Preparing for a Crisis

“How do I prepare for a crisis or life-threatening situation?”

There will be a time, if it hasn’t come already, when you and your child’s doctor will need to talk about and decide on the intensity of care that you would choose if your child faces a crisis or life-threatening situation.

 

This is an extremely difficult and painful thing to ever have to think about. It is difficult enough for adults to make these types of decisions for their own health care, but the decision process is incredibly hard when it concerns your child. You may have already created a health care decision document (also called a living will or advance directive) for yourself that would tell hospital staff about your preferences should you become incapacitated or unable to speak for yourself. When a child is in a life-threatening situation, these decisions must be made by a parent or legal guardian. Needless to say, you must think long and hard about any information given to you. In some situations, these decisions can be changed but usually have a lasting impact. The health care team may ask you to decide if, given certain events and potential outcomes, you would want your child to be resuscitated, receive other interventions, or receive “intensive comfort care”.

 

Serious illness can involve dramatic and serious changes. These changes may occur slowly over time or happen rather suddenly, maybe even escalating to a crisis or life-threatening situation in a short amount of time. If there have been recent changes, new test results, or your child’s condition seems to be deteriorating, the health care team may offer you some decisions that you need to make regarding your child’s care. These are difficult but important choices about what your wishes would be if your child’s condition changes rapidly and very seriously. You should try to be as prepared as possible by discussing your feelings, beliefs and preferences about life support options, such as, methods used to rescue someone from a crisis or possible death.If your child is old enough to understand, it is very important that you include him’her in the decision making process. These are some of the most difficult decisions you will ever have to make. To help you, the health care team will provide information, guidance, and the wisdom they have gained from experience. They will support you with compassion and understanding and will very likely share your sorrow.

 

Medications and mechanical interventions are two types of options that you may need to discuss and decide with your medical team and your child, if he is able to and old enough. These decisions are extremely personal and individual and often influenced by cultural, religious, or spiritual beliefs. You should share your beliefs with your medical team so that they can more fully appreciate your perspective and support your decisions.

 

Breathing Tubes

A breathing tube may be implemented as breathing becomes more difficult during a surgery or to maintain an airway during a crisis. The tube allows your child to breathe if he is unable to do so on his own. Breathing tubes can be temporary solutions or can be permanent/irreversible.

 

If a physician suggests that your child needs a breathing tube or if you are considering whether he may need one in the future, make sure that you have the information you need about the procedure and your childs condition to make an informed decision. For some parents, there is a line that they do not wish to cross because they feel that it might add to the suffering of their child with little hope for recovery, or even risk of further harm. Other parents would not be comfortable rejecting any treatment that could keep their child alive. They might consider the burden or distress from the procedure not as important as prolonging life. It might help to discuss your child’s condition with an ethics committee or consultant at the hospital. They can be an excellent resource for you and your child’s medical team in that they can provide a new perspective and facilitate these difficult decisions.

 

Heart Resuscitation

There may be another set of decisions about how far the medical team should go if your child’s heart stops or if he has a stopping of the heart [different from first heart stops?] and/or respirations. Your decision may be influenced by where your child is in the disease process. Your decision might also be influenced by your child’s likelihood of recovery or potential functional status if he recovers. Even if his chance of recovering is slight, that might be reason enough to risk more intensive interventions.

 

CPR (cardio pulmonary resuscitation)

CPR is implemented to first determine if the heart is pumping and the patient is breathing, and then efforts are made to restart breathing or heart beats if either one has failed.

 

Ventilator

A breathing tube that is connected to a machine is used to help partially or totally with breathing. The ventilator tube is placed down the airway through the mouth or throat to force air into the lungs. The tube can also be placed through an incision in the throat that leads directly into the airway, which is often needed for long-term ventilator support. Sometimes a child can be put on a ventilator and then weaned off or taken off gradually when he is more stable or has shown that he can better handle breathing on his own.

 

Medications

Medications may be prescribed during a crisis to improve or maintain blood circulation throughout the body and especially the brain. The medications are usually administered through an IV for safety, speed .An IV can also help you avoid added stress on your child that can come from giving repeated injections.

 

If needed, these options should be explained to you in a clear, thorough, and compassionate manner .In fact, it would be helpful for you to write down as much information as possible, including any questions you may have. Not only will you be very disracted simply caring for your child, you will be getting a lot of information. Some of the information may take time to sink in and questions may arise later.

 

It is very important that you know these discussions are about changes in the care and the intensity of care, not care being removed or withdrawn. The decisions are complex, scary, and difficult, but there will be medical experts, clergy, and others to assist and support you throughout the process. There may also be written and online resources to help you, or even other parents who have had children with similar conditions that you can talk to. Most importantly, have faith and trust in yourself. You are the one who will make these and all decisions in a loving and caring way and do what is best for your child.

 

Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice