Aggressive care not always best for dying kids
Dr. Frank Oski, the late chief of pediatrics at Johns Hopkins, didn't seem like a sentimental man to me. But he coughed back a sob at a medical school lecture as he recalled one patient. The child had cancer and was dying. Despite the poor prognosis, the parents chanced an experimental chemotherapy instead of accepting a peaceful death. The painful therapy proceeded against the child's wishes but didn't work. Desperately ill in the intensive-care unit, the child spoke just before dying. His last words to his parents were, ''I hate you."
Though ancient oaths bind physicians to ''first, do no harm," it's a hopelessly naive promise. Oski and the parents made a child suffer as they tried to save his life. Heroic treatments have always been dangerous; one simply hopes the lethal power gets directed at the disease and not the patient. But few treatments are targeted with absolute precision, and children suffer collateral damage more frequently than adults.
Why? Unlike that of adults, the care of children with serious illness often focuses on finding a cure instead of improving quality of life. Since they have an entire lifetime ahead of them, children have more to lose. Thus, parents and physicians may gamble on high-risk treatments more willingly. This aggressiveness comes at a price.
Roughly 25 percent of elderly patients have ''moderate to severe" pain at the end of life. In contrast, oncologist Joanne Wolfe and colleagues found that almost 90 percent of children dying of cancer suffered ''a lot" or ''a great deal." In cases when the treatment instead of the cancer killed the child, suffering was worse.
In her 2000 study, Wolfe wrote: ''Considerations of the toxicity of therapy, the quality of life, and growth and development" of a child are ''usually secondary to the goal" of a cure. To save the village, that is, we sometimes may destroy it.
Increasingly, doctors are less likely to offer a peaceful death and more likely to recommend invasive treatment. Last fall, I was called to assess a heart defect in a newborn who also had serious lung and brain problems. The baby was on a respirator. The physicians gathered in the attending neonatologist's office. The child needed a major operation and possibly months of hospitalization. He was at high risk for mental retardation. When I suggested that the option of a peaceful death be mentioned to the parents, the neonatologist balked. Furthermore, she said if the family refused treatment, they might even be brought to court.
In the 1980s, ''Baby Doe" regulations forced treatment of potentially handicapped infants after one couple refused surgery for a deformed airway in a baby with Down syndrome. Though the US Supreme Court didn't uphold the law, the regulations encouraged many doctors to shy away from so-called ''comfort care only" practices. Also, the Child Protection and Abuse Act of 1984 compels life-sustaining treatment in infants with disabilities except in futile circumstances. Because ''futile care" can be a nebulous term, neonatologists like the one who consulted me are hesitant to withhold invasive procedures.
The interesting thing is that physicians might refuse the same invasive therapies they sometimes offer and even compel. Recently, a study in the American Journal of Cardiology asked pediatric heart specialists to pretend their own newborn had a particularly severe heart defect. Fully one-third of doctors would elect a peaceful death with no surgery, and only one-third said they'd pick invasive treatment. Yet today, the same cardiologists' centers almost uniformly don't allow a peaceful death without surgery.
According to the journal Pediatrics, about a half-million American children suffer life-threatening illnesses yearly, and about 50,000 die, mostly in hospitals, and there, mostly in intensive-care units. The National Hospice and Palliative Care Organization reports that less than 1 percent of all hospice admissions are children younger than 17 years, so few hospices develop expertise in pediatric hospice care. Many children with complex illnesses requiring, for example, transfusions, intravenous nutrition, or breathing machines, aren't reimbursed for hospice care under exiting insurance policies.
Thus, many factors -- medical, legal, and financial -- make doctors lean away from allowing ''good deaths" for critically ill children. How, then, can doctors help improve care for these children? Generally, we're poorly taught to handle death and dying. Only one in four residency programs has courses in end-of-life care, and fewer than one in 10 trainees has provided hospice care.
The result is that doctors avoid talking about death. When they realize a child's condition is terminal, for example, oncologists wait an average of three months before telling parents, according to the New England Journal of Medicine. These delays correlate with reduced hospice care and poorer home care.
No physician wants to scale back lifesaving treatment. Advocates of end-of-life care don't want to deny dramatic surgeries or experimental chemotherapy. Instead, they want to highlight a child's quality of life and not just the quantity of life. In one touching letter, a mother whose son died in hospice at home wrote, ''I held him in my arms when he entered this world, and I held him in my arms as he left us." In another case, a teenager who chose ''comfort care" for cancer didn't stay in the hospital, but ''went fishing, dancing, and roller-skating covered with fentanyl [pain-control] patches."
Pushing aggressive treatments without mention of death until the last minute leaves little time for anticipatory grieving. Suddenly, a child dies and families -- with little time to prepare -- exit the hospital and never again hear from their child's doctors.
Not so long ago, physicians often wrote condolence letters to families after a death. Now, doctors infrequently contact patients after death despite being involved (in some cases) for years in a child's care.
In a column that ran in the New England Journal of Medicine in April 2001, Dr. Susanna Bedell wondered why doctors lose contact after death, especially when ''we share with [families] some of the most profound moments of life and death." According to surveys, many physicians don't attend patients' funerals. We often overlook death both before and after it comes.
The author of several magisterial textbooks in pediatrics, Oski wrote in the July 1993 Contemporary Pediatrics about a supernatural vision he had. After a day comforting a dying patient, Oski awoke at 3 a.m. to an angel dressed in white. The angel, wrote Oski, explained that all children are told before death that ''their burdens are transient" and that their illness allows others to ''stretch our humanity to love children who are far less than perfect."
Ultimately, though, we physicians shouldn't just leave that reassurance to angels, but strive to improve our own care of dying patients.
Dr. Darshak Sanghavi is a
clinical fellow at Children's Hospital and Harvard Medical School. His
e-mail address is sanghavi@post.harvard.edu. 
