Learning from the life and death of Annie Farlow

Parents of children with severe medical conditions face many fears about their children's quality of life and long term prospects and open communication with a skilled and empathetic medical team is an anchor support. Parents of children with severe cognitive deficits may face another fear, however, that hospital care priorities or individual staff prejudices (however benevalently framed) will impact their child without being transparent in the care discussion.

Annie Farlow arrived in this world to a loving family, aware of and prepared for the cognitive and developmental impacts of her condition. Barbara and Tim Farlow's journey to understand the circumstances of Annie's death in an unnamed Toronto pediatric ICU challenge us to look at one of the most disturbing fears of parents of seriously challenged children:

"Do some doctors play God with disabled kids? Are treatable but possibly fatal problems, such as digestive obstructions or respiratory difficulties, sometimes left to take their course when a child has a condition like cerebral palsy or Down syndrome or, in Annie's case, Trisomy 13? Do some medical professionals mask their own quality-of-life opinions by giving parents only the worst-case scenario, leading to what Farlow calls "misinformed consent"? What can families do to change things?... As a member of the Canadian Patient Safety Institute and Patients for Patient Safety Canada, part of the World Health Organization's Alliance for Patient Safety, Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating prolonging life at any cost, she emphasizes. It's about patient-centred care in which the family is included in an informed decision-making process. Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable."

You can read the full article by Helen Henderson and view the family website that remembers Annie and reminds us all that the ultimate test of patient and family centred care is its application to the most vulnerable of our developmentally challenged children.