Mary Ellen Macdonald

Understanding the pain

Child loss is perhaps the most heartrending experience that anyone may suffer; Mary Ellen Macdonald confronts these emotions almost daily. For the past year, Macdonald has worked in the field of pediatric palliative care. In short, she seeks to improve end-of-life assistance for families confronted with the life threatening illness of a child.

The thought of working with terminally ill children and their families was something that Macdonald admits she was initially apprehensive about. “The death of a child is particularly disturbing,” she said. “My supervisor provided some books on the subject; I said I would consider becoming involved if I could get through them without bawling.” Macdonald did bawl, but she also found the subject fascinating.

One of those books was by Myra Bluebond-langner – a social scientist whose work revolutionized the field of pediatric palliative care. Prior to Bluebond-langner’s research, the approach when faced with a child’s death was to pretend that everything would be all right and never mention the “D” word. A fake and uncomfortable atmosphere would develop because the child would invariably sense that something was wrong. “These days we realize that it can be good to talk about death”, said Macdonald, who takes time to visit the homes of these families.

Trained as a medical anthropologist in the final stages of her PhD, Macdonald offers a different approach to that of the medical doctor. “I’m not there to try and fix a clinical problem,” she explained. “I’m there to listen.”

A problem shared may be a problem halved, but it is by listening to these stories that Macdonald is also able to make recommendations that could lessen the ordeal for patients and their families. “The reaction of most people to the hospital is generally good,” recalled Macdonald. “But many people can also point out areas for improvement.”

Later this Fall, under the co-supervision of Robin Cohen (Departments of Oncology and Medicine) and Stephen Liben (Department of Pediatrics), Macdonald will continue her work as a Post Doctoral research fellow at the Montreal Children’s Hospital, with funding provided by a CHSRF-CIHR postdoctoral fellowship. “The work is sometimes overwhelming,” admitted Macdonald, who has a child of her own. “But I feel privileged to be involved.”

For further information, please contact Mary Ellen Macdonald using the Email contact form or by phone at 514 398-6754