Early Death, Their Way, by: J. Hoffman
From The New York Times that came with today’s paper…
Tumors had disfigured Ashley Leigh McHale’s features and spread to her organs. A year ago, AshLeigh, 17, flew from her home in Catoosa, Oklahoma, to the National Institute of Health in Bethesda, Maryland, with thin hope of slowing her melanoma.
A social worker stopped by her hospital room, and they began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want her loved ones to know?
The social worker showed AshLeigh a new planning guide to help critically ill young patients express their preferences for their final days—and afterward.
If visitors arrived when AshLeigh was asleep, did she want to be woken? What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?
When she died in July, AshLeigh was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirls boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.
“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”
A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. Recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these decisions.
“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”
There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated eleven percent of deaths among adolescents in America, about 1,700 per year. And thousands live with the uncertainty of grave illness.
“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” said Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia.
But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers.
Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation.
In a 2012 survey examining end-of-life attitude among adolescent patients with H.I.V., fifty-six percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such talks as emotionally healing.
Teenage patients can guide, even lead, their medical care, Dr. Freudner said. Including them in the discussions acknowledges a terrible fact that patients and family members struggle to keep from each other: the likelihood of death. “Then people can be together, as opposed to be alone,” Dr. Freudner said. The teenage patient can address intimate topics, including, “the scariest aspects of the human condition—mortality and pain—but also love, friendship and connection.”
Karly Koch, a college student from Muncie, Indiana, has been treated for many serious illnesses, including Stage four lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at twenty-two.
Last spring, Karly, then nineteen, developed congestive heart failure. As Karly lay in the intensive care at the National Institute of Health, a psychotherapist approached her mother, Tammy, with the new planning guide.
“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it—do we put it in her head?”
“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”
Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.
The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” It is the first guide created for adolescent and young adult patients.
The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a principal investigator on the research that led to the planning guides.
In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? What gives you strength of joy, the guide asks. What do you wish to be forgiven for?
By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: They are too young to leave a meaningful legacy.
Last July, Karly Koch had an experimental bone marrow transplant. With twelve medications a day and a surgical mask, she is out and about in Muncie. Karly takes classes to become a physical therapy assistant. She delights in “normal people” activities.
Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”
“Now looking at it,” she continued, “I think I’d like to add some things.”
So, this, is a way, of helping young people who are diagnosed with terminal illnesses cope with their own final affairs, and, it’s a great thought, because it will give the families some comfort, knowing that their offspring had the chance, of voicing their opinions on how they wanted to go, and it gives respects to the terminally ill, and shows respect toward life too.