Professor Barbara Sourkes PHOTO: OWEN EGAN

The privilege of working with children faced with death

BRONWYN CHESTER | There is little in her office to indicate that Barbara Sourkes spends her day working with children living with a life-threatening illness. It looks like an ordinary enough office in a Montreal hospital: two desks -- one hers, the other belonging to the social worker with whom she shares the modest space -- three chairs, some posters and children's drawings on the wall. Then you see the stuffed toy sitting on the computer monitor -- a gift for a child, says the child psychologist -- and you notice a few well-worn stuffed toys on another shelf. Later in the interview, Sourkes, an assistant professor of pedia-trics, opens three drawers in the office closet: one full of toy figurines, furniture and play versions of implements from a hospital; another holding a selection of real medical supplies: syringes, intravenous tubing, bandages -- familiar accoutrements to the child in a hospital; and a third full of drawing materials. These are the tools of her trade; that and Sourkes' 20 years of experience in this line of work, work that she considers rich and poignant -- a "privilege" to be doing for "it involves being with families at such a crucial time. "This is not dark work," she emphasizes. "The reality may be black or dark grey but the kids aren't. They're adorable." And they inspire Sourkes with their resilience, their psychic resourcefulness, their integrity and courage. Living with the threat of death and having to deal with a medical environment makes children mature quickly, she says, but they don't stop being children. "The real resilience is that these kids are thrown into unbelievable circumstances and they still maintain the child within. A child will say: 'Tomorrow I'm getting chemo [therapy], then go play like any normal 10-year-old. They are able to live in both worlds." Through play, drawing and interpreting dreams, Sourkes helps these children express and deal with what they experience. The child who is traumatized by medical procedures that may be invasive, painful or disfiguring will, for instance, initially fear the medical supplies, says Sourkes. After a few sessions, however, the child will venture to touch them, eventually using them on a stuffed animal. "As a child gets comfortable with the medical stuff through play, they tolerate them better in real life. It gives them some control." Through drawing mandalas -- circles in which a child will draw sections in different colours -- feelings that are hard to verbalize may be symbolized. "The life of a liver transplant boy," reads the title of one mandala, drawn recently by a 12-year-old, that Sourkes pulls out from her files. A black triangle indicates endlessness, a yellow one his gratefulness for being alive, pink for hating the feeling of having no control, and mauve for the invasion of his privacy which is part of hospital life. "Lots comes out in a drawing like that," says Sourkes, who incorporates some art therapy techniques in her work. In a free-form drawing, a 14-year-old boy infected with HIV has depicted: "Secrets burn. That's how it feels in my heart." The family of this child, a hemophiliac infected by tainted blood, hasn't yet revealed their son's affliction to outsiders. When Sourkes began working in Boston at Children's Hospital and the Dana-Farber Cancer Institute, after completing her MSc and PhD at the University of Pittsburgh, her clientele were children living with cancer. (Some of their experiences are poignantly and insightfully told in Sourkes' 1995 book, Armfuls of Time (University of Pittsburgh Press). Today, at the Montreal Children's Hospital, where she has worked for the past 10 years in the Intensive Ambulatory Care Service and Palliative Care Service, her clientele includes children suffering from AIDS, either because they are hemophiliac and were infected with HIV-tainted blood or because their mothers have/had AIDS; children with congenital thalassemia, a potentially fatal blood disorder; and children who have had heart or liver transplants. Something that has given Sourkes more options in her work than she had at the outset is the progress made in the discipline of palliative care. "The concept of palliative care comes up earlier now," she says. "It's a decision regarding the quality of life," she says, adding that under palliative care, a child may live at home, sometimes for months, functioning as normally as possible, with pain under control, possibly continuing with school, being surrounded by friends and family until she or he dies. Still, the decision to cease treatment is a difficult one, especially for parents. "Part of their education is to learn to listen to the child. Children have a wisdom of the body," says Sourkes, explaining that they know when enough treatment -- which can be painful, invasive and sometimes ineffective -- is enough. "Sometimes I have to mediate or clarify to each member of the family so each can hear where the others are at," says Sourkes, adding that conflicts may exist between the child's own desires, based on knowledge of her body, and the desire not to hurt or disappoint her parents. "It can be very painful for the caregiving team when they see a child's had enough and the parents want to keep on trying. It's a situation not always well resolved, but there's a growing awareness of the psychological issues involved and seeing palliative care as a positive option," says Sourkes. Sourkes credits the interdisciplinary nature of the caregiving teams (nurses, physicians, social workers, child life specialists, physio- and occupational therapists, psychologists/psychiatrists and clergy) in her unit with being able to ensure a sensitivity to the needs and experience of the 350 children they work with at any given time. "There's lots of overlap in the roles, so I'm not the only one doing this work. [In team meetings] I will talk about children I may never meet." Nevertheless, Sourkes laments the fact that her work is called upon more often in times of crisis than as a preventive or normal part of the care of a child confronted with the pain, loss and disruption of his or her life imposed by illness. "Psychological support is considered a luxury item." Still, it's work that satisfies and evolves, and she is pleased that pediatric palliative care is finally being given its due. Next September, the International Congress on Care of the Terminally Ill will include, for the first time, a stream on children. Sourkes will be leading one of the five pediatric workshops, her subject: "The Psyche of the Seriously Ill Child." Her most recent book, Les enfants en deuil (Éditions Frison-Roche, Paris), co-written with French psychiatrist Michel Hanus, has just come out and she looks forward to seeing the French edition of the combination of Armfuls of Time (already published in Japanese and Italian) and an earlier book, The Deepening Shade (UPP, 1982), to be published next year. Her books in English, simply and directly written and free of jargon, have appeal for both the lay reader and professionals in Sourkes' field. Their eloquence bespeaks the psychologist's desire while an English major at McGill to work with both words and children. It was after taking a course on child psychology, given by the late Sam Rabinovitch, that Sourkes heard her calling and switched to psychology. But it was only as a graduate student, when she took a seminar on living with a life-threatening disease given by someone who had leukemia, that she was "captured." Subsequently, Sourkes did an internship with children living with cancer. "Once in it, I just loved it. Twenty years later, here I am." Yet the inevitable question can't go unanswered. How does anyone working in this field deal with the sadness, the loss, the anger, the grief? "Those who have worked in this field for a long time have a kind of thermostat," replies Sourkes, explaining that "you have to find a distance where you can still engage in the work but preserve yourself. It's very important not to lose your boundaries." Sourkes' method of maintaining those boundaries: "I work to keep a good personal life."