A lot of work has been done in Australia to raise public and professional awareness of the Organ and Tissue Donation Network, and the need for reflection and action for people wishing to make their plans known around this.
I believe of even more importance is a national strategy and public campaign along the same lines to empower people in discussion and clear documentation of their advanced care wishes, and to educate and inform healthcare professionals on the need to respect those wishes.
Our patients should be healed during life and during death with exactly the same dignity and respect.
Currently, there are many forms of Advanced Care Directives (ACD) within Australia. We have no standardised document, or cross jurisdictional legal recognition between states and territories.
Even more importantly, there is plenty of confusion and variance amongst healthcare workers over exactly what their legal and ethical responsibilities are in respecting these sorts of documents.
Studies suggest that of people considering an ACD, 10% are near death, 30% are chronically ill and 60% are well. Many people complete their ACD in stages, feeling confident to appoint a [substitute decision maker] while they are healthy but not recording or communicating any directions until they are faced with a life-limiting condition. It is not uncommon for people to keep an uncompleted ACD form in a drawer for many years, until they reach a stage where its value to them becomes greater than the complexities it presents when they attempt to complete it1.
In 2011 the clinical, technical and ethical principal committee of the Australian health ministers advisory council, produced an aspirational framework to provide a set of guidelines, an ethical code and best practice standards in an attempt to underpin the development of a national ACD scheme.
You can download the pdf copy of the framework here.
Advanced Care Planning: Describes the process of planning out the future of the persons future healthcare journey within the context of their values, beliefs and wishes.
In order to best guide decision-making events these plans are best made early, perhaps in informal family discussions or during times of personal reflection.
More often, these plans are made within a hospital or healthcare facility, led by doctors and other health providers after some form of critical or foreboding incident has occurred.
Advanced Care Plan: Is some form of oral or written document that arises from advanced care planning.
It may be made by the person themselves, or on their behalf by a close friend or family member.
Advanced Care Directive: Is a formal document, recognised by common law, to make the persons wishes and preferences for future healthcare management clear and known2. It is completed and signed by the person or a nominated competent adult (known as a substitute decision maker or SDM)
It should be acknowledged that in some cultures it is more appropriate for a family or community member to act as SDM even if the person is competent. It may also be culturally appropriate not to want any advanced care directive.
ACDs and advance care plans are not to be confused with clinical care plans, treatment plans or resuscitation plans written by clinicians to guide clinical care. Such clinical plans should be informed by the person’s own advance care plan or ACD .
Statutory Advance Care Directive: Is enshrined in legislation, is patient based rather than person based (that is, it is completed by patients within a healthcare facility and should include medical expert advice to complete)), and includes such documents as Enduring Power of Attorney, Advance Health Directive, or a Refusal of Treatment Certificate.
An Advanced Care Directive should be considered valid if:
- it was written by a competent adult.
- it was made free of undue influence.
- it was intended by the person to apply to the situation at hand.
If the directions in an ACD meet these criteria they should be respected and guide decision making.
These documents would hold incredible decision making power. Something that we might have problems getting our head around sometimes.
For example: The National Framework recommends that law and policy should support these directions and that healthcare workers should not override them because they believe that the person was not adequately informed or that their wishes are contrary to medical advice.
This includes the right of the person to refuse a specific medical intervention.
If healthcare workers own personal views conflict with the directions in an ACD the person should be handed over to another worker.
Wouldn’t it be great if we could develop some form of central repository of ACD’s akin to the national organ and tissue donation registry? Or at least raise awareness amongst public, general practitioners and other healthcare professionals of the importance in early discussion and action around this important document.
Anyway, have a read of the framework….it has some very useful information….and let us know your own ideas or experiences around advanced care directives.
As a paramedic, we have more trouble just getting the basic patient information from “nursing” homes, let alone anything resembling an advanced care directive!
I’d love to see a standardised form across the board for ACD’s and even a benchmark for the basic patient information required to be available readily should the need arise – both for residential facilities and via GP’s for people at home.
We already have the Emergency Medical Information Book (http://www.emib.org.au) but this relies on the information being updated by the patient or family.