Caring Decisions

Stopping and not-starting

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    "it's always going to be harder to decide when is enough, once you start to keep him artificially alive…"

    Is there a difference between stopping treatment and not starting treatment?

    Providing life support treatment is not always the right thing to do to. See Stopping treatment.

    There are two different types of life support decisions that can be made.

    Doctors and parents can decide not to start new forms of life support treatment that a child isn't currently receiving. For example, we might decide not to use CPR (chest compressions) if the child's heart stops.

    Doctors and parents can also decide to stop (not continue) life support treatment that has already been started. For example, we might decide to remove a child's breathing tube and stop the ventilator (breathing machine).

    Family members and health professionals sometimes find it easier to decide not to start new treatment than to decide to stop existing treatment.

    However, experts in medical ethics and the law are clear that there isn't any important ethical or legal difference between stopping and not starting treatment.

    Not starting. Decisions not to start new treatment are probably the most common form of decision made about life support. (They are also sometimes referred to as "withholding" decisions). The most common situation is when a decision is made that if the child's heart stops, that heart massage or CPR (cardiopulmonary resuscitation) will not be used. Another example is when a decision is made not to use intensive forms of life-support treatment like ventilators (breathing machines). (See What is a DNAR or AND order?)

    Not continuing. Decisions to stop life support treatment are also commonly made for children who are very seriously ill or dying. (These decisions are sometimes called "withdrawing" decisions). They include decisions not to continue life support machines like kidney machines or breathing machines. They also include decisions to stop medicines like antibiotics or chemotherapy that the patient is currently receiving.

    People sometimes find it easier to make decisions not to start new treatment, than to stop current treatment. They might feel that decisions to stop treatment are more serious or more significant than decisions not to start.

    However, many experts in ethics and law believe that we shouldn't treat these two types of decision any differently. Here is one reason for this view. If a treatment is no good for a child (because it isn't going to help them at all), then we should not provide that treatment. It doesn't make any difference whether the treatment has already been started, or hasn't started yet. The treatment is unfortunately equally unhelpful for the patient whether or not they are currently receiving it.

    When we think logically about life support, it is hard to see a difference between not-continuing and not-starting decisions. Yet emotionally it can seem much harder to stop treatment.

    Most major religions and cultures allow doctors either to stop treatment or to not start treatment. Some religions (for example some orthodox forms of Judaism) are stricter about decisions to stop treatment. However, even within those religions there are differences of opinion. (See religion)

    "You know, I had in my mind that at some point we would have to turn off something…but it was more a case of take away this, you take the IV and don't put it back in. It wasn't a case of us physically flicking a switch"

    What if I still feel uncomfortable stopping life support treatment for my child?

    Sometimes it helps to make decisions about life-support one step at a time. There is often no need to make a decision about everything at once. You might find it easier to talk first with your child's doctor about not starting forms of life support like CPR, and then later to talk about treatment that he or she is currently receiving and how useful this treatment really is. (See What is a DNAR or AND order?)

    One way that might help you to think about current life support treatments for your child is to imagine that they are new treatments, but that otherwise your child's illness is the same. For example, you might imagine that doctors have come to you to talk about whether to start breathing machines for your child. If it were the right decision for your child not to start the breathing machine, then it would also be the right decision to stop the breathing machine.

    Another alternative that you might find helpful is to talk with your child's doctors about a "trial of treatment". See below

    Finally, some parents find that even though they accept that continuing treatment is not a good thing for their child, they would prefer it if someone else were to make a decision to stop that treatment. See "Who decides?"?

    What is a 'trial of life support treatment'?

    A trial of treatment may be helpful if it isn't clear whether treatment will help or not. Treatment is started for the child, and if it isn't working the treatment is stopped. (Note this is different from a research trial, where doctors are studying a treatment in many patients to see whether it works).

    When it isn't clear if life support treatment will be helpful or not, doctors will sometimes offer the option of a 'trial of treatment'. For example, this might mean taking a child to intensive care, and seeing if they improve. Or it may mean trying a form of more invasive life support like a kidney machine or heart lung bypass. But before starting doctors will plan how long the treatment will be given for (eg 2 days, 3 days, 1 week) and what things would be used to work out whether to keep going or stop. There is an expectation that treatment is only being provided for a short time unless there is improvement.

    Trialling treatment is not always the right option. One potential problem is that it can be hard to know whether or not treatment is working. Doctors may not be any more certain about the outcome for a child after 2 or 3 days of treatment. Another problem is that some families or doctors find it harder to stop treatment once it has been started. So for example there may be a chance that once the child is taken to intensive care, or started on the heart lung bypass machine that they end up having many days of unpleasant and invasive treatment, but still end up dying. Finally, if the chance of treatment working is very small it may be better to decide not to have the treatment at all rather than to have a trial of treatment. In that situation it is most likely that the child will experience unpleasant side effects from treatment, but not benefit from it.

    Questions that you could ask your child's doctors about treatment:

    • Which treatments do you think should be provided for my child, and which ones should be stopped or not started?
    • Would it be worthwhile considering a 'trial of treatment'?
    • If treatment is tried - when will it be reviewed? How will we know if treatment is worth continuing?
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