In this section
"as much as a doctor can tell you an outcome of what's going to ultimately happen, they can never describe what it's going to be like for you…every person, individually reacts… so independently to a condition or illness"
"There's never a perfect decision. What's the best decision given everything?"
It is often difficult to predict for sure what will happen for a child, but sometimes doctors and nurses have a high level of certainty about a child's prospects.
The doctors and nurses 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.
There are few things in life that are completely certain. We often can't tell exactly what will happen. However, there are some things that we can be very sure about. We can be most sure about things that we have experienced many times, or that behave in a very consistent way.
Although we like to think that medicine is an exact science unfortunately it is not. For many children who are critically ill, doctors are not able to say for sure what is going to happen. But there are other situations where doctors are very confident of a child's outcome. Sometimes doctors can be confident about some things but not everything. For example, they may be certain that a patient is going to die, but they may be uncertain how long they have to live, whether that is a matter of hours or days or even weeks.
Doctors make predictions about what is going to happen for a child based on different pieces of evidence. It is easiest for them to be certain about what will happen for a child when all those pieces of evidence fit together. Doctors and nurses use published scientific evidence about patients with similar problems, as well as their personal experience of similar cases. They are likely to be more certain about what is going to happen where there is a lot of evidence from published scientific papers about children with similar problems, or where they have personally cared for a number of children in a similar situation.
Doctors sometimes disagree about what is going to happen. Parents can find this disagreement confusing or unsettling. Often disagreement comes about because the evidence is not clear-cut. It can also be because doctors will have cared for different children in the past.
You may find it helpful to speak to more than one doctor or nurse. A second opinion can be useful to confirm that the information that you are being given is correct.
It is difficult to make decisions when the outcome is uncertain. However, sometimes we have no choice. Most of the important decisions that we make in life are in situations where we can't be completely certain what will happen. We have to make the best decision that we can.
Here are some questions that may be helpful for you to consider.
It can be difficult to make decisions about life saving treatment even when there is complete certainty about what will happen for the patient. But when it is uncertain what will happen, patients and families often find it even more difficult to know what to do.
But, if we think about it, we make decisions all the time when we are uncertain what will happen. Whether we are buying a house, choosing a school for our children, changing a job, choosing a partner, we can never be sure which choice is the right one, or what will happen if we make that choice. We have to make the best decision that we can in the circumstances.
Everyone makes decisions in their own way. We use our head and our heart to help us decide. Our head weighs up the pros and cons of different options. Our heart tells us which feels like the right choice for us at the time. Some people are very logical about decisions and try to think them through slowly and carefully. Other people feel their way through to a decision that seems right. Some people are risk takers, others are more cautious. There isn't a right way or a wrong way to make decisions.
There are different approaches to dealing with uncertainty in decisions.
Because uncertainty is difficult, it may be helpful to look for ways of being less uncertain about what is going to happen. You could ask your child's doctors or nurses for written information about their condition. You could also ask whether further tests would make it more certain what is going to happen. You could ask for a second opinion from a different doctor if that is something that would help you feel more confident in what you are being told.
However, sometimes extra information may not be helpful. There may not be any more tests that will give any extra information. Extra opinions may not make it any clearer what is going to happen.
Some people prefer to hold off on making decisions if things are uncertain. This can be a useful approach, since sometimes extra time will make it clearer whether a child is going to be able to survive, and with what further problems.(See What is a 'trial of life support treatment'?) Other times, people hold off because it is just too hard to make a decision, or they do not want to make one.
But there are possible downsides to waiting. For example, if a child is uncomfortable or in pain, waiting for extra information risks prolonging their discomfort. Sometimes waiting will not make things any clearer, and a decision will still have to be faced. There is also the possibility that if you wait for too long, you may no longer have the opportunity for making a decision. (See Is there a rush to make a decision? Do I need to decide now?)
When a child is seriously unwell parents will sometimes ask doctors what the child's chances are. It can be very difficult for doctors to know just how likely the child is to pull through. They may not be able to put a number to the outcome. But doctors may be able to tell you which outcome is most likely to happen. And sometimes that is enough to be able to decide. There are many decisions that we make where we choose the option that seems most likely to be the right one.
A different approach to decisions is to ask yourself what you are most afraid of, or what would be the worst thing to happen. For example some parents may be most worried that their child will suffer. Other parents may be most worried about stopping treatment when their child might still pull through. Still other parents may be most concerned about the possibility of their child surviving but being very severely ill or disabled. Sometimes all of these different possibilities seem equally bad. Sometimes there is no way of avoiding the thing that you are most afraid of. But other times it may be possible to work out which choice makes it least likely that this bad outcome will occur. It is also often helpful to talk about these fears with other people (for example the doctors, nurses, pastoral care workers or social workers involved, or with your family).
Although it is very important to have enough time to make difficult decisions, sometimes there isn't a lot of time. If a child is becoming sicker, there may need to be a decision about whether they go to intensive care or go on a breathing machine. If a child is very uncomfortable or in pain, we may need to decide soon about whether some treatments are doing more harm than good.
If you are facing this problem you may find it helpful to ask the following questions. The doctors and nurses caring for your child may be able to help you with them:
One reason why there may be some urgency to decide is that the options may change with time. When children are very sick in intensive care with a very worrying outlook there is the option of stopping life support treatment like the breathing machines. But this choice may only be available for a limited period of time. Sometimes, within a few days, the child's physical condition improves so that then even if parents decide to stop life support treatment, the child is likely to survive in the long term with very severe brain damage.
These decisions can be difficult because doctors cannot always be certain what future the child faces. They are also difficult, because parents have to think about the child's future quality of life (see Quality of Life). In these cases there is a chance that if treatment continues the child will survive, but this may be in a state that the child and family would find intolerable (for example very seriously disabled).
There may be an option later of stopping other forms of life support, for example artificial feeding. But this option is one that many families find difficult. (See Is it OK to stop artificial feeding?)
It may be helpful to think about the bigger picture, and what you want and don't want for your child.
When a child's outlook is worrying, particularly when doctors cannot say for sure what will happen, parents sometimes search elsewhere for answers. There is an enormous amount of information on the internet, and it can be very hard to tell what is reliable or accurate. Parents can easily find themselves overwhelmed and confused by that information.
For example, you may find stories in newspaper reports or on websites about children who survived against the odds, where doctors were proved wrong, or about new experimental treatments that have helped in rare cases. These stories can be very powerful. They speak to parents' deep longing for their child to recover. But it is often difficult to know whether these reports are relevant to your situation. There are often not enough details in newspaper reports to know exactly what the medical problem was. And there is a very real problem in that rare and unexpected recovery will often attract the attention of the media, while the more common situation does not. For example, if a child has a condition with only a 1 in a 1000 chance of recovering, we would expect that rarely a child would recover. That may end up being reported in a newspaper, but the 999 other children who died would not be reported.
If you read something on the internet that seems to relate to your child, print it off and show it to your child's doctors. If you are finding it hard to know where to turn, or what to believe, talk to your child's doctors and nurses. You can ask them if they can recommend particular websites or sources of information.