For Annie’s Video, Click Here
For lecture on Annie at the University of Toronto, click here
For essay about Annie in the Canadian Paediatric and Child Health Journal, click here. (It is under "commentary")
THIS SITE IS UNDER
CONSTRUCTION.
WHO HAS THE RIGHT TO JUDGE QUALITY OF LIFE?
Does a physician have the right to make a unilateral judgement of quality of life and place a "Do Not Resuscitate" order in a Patient's Medical Chart without Patient/Family informed consent?
The moral test of a government is how it treats those who are at the dawn of life, the children;
Those who are in the twilight of life, the aged;
And those who are in the shadow of life, the sick and the needy, and the handicapped.
- Hubert Humphrey
Annie died at the age of 80 days in a most tragic manner at a reputable children's hospital. The Coroner has stated that the final 24 hours of care at the hospital did "not represent an appropriate form of care." We do not know the specific cause of Annie's death. We spent over one year trying to affect change at the hospital and the administration responded to our efforts. Unfortunately, we could not develop a set of plans that seemed adequate, given the nature and implications of Annie's death.
The purpose of this site is to create awarness of medical issues related to the care of vulnerable people.
We believe that there is insufficient emphasis placed on the vital importance of ethics in hospitals. Society's weakest members have no protection and there is a growng call by physicians to obtain the right to place a unilateral "do not resuscitate" (DNR) order on patients.
This means that the doctor can decide that it is not appropriate to save someone's life.without consulting the patient or their loved ones. We believe that this is very wrong.
Our family has been devastated by the events surrounding Annie's death. Our goal is to ensure that no vulnerable person, whether they be disabled or elderly, suffers in the way our daughter did or as our family continues to as we work to make a difference. Decisions regarding level of treatment or end of life must always be made with family consultation.
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Annie’s story should have been very simple.
Annie was born with a genetic condition which usually does not allow for much hope. However, she did not have the most serious afflictions of the condition and we wanted to give her a chance. The condition is associated with physical and developmental disabilities. We valued our daughter's life and wanted to give her a chance as long as she would not suffer unnecessarily.
We fully expected and were assured by the Hospital that if a requirement for surgery arose, the physicians for whom we had much respect and trust would discuss it with us. We fully expected that a decision regarding an appropriate treatment plan (surgery or comfort care) would be made together.
This did not happen.
Annie developed respiratory distress at the age of 80 days and was rushed to the children's hospital from the ER of the regional hospital, specifically for assessment of her trachea.However, no assessment was done and Annie only received treatment for pneumonia.
An effective "Do not resuscitate" order was placed without our knowledge and without consent. The intensive care doctor described an operation that Annie would not have survived because she was fragile. However, we later discovered that no diagnostic tests had been performed.
The final medication report is inexplicably missing.
The Deputy Chief Coroner of Ontario, Dr. Jim Cairns said that the diagnosis of pneumonia was not definitive. Annie had a problem with her trachea but we will never know what it was or whether it required a difficult surgery. We are not aware of any other issues of life-threatening nature.
Through freedom of information legislation, we have recently acquired a copy of the narcotic cabinet sign out sheet. This sheet reveals that the nurse signed out over 30 times the amount of morphine ordered in the final 2 hours of Annie's life. None is shown as wasted or returned. Another nurse withdrew 100 mcg of Fentanyl, a narcotic that is 80 times stronger than Morphine. Again, there was no doctor's order or medication shown as wasted, returned or administered. The final medication report is missing.
We need to create awareness of our issue and the concerns of others of similar issues. Through a Coroner's inquest, a transparent review of the medical system at all levels pertaining to medical care for the vulnerable could be done. A jury's recommendations could lead to protection for society's weakest members and create improvements in clinical ethics. Ethical medical care is a reasonable expectation for everyone.
The trend in medicine is toward "patient-centred care." This implies safer and more ethical care in which the patient and his/her family is a partner in the health care team. We would like to encourage this trend to become an integral part of medical treatment as soon as possible.
Collectively, we need to become involved and to speak up about what is not right in our healthcare system. Ultimately, we will all be vulnerable one day.
Our hope is that by sharing our journey, others insist on being an active participant in their own own or their loved one's medical care and thus demand a medical system that allows for ethical patient-centred care..
Contact: anniefarlow@gmail.com