Laura Seitz, Deseret News
The third article in a five-part series. Read the first and second articles: "How will I die: preparing your family, directing your care" and "How will I die: finding hope in hospice"
SANDY — When Megan Pilling was about 12 years old, her mother had her feel the lump. She'd been diagnosed with breast cancer and before it was cut away, she wanted all her daughters to know what they'd spend the rest of their lives watching out for.
Megan would find a nearly identical lump in her own breast just days shy of her 27th birthday. Sometimes, a curveball hits you when you're not even attending the game. And so she sits in a favorite cafe and talks about what a "good death" would look like while she watches her 4-year-old daughter, Makena, sort Fruit Loops into colored patterns.
A good death is completely tied in with a good life, she says. You have to have one to have the other. And while she's not giving up, she's trying hard to be realistic about her stage-4 cancer diagnosis. "I don't want to spend all my time talking about how I'm going to beat this and then find I've run out of time for other things," she says.
Her approach to the battle has two fronts: Aggressive treatment and planning just in case. She has both chemo and a bucket list.
There's a tendency, when topics like advance directives or even death arise, to think of the elderly. The truth is people become gravely ill and face the possibility or reality of death at all ages. No one knows better than Dr. Joan Sheetz that illness strikes even the youngest. She's an associate professor of pediatrics at the University of Utah and director of Rainbow Kids Palliative Care Program, which is an in-patient consulting service at Primary Children's Medical Center. They deal with very ill patients, prenatal to age 36. Those older ones were born with congenital heart defects.
The issues may be quite different when one is faced with the possibility or likelihood of death as a child or even middle-aged adult than when one is elderly. For palliative care specialists who treat children, for instance, pain is lower on the list than helping families figure out the goals of care. "There's a societal denial of childhood death," Sheetz says. But about 500 children a year die in Utah, 25 to 30 percent of them from complex illnesses. The rest are acute illness, trauma, shaken baby and drowning. "I think it complicates decision making hugely. An octogenarian has lived a full life and perhaps communicated wishes. I don't think it's easy for family members of children to make decisions; there's not a lot of information to go on. Half of childhood deaths happen in the first year of life, a lot of them neonatal. Parents are just learning how to become parents in the first place and then to have to make decisions for someone they are so totally responsible for. There are so many grief issues tied up in it: the loss of the idealized newborn, the loss of a child's future, the milestones a child won't make, making decisions for someone who can't," Sheetz says.
About half the kids are too young to speak and others are developmentally delayed and can't communicate. Those who can, though, should be given as much voice and decision making as they want, their thoughts at least weighed as their parents ultimately make the choices, she says.
Including children at the level that's age appropriate is important, says Dr. Jeffrey Botkin, a professor of pediatrics and medical ethics and associate vice president for research at the University of Utah. "Parents occasionally say 'I don't want you talking to my kid about any of this.' Kids understand more than you think and putting on a happy face and pretending there's no problem doesn't help anyone. If children are older, engaging them in decision making and awareness in some sense is important."
Families should think about the right way to handle it, Botkin says. "The right thing is not the same for every family."
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