Instead, her son would come to her in nightmares, asking why she did too much, why she did too little. In another nightmare, several of R.J.'s physicians huddled in a corner, talking among themselves. "He'd be alive," they were saying, "if only his mother had ... " As she strained to hear, their voices dropped to jumbled whispers.
In their fast-paced jobs, even though they have the reward of saving so many lives, there is little time to mourn those who don't make it. Dr. Ken Cohen, a Hopkins pediatric oncologist, said he sometimes goes back to his office, closes the door and cries. Dr. Nancy Hutton, a pediatrician and leader of palliative care at Hopkins, said she will wait until she is alone with a patient and then whisper, "I'm sorry." The children have taught her not to be afraid of death.
Dr. Meghan A. Higman, R.J.'s doctor, sometimes sees something in a patient that makes her think, "This could be my sister's child." But the pediatric oncologist said she copes by chatting on her cell phone long distance with her sisters, by trying to make order in her office, in her garden, and by talking with colleagues about the cases that she can't shake.
And children such as R.J. have taught her more than clinical lessons about cancer. She has learned what is important and what is not.
"When someone cuts you off on the road, I say, 'Does that really matter?'" Dr. Higman said. "It makes me think about what is really worth it."
The stress on caregivers is being partly addressed at Hopkins by debriefings in which staff members are encouraged to be candid and reflect on cases. To talk about R.J.'s care, they gathered a few days after his death for a brown-bag lunch in a conference room on the oncology floor. There were nurses, attending physicians, medical fellows and residents, and the administrative assistant from the nurses station.
At first, no one said much. Then the feelings came out. How tough it had been to deal with R.J.'s mother, who was so demanding about her son's care. How he had been discharged the year before by another hospital with a recommendation for hospice care instead of more treatment. How he had said he wanted to die at home.
Dr. Higman, who knew the case best, took the lead in the discussion. She said Michele had questioned doctors so hard in the later stages because at the outset, physicians on the Eastern Shore had missed R.J.'s cancer for several months. Dr. Higman took on the case because she felt she could give him some worthwhile time. And because R.J. was so sick in his last weeks, his mother, like many other families, felt more comfortable being with the people who had cared for him so long.
After talking about what happened when R.J. died, there was a long pause.
Dr. Lola Stavroudis, the 27-year-old resident who had been on duty at R.J.'s death, asked, "What do we do now?"
It is a question caregivers struggle with. To help them on an emotional level, Reder gave them a sympathy card to sign and told them she would be there to support them.
They talked practical matters, too. After hearing that on a few occasions when R.J. went into crises, Dr. Stavroudis had been reluctant to call Dr. Higman, the staff came up with a fix. They would set up a procedure to allow residents on the night shift to confer with other doctors about patients who are nearing death.
On ethics matters related to end of life, doctors can go to Hopkins' ethics committee. It gets one to two pediatric cases about every other month, said Cynda Hylton Rushton, a nursing professor who co-chairs the hospital's ethics panel. In most instances, physicians are seeking guidance on scope of treatment, or help in resolving disputes among caregivers or between doctors and families.
Rushton, who also co-leads Hopkins' palliative care effort, said it has pushed for more advanced planning in the difficult cases. Last year, the Hopkins ethics committee initiated a hospitalwide policy on "goals of care," to encourage physicians to change their focus for dying patients. Rather than listing what they can't do - such as resuscitate - they're thinking about what they can do, from a holistic approach, to help the patient and the family. Instead of writing "do not resuscitate," some doctors have begun to write "allow natural death."
Around the country, about 40 percent of children's hospitals say they have adopted some palliative care services, according to their trade association. But experts and advocacy groups such as Children's Hospice International say that most kids who could be helped by these supportive services don't get them.
Many people don't even know what the concept means. Palliative care eases suffering through tactics like pain control and counseling, to comfort patients and families. Whether or not the patient dies, the goal is to maintain hope, if not for recovery, then for quality time and a peaceful, meaningful end of life.
Few hospitals have programs as extensive as Hopkins and six other academic medical centers, where doctors and nurses are pioneering strategies that will be published for others to use as models. Philanthropies donated roughly $1.5 million for the project, which is part of the work of the nonprofit Initiative for Pediatric Palliative Care.
Part 4 of 4: Aftershocks
Living on, with heartbreak
When a parent says goodbye to a child, another journey begins. Organized medicine is seeking ways to help deal with the anguish.
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