I understand this decision will not prevent me from obtaining other emergency medical care and medical interventions, such as intravenous fluids, oxygen.

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One of the decisions that patients and parents may have to make after deciding that comfort is now the goal of care is whether or not there should be any attempts to revive (or resuscitate) your child if and when your child’s heart or breathing stops. • A DNR or “Do Not Resuscitate” order applies to situations where your child has a respiratory arrest (stops breathing) or a arrest (heart stops beating). DNR means that no CPR (chest compressions, cardiac drugs, or placement of a breathing tube) will be performed.

• A DNI or “Do Not Intubate” order means that chest compressions and cardiac drugs may be used, but no breathing tube will be placed. • An AND or “Allow Natural Death” order is a term used at some hospitals as an alternative to the more traditional DNR order. While a DNR simply states that no attempts should be made to restart breathing or restart the heart if it stops, an AND order is used to ensure that only comfort measures, designed to provide excellent control of pain or other symptoms, are taken. This includes withholding or discontinuing resuscitation, artificial feedings, fluids, and other treatments that prolong the dying process without adding to your child’s quality of life. Allowing a natural death means not interfering with the natural dying process.

It also means that every effort will be made to have your child’s time of death be calm and peaceful, with you and your child surrounded by as many family and friends as you, the parents, and your child wish. Full discussion with a health care provider is critical so everyone understands the circumstances under which a DNR, DNI, or AND order would go into effect and the specific actions that will or will not be taken. Above all, remember that DNR/DNI/AND decisions are reversible and can be withdrawn at any time. In addition, the healthcare team must confer with you periodically (every few days or weeks) to verify that you still want the DNR/DNI/AND order in place. If able, your child should participate in the discussion so you know that you are carrying out what your child wants. Sometimes parents worry that if they decide to forgo curative treatment, their child will no longer receive good care. However, the findings from a number of recent studies show that there is as much – or even more – intense care after a DNR/DNI/AND order is signed and comfort care only begins.

What If It Seems That My Child Wants “Everything” Done? Without question, there are children and families who do not want to leave any stone unturned and decide to use any drugs or other treatments that might offer, at the very least, more time. You and your child are communicating with each other every step of the way as you make decisions about treatment. Phrases like “don’t give up on me” or “I want to keep trying” are always times to talk about all the alternatives, opportunities, and possibilities that medicine has to offer. Some families ask for a second opinion about additional treatment. For some diseases, there are centers that can offer Phase I trials, research studies designed to test therapies that have shown promise in laboratory or animal research, but are just beginning to be studied in humans.

If a child and family ask, referral for treatment at such a center can be explored. As with any decision, all the risks and benefits need to be weighed and the best option for your child pursued.

But, even if the decision is made to seek the most aggressive treatment available, all of the principles of communication, keeping the best interests of the child paramount, and providing as much comfort as possible while undergoing treatment must still be foremost in everyone’s mind. Quantity of life will always be one of the hardest judgments you and your child will make. Only you and your child know what value each of you place on time together and at what cost. And, only by talking about it and listening to each other through words or actions can you, together, make the decision that is best for your child.