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."
Despite differences, young people with grave illness look very much like those who are decades older as they make life's final journey, Sheetz says, in their desire to protect their family members from pain. "It's very poignant."
Young deaths quite often come without warning or illness.
Amy Hollinger will tell you up front that from the moment her husband, Carl, was in a serious car crash, nothing went quite right. They were both in their 30s. They'd talked about having "the talk" — the one where you figure out what should happen if one of you were to be seriously injured or ill — but they'd really said it jokingly. Nothing was going to happen to them, they figured. It would be unthinkable in their little family, which included a son and daughter, 3 and 6.
Seated by him in the intensive care unit, as an earnest young doctor tried to explain what was happening to his brutalized body, she had a hard time even taking in the words. Panic washed over her in waves, she remembers. When a day and a half later the doctors explained he had no brain activity — that he was, except for technology, dead — and she needed to decide about removing life support, she was simply overwhelmed.
And guilty, she says four years later. She should have known what he would have wanted. She didn't.
While the details of dying depend on the family and the illness or injury itself, experts agree that being as pain- and symptom-free as possible are goals of palliative care and most patients want that. The where, however, varies. While most adults say they'd like to die at home, surrounded by friends and family, that's not a universal desire. With children, for some families, "having the child at home is incomprehensible, while others want it," Sheetz says. "I think another definition of a good death is that all the decision makers have arrived at a place of peace in their hearts. Not that they feel good about death, but that they have agreed; it's been talked about and processed and happens in locations that work in the family, with the support they need."
When Megan, now 30, got her diagnosis, she and her husband "didn't go there. We didn't talk about death. I was going to beat it." And for a while, she really did. It was stage 3 then and she had surgeries and chemo and radiation, and the disease retreated.
She'd gotten a degree in fashion design, her first love. But since she had no urge to live in New York or Los Angeles, she decided while having chemo she would be a nurse. While in remission, she did the prerequisites and had a perfect grade point average. She was on the waiting list when she got the call that the cancer was back. "It kind of (ticks) me off that I finally knew what I wanted to be," she says fiercely, then she smiles.
She likes talking about the best way to live and how she should feel. She "can look at it maturely," she says. But when someone says "live your life to the fullest," she's puzzled. "I can't figure out what that means." She's slowly letting go of the idea she can be anything she wants to be. She's substituting things she wants to get done, in case.
She plans to write Makena a letter for when she graduates. And when she marries. She'd like to make a video of herself reading Dr. Seuss' "Oh, the Places You'll Go!" She wants Makena to embrace that theme, too.
She's been teaching her young brother-in-law and one of his pals how to sew. Megan bought her own first sewing machine with pennies and dimes she'd saved when she was 7. That's one of her passions.
She was heartsick that she might have passed the breast cancer gene onto Makena. Testing shows she hasn't. The day they got the results back, she wrapped her arms around her little girl and hugged her tight, laughing and crying and kissing and praising as she stroked the toddler's silky blonde hair. "Good job, Makena," she cooed. "You did so good."
She's guessing what will happen and thinks she'll get sick sooner, not later. "If I say that, they think I've given up. I haven't."
She's not worried about medical decisions if she can no longer make them. Her husband will do just fine with that, she thinks. And while she wonders about the future, she's not living in the fretfulness of what might be.
Instead, she reaches into Makena's pile of Fruit Loops, gives her a huge smile and wink, then pops one in her mouth.
"I'm not dying today," she says.
Editor's Note: Advance directive and end-of-life planning is an important and neglected topic. Families often shy away, and when crisis comes, relatives are left trying to guess what someone would have wanted. This week, Deseret Media Companies has joined a coalition to raise awareness about the issue, in conjunction with passage of SCR2, which asks Utahns to consider making their own decisions, appointing an agent and having those tricky conversations. The Deseret News and KSL TV will be running stories on the subject all week.
Click here to download advance care directive forms that can help you make decisions about the health care you would like to receive in the event of an unexpected and life-threatening occurrence.
EMAIL: firstname.lastname@example.org, Twitter: Loisco