Caring Decisions

Different types of treatment

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    Are decisions different for different life support treatments?

    The basic principle is the same for all life support treatments. If treatment is helpful we should give it. If treatment can't help, or will do more harm than good, then we should avoid it.

    In practice, different treatments affect children in different ways. Whether or not we should provide them depends on the circumstances.

    There are some differences between life support treatments in their impact on a child. Some treatments are painful, risky, or invasive. Examples include major surgery, breathing machines or heart-lung bypass. If a child is dying it is particularly important to avoid treatments like these that have serious side effects and that might cause the child to suffer.

    But other life support treatments like giving oxygen by mask or fluids via an intravenous line are less painful or risky. If these treatments would not be helpful we could stop them. But they are unlikely to cause suffering if they are continued in a dying child.

    Some treatments are also more controversial and families and medical teams may find it more difficult to stop them. See Is it OK to stop artificial feeding?.

    Is it OK to stop some life support treatments but continue others?

    Yes. It depends on the type of treatment as well as on the reason for stopping treatment. See Are there different reasons for stopping life support 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.

    Doctors and families fairly frequently reach decisions to stop some life support treatments but not others. This is because some treatments are more risky or harmful than others. It will depend on the individual child, on what treatments they are receiving and what problems these treatments are causing. If life support treatment is being stopped because it is causing more harm than good, then the first treatments to stop are usually those that are most harmful. Low risk, low harm treatments may continue. This can change over time depending on the child's condition. Once a child reaches the last stage of their life it may be appropriate to focus entirely on their comfort and stop all further life support treatment. 

    What is a DNAR or AND order?

    Your child's doctor may talk to you about whether to provide resuscitation (CPR) for your child if their heart beat or breathing stops. 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 attempt resuscitation' (DNAR) or 'Allow natural death' (AND) order.

    Doctors and nurses are trained to provide emergency treatment if someone's heart beat or breathing stops. But sometimes that emergency treatment may not be what the person and their family wanted. If families and doctors have decided that CPR is not a good thing for a child it is important that they let other health care workers know. Doctors will usually write this instruction down in a child's medical record so that others who are caring for them know about it.

    There are different names that are given to these instructions, these include

    • Not for resuscitation (NFR) order
    • Do not resuscitate (DNR) order
    • Do not attempt resuscitation (DNAR) order
    • Allow natural death (AND) order
    • Resuscitation plan
    • Goals of Care plan

    All of these phrases are about the same thing, but nowadays many prefer  'Do not attempt resuscitation' or 'Allow natural death' to DNR or NFR. "Do Not Attempt Resuscitation" highlights that for some children and adults attempting CPR will not be successful. For people in the last stage of their life, heart massage and artificial breathing is very unlikely to bring them back, and often only for a short period. The term 'Allow Natural Death' highlights that it can be a good thing not to use artificial life support measures when someone is dying. This may allow them to pass away in a more natural, peaceful and dignified way.

    If I agree to a DNAR order for my child will other people know?

    If you and your child's doctors have agreed that CPR would not be a good thing, they will write this down in your child's medical records. This information is only available to other health professionals caring for your child. Like other medical information, they will keep this confidential. If you are worried about this, speak to the doctors and nurses looking after your child.

    What will other people think of me if I agree to a DNAR for my child?

    If life support will not be helpful, or will do more harm than good, the best and most loving decision we can make is to ensure that a child is kept comfortable. This includes making sure that the child does not receive unhelpful treatment.

    In countries like Australia, and the UK, most children who die after a period of illness have a DNAR or similar instruction in place before they die.

    Doctors and nurses who look after seriously ill children are used to talking with families about life support. They know that families find these decisions very difficult, and will do their best to support you whatever decision you make.

    If you are unsure how to talk to other people (for example family or friends) about what is happening for your child see What should I tell other people?

    If I agree to a DNAR will other treatment stop?

    Not unless you and the doctors have decided to stop them. See Is it OK to stop some life support treatments but continue others?

    Some parents fear that they or their child will be abandoned if they decide not to provide life support treatment. This will not happen. Doctors and nurses work very hard to look after children who are dying and their families. This is just as important to them as caring for children who are able to survive. The doctors may talk to you about involving a team of doctors and nurses who specialise in caring for dying children (see Palliative Care).

    It is important to remember that treatment to make sure your child is comfortable will always be provided for your child if they need it.

    What if I change my mind?

    If you have agreed to a DNAR for your child, but you are no longer sure that this is the right decision you can change your mind at any stage.

    Many parents have second thoughts after they have made decisions about life support for their child. It is natural to have these sort of doubts. However, it is also important not to lose sight of the reasons why you and your child's doctors came to feel that life support was not the right thing for your child. Talk to the doctors and nurses who are looking after your child about your fears and worries. See also 'Did I make the right decision?' Will I be able to live with myself?

    What if I decide that I want doctors and nurses to provide CPR for my child?

    You and your child's doctors should discuss the benefits and disadvantages of life support treatment. You may decide together that CPR would potentially be helpful for your child, or that it would be worth trying if needed. If that is the case, the doctors will usually write that down in your child's medical record so that other doctors and nurses know that this is the plan.

    If you believe that CPR would be helpful, but your child's doctors do not, they may still be willing to provide it. However, doctors may not agree to provide treatment that they think would be futile. See also What should I do if I don't agree with my child's doctors about life support treatment?

    It is important to realise that CPR is not effective in many situations. Sometimes television shows and films give the impression that CPR almost always brings people back when their heart stops. Sadly, this is not the case. In children and adults with very advanced illness CPR usually doesn't work. If their heart stops beating, this is a sign that they are in the last phase of dying. Artificial breathing and heart massage in this situation is usually not helpful and may be harmful for several reasons. It can mean that in the last moments of someone's life they are not able to be with those who love them. Their last experiences may be of pain or discomfort from doctors and nurses inserting needles and tubes and squeezing very hard on their chest and ribs.  It can be important to both parents and child to spend their last time together without interruption by medical procedures.

    I want everything to be done

    Sometimes when doctors talk to families about whether life support treatment should be provided parents reply that they want "everything 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 we avoid doing things that would harm your child.

    The news that a child might die is one that parents understandably find shocking and distressing. Their first instinct is to refuse to believe the news, and to want to fight for their child. Our children are precious to us, and we desperately want to hold on to them. Parents often say that they would do anything to help their child, and that can become a request for doctors to do anything that they can.

    Doctors and nurses also feel that urge to fight against illness and death. When parents ask them to "do everything" they will do everything they can to care for the child. That will mean giving life support treatments for as long as those treatments seem to be helpful. But there comes a time when it is also important to recognise that life support treatments are not helping and may be harming the child. Then doing "everything we can" means focusing on things that we can do rather than on things that we can't. We cannot always cure, but we can always care.

    The best care for a child at the end of their life can be to ensure the closeness of family, prevention of pain and suffering, and protection of the child's dignity rather than subjecting them to medical machines, drugs and procedures.  

    Is it OK to stop artificial feeding?

    Artificial feeding through a tube into the stomach or into a vein is a form of life support treatment. Like other life support treatments it is OK to stop when treatment isn't helpful or is causing more harm than good. However, many people find it harder to stop artificial feeding than other forms of life support treatment.

    Stopping artificial feeding is something that many people find difficult. One reason for this is that as parents and doctors our first instinct is to provide food to a child who is sick or depends on us for their care. Artificial feeding is helpful for many children who are seriously ill. However, it does not cure the child's illness. Sometimes artificial feeding can keep a child alive, but does not help them, or it may cause more harm than good (for example by causing distress from pain or vomiting).

    There are three specific situations where artificial nutrition may be stopped. The aim is not to shorten a child's life, but to avoid causing distress or prolonging dying. It may be possible to give some food or liquids by mouth if the child shows signs of wanting this.

    1. If a child is going to die very soon. When a child is dying their body systems start to slow and to shut down. This includes their digestive system. It is natural for children and adults when they are dying to stop eating and drinking. Doctors do not usually provide artificial nutrition for children in this situation. This is because children who are dying do not usually feel hungry and thirsty. Also, feeding them may cause them to feel sick, or vomit or have breathing trouble. It is important not to cause distress in a child who is dying.

    2. If children have very severe conditions affecting their bowel so that they cannot swallow or digest food and are not able to get better. In this situation artificial feeding can cause serious side effects and may be doing more harm than good. When artificial feeding is stopped doctors will be able to give a child medicine so that they are not hungry or uncomfortable.

    3. If children have such severe brain damage that they have limited or no awareness of their surroundings, and it is very unlikely that their situation will improve. In such a case it may seem that life support treatments, including artificial feeding, do not provide any benefit to them. As far as we can tell children in this situation do not usually have any sense of hunger or thirst. See Are all 'quality of life' decisions the same?

    Although stopping artificial feeding can be the right thing to do, parents sometimes find it a very difficult and heart-wrenching decision to reach. Children usually do not experience hunger or thirst when artificial feeding isn't given, but they may live for some days. This can be a challenging time for parents (and for the doctors and nurses caring for the child). Let your child's doctors and nurses know how you are feeling so that they can support you as well as your child.

    Is it legal to stop artificial feeding?

    Courts in a number of countries have said that artificial feeding is like all other medical treatment; it can be stopped if it is not helping the patient or is doing more harm than good. However, the legal situation in other countries is unclear. You should speak to your child's doctor about this if it is something that you are considering.

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