My third grandson, Bryce, is a bright, gregarious bundle of five-year-old energy with a fixation on the exploits of Iron Man. He preens in an Iron Man costume, plays Iron Man videos and games, scatters a closetful of toy replicas of the superhero, his allies and nemeses and can detail the nuances of their special powers to the exhaustion of any nearby attention span. He also loves school, rides his bicycle without training wheels, scrambles up and jumps off high perches without fear, and is getting good at hitting a baseball and kicking a soccer ball.

To watch Bryce joyfully roughhouse with his dog or his baby brother you would never suspect that implanted in his upper chest is a port through which, regularly over the next few years, he will continue to receive infusions of powerfully toxic drugs.

In August 2012, after complaining of sore legs, Bryce was diagnosed with acute lymphoblastic leukemia. He is now in remission and enrolled in a clinical trial.

Not so many years ago, Bryce's parents would have had little to anticipate beyond months of grief and imminent loss. Today, thanks to advances in medicine, children like Bryce have a 90 percent chance of experiencing a complete cure — not just of surviving with abated cancer for another five or 10 years, but, emphasizes Duke University Medical Center pediatric oncologist Ray Barfield, M.D., "being done with it! Finished!"

A Good Place to Die

Patients like Bryce, a little Iron Man — brave, cheerful, stoic in the hospital, responsive to treatment, with an excellent prognosis — are what pediatricians like Barfield (who is not his doctor) live for. But that's also why they find it so draining to deal with cases in which the disease is clearly winning, their medical armamentarium is exhausted and the child is on the brink of death.

Those wrenching scenarios — anguished vigils over newborns too premature to be viable, failing infants, terminally ill children, dying adolescents — play themselves out more than 50,000 times a year in U.S. hospitals. Half of all deaths in the United States occur in hospitals, notes Nancy Berlinger, Ph.D., a research scholar at the Hastings Center in Garrison, N.Y., and the proportion is even higher among children.

Clinicians often report uncertainty about the legal and ethical issues involved as they try to help families muddle through the harrowing choices presented when a child's condition is grave. "They voice concerns of conscience about providing end-of-life care," writes Berlinger in a recent issue of Pediatrics (with co-authors Barfield and Alan Fleischman, M.D.). "Most agree that we sometimes save the life of a child without sufficient regard for the profound consequences of our interventions on a child's subsequent quality of life. These knowledge gaps and professional concerns may lead to tension within teams and confusion about how to provide good care."

Doctors need more to go on than good intentions, personal belief systems and individual preferences when they huddle with distraught families, suggests Berlinger. They need a grounding in bioethics; they need to be up-to-speed on the law as it affects end-of-life care; they need to be aware of the consensus recommendations of experts in palliative and pediatric subspecialty medicine; they need to be current with the latest research findings on brain death and the like. Finally — "true for anyone who touches lives in a hospital," she stresses — they need to be skilled at communication.

All of those, she points out, can be provided if there is a "commitment by the people in the C-suite to create structures that support seriously ill patients and families through investment in clinician education and through integrating care near the end of life into patient safety, quality improvement and other systems.

"You don't see billboards boasting, 'We're ranked high as a good place to die,'" observes Berlinger. "But if we're serious as a nation about improving health care, then the safety and the quality of care at the end of life has got to be a priority. It's a big challenge, but it's essential to what we do!"

Child's Best Interests

In 1987, the Hastings Center published a set of ethical Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. In it, very little attention was paid to coping with the needs of dying children and their parents, Berlinger notes. And despite the fact that more than half of all pediatric deaths are accounted for by babies younger than age 1, there was no reference at all to the neonatal intensive care unit — which is where the vast majority of those sorrowful endings occur.

A newly revised edition of the Hastings Center guidelines — of which Berlinger is a co-author — remedies the lack. "No section," she comments, "was harder than this one."

Pediatric end-of-life settings vary according to the age and condition of the child. For neonates, it will commonly be the neonatal intensive care unit; for infants (classified in the guidelines as younger than age 1), young children (1–6), older children (7–14), adolescents (14–18) and even some older adolescents, it could be the pediatric ICU, or an outpatient clinic, or an emergency room or, under the Affordable Care Act, a long-term care facility or the child's home under hospice care while active treatment of the disease continues.

For all of these children, no matter what their age or intellectual development, the overriding principle is "best interests decision-making." That is, clinicians and families must always focus on the child's apparent experience of the illness or condition; whether or not the child appears to be suffering physically or psychologically; whether the treatment options hold some realistic potential of benefit for the child; what are the burdens of each treatment option; the possibility of forgoing further life-sustaining interventions; and the child's ability to understand and tolerate the treatment.

"Even very young children, toddlers, can start telling us what they like and don't like," Berlinger emphasizes. "They can't make medical decisions, of course, but they can have preferences. And at about the age of 7 they can make decisions and understand consequences."

So the governing concept as the child matures, she says, shifts to "shared decision-making." Terminally ill children have to be allowed a voice and they have to be listened to in deliberations over what is in their best interest when death looms.

Brain Surgery with Words

Babies born prematurely, of course, represent "the extreme case of a child's having no input one way or another," observes Barfield, who directs Duke's pediatric quality of life/palliative care program. "Of all the patients in the hospital," he notes, "they have least lived into their potential. So the baseline is to pull out all the stops.

"Typically the parents are young and inexperienced," he adds. "So often they have a truncated sense of being able to advocate for the child in the NICU. That frequently leads to excessive technological intervention. And it's a tough judgment when to stop.

"In all high-tech situations," he amplifies, "there are stages of intervention. The first is optimistic. You think you can do some good. The middle stage is when uncertainty creeps in. That's the hardest place to live. The third stage is when the medical team has reached a certainty that things are not going to go well. Up to that point, they've made all the decisions. Now do they just dump it all in the lap of the parents and ask, 'What do you want?'"

Not at a hospital that takes end-of-life care seriously, he proposes. Not at Duke, where, says Barfield, "it's in the second stage that you start to talk about the hidden costs of intervention, the pain and the non-pain suffering."

Pediatrician Robert Macauley, M.D., medical director of the pediatric advanced care team at Vermont Children's Hospital in Burlington, part of the University of Vermont/Fletcher Allen health system, observed in an interview earlier this year that "every specialty has a procedure." Orthopedic surgeons have the joint replacement, for example. Medical oncologists have chemotherapy. For palliative care physicians, he proposes, "our procedure is the family meeting."

Barfield puts the same idea a little differently. He calls it "the conversation." And he likens it to brain surgery.

He explained the comparison in a local TEDx Talk recently. In brain surgery, he noted, "first, the stakes are really high … . Second, you have to operate on the brain that's in front of you, not the brain that you wish was in front of you … . Third, you have to pay attention. Just a moment of inattention can lead to irreparable harm … . And fourth, you have to know the limits of what you can actually do in your operation. Maybe to push the procedure any farther will cause harm rather than help the patient."

By the same token, he analogized, "Each child who's facing death is singular. It matters how that child's dying goes … . Second, you have to start the conversation with whoever's in front of you, wherever [philosophically and emotionally] they happen to be, not where you wish they were … . Third, the last moment of a person's life is still a moment of life, and I want it to be lived well for this child and family. So, my goal is to listen, and not to impose on them what [the process] would look like to me … . Finally, there are times when the slightest move can make a difference. [Saying the wrong thing] can actually carry the family farther away from understanding what's going on than closer. We need nuance and responsiveness."

And that, he concludes, "is why I call these conversations 'brain surgery with words.'"  

Reorganizing Medicine

In fact, Barfield says, he "leads with silence" when he sits down to discuss options with a dying child's family.

"Tell me what you're hoping for," he begins. Then he closes his mouth.

"It's fascinating to me," he comments, "how little we listen in medicine."

The response usually follows a pattern, he reports. First, the family admits, "'We're hoping for a miracle.' Then they stop talking and I still stay silent. And it's striking the number of times they'll go on to say, 'At least we don't want him [or her] to suffer unnecessarily.' And it's then, if we just stay quiet at first, that we can start to talk about how much medicine can really offer and all the kinds of things we can do to make the child comfortable. I've had a number of parents who will talk for an hour about all the things they'd like us to do … and then finally say, 'But, I don't see the point any more.'"

Doctors and hospitals have only themselves to blame if parents have unrealistic expectations of what one more arduous experimental trial can accomplish, Barfield asserts. "I've overheard a lot of conversations where the physician says, 'Well, there's a less than 10 percent chance,' which means, 'There's no chance, but I can't bring myself to say that.' What the parent hears is, 'Ten in a hundred will walk out of here.' So, of course, they want to try it. Meanwhile, the child's wishes are being lost."

Hospitals, for their part, trumpet slogans like that of his own institution: "At Duke there is hope."  Or like the motto of his former hospital, St. Jude, in Memphis: "Finding cures, saving children."

"In the United States, our patients as well as our medical centers have got to get good at accepting the reality of death," he counsels. "And at counting the hidden costs of simply doing the next thing. We hide so much suffering behind the walls of our hospitals. People have no idea of the depth of that suffering."

Barfield is busy organizing a conference on "Reorganizing Medicine," aimed at "thinking about what needs to change in the educational machinery that produces doctors and the institutional mechanics [that condition them]."

The first priority for institutions, he argues, is to develop a culture that "emphasizes family-centered care ... not 'while you're in the hospital, it's my way or the highway.'" At Duke, as an example, all rounding on pediatric patients is done with the family in the room.

Secondly, he suggests, hospitals and physicians need to de-emphasize hierarchy. "Care teams should be thought of as roundtables, with the physician as maybe quarterback, but the work of all the members of the team validated. That also helps physicians not want to kill themselves," he adds. "A lot of medical cruelty is the fallout of physician burnout. This should be the greatest job in the world, coming into people's lives … ."

And deaths.

"We're the guests in their story, guests at their bedside," he reflects. "And in their story, we're only a small slice. The key to doing any of this well is being prudent, in the scholastic sense, responding to the truth in things, in their world, as the conversation proceeds. We have to let go [of our preconceptions], like the brain surgeon walking into the operating room. We've got to be willing to be changed by what they say. With mindfulness, this kind of conversation can be life-altering."

Author's note: A picture book explaining cancer and its treatment in animated terms children can appreciate and find reassuring — Bryce and the Blood Ninjas,by Erec-Michael Weber, with illustrations by Alvin Harvey II — is scheduled for publication by Kila Springs Press later this month. The book also will be available through www.Amazon.com and Barnes & Noble.

David Ollier Weber is a principal of The Kila Springs Group in Placerville, Calif., and a regular contributor to H&HN Daily.