Imagine that you have been asked to make medical or life changing decisions on behalf of your loved one as they are unable to do so themself, but you do not know what their wishes are.
Everyone deserves the same level of compassion, dignity, and care regardless of their gender, age, religion, cultural background and lifestyle choices. And whether they hold mental capacity to make their own decisions. Doctors will always try to keep people alive but the way in which they would need to treat someone may not be what that person would want.
In a medical emergency, doctors make decisions based on your urgent needs as a patient. In non-emergency situations, doctors will explain the current situation and treatment options allowing you to decide on what treatment and care you would like to receive. If you lack capacity or are unable to communicate your decision, then your loved ones will be asked to do this for you. If you do not have anyone to do this for you then the doctor will make the final decisions
What is Advanced Health Care Planning?
Advance Health Care Planning refers to the process of planning your health care and allows you to make and document decisions about your health care values and beliefs and the way in which you wish to be cared for in the future. Your chosen health care is then recorded in a document which is witnessed and if completed correctly, becomes legally binding.
Advanced Health Care Planning Statistics
Palliative Care Australia conducted an independent survey via an online research panel in April 2016 with 1,006 Australian men and women aged 18 years and above participating. Some of the results revealed that 85 per cent of Australians believe that it is important to have a conversation with family about the care one would like to receive at end-of-life, but only a third of those surveyed have actually had the discussion.
Results from a TellThem4Me® survey in January 2021 revealed that 47% of respondents had informed their loved ones of their wishes regarding their preferred health care but just 8% had formalised their wishes in an Advanced Heath Care Directive. In addition, 50% of respondents had not informed their loved ones who their key health care providers were and 20% of organ donors had not informed their family of their wishes to donate their organs. Source: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2017/05/20170518-Media_Release_Survey-v2-FINAL-1.pdf
What is the name for Advanced Health Care Planning documents?
Depending upon where you live in the world, these documents may be known as a Living Will, Advance Care Directive, Advanced Health Care Directive, Advance Care, Advance Decision, Personal Directive, or a Medical Directive.
When should I create an Advanced Health Care Directive?
Once 18, It is best to create your Advanced Health Care Directive whilst you are well as you just never know what may happen to you and when. If you lack capacity when you create one, then it will not be valid. Capacity means that you can make freely make health care decisions, communicate them and show that you understand the decisions, the content and the consequences of them.
Why are Advanced Health Care Directives important?
Generally, a Doctor will work to keep you alive but without knowing your wishes they may have to make decisions which you would not agree with. These decisions may provide stress or conflict, not comfort, to your loved ones in times of accident, illness (including Coronavirus Covid-19) or injury when you are unable to communicate for yourself,
By planning ahead and providing this valuable information, family members and medical professionals feel reassured that they are respecting your wishes and can make informed choices about your Health Care (the way you are supported with your health conditions) and treatment (what you are given for your illness or disease) thus relieving loved ones of the stressful burden of making decisions for a time when you can’t.
How much does an Advanced Health Care document cost?
Depending upon where you live you may be able to create your document for free or with the support of a legal professional for a fee. It is a good idea to check locally for free versions before splashing out your cash. There are lots of government led initiatives which support people to log their health care wishes especially in Australia
Who can help me prepare my Advanced Health Care Document?
Depending upon where you live there may be a downloadable document available on a local government website or through charitable organisations. These documents are clearly laid out with lots of prompts or questions to support you. Alternatively, you can ask your GP for support or a legal professional to help you.
What happens if I can’t make decisions about my health care in the future?
When deciding upon your preferred health care, you can appoint a person to be your medical treatment decision maker. Depending upon where you live in the world, this person may be known as your substitute decision maker, enduring guardian, custodian, attorney, agent, person responsible or decision-maker.
If you are unable to make decisions and no formal appointment has been made, then someone you have a close and continuing relationship with will be asked to make medical treatment decisions on your behalf. If you do not have someone who can do this, the doctors will make the final decision.
Are Advanced Health Care documents easy to create?
For some people, writing these documents can be quite strange and confronting as you are considering what you would like to happen to you if you are unable to communicate your wishes.
To prepare yourself, it is worthwhile sitting down quietly and considering the following before making and documenting your decisions:
- Consider any existing health conditions and treatments and what the future may look like for you
- Consider you religious, spiritual or cultural beliefs and how these might affect your health care and treatment in the future
- Consider what quality of life looks like, feels like and sounds like for you
- Consider the type(s) of treatment you do or don’t want in different circumstances (serious illness, serious injury, terminal illness and end of life care)
- Consider whether or not you want to appoint a substitute decision maker (guardian, agent, attorney etc)
What is included in the Advanced Health Care document?
Your document details your preferred health care and treatment and will have common elements regardless of where you live in the world. You can include a values statement (which describes your values and beliefs), your preferred health care and information about anyone you nominate to make health care decisions on your behalf for a time when you can’t. There will also be specific wording included which validates the document and it must be signed by witnesses and a medical professional.
Most commonly, advanced care plans detail life sustaining or life prolonging treatment. This treatment aims to prolong a person’s life but will not reverse the underlying medical condition. Treatment includes CPR, mechanical ventilation, dialysis, ventricular assistance, antibiotics, artificial nutrition, and hydration
- CPR – Cardiopulmonary Resuscitation is a treatment that is used if your hearts stop’s beating. It involves chest compressions which push air into the lungs creating an artificial heartbeat until your heart starts beating again. An automated external defibrillator machine (AED) may also be used which administers electric shocks to restart the heart or return the heart to its normal rhythm
- DNR – Do Not Resuscitate is a request that you do not have CPR is your heart stops beating.
- Mechanical ventilation is a form of life support that takes over the work of breathing when a person is not able to breathe enough on their own. The mechanical ventilator is also called a ventilator, respirator, or breathing machine.
- Dialysis uses a machine to filter and purify the blood using a machine when the kidneys are not able to function properly.
- Ventricular assistance involves the use of a mechanical pump that helps pump blood around the body
- Antibiotics are used to treat people with infections and using these for someone nearing the end of their life is common although some may be concerned that it may prolong their life
- Artificial nutrition and hydration are treatments given to people who are seriously ill, recovering from surgery or at the end of their life and unable to eat or drink adequate amounts. It contains a mix of essential nutrients and fluids and is fed intravenously (through an IV), subcutaneously (through the skin) or through a tube placed in the stomach or intestine.
It is important that if you have an illness that you discuss your individual circumstances, illness, and treatment options with your doctor so that you can understand the potential benefits (living longer) and potential disadvantages (pain, suffering, distress) of any treatment you may receive.
What is a values statement?
A values statement records general statements about your priorities and preferences and can help guide your treatment and care in the future. It might include statements such as
- If I cannot recognise my loved ones, then I do not wish to receive any further life sustaining treatment
- If I am too unwell to remain at home then I would like a medical facility to take care of me, I do not wish to become a burden on my family
- If I am in the final stages of my life, I would like to be made comfortable and remain in my own home
- If I have suffered a permanent brain injury and I am conscious but cannot walk, talk then I do not wish to receive any life sustaining treatment
Is my Advanced Health Care Directive a legally binding document?
Valid Advance Health Care Directives are legally binding and must be followed. Health professionals and family members have no authority to override them. You must have capacity when you write it and it must:
- Have clear and specific details about treatments that you would accept or refuse
- Apply to the situation you are in at the time
- Be witnessed by someone you trust and by your doctor
What if my loved ones do not wish to talk about or know about my health care plans?
When we are well, we avoid talking about or recording details of how we would want to be cared for and treated if we were unwell. What we do know and communicate quite easily though is all the things we wouldn’t want for ourselves if we were to become a burden on our families, have limited movement, limited chance of recovery or a lengthy dying process ahead of us. Without a doubt, these conversations are emotionally charged and difficult to have but let your loved ones know that by recording your wishes now you will help them to alleviate any feelings of anxiety, worry or guilt if they need to make life changing decisions which may result in your death in the future.
What happens if I change my mind?
If you change your mind about the way in which you wish to be treated or cared for, you can simply void your old document by crossing through it and writing void across it and creating a new one which must also be validated in the way mentioned previously.
What happens if I move to another state or country?
Depending upon where you move to, your Advanced Health Care directive may not be valid when you move state or country. It is important that you check to make sure that it is still valid and make any necessary changes as soon as you are able to.
Who should I give the document to?
You should give a copy of your legally binding document to someone whom you trust. If you are a TellThem4Me® member, one or more of your Nominees could be the most suitable people to share this with