Parents of terminally ill children have a tough decision to make: to talk about funeral plans with their child or to shield them from the idea completely.
It’s not an easy decision. When the child is a teenager who has already come to terms with his or her illness, parents might want to start the end-of-life conversation immediately. When the child is five years old and still doesn’t understand why or how he or she is dying, parents might want to take care of everything by themselves.
The New York Times recently spoke about this dilemma to teenagers dealing with terminal illnesses. While the teens suffered from different diseases, they handled their impending deaths using the same Voicing My Choices guideline.
Experts from the National Institute of Health, along with other organizations, created the guideline to take the guesswork out of a young patient’s end-of-life care. The document gives details about simple wishes, like what music to play for them when they want to be comforted. It also gives an outline for major decisions, like when to remove them from life support. It’s a novel way of dealing with a question many parents find unpalatable and terrifying.
The problem with this system is that patients don’t always get a say in what they want.
In the United States, the medical care of someone under the age of 18 falls squarely on the shoulders of parents. The parents or legal guardians make the final decision on any medical treatment doctors suggest. The problem with this system is that patients don’t always get a say in what they want.
This is especially common for children going through a terminal illness. Western culture views children as innocent, seeking to shield them from blunt conversations about death. Children should have decades to think about dying, so the idea of a child needing to accept his own death and make decisions about his funeral feels wrong.
Yet children are diagnosed with terminal illnesses every day. It’s the responsibility of doctors and guardians to find a balance with the end-of-life conversation. It requires giving the child a voice without scaring him or her.
On one hand, talking about what a child wants at his or her funeral can cause unnecessary stress. But terminal illnesses are already stressful. Would it be more stressful to talk with children about their deaths, or to imagine what they would have wanted when they’re no longer able to speak?
The parents in the New York Times piece found comfort in their children’s wish guideline.
That’s the question guardians have to ask themselves. The parents in the New York Times piece found comfort in their children’s wish guideline. One mother had two children with a rare genetic condition. When her first child died at 22 from the disease, she was forced to guess what her child would have wanted, which added more stress to her already stressful situation. When her second daughter was diagnosed with the same condition, she had her daughter fill out a guideline about medical care and funeral wishes.
The article proves that many teenagers want a say in their medical care and funerals. They’re not always afraid to talk about dying. They need a way to start the conversation.