Medication Without Harm: Real-life stories (2024)

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How patients and families have brought about change

"Just Bag It"

Robin, a 21-year-old, was diagnosed with an aggressive blood cancer, a non-Hodgkins lymphoma. In the hospital, he was given a spinal infusion of vincristine, a common chemotherapy drug for cancers of the blood. Vincristine is intended to be taken intravenously (by IV). When it is injected into the spine, as it was in Robin’s case, it is almost always fatal.

Robin showed no ill effects after he was given his injection, but his doctors realized what was likely to happen. They came to his room and told him he would probably die within a few days. Robin faced his fate bravely. “I could see his eyes flash the recognition,” his father said. “He swallowed hard and just went on.” Robin slowly became paralyzed and, as his doctors had predicted, died three days after the injection.

No one knows how many vincristine mix-ups have occurred worldwide, but they are certainly in the hundreds. Robin’s parents and his doctor have honoured his memory with the “Just Bag It” campaign, which urges hospital pharmacies to prepare vincristine in a small IV drip bag instead of a syringe. This is a human factors solution that makes it physically impossible to inject the drug into the spinal fluid.

The national regulatory agency in Robin’s country does not expressly forbid using a syringe for vincristine, although it requires the syringes to be sealed with a warning label. Leading medical groups, including the World Health Organization, have guidelines recommending the IV bag policy. However, a recent survey found only half of cancer treatment facilities in this high-income country always use the IV bags.

Human error is not always avoidable. In situations where specific errors are a known risk, the best solution is human factors engineering that forces people to avoid the risk.

*The names and photos used in this story are not real, but the story is based on true events.

Advocacy for safer prescribing of high-risk medications

Sean, a young man, suffered a complex break of the leg. After several surgeries, he had weaned himself off the strong pain medicines he had been prescribed, although he was very depressed over his loss of mobility and was taking antidepressants.

Sean went to a new doctor who prescribed antibiotics and high doses of morphine over a period of four weeks. The day after his last consultation, Sean was found dead from multiple overdoses and aspiration. When his mother got his medical records, she found he had been prescribed over 2000 tablets in the last month of his life. The doctor told her he had not ordered Sean’s medical records or consulted with his prior doctors. He said that he did not know that Sean was depressed or that he had chronic asthma, which can worsen the effects of some pain medicines.

Sean’s mother began to sit through coroners’ hearings where death had occurred due to prescription drugs. “There were so many families who had lost loved ones in similar circumstances”, she says.

“Why are we accepting prescription drug deaths?”

She has advocated for the real-time prescription tool that is now being implemented to help track controlled drugs in her home state. She adds, I have maintained that this problem will not improve until there are also strict and mandated procedures and regulations in place at the source of the prescribing.

*The names and photos used in this story are not real, but the story based on true events.

The prescription cascade

Viola, an active 86-year-old, was admitted to her retirement home’s health centre for a few days of recuperation following a bout of the flu. Instead of recovering, however, she suffered a sharp decline in mental function and developed alarming symptoms including hallucinations, inability to tell dreams from reality, and unexplainable repetitive movements of the arm.

Viola's family learned she had been started on both antidepressants and a pain medicine that contained the chemical serotonin. After researching the drugs they suspected she might be suffering from serotonin syndrome. This happens when high levels of serotonin build up. The medical staff did not connect these drugs with Viola’s symptoms, which were drug side effects, eventually leading to an incorrect diagnosis of vascular dementia with more prescribing planned.

The family met with staff and asked for a directed drug holiday for Viola. Once the drugs were stopped, Viola’s mental status returned to normal. She improved physically to the point that she was able to accompany her family on outings in her wheelchair, although she had been bedridden so long that she was never strong enough to return to her apartment. This is a great danger for elders and why drug interactions and adverse events have to be dealt with quickly. It can impact the rest of their lives.

Doctors often see adverse effects of drugs as another condition and more drugs ensue – the prescribing cascade. The family’s feedback and their knowledge of the patient’s baseline are essential to keep patients safe and well.

*The names and photos used in this story are not real, but the story is based on true events.

National reporting of adverse drug reactions

Martha, the eldest in a family of five children, had low levels of potassium in her blood. This condition had been managed for years by giving her extra potassium.

Then, as a young nursing student, Martha developed mood swings that were diagnosed as bipolar disorder. She was prescribed lithium. Martha and her mother researched the drug and concluded it was safe.

Martha had not been told, however, that recent tests indicated she had a genetic heart defect, or that a warning had been put in her medical file advising against prescribing lithium. She did not know that giving lithium to someone with low potassium can affect the heart.

As Martha began taking lithium, her moods became more stable but she started to have spells of racing heartbeat. A doctor dismissed these symptoms as panic attacks and her lithium dose was increased.

Two weeks later, her father found her lying on the floor beside her bed where she had died during the night. She had not been able to get to the bedroom door to call for help. Martha was just 22 when she suffered a fatal cardiac arrhythmia.

Martha’s parents took it upon themselves to piece together the events that had led to Martha’s death. They learned that a psychiatrist, knowing of Martha’s low potassium, had written the lithium warning in her chart. But the next psychiatrist did not agree and prescribed the drug without mentioning the concern to Martha. They also discovered that tests had confirmed Martha’s heart defect a year before she died. The heart doctor had never read the tests because it was his practice to wait for the patient to return before reading tests. Assuming that “no news is good news”, Martha had not made a follow-up appointment.

A campaign by Martha’s parents led to years of investigations. After six years, the coroner’s office confirmed that Martha had died from an adverse drug reaction, and that she should not have been prescribed lithium because of her heart defect.

A number of recommendations aimed at improving patient safety were made. To Martha’s parents, the most significant change was that coroners in their province began reporting adverse drug reactions to the national drug database. Even though the database had been in place for 40 years, coroners had never before been required to report their findings to it.

Community engagement and health literacy

A 60-year-old woman went to the doctor and was given a refill prescription for her blood pressure medicine. She sent her grandson to the pharmacy to pick up the medicine. Fortunately, the grandson had been given health literacy education at school; he was also familiar with his grandmother’s usual prescription. Even though the medication was not accompanied by any printed information, the boy immediately recognized that the dosing schedule on the container – one tablet three times a day – was incorrect. It should have been one tablet daily. Thanks to the vigilance of this young man, his grandmother did not take the excess doses of medication, which would have posed a serious danger to her.

Pharmacies make errors for many reasons, including overworked and poorly trained staff, poor doctor handwriting, and lack of patient information. While having qualified and well-trained pharmacists and pharmacy technicians is one way to help avoid mistakes, the value of patient empowerment cannot be overemphasized. Patient knowledge about their own medications, even just the drug names and usual dosing schedules, can go far to help prevent errors. In Uganda, health literacy is taught in schools through debates, music, dance, drama, and other forms of training. One of the WHO Patients for Patient Safety advocate's says, "It is important to promote health literacy in schools because when children acquire knowledge early in life, they are better placed to adopt a healthy life style". She adds, "Patients should be empowered, because when things go wrong, patients are the ones who suffer the harm".

Engaging patients and the community is a cost-effective way to improve medication safety.

*The names and photos used in this story are not real, but the story is based on true events.

Passing a new law for making emergency response teams accessible for everyone

Lewis, a healthy, athletic 15-year-old student, went to the hospital for surgery. To help with pain after his operation, he was given strong opioid medicines plus regular injections of the nonsteroidal anti-inflammatory painkiller - ketorolac. NSAIDs, or nonsteroidal anti-inflammatory drugs, are a class of common pain medicines that includes aspirin and ibuprofen. They can have severe side effects including kidney failure, excessive bleeding, and perforated ulcers.

Because ketorolac had no set dosing for children, Lewis was prescribed a full adult course. The dose was based on his weight, which was at the bottom of the adult scale. Three days after surgery Lewis developed a terrible pain in the area of his stomach. His condition grew worse, as his abdomen swelled and his breathing, heart rate, and blood pressure became more and more abnormal. The next day his heart stopped and he could not be revived. An autopsy showed that he had died from a perforated duodenal ulcer, a known and deadly side effect of the NSAID ketorolac.

Apparently blinded by the fact that Lewis was a healthy young boy, staff had not recognized what were later seen as classic signs of a perforated organ. They believed his pain was due to a bowel slowdown, a common event in people taking opioid drugs. While focusing on possible side effects of opioids, they had overlooked the risks of Lewis’s secondary medication, ketorolac. In spite of the family’s concerns, they had not called a senior doctor who might have realized that quick action was needed.

The effects of adverse drug events can often be reversed if caught in time. Recognizing that patients and families are an essential part of this process, Lewis’s parents went to their state representative, who sponsored and helped pass a law making emergency response teams accessible to all hospital patients in their state. They also reported Lewis’s death to the drug manufacturer and the Food and Drug Administration, where they learned that ketorolac had caused a number of other severe adverse events in children. The drug now contains a Black Box statement warning against its use in children.

*The name, photograph and contents of this story are true, published with permission from the family.

Patient Safety

Fact sheets

Patient safety 11 September 2023