Caring Decisions

Taboo questions

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    There are some things that parents of seriously ill children may feel but they don't always talk about, because they are not sure if they should have those feelings. There are also questions that parents think about, but are too scared to ask.

    You may have experienced some of these or none of these feelings. Don't feel bad if you haven't. But if you have felt or asked some of these, you also shouldn't feel bad. You are not alone.

    For all of these feelings, it is OK to talk about them with the doctors and nurses looking after your child. It sometimes helps to have them out in the open. Doctors can reassure you that many parents experience these feelings, and give you some ways of dealing with your feelings or answering your questions.

    What if I had… If only I had…?

    Almost every parent of a seriously ill child feels guilty. "If only…" feelings often haunt parents. Even if there is nothing that could possibly have been done, many parents still feel like they are to blame.

    These feelings are natural. But most of the time, they aren't helpful. It is important to look forward, rather than looking back. Whatever happened in the past has already happened. All you can do is to concentrate on what is happening now for your child, and what is going to happen.

    When something bad happens we often try to find out why that has happened, and whether someone was to blame. Because our job as parents is to try to stop bad things happening to our children, we feel guilty if something really bad does happen, as if we haven't done our job.

    But none of us are perfect. And even if we did everything perfectly, sometimes bad things happen despite this.

    Guilty feelings sometimes make it extra hard for parents to make decisions about life support. Parents may find that they just can't think about anything else, because they keep worrying about the things that they did or didn't do in the past. Or sometimes those guilty feelings make parents overcompensate. A mother or father might think to themselves "I let my child down before, but I am not going to let them down now". That guilty feeling can lead them to strongly urge doctors to do "everything".

    Most of the time parents aren't to blame, and don't have a reason to feel so guilty. But whatever happened in the past, the important thing now is to focus on caring for your child, on what they need, and on what would be helpful for them. That might be life support treatment. If life support is helpful, your child needs you at their side. But if life support isn't helpful, your child also needs you at their side - to help make sure that they don't receive treatments that would make them uncomfortable or cause them pain.

    Is it bad to wish for my child to die?

    When a child has been seriously ill for a long time, parents may embrace their child's death with a sense of relief. But they also often feel guilty for having such feelings, and don't know if this means that they are a bad person.

    You do not have to feel bad for having these thoughts.

    These feelings are very understandable. They come from parents' love for the child, and their desire that the child's suffering isn't prolonged. It can sometimes be the best possible thing for the child's suffering to end, and for them to die. These feelings also can come from emotional and physical exhaustion, from the many long hours, days and years that the parent has cared for the child.

    Often parents have very mixed emotions at this time. (See How long do we have?) They can want the end to come, and not to come at the same time.

    Doctors and nurses know that parents have feelings like this. They probably have very similar feelings themselves. You do not need to feel guilty for feeling this way.

    Can't the doctors give my child something to put them out of their misery?

    Sometimes when a child is dying parents ask whether doctors are able to speed things up, and end the child's life. 

    Taking active steps to deliberately end the life of a child is called euthanasia, is illegal in most countries, and your doctor will not be able to do this. However, they will do everything that they can to support both you and your child.

    The experience of waiting for your child to die can be intense and difficult. Doctors cannot make this time shorter, but they can make it (somewhat) better.

    If you believe that your child is suffering or uncomfortable, it is very important that you let the doctors and nurses know. They will do everything possible to make your child comfortable.

    Often though, when parents ask this question, it is a sign of their own anguish, rather than the child's. What parents are really saying is that they can't bear the uncertainty and the distress that this dying period is causing them.

    Sometimes it helps to understand where this feeling is coming from. Your child's doctors and nurses may be able to help reassure that your child is not suffering. They will do all they can to support you at a very difficult time, and they understand when parents feel this way.

    Do doctors want to stop life support for my child because it costs too much?

    Parents sometimes worry that doctors are advising against treatment for their child because it is expensive. However, you can be reassured that doctors' and nurses' number one priority is doing what is best for your child.

    Another form of this worry is that parents sometimes feel that doctors do not want their child in intensive care because another child (perhaps without a long-term illness or disability) needs their bed. This worry is understandable. We often hear in the news about the pressure on beds in hospitals. But when doctors advise that they do not think that intensive life support treatment is a good idea it is because they honestly believe it will not help, or will do more harm than good. Their first priority is to do the best that they can to care for your child.

    Is stopping life-support treatment giving up on my child?

    Sometimes families feel like they would be 'giving up', or letting their child down if they agree to stop life support treatment.

    As parents, you will never give up on your child. Your love for them will never stop. But you may need to give up on medicine or on medical treatments that are not going to work. Doctors cannot treat every sickness. Although we find it easier to accept the death of older people, sometimes children get sick too, and doctors cannot save them.

    When parents and doctors decide to stop life support treatment for a child it is not from a lack of love. Rather it is because we love them too much. We love the child so much that we will not let them suffer for our sake. Parents desperately and deeply desire to hold on to the child for as long as possible. But our love for them also sometimes means that as painful as it is for us, we must let them go.

    Is there no hope?

    Sometimes doctors are very sure that a child is not going to get better.

    But it can be important to families not to lose hope. Even when a child is dying there can still be hope. In those circumstances we need to change what it is that we are hoping for.

    Parents sometimes ask their child's doctor whether there is 'any hope'? Parents want to hold on to the chance, however small, that things will be OK, and that their child will recover. Hope is a very strong, very basic human emotion. That hope can be important to families to help them cope with an extremely difficult situation.

    Doctors who are looking after very sick children often can't be 100% sure what will happen. (See Uncertainty) They may not be able to say for certain that a child will not get better. Sometimes the doctors and nurses also want to hold on to the hope that things will turn out OK. They will try to be hopeful for as long as they can. But it is important to avoid false hope.

    Sadly though, sometimes a child is not going to get better, and continuing treatment is not going to change things. When parents and doctors and nurses realise this they can feel like they have lost 'hope'. But it is possible to stay hopeful, even when we are caring for a child who is dying. However, we need to change the focus of our hope. We no longer hope that the child will get better. Instead, we hope that they will be comfortable, that they will not suffer, that their remaining life will be full of dignity and love.

    The doctors cannot be right. They must have made a mistake.

    "Every time we'd go and see the neurologist, I kept fantasizing I'd go into the office and he'd say, oh we have to tell you that we've made a mistake or we've found a cure"

    When they are given very bad news most people have a period of time when they simply cannot believe what they have been told.

    It is normal to have this feeling, and to hope that doctors are mistaken.

    This feeling is sometimes called 'denial', and it is a feeling that is common for all sorts of bad news. For a while it may help us to cope. But at some point denial isn't helpful. Unfortunately, it is very likely that what the doctors are saying is true. You may find it helpful to speak to more than one person about your child's condition, or to get a second opinion.

    See also uncertainty and What should I do if I don't agree with my child's doctors about life support treatment?

    If I agree to stop life support, will people think I am a bad parent?

    If the doctors are talking to you about life support for your child, it is because they are worried that continuing life support treatment would not be helpful.

    Making a decision to stop life support in these circumstances is not a sign of being a bad parent. On the contrary, it can be the most caring, loving thing a parent can do for their child.

    Will we be abandoned?

    No matter what you decide, you and your child will never be abandoned. See If I agree to a DNAR will other treatment stop?

    Will I be letting the doctors down if I agree to stopping or not starting life support?

    No. The doctors and nurses in intensive care work hard to save every child they care for. But they know that sometimes they are not able to succeed. They only want the best for you and your child, and would not want to use life support treatment if it were not going to be helpful.

    What about the rest of my family and their quality of life?

    As parents your job is to care for all of your family - including yourself/yourselves. The doctors will focus on your child's illness and treatment. They are the experts in the medical facts. But you are experts in your family. It is important for you to work out what is best for your whole family. That will often include thinking about what will happen to all of you.

    It is OK to talk with your child's doctors about how you are all feeling, about what you are afraid of, and about the impact on all of you of decisions for your child. Your child's doctor may be able to give you suggestions for how to talk to your other children about what is happening.

    I am afraid that I won't be able to cope if…  

    This is a scary time. Parents feel under enormous pressure, and are sometimes afraid that they won't be able to cope. They might be afraid that they will break down, or scream, or even lose control.

    It is OK to cry, and to be upset. These are very upsetting things to have to deal with. However you react, doctors and nurses are likely to have seen it before and are ready to help you. They won't think any less of you.

    If you are finding yourself getting angry or frustrated it can help to take a break and get some fresh air. Anger is a common reaction to this sort of very stressful situation. It is important though to try not to take out your feelings on other people. If you do find yourself getting cross and frustrated, ask those who are with you to give you some space. Go for a walk if that would help. Give yourself a bit of time to calm down. When you come back, apologise if you need to. The doctors and nurses are likely to understand.

    Parents can be worried that they won't cope. Most times, though, parents are surprised by what they can do when they have to.

    Sometimes parents are scared of being with their child because they don't want the child to see them upset.

    If your child is aware of what is happening, it can be scary for them too. Having their parents with them, even if their parents are sad or worried, is usually much better than being alone or with strangers.

    Being with your child at this time tells them: "I am sad but I am here and I love you"

    "we didn't want to do anything that we wouldn't be able to forgive ourselves for…"

    'Did I make the right decision?' Will I be able to live with myself?

    It is very common for parents to worry about decisions made for their children and whether they did the right thing.

    But you are not making this decision on your own. The doctors and nurses caring for your child are there to help work out what to do. Whatever decision you reach they will support you and your family.

    When a child becomes seriously ill child parents often feel guilty (see What if I had… If only I had…?), even if there is nothing that they did wrong. Those guilty feelings are a normal reaction to a terrible situation.

    After life support decisions parents can again feel guilty and wonder if they made the right choice.

    Although these feelings are common, other parents who have been in this situation are able to cope and to live with themselves. They find that it helps to have been given all the information that they needed and to have had enough time to think decisions through. Parents also say that it helps to know that doctors and nurses were supporting them, and were sharing the decision-making with them.

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