Making specific instructions

Do I need to give specific instructions?

Some people choose to give specific instructions about medical treatments and health care they would accept or refuse as part of their advance care planning. Other people choose to give more general information about what matters most to them, to guide their decision-makers in making decisions on their behalf.

You don’t need to give any specific instructions if you don’t want to, or if you aren’t sure. You can give specific instructions about medical treatment/s that you do or don’t want in an advance care directive. These statements are legally binding, noting that in some states and territories only a refusal of treatment (not consent) is legally binding.

Learn about advance care planning and the law.

If you choose to give specific instructions, you should:

• consult your doctor first to understand your health condition, what decisions may be needed, your options, and the risks and benefits of each option.
• be aware that consenting to or refusing treatment in an advance care directive could be acted on in situations you have not considered – talk this through with your doctor
• make your statements and intentions clear for doctors who might read them by explaining when they should apply, like ‘if I’m not expected to recover’, and including the reasons for your statements.

Life prolonging treatments

Life prolonging treatments keep people alive by supporting the body’s vital functions. If you’re sick, they could stop you dying and give you a chance to recover. If you don’t recover, you may need to rely on these treatments for the rest of your life.

You need to weigh up the potential benefits and burdens of a treatment as it relates to you. This is usually a hard decision and you need to choose what’s right for you.

Planning and making decisions about life-prolonging treatments can be emotionally difficult for you and your family, but it can also be comforting. If your loved ones ever need to make decisions on your behalf, they’ll know what you would want. And you can feel confident that your preferences are known and understood by those closest to you.

Your health care team can help you learn about these treatments and can help you decide.

Think about how the treatment would fit within your life goals, values and beliefs. You have a right to say 'no' to any treatment if you don’t feel it’s right for you. If you do decide to say 'no' to a particular treatment, you’ll continue to receive other medical and nursing care, including palliative care to keep you comfortable. You won’t be abandoned by the doctors and nurses looking after you.

The benefits of a life-prolonging treatment might include living longer and improving the quality of your life. But everyone is different and the likelihood of success will depend on your particular medical circumstances.

The potential burdens of treatments might include more pain, suffering and distress. You might need to be in hospital or have regular medical appointments. It’s also possible you’ll have a poor quality of life for longer. Thinking about the risks and benefits can help you decide which you’ll accept or refuse.

CPR (cardiopulmonary resuscitation)

Your heart and lungs pump vital blood and oxygen around your body to keep you alive. If your heart stops, or you’re not breathing, CPR can keep you alive and stop harm to your brain and organs.

If you have CPR early enough, you may survive and make a full recovery. This is more likely if you’re young and your heart starts beating again quickly, and your brain gets enough oxygen.

Even if CPR is started early and done correctly, it often doesn't work. Fewer than 1 in 5 people who receive CPR survive and return to their previous normal life and normal level of function. For many people with a serious illness, such as cancer, dementia, advanced lung, heart or kidney disease, or advanced age, the likelihood of success is even lower.

During CPR someone may:

• push hard and fast on your chest to make your heart pump
• blow air into your lungs using a tube or their mouth
• give you electric shocks that restart your heart (defibrillation).

Risks of CPR

Permanent brain damage is possible after 5 minutes without oxygen. If you don’t have CPR early enough, you could:

• survive but not wake up
• have physical disability
• have problems with your speech, memory, thinking, behaviour and personality
• die soon afterward.

Other risks include:

• internal bleeding and physical injuries such as broken ribs, lung and organ damage
• vomiting, breathing in stomach contents (aspirating), and lung infections
• long stays in hospital
• relying on a breathing machine for a long time
• needing rehabilitation.

Breathing machine (artificial ventilation)

A breathing machine pushes air into your lungs through a tube into your mouth or through your windpipe (tracheostomy). It can help you breathe while you recover from a serious injury or a severe illness such as pneumonia.

Some people may need a ventilator for the rest of their lives. This includes people with permanent, severe lung disease or a muscle disease such as motor neurone disease. It can also include people with permanent brain damage following an accident. In these circumstances, the person would have a tracheostomy (tube into windpipe) and be connected to the ventilator. The ventilator may be required all the time, or a person might be able to have short periods of time off the machine. In this situation, it may be difficult to live at home. A person may not be able to swallow and eat normally and may not be able to speak normally. The breathing machine can’t treat the cause of the breathing failure. Sometimes all that happens is the dying process is prolonged.

Risks of a breathing machine

• Lung and vocal cord damage and muscle weakness
• Infections and fluid in the lungs
• Long stays in hospital, or not being able to go home
• Not being able to come off the ventilator if you become too weak

In some circumstances it's possible to use a nose or full face mask (rather than a tracheostomy), which is then connected to the ventilator. This is referred to as non-invasive ventilation. It’s usually used where ventilation isn’t required all the time, as the mask can easily be removed or applied as required.

If you have an illness that's likely to affect your breathing in the future, talk to your doctor about these treatments. Also speak with your loved ones so they understand your preferences.

Feeding tube (artificial nutrition and hydration)

A feeding tube can be inserted through the nose into the stomach (nasogastric tube) or directly into the stomach (PEG tube) to provide food and water. You may need a feeding tube if you can’t eat, drink or swallow – for example, after a stroke.

The tube might be inserted temporarily where recovery is expected, or permanently where the ability to swallow will not improve enough to return to normal eating and drinking. A person may feel that their quality of life is otherwise reasonable and they would like to have a long-term feeding tube.

As part of the natural process of dying, like in cases of advanced cancer and dementia, people lose the desire to eat or drink. This is normal. Dehydration may occur, but isn’t unpleasant and is unlike thirst in a normal situation. Many people in this circumstance can swallow. In these circumstances the use of a feeding tube may not help as it can’t change the underlying disease processes and usually doesn’t stop death from occurring.

Risks of a feeding tube

• Inserting the tubes can cause pain or discomfort
• Tubes need changing often
• Leaking stomach acid (reflux) is common, and can cause pneumonia and breathing problems
• You may need medicine or restraints if you have dementia, or a condition where you might pull the tube out

Kidney machine (dialysis)

If your kidneys are failing, a kidney machine can remove waste and fluid from your blood, through tubes in your arm (haemodialysis). You may need to have this done for several hours, 3 or more times a week.

Having a permanent tube in your stomach area to filter your blood (peritoneal dialysis) may mean you can do kidney machine treatments at home.

The potential benefits of dialysis include the possibility of living longer, feeling better and being more mentally alert. It’s important to understand that dialysis cannot reverse the underlying medical problem that’s caused the kidneys to stop functioning properly. For many people, especially for older and sicker people, dialysis is likely to be a lifelong treatment.

Risks of kidney machine dialysis

• Treatment can take up a lot of time
• You may need to travel for treatment
• You may still feel sick or tired, even with the treatment
• You may need to change what you eat and drink
• Inserting the tubes can cause pain or discomfort

Other life prolonging treatment

Other common life-prolonging treatments include chemotherapy, radiotherapy and/or immunotherapy for cancer, and blood transfusions, antibiotics and surgery.

Treatment options depend on your particular medical condition. You may also want to decide whether you'd prefer to be admitted to hospital or to remain at home in certain circumstances. It may not always be possible to meet all of a person's requests. But if you make your preferences known, your doctor and family will try to uphold them.

Palliative and end of life care

Palliative care is person and family-centred care provided for a person with a life-limiting illness. For some people, palliative care may be beneficial from the time of diagnosis. Palliative care can be provided alongside treatments given by other doctors.

It’s primary goal is to improve a person’s quality of life by helping them live their life as fully and as comfortably as possible. Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Palliative care may include medications such as pain relief and sedation. It can also include things like the environment you want, such as your surroundings or music. This includes who you want to be there to support you through the dying process. Family and carers can also receive practical and emotional support.

In Australia, providing generalist palliative care is an expectation of all health and aged care health care providers. People with more complex needs should be able to access care provided by specialist palliative care services comprising multidisciplinary teams with specialised skills, competencies, experience, and training in palliative care.

You can learn more about palliative care on the Palliative Care Australia website. You can also access information from your state or territory based palliative care peak organisation for support and information closer to home.

Other end of life options

There are some other options which you may consider in relation to the end of life. Whilst you can talk about and document these requests, there are some specific things to consider if you would like these wishes carried out as they involve separate legal processes.

Organ and tissue donation

Donating organs and tissue can save people’s lives. The decision to donate organs and tissue is an act of extraordinary generosity, and it may be a meaningful legacy providing comfort to your loved ones. In Australia you can register as an organ donor through MyGov or the DonateLife website. This tells your family, and health professionals that you want to be a donor. You can record your choice in your advance care plan, but if you haven’t been legally registered, your family can override your wishes.

Learn more about organ and tissue donation.

Voluntary assisted dying (VAD)

Voluntary assisted dying is a process where a person with a terminal illness, disease or medical condition is provided with assistance by a health practitioner to end their life. VAD is legal in all of Australia’s states and territories except the Northern Territory. VAD is different from palliative care and end-of-life care. People can continue treatment for an illness while receiving palliative care and accessing VAD. For some people, VAD may offer control and autonomy over their illness experience.

There are strict eligibility criteria and multi-step processes required to access VAD. These are different in each state and territory, but they always include that the person must have capacity to make their own decision to request VAD and continue to have capacity at the time that the medication is administered. This means:

• VAD can’t be requested through an advance care planning document such an advance care directive
• the request for voluntary assisted dying can’t be made on someone else’s behalf. It must come from the person who wishes to access voluntary assisted dying.

Find out more about voluntary assisted dying in your state or territory.

Read our factsheet on Navigating the topic of Voluntary Assisted Dying in Advance Care Planning Conversations.

• Voluntary Assisted Dying in Australia – Guiding Principles for those providing care to people living with a life-limiting illness - Palliative Care Australia
• Voluntary assisted dying provider factsheet – The role of aged care providers

Futile or non-beneficial treatment

Not every treatment leads to meaningful improvement in quality of life. Doctors have a role in anticipating and recognising when a treatment would be more burdensome than beneficial and may recommend a change in focus to comfort and dignity. Doctors may have conversations with the person and/or their substitute decision-maker about current needs, goals and wishes and how these align to treatment decisions if they became more unwell.

These discussions may also lead to the development of a Goals of Care document by the doctor. This clinical document may include medical orders about whether or not to provide cardiopulmonary resuscitation and other life-prolonging treatments. These orders may not be the same as a person’s instructions in their advance care directive as the Goals of Care document considers changes in the person’s condition, what is of benefit to the person and good medical practice.

For further information see - Recognising-Medical-Futility-and-Navigating-End-of-Life-Care