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(HealthNewsDigest.com) – Every doctor carries at least one patient in his or her head — a memory of a difficult case, perhaps, or of a tragic outcome. And sometimes there’s a patient who simply touches the heart.
Elliot Krane, MD, first saw the 8-year-old boy more than a decade ago.
The child, suffering an aggressive brain tumor, was admitted to the pediatric intensive care unit at Seattle Children’s Hospital, where Krane was then an attending physician. He had been ill for several months. Chemotherapy and radiation didn’t stop his tumor; he was nearly immobilized by the cancer’s takeover of motor centers in his brain and spinal cord, though his intellect was intact.
Then, not long before his PICU admission, the patient stopped breathing.
“He had required resuscitation, and he was on a ventilator,” recalled Krane, who is now chief of the pain management service at Lucile Packard Children’s Hospital. “I really thought his parents should let go and allow us to withdraw life support.”
“I remember being disappointed by the oncologist,” Krane said. “He was taking what I call the ‘menu approach.’ Rather than telling the parents, ‘The fight is basically over; we should be providing comfort measures,’ the oncologist was saying, ‘We can do A or we can do B or we can do C.’ And giving the parents carte blanche to choose between the options.”
Krane was concerned that the parents needed guidance from the oncologist to avoid interventions that would prolong their son’s suffering. Without such expert advice, Krane said, many parents worry that a decision to stop trying to halt a terminal illness means they are abandoning their son or daughter.
“There’s too much guilt in just saying — quit,” he said. “Parents need to have some indication that this is OK, or even more than, ‘It’s OK,’ to hear, ‘This is what I would do for my own child.’”
But in the meeting, Krane kept his thoughts to himself. The oncologist had a long relationship with this family; he did not. And the parents, in spite of the knowledge that their son would die of his cancer, opted for an intense course of treatment.
“So these parents were going full-court press,” Krane said. “And we got their son off the ventilator, out of the ICU and out of the hospital, and he went home. With his horrible prognosis.”
In the vortex of the intensive care unit, Krane forgot about the patient. Six months later, the boy and his family were back.
This time, it was clear that the patient’s death was imminent. Krane spent a lot of time with the family during their son’s final hospital stay. Listening to the grieving mother and father describing the months after Krane had helped get their child off the respirator — when their son was at home, not in pain, not suffering and able to enjoy time with people he loved — Krane was humbled.
“They told me that the last six months of the boy’s life had been the best six months they had,” he said. “They thanked me.”
The experience now informs how Krane approaches terminally ill patients and their families in his work as part of the Packard Children’s palliative care team. In addition to reminding him to respect patients’ values — even when they differ from his own — the memory of this young boy illuminates for Krane the difference between his role and that of the mothers and fathers of dying children.
Krane still believes that a physician’s guidance is important in making difficult end-of-life decisions. But he also recognizes that parents need enough time to feel confident that the choice to stop trying for a cure is the right one.
“Parents learn to accommodate to their child’s death,” Krane said, “but they never get over it, ever.
“Whether the child dies this week or next month can have huge ramifications for the rest of their lives,” he added, “and they have to feel 100 percent confident that they’re making the best decisions possible.”
Stanford University Medical Center integrates research, medical education and patient care at its three institutions – Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children’s Hospital. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu/.
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