It is uncommon for a child to die. But when children do die after a period of illness, it is very common for parents and doctors to have made decisions about life support.
When parents face decisions about life support, they sometimes feel alone and frightened by something that they have never heard of or thought about. But many other parents have also faced these questions.
In Australian hospitals, 8 or 9 times out of 10 when a child dies in the intensive care unit or elsewhere in the hospital parents and doctors have had to make a decision about life support.
The figures are similar in other parts of the world, for example in hospitals in the UK, Northern Europe and the United States.
There are different reasons why you may be reading this book.
You might have been given it by your child's doctors and nurses because they have started talking with you about life support for your child, and whether it is a good idea or not.
You might have found it by yourself because you wanted to find out more about questions that you could face for your child. Or perhaps you are worried about what is happening with your child, and don't know where to look for help.
You may be reading this book because you have been here, and have faced difficult decisions about life support for your child in the past.
Or perhaps you do not have to face these decisions yourself, but would like to know more about how to support people who are facing them, perhaps your friends or family, perhaps patients or clients that you are caring for.
If any of these apply, we hope that you will find something useful here.
This handbook is designed to support parents who are facing decisions about
stopping or not starting life support treatment for their child. It contains general information, and frequently asked questions and answers that we hope will be useful. Some parts may relate to your situation and your experience. Others may be things that you have never thought of.
Every child and family is unique. Talk to the doctors and nurses who are caring for your child. Ask them about the things that you read here, and whether they are relevant for you.
You may like to start here and work through the different parts of the handbook.
But you can also turn directly to questions that you are facing or are worrying you. You can dip in and out and read the bits that are most relevant.
There is quite a lot of information here. Take your time with reading and stop if you need to. These are difficult things to think about. If you find it upsetting to read things here, take a break. If you can, talk about the things that are upsetting or worrying with your family, or with those who are caring for your child.
You may like to write some things down as you read. Take a note of things that you would like to ask your child's doctors or nurses. If the things that you are reading don't make sense, or don't fit with what you have been told, ask your doctors if they can explain.
Some families may find it hard to understand why doctors are asking them to make decisions about life support. Although in countries like Australia, parents' views are very important in end of life decisions, in other cultures this is not usually the case. In some countries doctors make all the decisions about life support.
If you come from a culture or country where families do not usually make decisions like this, you may prefer it if the doctors decide based on what they think is best for your child. See What if I don't want to decide?
Other families may believe that deciding about life support is not appropriate. For example, in the Quran it is written:
"-It is not given to any soul to die, save by the leave of God, at an appointed time"
The practical difficulty arises in knowing when the appointed time has come for a child. Families who feel this way may find that their beliefs are respected by a wider consultation or discussion process involving medical and religious advisers and/or the extended family. Doctors are not asking you to make a decision to end your child's life. However, medical treatment may be artificially extending or prolonging the dying process for a child. The aim of discussion is then an attempt to recognise when death, as a part of life, is occurring and when the focus should be on a child's comfort.
See Futile treatment and the dying process.
See also Religion, culture and life support
You may be reading this book because you are worried about what is happening for your child, but none of the doctors have talked to you about stopping or not starting life support treatment.
Starting a conversation about life support can be incredibly hard and scary. There are some phrases below that you might find helpful. Even just showing your doctor this book may be enough to help them understand that you need to talk.
- I am worried about what is happening for my child. Are we doing the right thing?
- Is my child going to make it? What is the chance that they will die?
- Is it time to talk about life support and whether it is right for my child? Is there someone I can talk to about this?
- It is very important to me that my child is comfortable. Are the treatments they are getting causing them to suffer without much benefit?
- I would like to talk about comfort care. Can we ask a palliative care specialist to see my child?
- I am worried about my child's quality of life. Can we talk about this?
Sometimes things aren't as bad as they look, and doctors are still hopeful that a child will recover, or are not sure what will happen in your child's case. If you tell the doctors what you are worried about they may be able to reassure you.
Other times doctors are worried too, but they may not have talked to you about it because they don't want to upset you, or because they don't know how to. Doctors and nurses often find these conversations scary too. They may not want to talk about dying because it makes them feel sad or uncomfortable. Sometimes, when parents make the first step it becomes easier for doctors and nurses to talk about life support and decisions.
Occasionally, parents are ready, but doctors and nurses are not ready to talk about stopping life support treatment. That can be because the doctors have a different view from you about life support. See What should I do if I don't agree with my child's doctors about life support treatment?
Questions about life support are generally raised when a child is facing a serious health condition that is likely to shorten their life. In thinking about life support, it may help to think through what is most important to you with regard to your child's care.
How do you want them to spend the last hours, days, weeks of their life?
Where do you want them to be cared for?
What experiences do you want them to have?
As a parent you may feel torn by a terrible dilemma. On the one hand, you want your child to live as long as possible. On the other, you want to avoid unnecessary suffering. Thinking through the 'bigger picture' can help you make decisions about things like life support.
You may feel overloaded by all the information that you have been given, and by all the different decisions that it seems the doctors are asking you to make. But in reality you probably don't have make all of these decisions right now.
If you are feeling this way, you could ask your child's doctor "What is the most important thing for me to think about? What decision do I have to make today (or first)?"
There are some practical things that can help.
- Your child's doctors will probably find a quiet place, without interruptions, to talk to you about what is happening for your child. If they don't, ask them if they can find one.
- You may find it helpful to ask a friend or family member to be with you when you talk to the doctors. That can help in remembering all the things that the doctors have said. See also Who makes the final decision about life support treatment?
- Ask the doctors to write down the most important things for you to remember. Before you see the doctors write down questions that you would like to ask them. It is OK to ask doctors to repeat things that you don't remember or aren't sure about.
- You may find it helpful to have several meetings with the doctors. That can be in one day with breaks, in between or over several days, or over a longer period of time. This can give you time to take in information, to think about it, and to think of questions that you would like to ask. Most of the time when families make end of life decisions for their child, they have a number of meetings with doctors and nurses to work out what to do. Sometimes, though, if a child is very sick, there isn't a lot of time. See Is there a rush to make a decision? Do I need to decide now?
Sometimes families find that they get different information from different doctors. There can be different specialists involved in a child's care (for example intensive care specialists, cancer specialists, heart specialists, general paediatricians). Within a specialist team there are the consultants, but also the more junior doctors who work with them, including the registrars and residents. Nurses and others caring for the child may also have different views. That can make it very hard to know who to listen to. If you have a health professional who you trust (particularly if they know your child and your family well) ask them what they think. You could ask them if they can be there when you speak to the specialists. See What should I do if the doctors don't agree about life support treatment?
It can be hard for parents to make sense of all the medical information that doctors give them. If you are having trouble understanding what the doctors are saying it is OK to ask them to repeat it, to use simpler words, or to draw pictures if that would help.
Sometimes it helps to have someone sit in with you when you are talking to doctors. For example, you could ask a friend, or family member, social worker or Aboriginal Liaison Officer to help. They can sometimes help to speak up for you, or to explain things that aren't making sense.
If English is not your first language, don't be afraid to ask for an interpreter. Even if your English is pretty good, you may find it helps to have medical information explained to you in your own language.
Making decisions about life support can be very stressful. Don't be afraid to ask for help if you need it.
Parents often spend many hours at their child's bedside when their child is very seriously ill , and may not have time to eat properly, or to sleep. If they have other children, they may spend much time travelling between home and the hospital, with little or no time for themselves. Parents sometimes run out of money because they cannot collect payments, or cannot work.
It is important at this time to make sure that you look after yourself as well as your family. If you are hungry or lacking in sleep it will be harder for you to make the best decisions for your child. Social workers, Aboriginal liaison officers, and other staff are employed to support you and your family. They may be able to help with accommodation, food, transport and emergency financial support.
It is normal in this situation to feel stressed and sad. If you are finding these feelings are very strong and are making it difficult to look after your child and yourself, you may find it helpful to have some extra help. There is often counselling available through the hospital or through the Palliative Care Team. Alternatively, you could speak to your own doctor.
Some of the words in this book can refer to bigger groups of people.
In this handbook we will refer to 'doctors' and 'doctors and nurses' to refer to the medical staff caring for your child. There are other health professionals who are often involved in caring for seriously ill children. This includes physician assistants, nurse practitioners, respiratory therapists, chaplains, social workers, physiotherapists, occupational therapists, clinical psychologists, music therapists etc. These other members of the team are often an important source of support for families of children who are very sick or dying.
We will refer to 'parents' and 'families' to refer to those close to the child. Children who are seriously ill come from all different backgrounds. They may have large families or a single carer. People who are not related by blood to the child may be very important in their lives, for example foster parents. For some cultures, it is important that elders or other members of a community are involved in discussions about life support.
For medical terms see Are there different types of life support treatment?