Queensland, we need to talk about dying
Friday 26 May 2017
Queensland, we need to have a conversation about the end of our lives. In particular, we want to talk about dying. That’s right: dying, not death.
What’s the difference between death and dying? While death refers to the moment of the end of life, dying is the name given to the process of approaching death. Dying can take a short or long time, and a lot of factors affect how the process takes place for each individual person.
Statistics show that while we prepare for death, we’re actually far less prepared for dying. Over half of Australians have a legal will ready in the case of their death, but only 19 per cent of Queenslanders have an ‘advance care plan’ that outlines the kinds of choices we’d like to be made should we be unable to make, or communicate, decisions regarding our health.
Even though contemplating our own end of life can be a bit confronting, thinking about it ahead of time and carrying out advance care planning can be beneficial to you, your loved ones and your healthcare team.
What is advance care planning?
Depending on your personal preferences and stage of life, advance care planning might be as simple as having a conversation with your loved ones or healthcare team about what you would want if you were very sick or dying, or you might choose to complete written forms recording your decisions about medical treatment and care.
Read through the information on the Queensland Health website about the different steps involved in advance care planning including ‘discussing, recording, sharing and reviewing’.
In Queensland, you can chose to record your advance care planning decisions in the following forms:
- an advance health directive, used to guide your medical care in a range of very specific circumstances. This is the most direct statement of your wishes, should you be incapacitated, and choices documented in an advance health directive will override an enduring power of attorney and Statement of Choices
- an enduring power of attorney document, appointing a substitute decision- maker on matters of health and/or finance should your capacity to make decisions on your own be impaired and circumstances not be covered by your advance health directive
- and a Statement of Choices document, documenting your wishes, values, and beliefs to support advanced care planning conversations.
It may seem like a lot to bring together, but each of these forms are available on the Queensland Government website, where you can also read about the steps you’ll need to take to share and review them.
Why is this important?
When a person is dying, they or their family might have to make decisions about the medical treatments and care they receive.
Advance care planning can help you think about these decisions before they need to be made, giving you time to consider your options and chose what is right for you. Advance care planning can also make a difficult time for loved ones a little simpler if, when the time comes, you are not in a position to communicate your wishes.
If at any time your thoughts change on any of the decisions you’ve made, you can update your advance care planning forms to reflect that.
Consider the care you want
Putting your wishes in writing means that you are more likely to receive the kind of care you want. Patients who have undertaken advance care planning receive fewer unwanted medical interventions and can make their beliefs about quality of life clear.
Medical care has a tendency to focus on the preservation of life, which can be traumatic for patients who are frail or dying. Advance care planning can make your wishes clear on matters of resuscitation, ventilation, intravenous feeding and hydration, and other medical procedures.
Further, patients who have carried out advance care planning are less likely to be moved from home or community care, and are less likely to die in hospital.
Reduce burden on loved ones
If you are incapacitated by injury or illness and unable to make decisions for yourself, and you don’t have advance care planning forms in place, doctors will typically consult with your family about life-and-death decisions. If you haven’t nominated an enduring power of attorney, the decisions about your care will default to a partner or close relative.
In this situation, the individuals who do make the decisions may already be experiencing considerable amounts of stress. Their desire to make the “correct” decision without being able to get input from you can cause more stress and guilt, particularly if your own wishes haven’t been made clear.
Carrying out advance care planning means you can take the time to designate a representative, make sure they’re willing to be in the position of making decisions on your behalf, and ensure that they’re clear on your wishes. This considerably reduces the burden on your representative and the potential guilt they may feel after making life changing choices on your behalf.
Give clarity and context to your risks and decisions
Part of carrying out advance care planning includes consulting with your GP and medical specialists. This will give you an opportunity to determine where your health is at and what conditions you are most at risk of.
Your doctor can also guide you through the consequences of your decisions, and the difference between medical conditions such as permanent unconsciousness and a persistent vegetative state, helping you make the decisions that are best for you.
Bring your ethics and beliefs into focus
Advance care planning isn’t just about medical treatments you’d like to receive or refuse – it’s also a chance to think about and outline what you value most about life and how you’d like to die. You can identify situations you would find unacceptable, information you would like everyone to know when making decisions, and people you would like to have nearby at the time of death.
It’s also your opportunity to identify specific values or beliefs you’d like to be honoured, and any people you would like involved in decision-making should your declared power of attorney representative be unavailable.
Optional, but important
Advance care planning documentation is optional: you aren’t required to complete any forms. But the process of putting it all together can help you have the conversations and make the decisions that will affect both you and your loved ones at a really important time in your life.
You can learn more about palliative care in Australia on the Palliative Care Australia website.