ADVANCE CARE DIRECTIVES
What is an Advance Care Plan and what is an Advance Care Directive?
What is an Advance Care Plan?
An Advance Care Plan is a document that sets out any medical treatment you do or do not consent to – in advance, to be relied on only in the event you lose decision-making capacity.
An Advance Care Plan can also set out your values. That is, those things that are important to you (and which may influence your choices) – such as being able to communicate with your loved ones. Setting out your values can help inform your doctors, carers and substitute decision-makers about what treatment you would or would not have consented to.
If one day you lose decision-making capacity, an Advance Care Plan can assist those involved with your care to make treatment decisions on your behalf by informing them of your wishes. It is therefore important you share your Advance Care Plan with others so it is readily available in the event you lose capacity (which can happen suddenly and unexpectedly, such as in the case of a head injury).
Your Advance Care Plan can inform your family and doctors what specific treatments you do and do not want. It can also inform them what your values are, so they can be guided in deciding what treatment you would or would not have wanted (if such treatment is not specified in your Advance Care Plan). An Advance Care Plan will assist your family or doctors in making decisions about your medical treatment that are in line with your preferences in the event you cannot speak for yourself.
An ‘Advance Care Plan’ is separate and distinct from a document prepared by health practitioners to plan your care, which is often referred to as a ‘Care Plan’. An Advance Care Plan is not to be confused with a Care Plan (which should include an Advance Care Plan).
While a Care Plan should be prepared taking your preferences into account (particularly if you are in aged care), it is not an Advance Care Plan. An Advance Care Plan can only be completed by you, and sets out your choices only. It does not include an assessment of your needs, which a Care Plan does. While an Advance Care Plan may be completed with support from health practitioners, it cannot be completed by them.
The terms Advance Care Plan, Advance Care Directive or Advance Health Directive are often used interchangeably but there are subtle differences.
What is most important is that you have a plan that you share with others that is available in an emergency, that tells your family or doctors what treatments you do and do not want, and why. So they can make good decisions in line with your preferences even when you can not speak for decide or yourself
I’ve heard of Living Wills, Statements of Choices and Advance Care Plans. Are they the same as Advance Care Directives?
An Advance Care Plan may also be known under different statutory regimes in Australia as an Advance Care Directive, Advance Health Directive, Health Direction or Advance Personal Plan. While they all refer to the same concept, note that Touchstone’s Advance Care Directive is not made under any statutory regime.
Do I have decision-making capacity? When might I lose decision-making capacity?
If you are 18 years and over, you are presumed to have decision-making capacity. No one will question this unless there is a reason to.
Even so, at some stage your decision-making capacity may become impaired by disease or injury, or even drugs or alcohol. You might lose decision-making capacity permanently (for example, if you sustain serious irreversible brain damage), or temporarily (for example, if you are put into an induced coma).
In order to have decision-making capacity, you must be able to:
● Understand the nature of the decision that is being made (including the information provided to you in relation to that decision);
● Understand the risks and consequences of the decision (and be able to weigh them up); and
● Be able to communicate the decision (whether verbally or otherwise).
● If there is any doubt as to your decision-making capacity we strongly recommend you have your decision-making capacity assessed and documented by your GP and ask them to upload a copy of that report to your Touchstone Life Care Advance Care Plan.
This will offer reassurance to anyone seeking to rely on your Advance Care Plan later, that you understood your decisions when making them. It will increase the likelihood that your Advance Care Plan will be complied with, and your wishes followed.
Remember that even if you have dementia or are unable to understand some things, it does not necessarily mean you do not have decision-making capacity to make an Advance Care Plan. However if there is any reason your decision-making capacity might be impaired, it is even more important to have your GP assess you and document that assessment.
Who should make an Advance Care Plan?
We urge everyone who is 18 years or over to prepare an Advance Care Plan, even if you are fit and well. Advance Care Plans have even greater importance in certain circumstances, for example if:
● you are elderly or frail;
● you have a chronic illness;
● you have multiple diseases;
● you have an early cognitive impairment;
● you are admitted into a care home or hospital;
● you are approaching your end of life;
● you are about to be admitted to hospital or have major surgery.
Life is unpredictable. It is therefore best to prepare your Advance Care Plan while you are healthy, to ensure you have time to discuss your wishes with family, doctors and trusted advisors.
I don’t fall into any of the above categories. Should I still make an Advance Care Plan?
Even if you are young, fit and healthy, you should make an Advance Care Plan if you have wishes about your medical treatment. However note that Touchstone’s Advance Care Plans are only available to people aged 18 or over.
Advance Care Plans are not only important in the context of ‘end of life’ situations. The unexpected can happen. An Advance Care Plan will become important if any time you lose decision-making capacity, even temporarily.
For example, you might lose consciousness after an accident and need a blood transfusion.
Through an Advance Care Plan you can refuse consent to this if it is contrary to your beliefs, even if it would be life-saving. You can also confirm consent to a blood transfusion (regardless of your beliefs), to avoid any confusion later.
When will my Advance Care Plan be used?
If you have decision-making capacity, your Advance Care Plan cannot be used and consent must be obtained from you directly.
An Advance Care Plan only comes into effect if you become unable to make or communicate your own decisions regarding medical treatment, and only in circumstances covered by the Advance Care Plan. It is there ‘just in case’ it is needed. If you are lucky, it might not ever be needed.
Your Advance Care Plan may be used if you temporarily lose decision-making capacity. However, once you regain it your Advance Care Plan will no longer be relevant and consent will only be sought directly from you.
What treatments can my Advance Care Plan cover?
An Advance Care Plan will not cover all treatments – only the ones you specify. It is important to be as clear and specific as possible about what treatments you do and do not want.
An Advance Care Plan also cannot compel a health practitioner to withhold palliative care, assist you to die, or give you treatment which is futile.
Since it is not possible to cover every conceivable treatment in an Advance Care Plan, Touchstone’s Advance Care Plan allows you to set out what is important to you, and the things you need to live your minimum quality of life – such as being able to communicate with your loved ones. These values will guide health practitioners when treating you by enabling them to assess whether you would have consented to a particular treatment in a given circumstance.
For example, if life-saving brain surgery would inevitably leave you non-communicative (eg. in a permanent vegetative state) and you have indicated you do not want to live this way, your doctors might decide against performing such surgery.
Note that setting out your values alone (without being specific about treatment) will be open to interpretation. In the example given, a decision to operate might be made if it is believed you would be able to communicate with assistance, and therefore would have consented on the basis of your values.
Therefore if there is treatment you absolutely want to exclude, you must be very specific about that in your Advance Care Plan. The more specific and clear about the treatment you consent or refuse consent to, the greater likelihood you wishes will be followed.
Is an Advance Care Plan like a Will?
A Will sets out your wishes in relation to your assets after you die whereas an Advance Care Plan sets out your wishes in relation to your medical treatment before you die. This is why sometimes Advance Care Plans are called ‘Living Wills’.
Just as a Will helps plan the future of your assets, an Advance Care Plan helps plan the future of your medical care. Like a Will, an Advance Care Plan becomes operative when you are unable to communicate your wishes. However unlike a Will, an Advance Care Plan is only relevant if you are still alive, as it concerns medical treatment only.
Since your lawyer is usually involved with planning for your future, Touchstone Life Care enables you to share your Advance Care Plan with them as well, if you choose to.
What is the difference between an Advance Care Plan and Power of Attorney and/or Guardianship?
An Advance Care Plan is a document which sets out your wishes in relation to medical care. It expresses your consent, or refusal or consent in advance. Unlike powers of attorney or guardianship, an Advance Care Plan in itself does not empower another person to make a medical treatment decision for you unless you name your preferred Substitute Decision Maker or Substitute Decision Makers in your Advance Care Plan.
A substitute decision maker must have regard to your wishes, including those set out in your Advance Care Plan. This is because a substitute decision maker must decide your medical treatment in accordance with what they believe you would have wanted (and not in accordance with what they believe your best interests are).
Every state and territory in Australia has different laws around powers of attorney and guardianship. If you do not name a substitute decision-maker in your advance care plan, then depending on your state or territory and individual circumstances, your substitute decision-maker might be your power of attorney, or a guardian.
Who is my substitute decision maker?
Touchstone’s Advance Care Plans enable you to nominate a substitute decision maker.
However, depending on your state or territory, only certain substitute decision makers might be recognised at law. Depending in your state or territory a substitute decision-maker is also known as a medical treatment decision maker or a person responsible.
A health practitioner may be obliged to consult a legally recognised substitute decision-maker rather than the person you nominate on your Advance Care Plan. We therefore strongly recommend you seek advice in your own state or territory as to how to formally appoint a substitute decision maker (or medical treatment decision maker/person responsible), consistent with the person nominated in your Advance Care Plan.
Can my family ignore my Advance Care Plan?
A family member is only entitled to make a medical treatment decision on your behalf if they are also your substitute decision-maker/medical treatment decision maker/person responsible at law.
Your substitute decision maker is legally obliged to consider your Advance Care Plan if you lose decision-making capacity. Even if they are a family member, they cannot ignore your Advance Care Plan.
Can anyone else challenge my Advance Care Plan?
If you have decision-making capacity, the content of your Advance Care Plan is entirely up to you.
However, if anyone is concerned about your decision-making capacity at the time of making your Advance Care Plan (including your family), they might challenge it.
Similarly, a health practitioner might challenge your Advance Care Plan if they doubt its validity, or that it applies to particular circumstances at hand.
Each state and territory has different legal mechanisms to do this, whether by application to a court or tribunal.
When might someone challenge my Advance Care Plan?
A person might challenge your Advance Care Plan if they do not believe it was validly made – for example, if:
● They believe you did not have decision-making capacity at the time of making it;
● They believe you did not understand the nature of the decision/s;
● They believe you did not understand the risks or consequences of your decision/s;
● Circumstances have changed such that your Advance Care Plan no longer appears to apply, or circumstances have arisen which you were unlikely to (or could not have) anticipated at the time of making the Advance Care Plan;
● They suspect the Advance Care Plan is fraudulent;
● They are concerned your Advance Care Plan may not have been made freely or voluntarily, or that if may have been made with coercion;
● The Advance Care Plan is unclear or cannot be understood;
● The Advance Care Plan is contrary to other wishes you have previously expressed.
This is why Touchstone Life Care’s System includes the automatic sharing of your plan with the people you choose to be your Trusted Contacts. This may include, at your choosing, your lawyer and General Practitioner . By sharing and discussing your plan in advance it is far less likely to be challenged, because all the people you want to be making decisions for you will know about your choices and the reasons for them, ahead of time.
Is an Advance Care Plan legally binding?
Ultimately, it is only a court or tribunal that can declare an Advance Care Directive to be legally binding. They might need to do this if the validity of an Advance Care Plan is challenged.
Touchstone Life Care’s Advance Care Plan does meet the requirements for an Advance Care Plan under Common Law but it does not meet the requirements under Statutory legislation. If you would like the additional protection of an Advance Care Directive made under statute ( State or territory legislation) you must speak to your GP or lawyer.
Touchstone Life Care has designed our Advance Care Plan so that if it is completed as we recommend, legally it must be considered if a health practitioner needs to make a medical treatment decision on your behalf. This is the case in all states and territories in Australia, although there may be some limitations to its scope in some states/territories when it comes to certain types of treatment, or treatment for mental illness.
In addition we provide safeguards that will give a court or tribunal additional confidence that your advance care plan is a true statement of your wishes. These include:
- automatically sharing and notifying your trusted contact of any changes you make.
- reminding you, and making it easy for you to update it regularly, and share with your family, GP and lawyer.
- teaching you how to discuss your advance care plan.
By sharing and discussing your plan in advance there is far less likelihood it will be challenged, because all the people you want to be making decisions for you will know about your choices and the reasons for them, ahead of time.
There are other circumstances when a health practitioner is not bound by your Advance Care Plan, namely:
● If the treatment consented to is futile;
● If the treatment refused is palliative care;
● If decision-making capacity is required of a patient in order to lawfully administer the treatment (eg. voluntary assisted dying in Victoria);
● If other laws apply which preclude a health practitioner from relying on the Advance Care Plan.
Can I share my Advance Care Plan with anyone? Should I?
Touchstone Life Care’s system provides automatic and instant sharing of your Advance Care Plan. Once you have completed your Touchstone Life Care Advance Care plan, you can share it via a secure link with your family, doctors and other Trusted Contacts. This allows them to view a copy of your Plan but does not allow them to edit or delete the document.
It is your choice whether you share your Advance Care Plan with anyone at all. However we strongly encourage you to do so. We believe that sharing your Advance Care Plan with loved ones will clearly communicate your wishes to them, promote discussion and understanding, and reduce the risk of confusion, or any legal challenges if the time comes when a decision about your medical treatment needs to be made.
Sharing your Advance Care Plan with your family, GP and lawyer will also offer reassurance to health practitioners that it was validly made, and reduce the risk it will be challenged. Further, it will facilitate access to your Advance Care Plan if it is needed in an emergency.
Anyone you share your Advance Care Plan with will be able to access it at any time by logging onto the secure link which is emailed to them.
What steps can I take to prevent the risk of my Advance Care Plan being challenged?
We cannot guarantee that your Advance Care Plan will not be challenged by another person. However we recommend the following steps be taken to mitigate the risk:
● Share your Advance Care Plan with as many of your loved ones as possible. That way any concerns or issues can be discussed, to avoid confusion later.
● Discuss your Advance Care Plan with your GP to ensure you understand the risks and consequences of your decisions.
● If there is any concern about your decision-making capacity, ask your GP to assess your decision-making capacity, document it and upload the report to your Touchstone Life Care Advance Care Plan.
● Review and confirm or update your Advance Care Plan at least every six months.
Failure to take these steps may risk treatment decisions being made contrary to your wishes.
How often should I review my Advance Care Plan?
You should review your Advance Care Plan as regularly as possible, and amend or revoke it if necessary.
The Advance Care Plan on our system, once completed, will be deemed to reflect your current wishes. Sometimes your circumstances, values or beliefs change, or there might be advances in treatment that impact your decision/s. If this happens, it is important you immediately review your Advance Care Plan and verify, change or revoke it.
We will send you a reminder every 6 months to review and update your Advance Care Plan, preferably with the assistance of your GP.
If your Advance Care Plan is more than 6 months old and has not been reviewed, or if circumstances have significantly changed since the last review, there is a risk that:
● Someone will comply with your Advance Care Plan when your wishes have changed; or
● Someone will challenge your Advance Care Plan on the basis that circumstances have changed.
What if I change my mind about my Advance Care Plan?
You can change your mind about your Advance Care Plan at any time. You can change it, or revoke it completely.
You are the only person who can change your Advance Care Plan, and while you have decision-making capacity, no one can revoke your Advance Care Plan but you.
As soon as you amend your Advance Care Plan, you must ensure you destroy all hard copies of the old Advance Care Plan and share the updated copy with anyone with whom you shared your previous Advance Care Plan.
Touchstone Life Care automatically updates the date on your Advance Care Plan any time you make a change, even if it is only one small change, and even if you make more than one change on the same day. We automatically update the date whether you change your mind about treatment choices or substitute decision makers, or any contact details.
If you would like to revoke your Advance Care Plan, you can simply delete your account. Your Advance Care plan will then not be accessible by anybody.
If you change or revoke your Advance Care Plan, the people with whom you nominated to share your Advance Care Plan will be automatically and instantly notified by email.
What happens in an emergency?
If you lose decision-making capacity, medical treatment may be lawfully given without your consent in an emergency if:
● it is not known whether you consent; or
● you are not known to have previously refused consent.
In these circumstances, treatment decisions will be made on the basis of your best interests, as assessed by others. However, if you have a valid Advance Care Plan in which you refuse consent to treatment such as a blood transfusion or CPR, you cannot lawfully be given this treatment – even if it is in your best interests.
If a copy of your Advance Care Plan is not immediately available in the event of an emergency, a health practitioner may need to administer life-saving measures until they can contact your next of kin. It is therefore crucial to ensure your loved ones are aware of your Advance Care Plan and understand its contents.
This is why Touchstone Life Care’s System includes the automatic sharing of your plan with the people you choose to be your Emergency Contacts, and their details. This makes it easier for your doctors to find people in an emergency who know about your plan and can help the make decisions that are aligned with what you would want to happen.
How would a hospital know that I have an Advance Care Plan?
If possible, the hospital will be advised by you or your family when you are admitted. The hospital can also contact your General Practitioner if you or your family are unable to tell them. The hospital can be provided with a secure link to your Advance Care Plan either by you, your family, your GP or lawyer.
If you choose, you may upload your Advance Care Plan to My Health Record. However if you amend or revoke your Advance Care Plan it is your responsibility to also update My Health Record immediately.
It is recommended that you keep an up-to-date hard copy of your Plan in your home, handbag or wallet in case of an emergency, or a copy of the link to it.
If I am travelling interstate - will my Advance Care Plan still apply?
With Touchstone Life Care, your wishes are easily accessed by health practitioners all over Australia by a secure link to the latest version of your Advance Care Plan.
Your Advance Care Plan is a statement of your wishes. As such it is a statement of your wishes in any state and territory. Your Advance Care Plan will assist any health practitioner in Australia to assess what medical treatment is right for you.
However, specific state and territory legislation may impact the weight given by health practitioners to some of the choices or values set out in your Advance Care Plan. If you are relocating to another state or territory, you should seek advice from a local GP or lawyer to discuss that state’s or territory’ specific requirements.
If I am travelling overseas - does my Advance Care Plan still apply?
Touchstone’s Advance Care Plan is intended for use in Australia only. It would be up to health practitioners or carers overseas to decide how much they rely on your Advance Care Plan in the event you lose decision-making capacity.
If you intend to relocate overseas, we recommend you speak to a doctor or lawyer locally about how to make an Advance Care Plan.
What if I do not have an Advance Care Plan?
If you do not have an Advance Care Plan, then in the event of a serious illness or accident, health practitioners will normally consult your family in making treatment decisions. Family members may need to make harrowing decisions about your care which can cause conflict and delay overall medical treatment.
If health practitioners are unable to contact your family, then without knowing what your wishes are they will need to make treatment decisions according to what they believe are your best interests.
Having an Advance Care Plan will make your wishes clear so you do not receive treatments you do not want to have.
Touchstone Life Care
Where is Touchstone Life Care based?
Our organisation is based in Australia but we operate globally. This particular Advance Care Plan is for use in Australia only.
Our team is available at email@example.com to answer any of your concerns or issues. We answer promptly and are happy to hear from you with any questions.
How much does it cost to use your system?
Given these uncertain times, we have extended the offer to use our system for free until the end of 2020.
We are offering all new and current users free use of our system until then. This will give you time to really consider what you want in relation to your future care needs.
Unlike other online memberships, we believe this time should be ‘no strings attached’ which is why we do not ask for any credit card details at the start of your free trial.
We will email you towards the end of 2020. You can take some time to decide if you wish to continue your membership. If so, you can sign up. If not, you can download your existing Advance Care Plan and part company with us.
If you wish to sign up formally, you can choose from the below options:
Monthly Plan: $8 per month
Annual Plan: $97 per year
Should you choose to sign up to an Annual Plan, your membership will renew 12 months from the date you pay. This will effectively give you up to 20 months access in your first year!
Our plans are charged in Australian Dollars.
Can I download my Advance Care Plan once completed?
Yes you can download your completed Advance Care Plan in PDF format at any time from your personal Dashboard on our website.
We recommend downloading and printing a copy any time you update your Advance Care Plan (and destroying the old one).
Who can access my information?
In case of emergency your Advance Care Plan can be accessed remotely via the secure link provided to your family, doctor and other trusted advisors.
Other than this, unless you have provided your login details to anyone, your account is completely secure and protected by Australian Privacy laws.
How secure is your site?
Touchstone Life Care complies with Australian Privacy laws regarding data security and follows best practice data security protocols.
Individual user records are separated using access control lists, ensuring no user data is exposed to any other user. The final public connection to and from the server will feature AES 256 bit encryption.
Our servers are located in an extremely secure, PCI DSS approved data centre in Sydney, with access strictly limited to secure personnel only.
How can I cancel my account?
Once you have downloaded your Advance Care Plan, simply send us an email at firstname.lastname@example.org and let us know that you want to close and remove your account and all data.
We will be in touch to verify your identity so we can commence the removal.
Before removing your account, we will email you a copy of your Advance Care Plan.