"In our particular case…firstly we consulted with the professionals that we felt were relevant because we wanted their opinion. I think we probably brought something of a decision in our heads from the years of caring for her. But we didn't want to make that decision without being informed, we wanted to make an informed decision"
Usually families and the medical team (doctors and nurses) make decisions together about life support. However, sometimes doctors make the final decision about life support. Sometimes families will decide. This depends on the type of decision, as well as on what families want. You can let your child's doctor know how you would prefer decisions to be made (See Shared decision-making).
There are different ways that decisions are made about life support. It is important that you let the doctors know how much you want to be involved in the decisions that are made.
Some parents have very clear views about which decision is right for their child and do not feel the need for guidance from others. In other situations, doctors will make the final decision. For example, this might be because a treatment is very unlikely to work (see Futility), or because parents do not wish to make a decision about treatment. In these situations doctors will still take into account parents' views about treatment. Most times, though, the decision is shared between families and the medical team.
Parents often have mixed feelings about who should make decisions. One part of them feels like they want to be involved in decisions, but another part feels afraid of taking on responsibility for decisions. If you have those mixed feelings, that is very normal at this time. Shared decision-making means that your views are important, but that you do not have to make the decision on your own.
For some families (for example, from an Aboriginal or Torres Strait Islander background) it may be important for other members of the wider family or community to be involved in decisions. If that is important for you, let the doctors and nurses know so that they can respect this. Where family members are far away and cannot travel, it may be possible for them to speak with the doctors on the telephone.
It can be hard to talk with doctors about how you prefer to make decisions. See Phrases that may be helpful for some ideas. You could ask an Aboriginal Liaison Officer, or hospital chaplain to help explain to the doctors how decisions are made in your culture or religion.
"Because clearly we're not the medical experts, we're the parent experts, so we had our parent view of wanting to make the decision, but not without significant input… [we] sought the counsel of other people who knew what they were talking about…I think that helped us to make a decision that we were comfortable with"
Shared decision-making means that medical teams and families work together to try to work out how best to care for a child. Families and doctors share information, expertise and responsibility for decisions.
Research studies with families who have made life support decisions have shown that most parents would like to share the decisions with doctors. These families want to be part of decisions, but they often don't want to make them on their own.
There are different things that are important for decisions about life support. This includes both medical facts and parents' values. Doctors are experts in treatments, how they work, whether they are likely to work, what problems they can cause. They will do their best to help you understand the facts that affect your child. But parents' views about the value of life, quality of life, and dying are also important when making decisions. As parents, you are valued as the experts about your child. For an older child you will also know best what your child feels about medical treatment, and may be able to help doctors understand what your child would choose. When doctors and parents share decision-making they bring these different types of expertise together to determine how best to look after a child.
For many families, this may be the first time that they have ever had to think about life support or about decisions for someone who may be dying. It can be very hard to know what is the right thing to do, or even what you want to happen. Doctors and nurses will try to help you to work out what is important for you and for your child. You may find that you would like some advice about what to do and it is OK to ask those who are caring for your child what they would recommend. You may also find it helpful to speak to other people, for example family members, community elders, social workers, hospital chaplains or members of your religion before you make a decision.
"There are so, so many layers and I think a decision like that needs to be made with as much input from both sides as possible, without either side saying I don't want to hear that or overlooking things. Really giving each profession and families [space] and having as many opportunities to meet face to face as often as it takes to get the full [picture]."
- What information do you need from me to work out what would be best for my child?
- I am not sure what to do. Can you give me any advice?
- Is there anyone else I can talk to about the decision?
I have a clear idea about what I want for my child (but I want to know what you think about it too).
I need some help with this decision, I can't make it on my own.
This is too hard for me. I would like you to make the decision about life support. I still want to be told what is going on (or) I would prefer not to be told what is going on every step of the way.
You are not alone. Making a decision about life support can seem like an enormous burden to carry. Let your child's doctor know how you are feeling. Doctors and nurses are there to support you as well as your child, and are used to working with families to try to determine together the best course of action (see Shared Decision-making).
If you prefer not to decide, the doctors may be able to make the decision about life support for your child.
For many this is the most difficult question that they have ever faced. Families can feel overwhelmed by decisions about life support. Some feel that they do not want to take responsibility for having decided to stop life support - even if that would be best for their child. In that situation, some families would prefer doctors to make the decision for them.
If you are feeling this way, let your child's doctor know. It is OK to ask doctors to make the decision. Tell them how much you would like to be involved as well as what is important for your family so that they can make the best decision for your child.
It is OK to ask your child's doctor for advice. You may find it helpful though, to ask them to explain why they would make a particular decision. Then you can work out whether you feel the same way.
Sometimes doctors and nurses are unsure what to say when they are asked what they would do. Although they may have supported other families in your situation, they will probably never have faced this decision themselves. It is important to recognise that doctors and nurses probably have a different background from you and your family. They may be at a different stage of life and have different amounts of support from their own family and friends. They may have different religious and ethical views. This means that what would be right for them may not be right for you.
It can be very helpful to ask your child's doctor for advice and guidance. Even if you find that you have different values from doctors and nurses, discussing decisions with them may help you to work out what your own views are and what would be right for your family.