Drs: Mom Fighting For Do-Not-Resuscitate For Terminally Ill Son

The Doctors: Mom Desires DNR For 14-Year-Old Son

The Doctors said to try to imagine if your child was suffering from a condition that required you to put safe guards in place in the event that something life-threatening happened when you weren’t with them. What if your decision was to do nothing? One woman explained that her 14-year-old son, Alex, has Autism and is more like a small child mentally. He can’t show himself and can’t even tie his own shoes. When Alex was born, both of the valves in his heart had thickened, and the valves have had a “hard time keeping up” with his enlarged heart. Alex has both Autism and a critical heart condition.

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The Doctors: DNR For Child With Terminal Illness

Drs: Mom Fighting For Do-Not-Resuscitate For Terminally Ill Son

The Doctors spoke with a mom who is fighting for end-of-life rights for her teminally ill son, wanting a DNR order. (cmrf_crumlin / Flickr)

Even a simple doctor’s visit can be traumatizing, often times requiring medication for Alex. There’s even been times that doctors have had to hold Alex down, and it can take weeks for him to recover. His health has slowly been declining, and they have to take Alex in for an EKG and heart monitoring every six months. Alex’s parents want him to have “quality over quantity” and don’t want to put him through a hard time every day, which is why they want a DNR (do-not-resuscitate) put in place for Alex. A DNR is a medical order stating that doctors should not perform life-saving measures.

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The advanced directive says that if you become unresponsive and cannot speak for yourself, there are certain things that are wanted. Alex’s parents found that there were laws or policies in Alabama for the paperwork to even be filed. Alex’s condition has worsened to the point that he was put on Hospice in May and they don’t know how long he has. They want to be sure that his death is peaceful and not traumatic.

The Doctors: Fighting For End-Of-Life Rights For Children

Rene, Alex’s mother, joined the show, explaining that she knows her son is going to die, so she wants to choose the quality of life he will have while he is here. As Dr Travis Stork said, we struggle in this country to have open conversations about end-of-life rights. Lawyer Areva Martin and Dr Monica Williams Murphy, an advanced directives expert joined the show as well. Areva said her heart went out to Rene as a parent, but said she lives in a state where the law doesn’t recognize a DNR for someone under 19-years-old. His school hasn’t allowed him back because of the DNR wishes. But the school has taken into account not only the position they would be put in against the law, as well as the effect it could have on other students.

Rene is working with legislators trying to change the law so that schools and other organizations can have some guidance. Rene said she wants school nurses to be better equipped to handle serious illnesses. She also said it’s our responsibility as parents to teach children about death and dying. Dr Murphy explained that medical directives for minors have an ethical basis, as well as being emotionally charged. There are 5,000 children in the U.S. who have complex and critical medical problems and have around six months to live. Dr Murphy believes that once those children reach the end of their lives, parents should still be involved in making serious, difficult decisions about their care.

The Doctors: Controversial Medical Directives For Children

Dr Murphy said a lot of people likely think that a parent doesn’t love their child if they’re willing to make a medical directive, but that couldn’t be further from the truth. She said it’s actually because they love them so much that they’re willing to put their hopes and fears aside to focus on the best interest of the child. She said CPR is not a cure for a terminal illness, and added that it’s much more traumatizing to witness unsuccessful CPR than to witness a “natural dying experience.”

Areva said parents do have rights, except when those rights infringe upon the health and welfare of a child. There are situations in which the law has to play a role in making sure that parents make responsible choices for their children. One positive that comes from Rene’s story is that we’re having the conversation. If you’re terminally ill and your last memory is of a doctor pressing on your chest, it’s no wonder that a parent doesn’t want that for their children. Dr Stork said resuscitation can be brutal and devastating.

Where do you stand on the controversial issue? Should Rene be allowed to order a DNR for her son? Should the school be forced to honor that?

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