“After the Error: Speaking Out About Patient Safety To Save Lives will be a real eye-opener for most of us." —Alan Shanoff, Toronto Sun
After the Error: Speaking Out About Patient Safety to Save Livesby Susan McIver, Robin Wyndham
Moving stories underline serious issues with medical errors and empower patients Medical errors kill 24,000 Canadians each year, adversely affect hundreds of thousands, and cost close to two billion dollars. Victims of medical errors and their families who speak out often do so at considerable emotional, psychological, and financial expense. But their willingness
Moving stories underline serious issues with medical errors and empower patients Medical errors kill 24,000 Canadians each year, adversely affect hundreds of thousands, and cost close to two billion dollars. Victims of medical errors and their families who speak out often do so at considerable emotional, psychological, and financial expense. But their willingness to share their harrowing stories has helped to lay the foundation for numerous patient safety programs and continues to identify problems, provide solutions, and raise awareness. After the Error is a collection of true stories from across Canada, and the first book anywhere to recognize what patients affected by medical errors, their families, and immediate healthcare providers have done to prevent others from enduring similar experiences.
“After the Error: Speaking Out About Patient Safety To Save Lives will be a real eye-opener for most of us." —Alan Shanoff, Toronto Sun
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After the Error
Speaking Out About Patient Safety To Save Lives
By Susan McIver, Robin Wyndham
ECW PRESSCopyright © 2013 Susan McIver and Robin Wyndham
All rights reserved.
A CHILD LIKE ANNIE
Annie Farlow's 80-day-long life affected her parents and siblings in ways they never could have imagined. Her family, who had no previous experience with disabled children, loved Annie with all their hearts. When she died in August 2005, their grief was compounded by the discovery of circumstances associated with her care, which shattered their faith in her doctors and their hope that Annie would be seen as a person and not just as a syndrome. The Farlow family's experience answers the question that is so often asked of parents, both before and after a birth associated with genetically different children: Who wants a child like that anyway?
Annie's brief life transformed her mother Barbara into an internationally respected parental voice in pediatric ethics. Through Barbara's work, Annie's story led to the largest survey ever of parents who have children with similar disabilities and the inclusion of those findings in the medical literature, which was previously lacking the parental perspective.
Barbara has consistently encouraged a much-needed and important discussion about the issues of medical care provided to, or withheld from, infants born with genetic differences, both in hospital and in the broader medical community. She recognizes and respects that some parents might make different choices than she did when they learn that their unborn baby will have disabilities. Families may also differ in their attitudes toward withholding treatment. Either way, their wishes should be respected through a process that is transparent and accountable.
Barbara joined with leading health-care professionals, patient advocates, ethicists and policy makers to tackle questions made especially difficult in this time of increasing resource scarcity in health care. When is it appropriate to limit or withdraw potentially beneficial treatment? Who should make those decisions? How should decisions be made?
The Farlows wanted Annie to be provided with the same treatments and interventions as any child without a genetic label or disability would be offered. They believe doctors made unilateral decisions which should have been made openly and in consultation with them. As a result of the secrecy in which decisions seem to have been made, Annie may have been denied not only an opportunity for a longer life, but also timely palliative care.
The author of numerous publications in prestigious medical journals and other respected health-care publications, Barbara has spoken to scores of hospital associations, medical schools, advocacy groups and ethics conferences. She has made presentations to the United Nations High Commission on Human Rights, the World Health Organization and Pan-American Health Organization. Barbara appeared before the Canadian Parliamentary Committee on Palliative and Compassionate Care, and her husband, Tim, spoke before the Ontario Provincial Parliament's standing committee on social justice.
In early 2005, Barbara and Tim Farlow were faced with a choice that would shape the rest of their lives. High school sweethearts, the Farlows had five children at home who excelled in school and sports. They were financially comfortable, enjoyed excellent health and were delighted when they learned a new baby was on the way.
Prenatal screening at 21 weeks revealed that their baby girl had a condition called trisomy 13. Many children with this genetic condition die at or shortly after birth, primarily from brain and heart anomalies. Some, however, can live with varying levels of disability for years, even into adolescence.
The initial response from Barbara, who has degrees in engineering science and business administration, was to find a rational solution. Lacking any experience with disability, she and Tim began asking themselves tough questions. Would they be able to make the commitment to such a needy child? What about the impact on their other children? What if Annie died suddenly after only a few days, weeks or months? Would it all have been worth it?
Their thinking began to change as they investigated the world of families with trisomy children. They expected to find distraught, depressed parents exhausted from caring for children who merely existed and had no value to themselves or anyone else. They instead found that parents felt their lives were enriched by having such a child. Most of the disabled children were happy and progressing at their own pace. Siblings were spontaneously affectionate with and protective of their disabled brother or sister. Whether the parents had chosen not to terminate pregnancy or had received a diagnosis after birth, they all appeared to take great delight in their children. Upon the death of their disabled child, families were devastated.
The obstetrician asked Barbara why she would continue the pregnancy when she knew the baby was going to die. "I was unable to formulate a coherent response at the time," Barbara said several years later. "Now I can. From the moment I knew of my baby's existence, I loved her unconditionally. We would take her journey together, as a family. We named our daughter Annie."
The Farlows were fully aware that most parents in their situation would not have made the same choice. They also knew that doctors might not agree with their decision or understand it. Would Annie be seen as a baby requiring attention, and not as a syndrome, when needing medical care in the future? Would the doctors value her life as much as that of an able-bodied child? Barbara and Tim did not want treatment that would be burdensome or futile, and they did not want Annie to suffer. They did, however, want to ensure that treatment would not be withheld from Annie on the basis of her disability alone.
Seeking clarification, Barbara and Tim met with doctors from the cardiology, genetics and bioethics departments at the children's hospital before Annie's birth. They were assured that Annie would be treated like any other child. Treatment, including surgical intervention, would be given as required. The Farlows would be informed of risks and benefits and any decision would be theirs. They were told a policy was in place to deal with ethical conflicts should any arise. In fact, the policy that outlined the determination of levels of treatment and the process for resolving ethical dilemmas between families and doctors was described to them in detail. Later, after Annie's death, they would read what the bioethicist had written about them at that meeting: "Calm, articulate, logical, frames in best interest logic. Want to give baby every opportunity for quality of life ... don't want life of suffering."
Annie was born at full term, May 25, 2005, weighing seven pounds, with Apgar scores of 8 and 9. Unlike many babies born with trisomy 13, Annie could see and hear and had normal strength. She breathed well on her own and did not have the common lethal brain and cardiac anomalies.
Late one night, while still basking in the recent news that Annie had a reasonably good prognosis, Tim chatted with a young doctor who had dropped by. The doctor wanted to know why Tim and Barbara wanted a disabled child to live. Tim had no patience with what the doctor was suggesting. "She's my daughter and we love her," he curtly replied. The topic was never brought up again.
Annie did have hypoglycemia, which kept her in hospital for her first six weeks. She was fed a high-calorie diet through a nasal gastric tube and given a small quantity of oxygen through nasal prongs. During this time, either Tim or Barbara was always with Annie. They had many opportunities to communicate with the medical and nursing staff and felt they had developed an excellent relationship with the primary pediatrician.
Barbara recalled an important meeting: "During our stay, there had been a team meeting. We expressed our wishes to consider whatever treatment Annie might need to prolong her life and nobody disagreed. We kept a large envelope with us at all times, filled with information and stories of other children like Annie just in case anyone needed to better understand our position. However, no issues arose and we had no reason not to believe that we were on the same page as all the clinicians."
Annie's siblings welcomed her home with a driveway full of encouraging chalk drawings and messages. "Annie kicks butt" was Barbara's favourite. With Annie at home, the family established a schedule so that someone was always with her. Tim took an indefinite leave from work. Eventually, the family adjusted to the new routine, Annie gained weight and at the age of 75 days she smiled for the first time.
The next day, Annie developed episodic respiratory distress and her face turned a permanent red. The Farlows immediately took her to the local senior regional pediatrician, who told them Annie's red face was a reaction to medication and the distress was caused by a floppy trachea. This pediatrician advised conservative management of the trachea, because the problem might resolve without treatment.
Annie's distress worsened the following day and the Farlows took her to the regional hospital, where the attending physician sent them to the children's hospital by ambulance. Barbara and Tim were relieved to find their primary-care pediatrician in the emergency room waiting for them. After the pediatrician and his team reviewed the results of blood work and x-rays, he said Annie had pneumonia. The Farlows considered this good news. Children can recover from pneumonia.
Several hours later, while on the ward, Annie suffered a respiratory crash. An arterial blood sample was taken and the Farlows were left alone with a therapist who manually ventilated Annie with a bag mask for over an hour before she was transferred to the pediatric intensive care unit (PICU).
Sixteen hours later, in the PICU, Annie's oxygen saturation numbers suddenly dropped. The therapist again manually ventilated her. The primary-care pediatrician and an intensivist arrived within minutes. The intensivist said the problem was not pneumonia. He told Tim and Barbara that Annie needed an operation, called a tracheoplasty, on her narrowed trachea. In this surgery, Annie's chest would be opened and cartilage from elsewhere in her body would be used to enlarge the trachea. The surgery had a very high mortality rate for children who did not have the challenges of a genetic condition like Annie's.
The intensivist asked them if he should intubate Annie. The Farlows turned to their trusted primary pediatrician for guidance. He advised against intubation for Annie. He stayed with the Farlows until Annie died a short time later at the age of 80 days. The same pediatrician spent time with Tim, Barbara and their children in the bereavement room.
Within days, Barbara's logical mind combined with her maternal instinct made her question the events in the emergency room. A team of highly qualified doctors had diagnosed pneumonia, yet 24 hours later the Farlows were told that the cause of Annie's respiratory distress was not pneumonia. "We had complete trust in Annie's doctors and they had been kind when she died. For these reasons, I felt guilty and ashamed to order the records as it seemed like an act of mistrust or disloyalty," Barbara said.
She took Annie's medical records to a friend who is a nurse practitioner. After examining the records, the nurse practitioner told them that hours before Annie's death, the intensivist had placed a do not resuscitate (DNR) order in Annie's records. This order had been placed without their knowledge or consent. In fact, the previous evening the Farlows had made it very clear to the same intensivist that they needed a diagnosis for Annie so they could make an informed decision and not live with regret. They told him that they had accepted Annie's predicted disabilities and that her life had value to their family.
The intensivist later provided his justification for placing the "do not resuscitate" order. In response to the parents' letter questioning the placement of the order without consent, he wrote, "a discussion with Mr. Farlow through the night and in the morning suggested that the parents' wishes may be changing" (authors' emphasis).
We had made our position clear; there was no ambiguity on the code status. During Annie's final admission, we were asked twice, "Is she DNR?" Each time we responded, "No! We need to know what is wrong." The third time we were asked was in response to the same intensivist who eventually placed the DNR order without our consent. He asked if he should resuscitate if Annie stopped breathing. I said yes, because we had been told she had pneumonia, which most likely could be successfully treated. He then went on about "dying with dignity," but provided no information about Annie's condition. He asked for the DNR again. I told him that we were well aware of Annie's predicted disabilities and had accepted them. I told him her life had value to us. I said we didn't want her to live on machines, but we needed to know what was wrong and whether we could or should fix it. To our dismay and that of the nurse present, he stormed out of the room.
The nurse practitioner's examination of the records and subsequent investigations revealed additional issues. The diagnosis of pneumonia was not supported, as Annie's blood work did not show any infection. As well, the records stated that there was good air entry to both lungs and no consolidations (dense areas on x-rays) were observed. Several treatments less severe than the risky operation suggested by the intensivist were possible.
Annie had normal and stable vital signs minutes before her oxygen saturation levels plummeted in the PICU. Most of her final records, including her final medication record, were absent from the documents provided to Barbara.
Barbara later learned that Annie's carbon dioxide levels had been progressively critical commencing the fifth day after birth. A pulmonologist, concerned about Annie's trachea, had examined her at three weeks. He advised the pediatrician that two tests be done, a high KV x-ray and a fluoroscopy. The pediatrician did not order the first and cancelled his initial order for the second. As Barbara explained later, these tests would have ruled out the possibility that Annie's tracheal compression was caused by an artery. She was at risk for this, as noted in the records, because her heart was centred in her chest, giving rise to an increased probability of abnormal association of major arteries with the trachea.
The pulmonologist's advice and the pediatrician's decision not to follow it both occurred without the Farlows' knowledge. Doctors at two hospitals had apparently ignored the increasing carbon dioxide levels and said nothing to Barbara or Tim. Annie's red face was the result of these sustained critical levels. Annie had been heading for a respiratory crisis her entire life.
The official cause of Annie's death was given initially as "complications of trisomy 13." The new chief coroner, however, revised this and informed the Farlows by letter that the primary cause was "central hypoventilation." A private medical review referred to this condition as slow asphyxiation. The Farlows never learned the exact cause of Annie's final rapid decline or whether indeed she could still be sharing their lives. They had made the critical decision to let Annie die with the belief that she would not likely survive the surgery described, yet the coroner's report stated, "It was by no means certain she had to undergo prolonged burdensome interventions such as prolonged ventilation or distressful surgery."
Barbara recalled: "We were shocked and devastated and so hurt by the violation of trust in Annie's providers. We had trusted their competency and integrity without question. We learned years later that Annie's primary-care pediatrician had cared for a three-year-old with trisomy 13 just the summer before Annie's death. The family had fought a major battle just to have a specialist consult for a life-threatening condition. This child remains alive and well as of November 2011."
The Farlows kept hoping for an explanation, because what they were discovering could not possibly be true. But it was. They felt they had been deceived from the time of the meeting before Annie's birth, when they were assured she would be treated like any other child, through to the DNR decision being made without consulting them. In addition, their lack of involvement in the treatment plan ensured that Annie received neither appropriate life-saving care nor effective palliation. As Barbara said, these were award-winning physicians at a renowned children's hospital. She and Tim felt, however, that the physicians made a series of decisions during Annie's short life that reflected their belief that her life was not worth saving.
The coroner's pediatric death review committee did not support the Farlows' contention that necessary treatment was withheld from Annie and that a culture of withholding life-saving treatment for some infants is part of the hospital's culture. The committee did, however, state that "the events of the final 24 hours and the initiation of palliative care together with writing of a DNR order as stated above do not represent appropriate forms of care." The report also stated that "when the decision represents a major change in management, full documentation by caregivers is crucial. It was notably absent in this case."
Excerpted from After the Error by Susan McIver, Robin Wyndham. Copyright © 2013 Susan McIver and Robin Wyndham. Excerpted by permission of ECW PRESS.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Susan McIver holds a Ph.D. in entomology/microbiology, was a professor at the University of Toronto with appointments to the Faculty of Medicine, and a department chair at the University of Guelph. Subsequently, she served as a community coroner in British Columbia. She is also the author of "Medical Nightmares: The Human Face of Errors." Robin Wyndham was a registered nurse for 34 years. She worked in neonatal intensive care, surgery, psychiatry and residential care and had a special interest in palliative care. She studied nursing at the Vancouver General Hospital and English at the University of British Columbia.
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