if you have decision-making capacity
When a person has lost decision-making capacity, they can no longer complete an ACD. This may often be the case for people that are living with dementia or have had a stroke. An advance care plan may be completed by a person with diminished decision-making capacity or on their behalf, but these documents are not legally binding.
Alarmingly, a review by ACPA showed that as many as 30% of ACDs for people living in residential aged care had been made and signed on behalf of a person without decision-making capacity.
There is a misconception that an ACD can be made a prerequisite to enter residential care - this is not the case. Freedom to plan for your future health care also means freedom to choose not to make an ACD.
3. Use the state ACD forms
There are many reasons to use the state forms – they are well structured, contain all key information required for the advance care directive to be a valid legal document and usually come with a handy companion guide that explains each step. The requirements for advance care planning vary from state to state, remember to check that you are using the form that is relevant in your state or territory.
We know that the aged care workforce is busy and often stretched thin. If you have any questions about how to follow up on ACP conversations or how to complete the forms, we are happy to help.
4. Keep up-to-date
It is essential that aged care providers revisit the ACD after a significant change in health, such as hospital admissions, or after a life event like a partners death. A good advance care directive accurately reflects a person’s thoughts on quality of life, and a big life or medical event can change our views.
5. Know the difference between substitute decision-maker and next of kin
The person that can make medical decisions on someone’s behalf is called a substitute decision-maker. A substitute decision-maker can be appointed via a form and in some states, they are picked from a default list.
The contact person or next of kin for a resident in aged care is not automatically the person that can make medical treatment decisions on behalf of that resident. It is important that aged care providers are familiar with the legislation and refer to the right person when the time comes to make medical decisions.
6. ACPs are only used when the resident can't speak for themselves
The ACD comes into play only when decision-making capacity is lost, either temporarily or permanently. Until the person is unable to make their own decisions, neither the substitute decision-maker nor the plan takes precedence over the resident’s expressed wishes.
How do you store an advance care directive?
- Ensure that ACD documentation is available if acute care is needed after hours. For example, keep a laminated copy next to the resident's bed.
- Hand out a printed copy or email it to family members
- Send it to the local hospital to be kept on file
- File it with the resident’s GP
- Upload the ACD to My Health Record