In this section
Doctors do not always agree with each other about what is likely to happen for the child, or about what treatment should be provided. It is important, if you can, to find a doctor who you trust. You may find it helpful to ask for a second opinion, or to ask for a review by the hospital ethics committee.
There are several reasons why doctors do not agree. Sometimes doctors interpret evidence about a child's illness and outcome differently. The evidence itself may not be clear. Differences of opinion are often a sign that it is uncertain what the future holds for a child. Doctors may also have different experience of past patients with an illness. They are likely to have cared for different children in the past, and those past experiences, good and bad, influence how doctors think about future cases. Finally, doctors have their own personal background, values and beliefs. These personal factors can also influence how they think about decisions for a child and what they think should happen. It is perhaps not surprising that people have different views about life support treatment. These are often questions that do not have a right and wrong answer.
Parents find it difficult or distressing when doctors disagree about what should happen for their child. This is understandable, because it can be hard to know who has the right answer, and who should be believed. It makes it harder for parents to know what to do.
One thing that could be helpful would be to tell the doctors that you have been told different things. Sometimes they may not realise that their colleagues have a different view or have given you different information. Often differences are not as big as they seem, and it may become clear that actually the doctors are largely in agreement. You could ask for a meeting with all of your child's doctors together.
If disagreement persists, and you do not know who has the right answer for your child you might consider asking for a second opinion from another specialist. An outside point of view could be helpful. You may already know the name of another doctor with the right experience. But if you do not, your child's doctors should be able to help provide the name of someone else.
Another option in some hospitals would be to ask for the input of the hospital clinical ethics committee. One of the roles of the ethics committee can be to help when doctors disagree about what should happen for a patient. They can listen to the different points of view of those caring for the child.
It is very important to tell the doctors your views about life support treatment, and what you would like to happen for your child. Parents' views are important. Doctors will do their best to respect your views and may be able to do what you are requesting.
If you are finding it difficult to explain your wishes to the doctors you can ask for someone else to come with you, for example a family member or friend, Aboriginal liaison officer or social worker. If English is not your first language, and it would be helpful, you can ask for an interpreter.
If doctors are not able or willing to follow your wishes about treatment you might consider asking for a second opinion or for review by a hospital ethics committee. If you have tried those things and still have disagreements with the doctors about what would be best for your child you may like to seek legal advice about what other options you have available.
Families sometimes disagree with doctors about what would be best for their child. The family may want to continue life support treatment, but the doctors do not. Or the family may want to stop life support, but the doctors are not happy to do that.
People can have different views about whether the chance of the treatment working is too small, or is high enough to be worth trying.
Or, disagreements can come about because different people have different views about the goals of treatment. Doctors may feel that the goal of treatment is cure, and so treatment would be futile because a child's underlying illness is incurable. Other doctors or parents may feel that treatment would not be futile because the goal of treatment is to keep the child alive for a short while longer.
There can be different reasons for these disagreements. The most common reason, though, is that it is very difficult for people to accept that a child is dying.
We are used to the idea of people dying in old age. As parents we expect our children to outlive us. We do not expect or accept that they might die before us. It is natural for parents to want to fight for their children, to hold on to them, and to resist any suggestion that they might die.
Usually disagreements between parents and doctors about life support treatment can be resolved. The most important thing is to keep talking. Both parties simply want to do what is best for the child, and time usually makes it possible for agreement to be reached. Doctors may come to accept parents' wishes, or parents may come to accept doctors' views. Sometimes compromise is possible.
Where agreement is not possible you may find it helpful to seek a second opinion from another specialist. An outside point of view could be helpful. You may already know the name of another doctor with the right experience. But if you do not, your child's doctors should be able to help provide the name of someone else.
Another option in some hospitals would be to ask for the input of the hospital clinical ethics committee or a similar group. Many hospitals now have a group of people who are available to help with problems relating to life support treatment and other ethical problems. The committee usually includes some doctors and nurses and other health professionals, but also others, for example a chaplain, a lawyer, an ethics expert, and a patient representative. One of the roles of the ethics committee can be to help when doctors and families disagree about what should happen for a patient. They can listen to the different points of view of those caring for the child including different health professionals and the parents.
Rarely, disagreements between families and doctors persist and cannot be resolved. If you are able to find another doctor who is prepared to provide the treatment that you are requesting for your child you may be able to organise for your child's care to be transferred to that doctor. You may like to seek legal advice if doctors are making decisions that you feel are not best for the child. Alternatively, doctors might seek legal advice if they feel that continuing treatment would be harmful for the child. Courts in Australia and the UK in the past have not ordered doctors to provide treatment that they believe would be futile. However, sometimes courts have supported parents when there has been disagreement.
It is common for parents to find that they respond in different ways to news about a child's serious illness. Talk to the doctors and nurses, the social workers or chaplains about your feelings; they know how difficult this is.
Couples sometimes disagree. That happens all the time, for all sorts of issues, big and small. But it can be very difficult when it is about things like medical treatment for a child. Parents may have different emotional responses, for example one might be angry, while the other is sad. It is not unusual for one parent to be ready to talk about stopping life support, while the other parent is still hoping for recovery. Parents can argue or become distant with each other. Sometimes old tensions or disagreements flare up. Couples who have separated, perhaps who have new partners, may find it particularly hard to reach agreement.
Mostly, with time and patience, parents come to a shared understanding about what would be best for their child. Try, if you can, to find some quiet time to talk with each other about your feelings, and about what is happening for your child. If you are having a difficult time talking with your partner, the hospital social workers or psychologists or a community support worker may be able to help.
This can be an incredibly difficult and stressful time for parents. Be patient with yourselves if you can.
It is pretty common for family members to disagree about life support. This can cause extra stress for parents, and make it hard to know what to do.
If this is happening, talk to the doctors and nurses looking after your child. Their first priority is to care for you and for your child. Sometimes they can help by talking with other members of the family who have different views. Other times they can help you with ways to deal with disagreement in the family.
One important step for parents when they are facing life support decisions is how much to involve other people. See What should I tell other people?. Parents can gain tremendous support from other members of their family. Other times, involving others only adds extra stress. You do not need to involve other members of the family if you do not want to. Those who are closest to the child are the ones who need to be part of discussions with doctors and nurses. Other family members might only become involved after a decision has been made.
The news that a child is dying is very shocking. It takes everyone different amounts of time to come to terms with that news. Sometimes some members of the family still do not want to believe it, while others have accepted it and are ready for the next stage. If that is the case it can just be that extra time is needed for everyone to agree about what should happen.
It can be very stressful for families facing the reality that their child might die. Different people respond to the stress in different ways. The stress can stir up old disagreements or differences in a couple or in a family. These old disagreements are probably not going to be settled right now. It sometimes helps for everyone to remember what is most important. The important thing is how we can best look after the child. We need to make sure that the child does not suffer because adults are arguing.
Your child's doctors may be happy to talk with other members of your family.
Some of the phrases below might be helpful: