The woman wept as she spoke of the emotional and financial impacts on her family. The wider impact was the cost of additional surgeries and related care, the loss of tax revenue and the loss of a skilled tradesman in the workforce. Patient safety organizations dedicated to reporting, education, funding, advocacy and data collection have been established in a number of countries. See For Further Information at page These organizations include those established by governments, private groups and individuals.
Subsequently, Patients for Patient Safety was formed under the auspices of the World Alliance in order to involve patients as partners in improving safety in all health-care settings throughout the world. An increasing awareness of and concern about medical errors in Canada and globally is driving extensive efforts to understand why and how errors occur and how to prevent them.
In this country, national and international conferences and symposia bring together experts to share their ideas. Graduate programs are being established and continuing education courses in patient safety at all levels help to train leaders in the field.
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Hospitals, health regions and professional associations all initiate and support programs in patient safety. When patients enter the medical system, they expect that their illnesses will be cured, their broken bones will be mended and, if at the end of their lives, that they will die free of pain and at peace. They do not expect to experience infections, surgical mistakes or other complications in respected institutions staffed by people they trust to help them.
The chapters that follow in Part I provide true stories that are examples of various types of errors, their impact at a personal level and the efforts made to discover the truth in order to avoid further needless suffering. The chapters in Part II offer information on how to prevent errors when making end-of-life decisions, how to use the media and how to organize large amounts of information, such as medical records, in order to facilitate investigations. The final chapter offers insights into medical malpractice.
Her family, who had no previous experience with disabled children, loved Annie with all their hearts. When she died in August , 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. 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. In early , 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 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.
Speaking Out About Patient Safety to Save Lives
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. We would take her journey together, as a family. We named our daughter Annie.
Fewer Patients Have Been Dying From Hospital Errors Since Obamacare Started
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.
They were assured that Annie would be treated like any other child.
After the Error
Treatment, including surgical intervention, would be given as required. The Farlows would be informed of risks and benefits and any decision would be theirs. Our overall goal is to help make health care safer and facilitate discussions on how this can be achieved. Openness about errors at all levels is crucial. Health authorities, administrators, doctors, nurses and other health care staff must work together to help patients who have been harmed and to ensure that the same situation will not be repeated.
Meaningful remedies should be developed and personalized to each case. At the same time, compassion and understanding are essential for both those who have made an error and those who have suffered from one. Through working on the book and from years of experience as a registered nurse I have seen many areas where nurses can make a difference.
These range from speaking up in the workplace to becoming politically active. Errors should be reported and areas of risk identified and remedied. Nurses must speak up about their concerns around patient safety at the bedside, in their practice community and in the community at large.
No discussion of patient safety is complete without addressing the question of funding. In this time of financial constraint it is imperative that patient safety not be compromised.
Hospital had to do with attention. Their attention was on their finances — understandable and even appropriate these days. All of us need to pay attention, in person, to the work at the front lines. We need to pay attention to our systems for building effective teams to execute work and to improve. And we need to pay attention to creating and maintaining reliable ways to seek, hear, and integrate the voices of our teams and the voices of our patients.
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After the Error: Speaking Out about Patient Safety to Save Lives by Susan McIver
She worked in neonatal intensive care, surgery, psychiatry, and residential care with a special interest in palliative care. Patient safety is an important element of an effective, efficient health care system where quality prevails. Your nurses, doctors and loved ones all want the same outcome: for you to get better quickly. As the patient, you too are part of the health care team.
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