Regular readers will recall the case of Annie Farlow from posts we’ve done over the past year (linked below the fold). Today Annie’s family issued a media release following a preliminary hearing at the Ontario Human Rights Commission concerning a claim against the very same hospital at the centre of the Baby Kaylee case that occupied the Canadian media last week. You can see today’s CTV coverage of the story by reporter Reshmi Nair (“Parents aim complaint at Sick Kids”) at their site, and you can read the media release from the family below the fold.
Nearly four years down the road, it is shameful that the family has not received answers they deem, or I think anyone neutrally placed would deem, satisfactory to basic questions about why their daughter died. (An unauthorized DNR? Missing narcotics reports? An hour to call the ICU for emergency intervention at the hospital?) Transparency within the confines of confidentiality is necessary to earn and keep the trust that any parent has to have in those charged with essential medical care. Earlier What Sorts posts, with further links:
The media release follows:
Annie Farlow (May 25- Aug 12, 2005)
Annie’s death has led us to question the policies and practices related to the care provided to infants born with certain genetic conditions related to disabilities.
Our daughter Annie had a difficult prenatal diagnosis. We wished to provide treatment and/or surgery for her, only if it was in her best interest. Otherwise, we wished for her to have a dignified death. We met with several doctors before Annie’s birth and were assured of Sickkids’ policies regarding eligibility for surgery and ethical processes.
On August 12, 2005, our daughter died within 24 hours arrival at the Hospital for Sick Children. The events which occurred during those final hours were inexplicably tragic.
- No call was made to the ICU for an hour when Annie had a respiratory “crash”.
- A “Do Not Resuscitate Order” was entered without informed consent.
- Multiple violations in the procurement and documentation of narcotics are acknowledged to have occurred.
We believe the care Annie received was different from the care received by other babies without certain genetic conditions, especially those related to cognitive delays.
“Sometimes, when we care for children such as Annie who have very complex care needs…communication does not occur in as clear and consistent fashion as we would wish. For that we are very sorry.” Sickkids VP. Seonag Macrae, May 23, 2006
To this day, we do not know how or why our daughter died or whether she could have been helped. As we always had an excellent relationship with Annie’s doctors, we are confused by the events that occurred and by the lapses in effective communication.
“The events of the final 24 hours and the initiation of palliative care together with writing of DNR order…do not represent appropriate forms of care. …it was by no means certain that she (Annie) would have to undergo prolonged interventions such as prolonged ventilation or distressful surgery.” Coroner’s Paediatric Death Review Committee Report April 13, 2007
Eventually, we came to understand that Annie exhibited progressive, critical indications of respiratory failure from the 5th day after birth onward. We had been told that testing would be done later, “if symptoms worsen.” However, for some reason, no testing, curative treatment or palliation was ever offered.
“It is reprehensible and contrary to the basic tenets of the good practice of medicine that this infant was left to endure continual and progressive asphyxiation. The medical treatment provided to Annie by the medical system did not reflect standards of practice, professional codes of ethics and family centred care. Failures of this kind are not expected of pediatricians and pediatric specialists in any hospital, must less a hospital dedicated to the special needs and requirements to treat sick infants and children.” Dr. Paul Byrne, Neonatologist, Expert Medical Review
Despite many meetings with the Hospital we were never provided with an adequate explanation or understanding of what happened. Despite great effort, we were unable to develop an effective remedy in the collaborative manner we sought to ensure better communication for the next family in a similar situation.
Subsequent to the undertaking of exhaustive research related to the ethics, legal and health policy issues of the matter, we have come to the conclusion that there appears to be good reason to be concerned about the systemic treatment provided to infants with certain genetic conditions, especially those related to disabilities for which prenatal testing and termination are available.
We have made a Human Rights Complaint in an attempt to explore the issues through the lens of human rights and to review the care afforded to the most vulnerable citizens of our society. The High Commissioner’s Office (Geneva) has requested to follow our case.
Our goal is to ensure that the Hospital for Sick Children is the best hospital it can be. We desire this not only for all of the special children and their families, but also for the physicians. We want to be assured that realistic policies are put in place and steadfastly followed so that the Hospital can proudly claim to have the highest quality in both ethical standards and patient care.
Barbara and Timothy Farlow
Sue Macrae Annual Lecture on Ethics and Patient-Centred Care, “Making Tough Decisions Together; A Families Perspective of the Vital Importance of Ethics and Patient-Centred Care.” University of Toronto, Joint Centre for Bioethics, June, 2008.
Canadian Down Syndrome Society, National Conference, “The Tragic Healthcare Experience of One Infant with Predicted Disabilities; Advocating for Understanding and Change” Ottawa, May 2008.
World Alliance for Patient Safety, “Annie’s Story,” Geneva, Switzerland. July 2007
Ethics Matters, International Conference of Clinical Ethics and Consultation, “Why Ethics Matters, One Family’s Perspective” Toronto June, 2007