The frequently asked questions for the caring decisions.
‘Life support treatment’ (or ‘life support’) is any medical treatment or intervention that is used to keep a child alive.
‘Comfort treatment’ is also called ‘palliative care.’ It refers to medicines or other care that makes sure a child is comfortable and not in pain.
Yes. In fact it is very common with children to make medical treatment aim at cure, life support treatment and comfort treatment, all at the same time. However, when a medical treatment can’t cure, and life support treatment isn’t working, comfort treatment becomes the most important thing to provide.
When parents face decisions about life support treatment, they sometimes feel alone and frightened because it’s something that they have never heard of or thought about. But many other parents have faced these decisions before.
Most families with a seriously ill child, that is not expected to live, will have to make a decision about life support. In the United States, most of the time, the decisions about life support are made in a hospital setting.
Yes. There are different reasons why doctors and parents may decide to stop life support treatments. Some reason may include the following.
Yes. It depends on the type of treatment as well as on the reason for stopping treatment. When you are talking with your child’s doctors and nurses about life support, you can work out together which treatments will be provided and which will not. Comfort treatments will always be provided if needed.
Usually these decisions are made by the family and doctors and nurses together.
However, sometimes doctors make the final decision and sometimes families will decide. This depends on the type of decisions, as well as what families want.
For some families, it may be important for other members of the wider family or community to be involved in decisions.
You can let your child’s doctor know how you would prefer decisions to be made.
Resuscitation (CPR) includes artificial breathing and heart massage. Like other life support treatments, CPR may not be helpful in some situations, or may do more harm than good.
When doctors and families have decided that CPR isn’t the right thing for a child they will write that down so that other doctors and nurses know not to do this. This is sometimes called a Do-Not-Resuscitate” (DNR) or “allow natural death” (AND) order.
No. If life support is not helpful, or will do more harm than good, the best and most loving decision is to make sure that a child is kept comfortable.
Not unless you and the doctors have decided to stop them.
Sometimes when doctors talk to families about life support treatment, parents reply that they want “everything to be done.”
It is natural to feel this way. The doctors and nurses will do everything they can to help your child. But some treatments are not helpful. It is really important that doctors avoid doing things that would harm your child.
Yes. If your culture or religion affects the way you think about life support, talk to your child’s doctor. They want to support you and your family to make the best decision for your child.
For example, if it is important to you that someone outside your immediate family is part of the decision, let the doctors know.
It is often difficult to be sure what will happen for a child, but sometimes doctors and nurses have a high level of certainty about a child’s future.
The medical team caring for your child will be able to give you an idea of what is most likely to happen, based on the medical facts available and their experience of caring for other children in similar situations.
‘Quality of life’ is a measure of the balance of good things and bad things in someone’s life. For example, pleasure, comfort, happiness or satisfaction balanced against pain, discomfort, frustration or sadness.
Yes. It is important to assess a child’s quality of life when we are making decisions about their medical treatment. All medical treatment has risks and benefits. Sometimes treatment can do more harm than good. Doctors need to consider the impact of treatment on a child’s quality of life.
Parents’ views are important. Tell the doctors your views about life support treatment, and what you would like to happen for your child. Doctors will do their best to respect your views and may be able to follow your wishes.
If you find it difficult to explain your wishes to the doctors you can ask someone else to come with you; a family member, friend or social worker. If English is not your first language, you can ask for an interpreter if it would help.
If doctors are not able or willing to follow your wishes about treatment, you might consider asking for a second opinion or for an ethics consultation. If you have tried those options and still cannot reach an agreement with the physicians regarding what would be best for your child, you may wish to seek legal advice about other available options.
You may also request an ethics consultation: ethics2@integrisok.com.
