How Annie's short life inspired her mother's mission
By Helen Henderson, Toronto Star - August 30, 2008 Link to article
|Barb & Annie Farlow|
Annie had a chromosome disorder that would have affected her development. Her family, including two brothers and two sisters, knew all about it long before she was born.
They knew she might not live into her teens, talked about the inevitable challenges and sacrifices and welcomed her into their lives.
So when Annie died of what her parents believe might have been a treatable respiratory condition, they started asking questions. Now, Barbara Farlow is front and centre in an international crusade.
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?
But as she raises these questions in international forums, Farlow never names the hospital – because, she says:
"This could happen anywhere."The Farlows have many concerns about how Annie's respiratory condition was regarded from birth. They were with her when breathing problems sent her into the critical care unit just over two months later. After she died, they found themselves without answers.
Among other things, the family questions what drugs were used and how a "Do not resuscitate" order was issued without their informed consent.
The hospital has written to the Farlows acknowledging it "could have improved upon" communication between the family and the staff who cared for Annie and that "we could have done better in terms of providing end of life care."
But it also says:
"The best time to sort out these issues is before ... one is trying to make the appropriate decision in the middle of a medical crisis."The family's appeals for a coroner's inquest have been denied.
In her crusade for change, Farlow has been across North America and Europe, from the University of Toronto to the World Health Organization and the United Nations High Commissioner on Human Rights. She has talked to hospital associations, medical schools and advocacy groups about Annie and the need for doctors to listen to the wishes of patients and their families.
Hospital and government policies emphasize heeding patients, she says. But when push comes to shove, it's the bottom line that governs. Overburdened and underfunded health-care systems lead to clinical priority-setting, Farlow says. "One choice comes with a higher price ticket." Under those rules, disabled people lose in the court of public opinion.
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.
Meanwhile, she takes pride in the fact that Annie has been nominated as an unsung hero to be honoured this fall by Community Living Ontario "because she fundamentally affirms the value of every human person and that everyone deserves whatever care and support is needed to live, flourish and contribute to the happiness of their family and community."
Reach Barbara Farlow and Patients for Patient Safety Canada at: email@example.com.
Helen Henderson is a freelance writer and disability studies student at Ryerson University. Her column appears Saturdays. firstname.lastname@example.org
Parents need to be prepared
How can families help disabled children in the hospital? Barbara Farlow recommends the following:
- Develop a plan beforehand in writing, detailing how you love your child and want her to live but don't want her to suffer.
- Be very explicit.
- When speaking with doctors, be very clear. Say: "This is what we understand you to be doing. Is this correct?"