"how do you know when your child has had enough? … she said you'll know when the time is right. And that day I knew it was right."
Doctors do not want to stop treating your child. But you and the doctors may decide that some treatments are not right for your child and should be stopped. Then the important thing is to focus on which treatments are helpful.
When doctors and nurses talk about "stopping treatment" parents sometimes worry that this means that doctors will stop looking after their child. But that is not going to happen.
The question is not whether we should care for a child. As health professionals and as parents we will always care for the child. The question is how we can best care for them. That may mean stopping some treatments. But it may also mean that other types of treatment can start or be increased - for example treatments that are designed to keep the child free from pain.
These decisions are about changing the focus or aim of treatment. When what we are doing is not working, we need to decide whether there are other ways to reach our goal. If there are no other ways, we need to rethink that goal. Sometimes we need to focus on what we can do, rather than on things that we cannot do.
Doctors and nurses are always carefully deciding which treatments to use. If a child has an infection, they choose whether or not to use antibiotics, or which antibiotics to use. If they start antibiotics, they always need to know when to stop those antibiotics. Hopefully that is when the child has got better. Sometimes it will be because the antibiotics aren't working. Other times it will be because the treatment is harmful with bad side effects.
Life support (for example breathing machines or heart massage) is just another sort of medical treatment. Like antibiotics, it is important for doctors and nurses to know when to start life support. It will often be helpful. But sometimes, like with antibiotics, it isn't working, or is causing bad side effects. It is important to know when life support treatment shouldn't be started or should stop.
Yes. There are different reasons why doctors and parents may decide to stop or not start life support treatments. Sometimes a medical treatment cannot help a child. Other times a medical treatment causes more harm than good.
These different reasons affect how decisions are made.
Life support may not be working
Some children who are very sick do not respond to treatment. Despite powerful medicines, and despite life support machines, the child may be getting sicker and sicker. Doctors and nurses caring for the child may recognize that there are no more life-saving treatments that can be tried. In that situation it is often only a matter of minutes or hours or days before the child will die. It is a question of how best to care for the child over their short remaining time. (See Futile treatment and the dying process)
Life support may not be able to save the child for long
Sometimes life support may be able to keep a child alive for a time, but cannot cure them of a very serious underlying condition. The child's health condition means that if they survive now it will only be for a relatively short time, perhaps weeks or months. For example, this might be because the child has a form of cancer that hasn't responded to treatment, or it might be because their lungs are very damaged. In this situation parents and doctors may decide to provide life support treatment, or they may not. This will often depend on how unpleasant treatment is for the child, and whether it causes side effects.
Treatment does more harm than good because of side effects
Many treatments have side effects. Taking medicine may cause you to feel sick or in pain. Then you need to decide if there is any alternative, and whether it is worth taking the medicine. Life saving treatments can also have side effects. For example having a breathing tube in your mouth can be very uncomfortable, and can make people feel as if they are choking. Tests and procedures in the intensive care unit can mean many needles for a child. If life saving treatment would be very unpleasant for the child and would not bring a great benefit to them, it would sometimes not be the right thing to do for them.
Life saving treatment does more harm than good because of a child's health condition
Some children have very serious health conditions that affect all parts of their lives. Those conditions stop the child from enjoying most or all of the things that children are normally able to enjoy. For example, the child may be in pain much of the time. Or they may be having epileptic seizures that can't be controlled. Or they may be unable to move and unable to tell someone if they are uncomfortable. Doctors and nurses will do all that they can to help children in these situations, but the child's life may still be very difficult.
When adults have severe health conditions like this they will often decide that they do not want life support treatment like breathing machines or CPR. Parents of children in this situation may also decide that such treatments would cause more harm than good. (See Quality of life)
|"we were told there was no cure but he could be kept alive longer…but it would not be a way that would be comfortable for Eric, and it would be very invasive…So we just decided, we wanted to do it the gentle way…And hope that we can do that for as long as possible"
Yes. The basic principle is that doctors should provide treatment that is in the best interests of a child. If life support treatment is not in a child's best interests, because it would not help them, or because it would do more harm than good, it may be against the law to provide the treatment.
No. Legal and ethical experts are very clear that stopping life support treatment
is not euthanasia. In most countries around the world it is lawful to stop life support treatment, but it is illegal to actively end a patient's life (euthanasia).
The word 'euthanasia' comes from an ancient Greek word meaning "good death". It is used in different ways, but most commonly it refers to deliberate steps taken to end the life of a patient, for example giving medicines with the aim to stop a patient from breathing or to stop their heart. There are a few countries where euthanasia is legal, though usually only in very restricted circumstances. Euthanasia is illegal in Australia. However, in Australia and in almost all countries around the world, it is lawful for doctors to decide to stop or not start life support treatment if that treatment would not benefit the child or would do more harm than good.
Doctors may use the word 'futile' to describe treatment that they feel should not be provided because it is very unlikely to work.
All medical treatment has a goal or an aim. For example, the goal of an antibiotic is to treat an infection. The goal of blood pressure tablets is to prevent a patient from having heart problems or a stroke. There has to be a good reason to use medical treatment, otherwise doctors would not use it.
Sometimes doctors identify that a treatment can't achieve its goal. The doctor will then usually decide not to provide that treatment. To use the same example, antibiotics do not have any effect on virus infections, only on bacteria. If the doctor is sure that the patient does not have a bacterial infection there is no point in providing antibiotics. Antibiotics cannot cure a virus, they cannot achieve their goal of fixing the infection
It is the same for life support treatment. The aim of life support treatment is to keep a patient alive. The bigger aim is to help a patient get through their illness, and back to as normal a life as possible. If it seems like life support treatment cannot actually keep a patient alive, or cannot get them through their illness, doctors may feel that there is no point in providing that treatment.
There are different words that are used to describe treatment in this situation. Treatment might be called
- Not beneficial
- Not indicated
The usual reason that doctors call treatment futile is because it is not working, or is not going to work. (See Reasons for stopping life support treatment). But doctors may also call treatment futile if it can't save the child for long, or if they believe it is going to cause more harm than good.
When a child is extremely ill, and treatment is not going to be able to get them through their illness, doctors and parents usually are in agreement that further life support treatment would be futile. Sometimes though, people do not agree about whether treatment is futile. See Agreement and disagreement
In general, doctors are not legally required to provide treatment that they feel would be futile. (See legal questions) However, doctors will almost always try to reach agreement with families before making decisions to stop life support treatment.
One reason why life support treatment might seem futile is because the slowing down and stopping of breathing and stopping of the heart are a normal part of the dying process.
When a child is dying, their body systems will start to shut down. Their breathing and heart beat will slow and then stop. If doctors use medicine and machines to keep the lungs and the heart going sometimes all they do is delay the natural process and add to the child's suffering. Even if the child survives this episode, they are not likely to survive long.
- What is the reason for not using life support treatment?
- What makes you think that life support treatment will not work for my child?
- Is there a chance that treatment could work? If so how big or small is that chance?
- What treatment would you stop, and what would you keep going with?
- Do you think my child is suffering or in pain because of the treatment?
- Do you think the life support treatment is helping my child in any way?
- What would happen to my child if the treatment were stopped? How would it feel? Would they be in any pain?
- Would my child die if treatment were stopped? Would it happen straight away? How long would they live for?
- How will you care for my child if life support is not used?
See also Disagreements, for some things you could do if you do not agree with doctors