Have you thought about how you would want to be treated if you cannot make your own decisions? You may be unconscious after car accident, you may be so ill you cannot communicate, or you may be dying and cannot convey your wishes. Would you want to be kept alive on life support if there is no hope of recovery?
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If you are 93 with advanced dementia, would you want to be resuscitated and die in intensive care on life support? Or would you rather be at home, in your own bed, with those who you care about nearby?
Thinking ahead about how we would like to be cared for if we can no longer make our own decisions is called advance care planning. It's a simple idea, but one most of us find difficult to do.
Advance care planning is about having a conversation with those close to you so they understand your values. It's important to record those wishes and decisions on a document so it can be referred to when you cannot make those decisions. It's also important to decide who you would want to make your decisions when you cannot.
These documents are usually called advance care plans, or if they are legal documents they are called advance care directives.
An advance care directive is a formal document recognised under common law or under specific legislation, in which the person can record their preferences about their future care and/or appoint a substitute decision-maker, who will make the decisions guided by the person's wishes.
(This does not usually include financial decisions which are covered by another legal document called an Enduring Power of Attorney.)
How do they work?
An advance care directive is written by you, the person, while you have the capacity to make decisions. It's based on the ethical principle of autonomy and self-determination: you have the right to make the decisions about health care treatments in advance.
We all have the legal right to refuse health care. An advance care directive extends this right if we should lose the ability to make decisions.
These documents and/or the substitute decision-maker inform doctors and health professionals about the person's wishes. Doctors can then decide on the most appropriate treatment based on what the person would have wanted. Doctors write the treatment decisions in a clinical care plan informed by the person's advance care directive.
Doctors cannot treat patients without consent, except in an emergency. This is both a legal and ethical principle.
But what if the patient cannot give consent and has not completed an advance care directive or had a conversation with those close to them?
A doctor then has to decide what is best for the individual and consult with family members who may be too distraught to help with difficult treatment decisions. The result may not be what that person would have wanted.
If a patient suddenly dies or deteriorates in hospital the automatic response is to start cardiopulmonary resuscitation (CPR) unless there is clear documentation not to resuscitate. There is now evidence that resuscitation is unlikely to be successful if the person is older, frail or is already dying, yet often patients are subject to this very invasive treatment without their consent.
Consider this scenario. Mrs Smith, aged 92, was in hospital dying of terminal cancer. When she stopped breathing, a "code blue" was called and the emergency team commenced CPR. This involved breaking her ribs. She was admitted to the intensive care unit, where after two days she was allowed to die.
If Mrs Smith had been consulted earlier or completed an advance care directive, she would not have been resuscitated but kept comfortable and cared for while she died.
So, who should make an advance care directive?
We all should have this conversation with those close to us. It is not only about end-of-life care, but anytime that we cannot make our own decisions. The conversation can include organ donation.
Advance care directives are particularly relevant as we get older. As Hal Swerissen and Stephen Duckett note in their report Dying Well, 70% of Australian want to die at home but only 14% do. The majority of people die in a hospital or an aged care facility where they are more likely to receive aggressive treatments aimed at keeping people alive.
However, young people can also suddenly become ill, or receive a traumatic brain injury, so it is something all adults should consider.
Different laws and terminology
The first advance care directive legislation, the Natural Death Act was passed in California in 1976 as a result of a young woman in a coma (persistent vegetative state) who was kept alive on the new life-support technology. The doctors decided she had no hope of recovery but refused to turn the machines off.
Her parents were extremely distressed to see their unresponsive daughter kept alive against, what they believed, would have been her wish. They took the case to court which decided to turn off life-support.
South Australia passed similar "living will" legislation in 1983 giving people the legal right to refuse unwanted treatment in advance.
Now all Australian states and territories have laws and advance care directive documents. All the laws differ and the terminology lacks consistency. This creates confusion which can be a barrier for people wanting to complete an advance care directive.
However, the principles are the same. People have the right to refuse health care while they have capacity. They also have the right to refuse health care after they lose capacity by appointing a substitute decision-maker and/or recording their wishes in advance on the document appropriate for that jurisdiction.
In 2011, the Australian Health Ministers Advisory Council agreed to a national policy framework on advance care directives. This recommends consistent terminology and mutual recognition across state boundaries. In 2013 South Australia passed a new Advance Care Directives Act based on this framework.
Advance care directive documents in SA have now been simplified and include decisions about future health care, end-of-life care, living arrangements and other personal matters, as well as appoint one or more substitute decision makers. Making the process easier is a welcome move and the advance care directives legislation provides a model for other states and territories to follow.
Advance care directives are not about euthanasia nor about demanding treatment. They are about respecting your wishes when you are unable communicate.
Making decisions in advance is a very simple idea, but it is actually quite complex involving the law, medicine and human relationships. To create an advance care directive, you need to:
- have the conversation
- decide who you want as a decision-maker
- complete the relevant document
- give those close to you copies.
It's a great investment for your future.
Margaret Brown is Social Scientist and Adjunct Research Fellow at the Hawke Research Institute at University of South Australia. She does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.