How Do You Help Critically Ill Children—and Their Parents?

Imagine being a pediatrician who treats only very, very sick children.  Many will live; and many will die. And as a physician you realize that, while you can help, you do not decide.  No matter how brilliant you are, your tools are limited.  Despite the arsenal of medical technology at your disposal, in many cases you are forced to recognize that medicine is still an infant science. Often, you must rely on intuition-- barely articulate knowledge that comes with long experience.   And, even then, sometimes you won’t be able to save your patient –a child who hasn’t yet had a chance to live.

I can’t imagine a harder row to hoe—except to be the parent of a child in a Pediatric Intensive Care Unit (PICU).

In Your Critically Ill Child: Life and Death Choices Parents Must Face, Dr. Christopher Johnson, co-founder of the Mayo Clinic’s PICU  in Rochester, Minnesota manages to address both audiences: parents and physicians.

Ostensibly, the book is aimed at parents. But I would urge any doctor who treats seriously ill or injured children to read it.  Johnson, who has practiced pediatric intensive care for twenty-five years, offers a window on the parents’ world, and essential advice on how to collaborate with them.

The first tale focuses on Robert, a healthy five-year-old who suddenly and mysteriously lapses into a disoriented and ultimately hallucinatory state.  “By the time he arrived at the PICU he was agitated and combative. He could not recognize his mother. By that afternoon, he was developing all the signs of fast developing acute liver failure. “

Johnson subscribes to shared decision-making: “I believe parents of children in the PICU need to be told all aspects of what is going on with their children. Parents, however, still need to make decisions with clear guidance from physicians. That guidance comes from the physician taking the time to sit down with parents at the bedside, not be standing near the door, glancing at the clock. Insist on your physician giving you all relevant information about your child. If necessary, request a scheduled time to meet. No matter how hectic the situation, parents of a critically ill child should feel as if they have my complete attention.”

Nevertheless, when a child is first admitted to the hospital, things may be happening too quickly for the doctor to stand still and talk. Robert’s condition was deteriorating rapidly, and while Johnson was trying to explain to his mother what going on –even as it happened-- he had to have the conversation “on the fly.”  This, he explains, “lays bare the inherent uncertainty that surrounds much of what we do not know the PICU. That is, we proceed with the best information that we have at that moment, recognizing that new information may appear or events occur that send us down an entirely different treatment path. That is the reality of critical care practice...Foremost in my mind was the fact that, although I knew that Robert’s liver was failing, I did not know why. “

Meanwhile, Robert’s condition worsens.  It has become clear that he needs a liver transplant, and his kidneys are starting to fail as well.  “His brain continue[s] to swell. He is oozing blood from his nose, his mouth, his lungs, his intestines, and the holes in his skin where needles had been.”

Yet in the midst of all this, Johnson still manages to be exquisitely aware of the needs of Robert’s mother, Gail.   A twenty-one-year-old single mother who has no other children and no close relatives nearby, “she is progressively falling apart under the strain…The cause is a combination of stress, fatigue, fear and information overload. Chronic sleep deprivation, not eating enough and worrying take a fearful toll on the body.” 

Johnson understands that she is reluctant to leave her child’s bedside; he might die while she is away.
But, he counsels parents “if you are to be the best help to your child, you must take care of yourself, eat adequately and get sufficient rest.”  For there are things only a parent can do. “Parents often feel helpless in the high-tech world of the PICU,” he writes, “Yet even if you are only holding your child’s hand, only you can really give that sort of comfort to your child.”

In another story, Johnson helps the parents of a child suffering from spinal muscular atrophy confront the most difficult of ethical questions, without intruding on their decision-making. 

An infant suffering from a severe form of this congenital disease will never be able to breathe on his own. Until recently, Johnson explains, “the only thing to do be done was to keep him as comfortable as possible until he became too weak to breathe and cough effectively and died from aspiration pneumonia or simple respiratory failure.”

But today, technology has, for better or worse, changed the situation profoundly. Simple, in-home ventilators are available for infants and small children.  The child can have a tracheotomy and be placed on a ventilator. Because he will be too weak to swallow, a tube is placed through his abdominal wall into his stomach to give liquid feedings. As Johnson explains, the child can live like this for years,  “in a state of total paralysis, a fully aware brain imprisoned in a body unable to move but still able to feel  all kinds of pain and discomfort. “

Johnson lays out the ethical dilemma: “For a child like Cody, if he were on full life-support, it would almost certainly cause him both physical and mental anguish. What long-term benefit, other than continued existence, would this suffering bring to Cody?  If his family were to choose full life-support measures for him, they would be deciding that the intrinsic value of such an existence outweighs the suffering that would come with it.”

Cody’s parents cannot decide what they want for their son. Cody’s grandfather, “an energetic and forceful man” is certain that his grandchild should be put on life support.   

Finally, Steve, Cody’s father, asks Johnson what he would do if he were Cody’s father.

“This is a question parents occasionally put to me in difficult situations like this,” Johnson reports. “I rarely answer it, at least directly. Most of my intensivist colleagues do the same. This is not because we are ethical relativists; most of us have strong opinions about which PICU choices are right and which are wrong. But we also recognize that the same decision can be right for one family and wrong for another. We try not to influence a family one way or another simply because of our personal opinions.”

Moreover, Johnson writes “When put in this heart-wrenching situation, nearly all parents make excellent ethical choices about what to do. I have also found that when parents make choices that to me seem unwise, it is almost always because they do not fully understand the situation and do not have all the correct information. It is my job to provide that information. That is why it was so important for me to talk to Steve and Karen.”

This is shared decision-making in action. Johnson does not walk away, telling the parents “You must decide.” Nor does he tell them what he would do.  He realizes that he needs to “understand their feelings and fears” about watching Cody die—or alternatively, watching him live on life support.  Johnson also needs to be certain that they understand what permanent life-support would mean—this is the knowledge that he brings to the table.  After talking for two hours, Steve and Karen decide that they do not want to subject their child to a life sentence, tethered to this technology.

“The next morning,” Johnson recalls, “Steve asked me again what I would do if Cody were my son. This time I answered him: ‘I would do as Steve and Karen had done.’”

Now that the decision has been made, Johnson feels that he can express his own values without violating their autonomy.  And answering the question is another example of Johnson’s kindness.

Although  he lives in the high-tech world of the PICU,  he recognizes that “comforting the sick, giving pain-relieving remedies when needed, feeding the patient properly and ultimately waiting out the course of an illness at a patient’s bedside are traditions of care that date back to the time of Hippocrates .. . Our tools have become highly sophisticated, but the bedside drama of watching a sick patient wrestle with illness or injury has, for many children, changed little over the millennia. “

Not long ago, I heard Dr. Donald Berwick, president of the Institute for Health Care Improvement,  describe how, in too many cases, our cutting edge medical technology has created an “abusive sociology.” Technology seems to have gotten in the way of the intimate doctor-patient relationship. The patient himself becomes an object—a carcass to be cured by the technology. If he cannot be cured—the doctor walks away. The notion of caring for the patient—the whole patient, and his family--seems to have fallen away.

Johnson, however, has written a book which reveals how, even in the that inner sanctum of the most advanced technology—the Pediatric Intensive Care Unity—care is as important as cure: “Pediatric critical care is in many ways like an old-fashioned general practice,” Johnson writes, “because, like the old-time general practitioners, I and my colleagues must deal with all aspects of a child’s problem. And minding the high-tech machinery is only one of those aspects. In fact, for some children in the PICU the technology plays only a minor role in their care.  This is the paradox of intensive care: nowhere is humanistic medical practice more important than in medicine’s technologically most sophisticated setting.”

In his book, Johnson shows the same sensitivity as he draws portraits of bewildered parents and heroic, suffering children who, despite everything, sometimes wind up comforting their physicians.

Comments

[Maggie Mahar]

Barry and jana--

Barry-- I'm afraid I don't have answers to your questions.
I've been travelling and haven't had time to do extra research.
But I would be very interested if you, or any other readers find information about other countries.

Jana-- I'm very glad to hear that your child is doing well.

I'm sure Chris Johnson would be too. His point was that this is a decision that only parents can make--and that doctors should not impose their own personal feelings on parents.

[Barry Carol]

Fascinating post.

I have several questions. First, to what extent are sophisticated medical resources made available to families in these circumstances in other developed countries? Second, to what extent are parents offered choices and options within a shared decision making framework? More specifically, to what extent are healthcare systems in other countries willing to pay for extended care for a child who may need a ventilator and a feeding tube for years?

[jana gundy]

as a mother to a LIVING child with sma type 1, on a bipap 24/7, let me just say that Kyle LOVES LIFE and is the HAPPIEST child I know, even happier than my 5 yr old NON SMA child. It's sickening for that doctor to spout crap he knows nothing about.