By Cassidy Bugos
Editor’s Note: In Part I of Annie’s Story (https://www.lifesitenews.com/ldn/2008/jun/08061911.html), Bugos told the story of Annie Farlow, a girl who was born with Trisomy 13, and who died at only 80 days of age, devastating her parents and siblings. In Part II Bugos relates the Farlow’s experiences, after Annie’s passing, with the health-care staff who had cared for their daughter, and the disturbing discoveries they made about the circumstances surrounding their daughter’s death.
TORONTO, ON, June 20, 2008 (LifeSiteNews.com) – The Farlows tried to focus on funeral arrangements.
“Within days, I sensed that something wasn’t right,” relates Annie’s mother, Barbara Farlow. “I didn’t think that the decision-making process was appropriate. How could it be that we were told Annie’s trachea was fine and she had pneumonia in the emergency department, and then 24 hours later this diagnosis had been reversed in the ICU? We had been exhausted, and I felt that we had been forced to make a decision in a coercive and inappropriate manner.”
Barbara continues, “I told a friend that I thought it was possible that the three physicians had all looked at the x-ray, saw no evidence of pneumonia, only a severely narrow and collapsed trachea and agreed, ‘looks like pneumonia’. In other words, I considered that the option of not offering surgery to a child with Annie’s genetic condition was unanimous and did not require discussion. My friend said, ‘Those are crazy thoughts. Such a thing could never happen’. I agreed and yet it was the only thing that was logical.”
The Farlows ordered the medical records: a huge stack of papers that, to her, Mrs. Farlow said, might as well have been written in French. A nurse with ten years of experience from the same critical care unit where Annie had died offered to review the medical records for the Farlows, to put their minds at ease.
After two hours of reviewing the records on her dining room table, the nurse turned to Mrs. Farlow and said, “I’m sorry, but what happened wasn’t right.” Hours before Annie’s death, a “do not resuscitate” order had been placed in Annie’s records, without her parents’ knowledge or consent.
“This revelation result[ed] in the most intense and hurtful violation that I have ever experienced,” said Mrs. Farlow. “There had never been a plan of treatment discussed with any physician. How could this have happened? We were outraged, confused, shocked, and disappointed . . . in the ensuing months, we were to discover that it was much worse than this.”
The Farlows had a second nurse review the records.
“We were very upset by the information he provided to us after his review”.
“Questionable IV fluids were administered in the ER and it appeared that Annie did not have pneumonia as I had suspected. The blood work did not reveal infection and the records stated, ‘good bilateral air entry’ and ‘no consolidations.’ These are indications that the acute respiratory distress was not related to pneumonia.
“The records showed that Annie had been bagged (resuscitated) for 1.5 hours and our friend said that this is not supposed to happen. He said when a patient is being resuscitated there is a rush of nurses and doctors trying to stabilize the patient and transfer them to the Critical Care as soon as possible. The patient is not left alone with the respiratory therapist for an hour with the family standing [to] watch. He said that he thought the intention was likely that we would see Annie suffer and come to our senses and tell them to stop resuscitating and to let her die.”
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More information surfaced. There was no diagnostic basis for the operation the intensivist had described to the Farlows; there were several less severe possibilities. The pulmonologist who had originally examined Annie at three weeks, concerned for her trachea, had ordered several non-invasive tests. They had been ordered, and then cancelled without the Farlows’ consent. As well, Annie’s final medication report was mysteriously missing from the records.
The Farlows requested a meeting with hospital staff. They asked the intensivist why the “do not resuscitate” order had been placed without their consent. He said he thought the Farlows “were articulate and well informed, and there had been time to have a discussion.”
The Farlows had expected apologies and explanations that would finally put their minds at ease. No apologies were given. No excuses were made for the misdiagnosis of pneumonia, the delay of transfer to the Critical Care, the silencing of the alarms, the medication violations and the DNR order without informed consent.
“We felt that we [had been] systemically deemed to be incapable and incompetent by hospital staff, without benefit of judge or jury. Those who thought themselves better suited to make choices for Annie had knowingly allowed her to die a horrible respiratory death without any concern for her discomfort.
“Had we known that even a diagnosis for surgery would be withheld…Annie’s death would not have been traumatic. Our children, who had made so many sacrifices for their sister, would have been present, and would have been able to say their goodbyes. This opportunity had been denied to them. We were denied the choice to prolong our daughter’s life. We were also denied the ability to make choices to manage her brief life before death. Our only goal was to know that we had made a difference. In the long run, we knew that we could find peace by knowing that learning had occurred, and ethics and communication had occurred.”
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Over the next year and a half, the Farlows dialogued with the Coroner and the Hospital Board. Further requests to meet with the physicians in a collaborative “no shame, no blame” atmosphere were refused.
As a last resort, after two years, the Farlows appealed for a coroner’s inquest, made a human rights complaint, and filed in small claims court. “Lives like Annie’s,” said Mrs. Farlow in her lecture, “or any vulnerable person’s, are worth very little in our legal system. The claim was for $10,000. Clearly, this was about principle.”
Along the way, Barbara Farlow learned a fair amount about how the hospital ethics system works.
“All this time I had considered that in a hospital, a physician was acting ethically if hospital policies were being followed …. Yet it seemed that policies meant little. If the policies did not guide treatment decisions at a hospital, what did?
“It was then that I learned about the Ministry of Health’s control on hospital operations. It seemed that the Ministry can choose to reduce the number of beds to meet their budget, and nobody asks questions. Who gets the bed? How many priority decisions are being made, and on what basis are they being made? Do human rights violations occur? No one seems to know, and disturbingly, nobody seems to ask.”
Mrs. Farlow went on to relate how, during the last two years, in her struggle to account for her daughter’s death, she has unwittingly come face to face with the government’s bias to prevent the birth of unhealthy children for the sake of reducing health care costs. “Few people know that the termination rate for unborn babies determined to have Down’s Syndrome is thought to exceed 90%…Society should never gain economically by these terminations.”
Two government-initiated agencies she has encountered are the Fetal Alert Network, a pro-genetic screening agency, and the Critical Care Strategy, an initiative dedicated to better-utilizing intensive care resources. Neither initiative admits any public involvement, nor does either initiative consult with disabled persons or families, disability groups or people with human rights interests.
“As for the effect [of these initiatives] on treatment decisions for newborns, this is a mystery because of the underreporting on infant deaths in Ontario. No infant mortality rates have been produced for several years.”
After two years of searching for answers, the discovery of a system biased against her disabled daughter is all that sheds light on the mysterious circumstances of her baby’s death. “I now believe that Annie’s plan of treatment was very likely predetermined by priority-setting strategies long before she was born,” Barbara Farlow concluded. “There were no choices, and hence there was no discussion, and no consent. I now believe my husband and I had worked so hard with the hospital staff to try to fix something that was meant to stay broken.”
Following Farlow’s lecture, during the question and answer period, one woman in the audience shared how, after more than thirty years of caring for her adult trisomy-13 daughter, she fears the abuse she and her daughter receive during routine hospital visits more than she fears the possibility of her daughter’s death. Another young woman, who introduced herself as the mother of a daughter with Down’s Syndrome and two sons with autism, noted the extreme pressure doctors routinely give pregnant women to diagnose genetic illnesses preterm so that the women can have the “chance” to choose termination if their child is believed to be afflicted.
Truth be told, Annie’s story is only one of countless similar stories happening all across the world. Each of them is the result of the “quality of life” ethic that is making swift inroads into Western health-care systems. This is an ethic that increasingly marginalizes family members from the health-care decision-making process, and leaves doctors and nurses who presume to “know better” deciding which lives are “worth” saving. In Annie’s case, the very people that her parents trusted had their daughter’s best interests in mind, independently decided that in fact her life was worth less than other lives, and left her to die a slow and painful death, in the process robbing her siblings of the chance to say goodbye to the sister they dearly loved. This was not the first, nor will it be the last time that such a story plays out in our hospital wards.
See the Annie Farlow website including touching photos and video footage of Annie
https://www.lifesitenews.com/ldn/2008/jun/08062010.html
The webcast of Barbara Farlow’s lecture is available in a link on this page:https://www.livingwithtrisomy13.org/memoriesofAnnie.htm