Our APSS outline actionable steps healthcare organizations should take to successfully implement and sustain behavior change for high reliability, shared understanding, thorough communication, and meaningful person-centered care across the organization.
Actionable steps include:
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On October 7th, 2021, my sister Gladys was forced, against her wishes, to the hospital by her dialysis nurse for anxiety. Instead of being sent to the neighboring hospital that day, she was sent to a hospital that was significantly further for reasons unknown.
My sister Gladys has never had any prior heart or health issues besides renal failure. She was in hospital care for a few hours before her heart stopped. The hospital claims that she had a heart attack. At the age of 23 with no prior cardiovascular health issues, this was difficult to believe.
For the next two months, the hospital neglected my sister and never bothered to engage with our family to shed clarity on what occurred that day. We have filed multiple reports of neglect to administration, yet it seems as if everyone looked the other way. Shortly after, Gladys was transferred to a nearby nursing home where she only lasted six days before being admitted back into the hospital. It was discovered by family that her body was covered in bruises and marks of neglect following her stay at the nursing home.
As of now, my sister Gladys is still a patient at the hospital, where we are very concerned for her safety due to previous experiences. Recently, an electroencephalogram was conducted and results showed that there was evidence of past brain damage that had occurred in her previous care facilities and now new brain damage was occurring. The hospital has recommended that Gladys be discharged to a nursing home, but with previous negative experiences, we are very hesitant and worried about her health and safety. We want a fighting change for Gladys and to provide her proper care. To return to the nursing home makes our family feel as though the hospital has requested that we disconnect her.
In addition, there has been a lot of inconsistency between hospital staff on my sister’s mental state due to the brain damage found. I am sharing my Sister’s story in hopes that instances of neglect similar to Gladys’ story do not go unnoticed and to shed light on the lack of transparency in our current healthcare system.
As a wife, mother and carer, Eileen Kenny’s death from cancer in December 2016 had a devastating impact on her family and friends.
Eileen was just 61 years old and had always led an active and health conscious life, regularly playing tennis well into her 50s.
Life had not been easy at times for the Kenny family, particularly after their daughter Louise became ill, and would require life-long care.
The impact of Eileen’s loss was felt very heavily by her husband Jim and both her daughters, but their loss was all the more magnified because right up until the weeks before she died, Eileen was still searching for answers and accountability in relation to aspects of her cancer treatment.
Her questions began when she discovered, in quite shocking circumstances, that her cancer had returned, and that her recurrence could have been picked up a lot sooner, had best practice and international guidelines been followed during her care.
Could Eileen have survived longer had things been done differently?
Her family say they still cannot grieve properly until they get the answers they’re looking for.
Having already gone through a lengthy court process, which resulted in a financial pay-out and an apology, Eileen’s family put their faith in the Irish Medical Council, who are tasked with protecting the public by holding doctors and their practices to account. But who holds the Irish Medical Council to account and did the family get a fair hearing?
Two years on from Eileen’s death and her family, especially her husband Jim, remain in dogged pursuit of truth and accountability. They want to ensure no family will have to endure the frustrations and dissatisfaction they say has resulted from their experiences.
My name is Joe Power, and my father, Michael Power, died in the hospital last March. The circumstances around my father’s death left a giant question mark in our lives due to the lack of answers we received from the hospital during the original review. I wanted to share his story
My father was admitted to the hospital March 5th, 2021 due to a severe chest infection, which significantly worsened over the next few days. As a result of the pandemic, our family was barely able to visit my father and unable to see the care provided by the hospital first hand. The serious events arise on Saturday, March 13th, 2021, the day my father passed away.
Our family was advised to come to the hospital around 10:30 AM, during which we were not told over the phone that He had already passed. Upon arrival, there was a large, fist-sized, bruise on the side of his head. This bruise was dismissed and given zero explanation by staff when asked about. Later it was discovered that my Father had a series of bruises, consistent with those of a defensive fall, down his right hand side. This necessitated an autopsy, which was especially hard on our family as it further delayed the funeral.
Although the autopsy did not link the bruises to his death, the hospital took no serious action to explain the bruises. A review was opened by the hospital and it was verified by CCTV footage that my Father did fall, at least once, before his passing. However, this was not reported anywhere in his medical chart, not passed on to the medical team, nor reported to the family. It was only after the CCTV footage proved His fall, and ultimately the medical staff’s negligence of care, did the hospital accept their fault and apologize.
The hospital review concluded with reported findings that pointed to staff failure and the recommendation of staff retraining on a number of skills. The hospital ruled the bruising due to an “assisted fall,” although the bruising found was entirely incompatible with this type of fall.
We have filed a formal complaint with the hospital, which has not received an official response within the 9 months, and counting, of it being filed. I am sharing my Father’s story in hopes of his memory not being dismissed as another patient safety statistic.
I’m a registered nurse, and have worked in healthcare for almost 30 years. In 2011, my husband had a bout of diverticulitis. Subsequently, the surgeon recommended an elective laparoscopic colon resection. So, in 2012, he went in for this simple procedure.
When he arrived at the floor, I was told that for the most part it went well. Although, he did have lap surgery, they also decided to give him a temporary ileostomy. However, when I arrived to see him around 4pm post-operative, he was sweating, pale, very little urine output in his foley and his abdomen looked like he was nine months pregnant. I called his nurse into the room, who also was a friend of mine. She agreed that something was wrong. She called the doctor and started a second IV. The doctor came and said he was dehydrated. I argued that he looked like he was internally bleeding. He said he was fine, but agreed to order labs.
I asked also for an X-ray or CT scan and was told that was unnecessary. Labs demonstrated that there was a blood loss, and his potassium was elevated to about 7. (Elevated potassium can be a symptom of internal bleeding). The MD came back, and ordered a type and cross and transfusion of two units, plus a bolus, because his blood pressure was under 90 systolic. He still refused an X-ray. He just said well maybe he is having some sepsis, and I don’t believe he is bleeding, “I believe it’s just blood loss from the surgery”. He said he believed the potassium was in error, it wasn’t and he was give d50 and insulin to bring it down.
The hours ticked by, and my husband continued to deteriorate, and around 11pm, they transferred him to ICU. I went home, because he was in the hands of the ICU intensivist, and we 5 kids, four of whom were still in school. Around 1am, I got an urgent call from the ICU intensivist that he had ordered a CAT scan. My husband’s belly had an estimated 2 liters of blood in it, and they were calling in a trauma surgeon. His hemoglobin was about 5 and mass transfusion protocol was initiated. When they opened him, my husband was full of blood. The trauma surgeon was able Patient Safety Movement Foundation | patientsafetymovement.org to stop the bleeding, but unable to close his belly. He was brought back to the ICU intubated, and belly packed. He went back to the OR after the internal swelling went down, and was closed. It was a year-long recovery. This was due to failure to rescue. If I had as a family member called a rapid response at 5pm, this could have been avoided. My husband took a long time to recover. My husband almost died.
I’m thankful that he is alive, but his long recovery could have been avoided if he had had the proper interventions early in the evening. After the event, people couldn’t believe that this could happen to a nurse’s husband. IF this could happen to my husband, it could happen to anyone.
My husband, Thomas McGowan, passed away on April 16, 2017. Tom died of complications from a liver biopsy performed on April 13, 2017 resulting in a bleed that was not controlled, causing hemorrhagic shock and his death 3 days later. The events leading up to the biopsy and the subsequent care leading to my husband’s death were horrific and preventable. I believe that had there been of a culture supportive of patient safety, and any reasonable communication and accountability at the hospital, he would have survived to continue to battle his cancer, for many more months or years. Had the physicians and staff at that institution properly and timely investigated the cause of my husband’s bleed post the April 13 liver biopsy, my five children, ages 8 through 16, and I would not have watched him die shockingly and violently on April 16, Easter Sunday, 2017.
Tom was diagnosed with esophageal carcinoma in February of 2015 and following chemotherapy and radiation treatment, underwent resection surgery in July of 2015. In August of 2016, a reoccurrence was discovered in his lymph nodes and he was treated with a regimen of chemotherapy and radiation. On March 21st he was given an endoscopy that revealed gastric cancer. During this time, Tom also came down with a severe case of the flu and became very anemic. We were also informed that based upon a PET Scan that was done on March 28th Tom would require a liver biopsy for a suspicious area found on the scan.
On April 12th, the children and I travelled with Tom to the hospital where, because of his severe anemia, he received a blood transfusion to prepare him for the biopsy. As it was Easter week, our family plans were to spend one night in New York City for the biopsy, before we all travelled to Rhode Island to celebrate the Easter holiday.
On April 13th, an ultrasound guided liver biopsy was performed on Tom. Four samples were taken from the right hepatic lobe lesion. He had a hemoglobin of 8.1 and platelet count of 82k. On April 14th, Tom’s hemoglobin was noted to be 7.2 and his platelets were 63k. Despite his falling hemoglobin and platelet levels, there was Patient Safety Movement Foundation | patientsafetymovement.org no investigation into the cause of the drop. Rather, the entire staff and physicians assumed it was due to a gastric bleed. In fact, radiation therapy was provided that evening in an attempt to stop the gastric bleed. Tom continued to complain of abdominal pain. He was transfused as a result of his falling hemoglobin and platelet count. The last reading of Tom’s hemoglobin and platelet count on April 13th was 7.4 and 44k respectively.
The following day on April 15, Tom continued to deteriorate. His condition continued to worsen and he soon became unresponsive. There was discussion whether the bleeding was from the liver biopsy site or the intraperitoneal from the tumor. No investigation was done to determine the location of the bleed. He died in the early hours of Easter Sunday morning.
I believe that the doctors and staff failed to aggressively pursue my husband’s falling hemoglobin and platelet levels the day after his liver biopsy, even though his hemoglobin continued to fall while he received numerous transfusions. They assumed it was due to gastrointestinal bleeding, but did nothing to confirm the source of the bleed. In the face of the falling hemoglobin and platelet count, an investigation should have been done, including an image of the liver and a check for blood in the stool to determine if the cause of the bleed was the liver. For the doctors and staff to just have assumed it was a gastric bleed, and not investigate further, was incomprehensible to me. Immediately after his liver biopsy on April 13th, his level dropped drastically sending clear signals that an acute event occurred to cause such a dramatic drop. The only possible explanation was the liver biopsy and despite it being right in front of their faces and my pleas, they did nothing.
A proper check would have determined that the source of the bleeding was from the liver. This would have led to proper management to control the bleed, and prolong Tom’s life, for how long we will never know. Tom was determined to beat his cancer despite the odds. The hospital didn’t give him the chance.
James Lindenbaum was diagnosed with schizophrenia at age 16, and for almost five decades, his mother, Pearl did everything possible to ensure that her son received the care he needed. Psychiatrists and countless other specialists addressed his health needs. Over the years, as his condition worsened, she tirelessly sought the best living arrangements for him. At age 60, she earned a master’s degree in Social Work and dreamed of creating a group residence for James and others with a severe brain disorder.
Despite her heartfelt concern and tireless efforts, her son suffered an untimely and tragic death. “The health care and mental health systems failed him,” she says. “The deplorable treatment – or lack of treatment – he received when he was so physically and mentally ill led to his passing at age 65. I want to raise awareness of the appalling deficiencies in the system to bring about change so this doesn’t happen again to somebody else.”
Over the years, James resided in a succession of adult homes, public and private psychiatric treatment centers, a long-term care facility, an assisted living facility, short-term hospital psychiatric units, and finally, the state-run psychiatric center on Long Island. After James entered the inpatient medical facility at the psychiatric center, Mrs. Lindenbaum sought legal guardianship so she could become a strong advocate and make health care decisions for him. James was declared “an incapacitated individual,” and she was appointed as his legal guardian.
In October 2016, after one year in the inpatient unit, the psychiatric center transferred James to the State-Operated Community Residence (commonly called a “SOCR”), where he received limited supervision and was free to come and go as he pleased. But as a patient diagnosed with “severe and persistent mental illness (SPMI),” James required continual assistance with self-care, eating and medication, which he failed to receive in the SOCR.
As time went by, his condition deteriorated. By early 2019, he had lost 40 pounds, and at six foot one, weighed 145 pounds. He often failed to take his medication, went for days without changing his clothing and for weeks without bathing. Paranoia and hallucinations tricked his mind into thinking someone was going to kill him, and he often stayed up all night in the facility’s TV room.
By February 2019, James had become severely ill and was sent to the emergency room of a hospital on Long Island. When admitted on February 15, he was found to be malnourished and anemic, and had not been taking his medication on schedule. He was diagnosed with pneumonia, in addition to several pre-existing conditions, including chronic obstructive pulmonary disease and multiple cysts on his kidneys.
After a week in the hospital, James was to be discharged back to the community residence, despite ongoing and serious health problems. Mrs. Lindenbaum and a geriatric care specialist she had engaged to oversee his care pleaded with the hospital and the psychiatric facility to not readmit James to the SOCR, as he would not receive the level of care he needed. Their pleas went unanswered.
James was readmitted to the SOCR on February 22, 2019 with pneumonia, dysphagia and several other life-threatening conditions. Twenty-four hours later, James was back in the emergency room and was readmitted to the hospital on February 23, 2019. He never left the hospital. James died on March 22, 2019. The causes of death were listed as respiratory failure and MRSA pneumonia.
Mrs. Lindenbaum believes the heartbreaking tragedy of what happened to her son is not an isolated case. With the ongoing reduction of inpatient psychiatric beds in New York State, James was surely not the only patient with severe mental illness transferred to a residential setting or released into the community and left to fend for himself.
She seeks to expose deficiencies and failures in the health care and mental health systems to bring about change. “Change is imperative to ensure that people with a brain disorder are treated with the dignity and respect they deserve; their constitutional rights are respected; they receive proper medical care and supervision; and they are provided with shelter in an appropriate setting that meets their needs,” she says. “Nothing can bring back my son, but if I can raise awareness that prompts discussion and policy changes, perhaps this will prevent a similar outcome for someone else.”
Hello. This is the story of my dear mother, Forough Azadi, a good and honest woman and a devoted mother. She had diabetes and took insulin every day. Two and a half years ago she became ill and was diagnosed with sepsis. At first, we went to a private hospital, but they referred us to a government hospital in the city because the government hospital had better equipment such as fusion scanning. My mother was not feeling well at all, but after some time in the ward, they said that her lung infection and pulmonary embolism were gone, but she still had to be oxygen ventilated to cure septicemia. My mother was a strong person by nature. But they could not feed her for 16 days because the NG feeding also caused her nose to bleed due to low platelets and the nosebleed did not stop.
On February 28, 2018, while my mother had been oxygen ventilated 4 times, her specialist doctor only visited in the morning until noon, but interns took care at night shifts. On the night of the accident, at 9 o’clock in the evening, a jaw & face intern was assigned to deliver food to my mother. At the time of OG tube feeding, his hand touched the breathing air tube which caused it to collapse as he unintentionally cut off the only way for my mother to breathe. My mother’s blood oxygen dropped from 95 to 25. Then the intern panicked and stood aside. The head nurse, instead of calling the resuscitation team, sucked blood to re-enter the intubation tube until they could re-mount it and my mother’s blood oxygen difficulty reached 55. They both left the room and did not wait for my mother to become more stable. After they left, I saw her blood oxygen drop again and then her heart rate dropped to zero. It was very painful. She died and later the operation of the resuscitation team had no effect on her.
After a mourning ceremony, the hospital mortality committee was formed. The relevant intern was found guilty, but this result was not given to me in writing. He was fired for at least three months plus written reprimand, but the committee wanted to calm us down and they said, “Sorry it was an accelerated death.”
In the next stage, I had three complaints to the two brigades of the medical commission. After what I believe was an incomplete investigation, they voted to be negligent and said that it is normal for these cases to happen during OG feeding! In my opinion, the medical commissions are more in favor of the medical staff than the survivors of the deceased patient.
My wife and I became pregnant with Ivanna shortly after the birth of our oldest daughter. Needless to say, that was a surprise. Three months into our pregnancy, we went to the doctor for a routine sonogram and follow-up. The OBGYN came in, deeply concerned, and told us Ivanna had hydrocephalus and that it was extremely severe. Hydrocephalus is otherwise known as water in the brain. My wife and I were horrified and scared. We went to several specialists and the opinions weren’t what we were expecting. One said most parents when presented with a case like this opt to terminate due to the prognosis being so bad and the other explained how terrible she was going to come out. Again, we were horrified, scared and lost.
We left our hometown to seek treatment elsewhere and found a children’s hospital that handles over 500 cases a year of children with similar brain issues. She was to be born full term and then had an operation to insert a shunt in her head to drain the excess water from her head. The surgery was a success.
With the grace of God, and family, we took it all one day at a time. We decided to treat her like any other child. God blessed us with milestones that exceeded all expectations. You see, Ivanna wasn’t supposed to walk, talk and have severe learning disabilities. Not only did she talk, she was bilingual and was about to learn a third language with the piano. Not only did she walk, she danced her heart out. She was getting ready to start school.
On August 29, 2019, Ivanna began vomiting, a sign that her shunt might not be working properly. We took her to her specialist’s medical clinic, where we waited for several hours to be seen by the doctor. The doctor instructed us to take Ivanna to the emergency room at the local children’s hospital. The doctor promised he would follow up with us at the hospital.
When we arrived, the hospital staff discovered that Ivanna was the patient of Ivanna’s specialist. The staff abruptly removed us from the emergency room and placed us in a room. All night we sat with Ivanna in her room waiting for the doctor to arrive. The doctor never went to the hospital that night, and all night, Ivanna received no treatment from the hospital’s on-call emergency room physicians.
This occurred because the hospital’s doctors were instructed not to treat the specialist’s patients as a uniquely dangerous and unlawful accommodation for the doctor.
Early in the morning, the nurses indicated that the doctor would arrive within the hour, which never occurred. Almost 12 hours after we arrived at the children’s hospital, our daughter went limp, turned blue, and began to foam at the mouth. Hospital staff sedated our daughter.
The doctors finally arrived and assured us that Ivanna would wake up soon and they would be ready to treat her. But our daughter never woke up. The doctor and other attending physicians provided us with no substantive information and misdiagnosed her condition as hypoxic shock and sudden death syndrome. Ivanna did not improve, her shunt malfunctioned and without the emergency care that she needed, she became brain dead and never woke up. She died on September 2, 2019.
At the time, we were in utter shock. Ivanna went from playing, laughing, running, and getting ready to start Pre-K, to dying unexpectedly. Parents should not ever have to bury their children, much less an innocent child of three-years-old. Ivanna became an organ donor and has saved the lives of other children immediately after her passing.
But this was no accident. This was also not a one-time medical malpractice event for this doctor. Our daughter died because of wide-spread policies and procedures at the children’s hospital that endangered the hospital’s patients, like Ivanna, and were implemented to accommodate and entice her doctor to do business with the hospital in exchange for millions of dollars in revenue and massive amounts of patients promised by the doctor. The hospital sought an exception for this doctor to practice Pediatric Intensive Care Medicine, even though he was untrained and unqualified in this practice area. Several of the medical directors refused to provide an exemption and warned the hospital that Ivanna’s doctor posed a danger to the hospital’s patients without necessary credentialing. The hospital threatened these doctors with termination when they refused to sign the waiver, bypassed these doctors when they refused, and obtained the exemption anyways.
This was no accident, and we miss Ivanna dearly. It’s a grief that’ll never heal. We are sharing this story for others because we don’t want any more children to die, and we certainly don’t want any more parents to live through what we have experienced. Children deserve world-class care from a children’s hospital. That is what we want. We want competent administrators and doctors who care about healthcare and not just making a profit.
My life changed forever on 5th November 2008 when my baby son Joshua died. Joshua was born just 9 days earlier – a perfect beautiful baby boy. Shortly after his birth, my wife collapsed with sepsis and was quickly given fluids and antibiotics. Over the next few hours, my wife recovered. We were both concerned for Joshua, but when we asked the midwives whether he might be at any risk, we were simply reassured that he was ‘absolutely fine’. We were told that staff would keep a very close eye on him and that we shouldn’t worry.
Over the next 24 hours, Joshua in fact had many signs of developing sepsis – He was lethargic, reluctant to feed, breathing quickly and heavily and his temperature was low and fluctuating, prompting staff to put him repeatedly into some form of heated cot. My wife and I raised concerns, but each time we did we were reassured that Joshua was fine.
The next day, in the early morning, my wife found Joshua collapsed in his cot. He was blue and struggling to breath. He was rushed to the special care baby unit and put on a ventilator. Initially we were told that he may have collapsed due to heart defect, but it was soon established that he had overwhelming of sepsis – caused by the same infection that led to my wife’s collapse 24 hours earlier.
From this point onwards, Joshua fought for his life in 2 specialist hospitals, which provided the very best care possible. However, the damage the infection caused to his lungs was simply too great and Joshua passed away as a consequence of uncontrollable bleeding in his left lung.
In the weeks and months that followed, we pushed the hospital where Joshua was born for answers as to what happen and why. We wanted to know why Joshua’s hadn’t been reviewed by a pediatrician earlier and why he hadn’t been given antibiotics after his birth.
Sadly, rather than responding to what happened openly and honestly, the trust and staff involved in Joshua’s care acted to conceal the truth. Crucial records of Joshua’s observations were ‘lost’. Subsequent investigations carried out by the hospital claimed that Joshua’s observations were all within a ‘normal’ range and that even if he had been given antibiotics earlier, there was no way of knowing whether or not this would have altered the outcome for him.
It took many years to eventually uncover the full truth about why Joshua died. In March 2015, an independent investigation into maternity services at the trust was published. This report found that a ‘lethal mix’ of failures had led to the preventable deaths of 11 babies and 1 mother. Joshua’s death was entirely avoidable and was part of a much wider pattern of systemic failures that had been ongoing for years before he died.
The report made a number of significant recommendations for change and led to a new national drive in England to reduce avoidable harm and deaths in maternity services by 50% by 2025. The report also led to the establishment of a new national body that now investigates unexpected outcomes in maternity services like Joshua’s death – with a focus on learning to prevent future harm rather than individual blame.
Nothing can ever change what happened to Joshua, but I hope that part of his legacy will have been helping prevent other families going through the heartache and grief we experienced.
My name is Maureen Robbins and I have a serious and disconcerting medical experience to share with you.
It is an unsettling story of the tragic and untimely loss of my 84-year-old father, Joseph Karbelk, who was denied his rights as a patient, inappropriately restrained and incorrectly treated with chemical sedation in an emergency room and then, because of these events, failed to recover. A mere six weeks passed from the date of the hospital incident to his preventable death, which was accelerated by the carelessness actions of hospital staff.
And that is the reason I am reaching out to you today: To advocate for more and improved hospital patient rights in addition to highlighting the need for thorough legal knowledge and action concerning power of attorney for Black Box drugs. Choosing appropriate POAs and family advocates — and ensuring that all family members have knowledge and access to current and relevant information – is imperative in a hospital setting.
What happened to my father — and our family — should never happen to anyone else. With that in mind, I am committed to disseminating knowledge about patient and family rights, what can transpire in a hospital emergency room and what should be done — actively and proactively — by patients, advocates, family members and doctors to ensure that this kind of emergency room misfeasance is eliminated.
My particular story focuses on the dangers of medical hubris and carelessness as it relates to chemical sedation, drug interactions, lack of communication and a careless disregard for patients’ rights and the enforcement of power of attorney.
In the autumn of 2017, my father resided with my mother in an independent living facility in Chantilly, Virginia. Although he had been diagnosed with vascular dementia, his dementia was controlled, and he was maintaining a consistent state of health. He was doing well — so well, in fact that he accompanied me in September of 2017 on a trip to Blacksburg, Va., to see my daughter at college.
One month later, on the evening of October 15, 2017 — after my father was prescribed a new medication (Seroquel), experienced a fall, then exhibited an altered mental status and behavioral changes — my sister took my father to the emergency center in Tysons Corner, Virginia.
At this emergency room, although lab work was performed, and a CT scan administered, it was determined that further tests were needed. Arrangements were made for hospitalization in Arlington, Virginia.
Before transport to the hospital, my father was given the drugs Ativan and Haldol, a drug that interacts negatively for dementia patients on Seroquel. He was also restrained against his will and without consent from the family. NEVER, throughout this ordeal, were my mother or I given the opportunity to approve or deny the treatment based on our respective powers of attorney. My sister, who does not possess power of attorney, was allowed to make decisions and support erroneous doctors’ assumptions without any attempt to contact the legal POA’s – even though my father’s power of attorney documents had been on record in the hospital system for over two years.
In addition to this lack of legal clarity and enforcement, another set of circumstances unfolded simultaneously concerning over-medication. This is where the deadly spiral of chemical sedation, and degeneration, begins. Although drugs are often needed for patients experiencing symptoms of dementia, as my father was, it is CRUCIAL for emergency room physicians and consulting doctors to inquire about, and then be more fully informed concerning the specific medications that patients are taking as they enter an emergency room and/or hospital. Otherwise, serious black-box drugs – antipsychotics known for their often-lethal consequences for interaction – can be administered without regard to other drugs in a patient’s system.
In my father’s case, he was given more doses of the very drug (Seroquel) that he was already having an adverse reaction to. This could have been prevented. All of his prescriptions were filled at the first facility –- and it is important to note that the first emergency room he was taken to was also at this same facility. Neither that hospital nor the second one he was transferred to provided a prescription list. It was this lack of background inquiry and non-communication concerning drugs and their administration and interactions that are to blame for his quick deterioration and ultimate death.
Upon arrival at the second emergency room, additional medication (more Seroquel) was continued although the ER physicians noted that my father was awake, alert and resting comfortably and calmly on a stretcher -– all indications that he needed nothing more except tests and observation. My father’s personal neurologist was never called. The ER psychiatrist on duty was called and was going to come see my father. That never happened. He consulted by phone with ER staff, recommended a chemical restraint cocktail PRN– that included even more Seroquel — and additional black box drugs throughout the evening. Within a short time, my father was mumbling incoherently and unable to follow commands.
Especially unsettling was the inaccurate assertion by the on-call ER psychiatrist. He stated to the ER staff that he was “familiar” with my father and his case. That statement was, and is, false. For the record, this doctor had no history with my father, never physically saw my father in the emergency department nor did he EVER access a list of my father’s current medications. He did not actually visit my father until the following evening when he requested that neurology be consulted.
On October 17, 2017, two days later, a neurology consult was held to discuss the state of my father’s worsening dementia; the attending physician noted that my father has been heavily sedated for days and had not regained his fully alert cognitive state. The doctor stated that my father was suffering from toxic encephalopathy probably related to the medications he had been receiving since hospitalizations — black-box medications, including ZyPREXA, Seroquel and Haldon — that were continued despite my father’s ongoing unresponsiveness.
Due to my father’s now-advanced dementia and accompanying poor prognosis for recovery, the family decided to stop both sedating and psychotropic medications and to adopt a palliative approach at home.
That evening at home, after my father was discharged from the hospital, he became exceedingly drowsy, feverish and gasped for air. An ambulance was called, and he was admitted to the emergency room in Fairfax, Virginia., for aspiration pneumonia, sepsis, and metabolic encephalopathy. Again, the on-call physician noted that my father’s symptoms were consistent with neuroleptic malignant syndrome (NMS), a life-threatening reaction to antipsychotic drugs characterized by fever, an altered mental state, muscle rigidity, and autonomic dysfunction –- due to the previous administration and dangerous interaction drugs.
Later that evening, my father was transferred to a hospital in Reston, Va., where his mental state fluctuated, and he stopped eating despite attempts at nutritional support.
On October 24, 2017, my father was transferred to the inpatient hospice facility. My father remained in hospice care for 15 days until he died on November 5, 2017.
It is clear my father was denied his rights at the hospital where he was discharged and, as a result, was negatively affected by inappropriate chemical sedation. My father represents the very patients most in need of a Bill of Rights. Patients who are unable to make decisions for themselves and rely, instead, on the legally responsible parties named as their decision-makers to ensure their safety and best interests are considered.
My father’s experience is far too common in emergency rooms across the country. His life was worth more than a series of careless missteps and avoidable mistakes. The use of antipsychotic drugs to control people without their knowledge or against their will violates international human rights. “Under international rights law, in the absence of free and informed consent, a nonemergency medical intervention that is not necessary to address a non-life-threatening condition is forced treatment”
Knowledge and pro-active communication are the tools that all of us, as family members and advocates, must gain and retain as we navigate the unforeseen dangers of America’s medical facilities. It is critical that we are all prepared to help safeguard our loved one’s care at hospital bedside, when they need us most.
The number of older Americans is expected to double by 2060. The number of Americans with Alzheimer’s disease, the most common form of dementia, is expected to increase from 5 million today to 15 million in 2050. The system of long-term care services and supports will have to meet the needs and respect the rights of this growing population in coming years.
Together we can create awareness regarding the use of antipsychotic Black Box drugs for our loved ones. My goal is to protect the American’s impacted by this disease who no longer can protect themselves.
Just and Restorative Cultures – Healing, not Harm.
Sam was my little sparkle. Life-affirming, cheeky, and bursting with life, he liked music, mud, pebbles and pine cones. He was funny and affectionate. He thought baby cows were ‘cute’ and enjoyed balancing ‘imaginary cow-pats’ on my head.
In the run up to Christmas 2010. Sam and I were heavy with cold. Britain was frozen. Sam’s energy rose and fell with his temperature on the peaks and troughs of Ibuprofen. He was excited by the falling snow, but even more so by Christmas. He thought the Christmas tree — still wrapped in netting on the floor — was ‘so beautiful’.
On the 21st of December we ventured out to see a GP, ice cold air making us cough and wretch to the point of feeling sick and sore. Had we got flu? “Maybe… but it’s just a virus” the doctor reassured us. So we went home to warm up and wait it out.
Sam and I spent the next day, the 22nd, curled up under a duvet on our sofa. Sam’s temperature had come down for the first time in a week but — unusually — he was not perking up with medication. Worried, Sue called the GPs’. We waited: first for a call-back, then an appointment. Late in the afternoon we bundled up and braved the cold again and Sam saw his second GP in two days. On the way home Sue was still anxious. The GP had seemed “in two minds”, she told me, before determining “the best place for Sam was home”. I watched Sam in the rear-view mirror. Small and exhausted. I knew how he felt. “We need to trust the doctors”, I said, “they are the experts”.
Soon after arriving home, Sam was sick. Sue sought more advice. Waiting for another call-back, I cuddled Sam beside his bed. He was sick again, but this time it was black. An out-of-hours service sent us to our local hospital. Yet more waiting. Then sudden urgency. An oxygen-mask. An ambulance. Blue lights. A&E. Drips. Blood tests. X-rays. Prescriptions written. Transfer to a High Dependency Unit. Reassurances. Shock. A circle of medics — white and blue, through dull green curtains. A kind nurse. A calm consultant. Talk of fighting as hard as any boy could. The beeping of Sam’s beating heart. And then a searing and suffocating silence. Circumstances beyond comprehension. 5AM. The 23rd. Weakened by flu. Overwhelmed by sepsis. A perfect life cut short. Aged just 3. Sam was dead.
In the UK the National Health Service (NHS) is everyone’s safety-net: safe hands if needed. So trusting ‘healthcare’ — despite anxiety for Sam — felt natural. Our trust was never blind, but always respectful, asking questions when necessary: believing the NHS existed for the health and wellbeing of patients.
But the speed and unexpectedness of Sam’s death changed everything. We no longer felt safe… and nothing made sense any more.
With broken-hearts, the need for safety and sense-making generated questions. Questions which — if safety was health-care’s priority — its practitioners would encourage and answer quickly and comprehensively.
Frightened, but in good faith, we waited. As weeks became months however, my ability to trust was systematically dismantled.
I started chasing responses. Unwilling to see through my eyes, they expected me to look through theirs. Assurances were free-flowing but — lacking evidence — meant nothing.
I was asked to be patient; to trust the professionals; trust the process; trust the system; to understand that no one goes to work to do a bad job.
Investigations were promised but dragged on interminably; excluding us; siloed; missing chunks of Sam’s journey; devoid of objectivity and, conveniently, dismissing our concerns. We were told that Sam died of something “incredibly rare” and “hard to spot or treat”; that “nothing could have been done to save him”; that his death was ‘explained’ and ‘unlucky’ but ‘unavoidable’.
But sepsis isn’t rare, and — with timely recognition — can be treated.
Independent investigations — spanning 5 bleak years — determined that Sam’s death was, in fact, avoidable. Amidst a ‘catalogue of errors’ the seriousness of Sam’s deteriorating clinical picture was repeatedly missed and misunderstood; prescribed antibiotics were not administered for hours… and so Sam died.
Lacking the courage and competence to join these dots together, the NHS’s cultural reflex was to protect itself, deflect scrutiny and bury the truth. Hierarchical power was misused. Minds closed to the possibility of improved safety. Perhaps they assumed I would give up or break down? Irrespective, it was a flagrant betrayal of the NHS’s constitutional claim to work ‘at the limits of science – bringing the highest level of human knowledge and skill to save lives and improve health’.
The ineptitude of healthcare’s co-ordinated response exposed cultures shaped by fear, blame and shame, but not compassion, trust or safety — for patients or staff. It was unjust: a festering indictment of defective leadership, governance and accountability.
Real safety depends upon timely feedback, learning how to identify and prevent avoidable harm, and sharing insight. But that requires psychological safety, which in turn depends upon trust. Both are characteristics of ‘just cultures’… but not of ‘cultures of fear’. And both are jeopardised by fear-fuelled and adversarial processes like complaints and litigation.
To be trustworthy (for patients and staff) health services need wiser leadership, better governance and radically different regulation.
Trust and safety are two sides of the same coin. Both have to be nurtured. If doubt undermines one, the other suffers too. Whether they flourish or wither is determined by actions and behaviours.
Pledges to ‘Do No Harm’ are not enough. And ‘Lessons Learnt’ mean nothing unless translated into safer care. If ‘Duties of Care’ mean anything, health services must go further, fast, stopping the cycle of avoidable-harm; banishing cultures of fear, blame, shame and scape-goating; punishing bullying and cover-ups. Safety depends on all of this… and more. Investigate for safety; encourage curiosity; welcome challenge; embrace different perspectives. Strive for learning and improvement. Reward transparency and innovation. Flatten hierarchies. Be fair and consistent. Offer kindness and respect to everyone.
Do all of this… and ‘just and restorative cultures’ will emerge and flourish. Cultural reflexes then will be to prioritise establishing who’s hurt, what they need, and who will help — ensuring that it happens.
Healing — instead of harm — depends on action. That’s what we expected for Sam. He deserved no less. Nor does anyone else. We have the know-how. We need the action. Lives — like Sam’s — depend upon it.
We had a complicated delivery with our first son, Oliver. It started as a home birth and resulted in an emergency C-section in hospital. One year later, when we got pregnant with our second son, Benjamin, we were surprised that, despite our traumatic birth history, the recommended plan was VBAC (Vaginal Birth After Cesarean). The UK maternity approach follows a midwifery model for low risk women and, since we had a healthy pregnancy, we were not scheduled to see a doctor throughout our prenatal care. At 41 ½ weeks, with no signs of labour, we saw an obstetric consultant for the first time. We were told that a natural spontaneous labour with VBAC was still the safest route and we were encouraged to continue daily monitoring with our local midwives and return the following week for ultrasound. Our next appointment was booked for 42 weeks plus 1 day. We never made it.
At 42 weeks, we went for a third membrane sweep with our midwife hoping to stimulate labour. She monitored Benjamin’s heart rate and, after a noticeable deceleration, we were rushed to the hospital in an ambulance. His heart rate appeared to normalize, but since we were 2 weeks overdue, we needed to discuss intervention options. We decided to proceed with a cesarean which was scheduled for later that day. We were taken off monitoring and allowed to walk around the grounds. When we returned for our pre-op later that evening, we were told that an emergency C-section had come in, and our procedure had been rescheduled for the next day. Despite our protest, we were assured there were no risks to mother or baby and were advised to return home to get some rest. We were booked in for an “elective” cesarean the following morning. We never made it to that appointment either.
We arrived home at midnight. At 5 o’clock in the morning, something was wrong. Benjamin had stopped moving. We rushed back to the hospital. There was only a faint trace of a heartbeat and we immediately underwent an emergency C-section. Benjamin was born at 6:30am, having suffered Hypoxic Ischemic Encephalopathy (HIE), an injury that occurs when the brain doesn’t receive enough oxygen and blood. Benjamin was sent to the NICU where he was selected by lottery to participate in a highly-specialized trial of Xenon Gas and Cooling Therapy for babies with HIE.
Benjamin’s first MRI showed that the damage to his brain was relatively minor and localized. This meant that he might only have mild learning disabilities or physical impairments. Since the gas and cooling treatment was believed to prevent further brain damage, we eagerly awaited signs of improvement. Instead, Benjamin started having seizures. This was very concerning. We spent the next 24 hours by his side singing to him, reading stories, playing music, and caressing him. He never had another seizure, but the effects of the oxygen deprivation had taken its toll.
The second MRI revealed a devastating reality. Benjamin’s brain damage was extensive. We were told that he would be dependent on machines and would have no quality of life. On Day 5, with the generous guidance of the NICU team, we proceeded with “compassionate extubation,” allowing us the space and time to share our last moments with him. We washed him, dressed him, took him to the rooftop of the hospital and smudged him with Native American medicines. We laid him down between us in the designated holding space and fell asleep with him by our side. Benjamin gave us 8 hours to deepen our connection with him and fill our hearts with love. He died at 1 o’clock in the morning, just 5 days after his birth.
The following week, the Coroner ordered an inquest to investigate the decisions preceding Benjamin’s birth. For six months we examined the life-changing course of our maternity care and tried to reconcile that errors may have been made. We hoped the inquest would be an opportunity for the hospital to learn from their mistakes. In listening to medical staff give evidence before the Coroner, it became clear that transparency was lacking. The alarming discovery was the admission by a midwife who claimed she made a phone call to the Chief of Staff expressing concern about sending us home. There was no record of this call in written witness statements. The inquest was halted and an internal investigation was launched. It was confirmed that hospital staff tampered with evidence, but they were unable to provide an unequivocal account of what happened and why. No disciplinary action was taken and the inquest resumed. The most challenging part of the court proceedings was hearing testimonies that twisted the truth and characterized us as parents who rejected induction determined to have a natural birth. As the inquest came to a close, we hoped that the truth would prevail.
The Coroner ruled in our favour. We should not have been allowed to go that long post-term. We should not have been sent home that night. And we should not have been categorized as a low risk pregnancy. She made strong recommendations to help uphold the current guidelines of maternity care, which the hospital has now implemented. New measures have been introduced to ensure a more thorough consideration of VBAC pregnancies; post-term risks; and heart rate monitoring. Additionally, special attention has been given towards improved methods of documenting appointments, conversations and date deadlines.
We trust that valuable lessons have been learned and lives have been saved as a result. We believe that Benjamin’s death has changed the way things are done. And yet, we still have many unanswered questions and unresolved issues about the way in which our case was handled. We are left with an overwhelming desire for more transparency and accountability by medical professionals, despite the fear-based culture of litigation. We know that when mistakes remain unacknowledged, it is a missed opportunity to honour the patient and, more importantly, prevent those mistakes from happening again. We will continue to share our story in an effort to promote a wider conversation about patient safety. This is how we parent Benjamin. This is how we honour his legacy.
When Medical Harm Occurs, ‘Do the Right Thing’
A story of how a determined patient, a dedicated physician and a health system committed to open, honest communication worked together to make the best of a tragic situation
Jack Gentry spent 37 years as a Baltimore City police officer, the last 17 years as a member of the SWAT team and a skilled negotiator. When he retired, Jack and his wife, Teresa—a nurse for 41 years—were looking forward to more time for their family and favorite pursuits.
Jack and Teresa’s plans changed drastically on April 8, 2013. Jack was seriously injured as a result of a medical error during an elective surgery to repair two bulging discs in his neck. Jack was paralyzed from the neck down.
The story of what happened next is unusual in U.S. health care and exemplifies how a determined patient working together with a dedicated physician and a health system that live their values of caring and transparency can move forward and make the best of a tragic, life-altering situation.
During the course of the operation, one of the implants that was used went too deep into the spine and actually hit the spinal cord. The surgeon immediately stopped and collected his thoughts. Next, he called a trusted colleague to verify his plan for completing the surgery. And what he did next made all the difference. He told Teresa what had happened, explained his revised plan for proceeding, and asked her permission. She agreed, and he completed the surgery.
The surgeon’s actions in that moment have been praised by leaders in quality and safety as exemplifying behavior that should be the norm in situations of patient harm: communicate honestly all you know when something goes wrong and avoid taking a defensive posture.
“I’ll never forget him saying, ‘things aren’t going well,’ ” Teresa said. “He admitted what happened. I know I thanked him for telling me.” She also told him, “I know this is very hard for you.”
“When you are on this side of it,” the surgeon said, “one of the greatest fears is that the family and patient will shun you as their provider. This is a tragedy and to provide good care, you need to feel welcomed in their life.” He has thanked the Gentrys for supporting him. He remained a part of Jack’s care team in recovery, and is a family friend.
Teresa was impressed by the doctor’s regular visits, ongoing involvement and obvious concern, and though she was working through difficult emotions, she knew that she and the surgeon were both looking out for Jack’s best interests.
Jack recalled waking up from surgery, learning he was paralyzed and then undergoing a battery of tests over the next few days to evaluate his condition.
“About the third day, I realized I was what they refer to as an incomplete quadriplegic. I said, ‘I’ve heard enough. I’ve had enough tests. What are we going to do to fix it?’ These were the cards I was dealt, and I had two choices: I could play the hand, or I could fold and go home. But I had spent a career as a fighter.”
Indeed, years earlier, he wanted to join the BCPD SWAT team and was told he was too old, at age 40, for the physical tests, the training and the demands of the job. Jack became even more determined to make the cut, and went on to graduate second in his class of 20 trainees.
“I pulled on that in my recovery,” he said. Jack would need intense, inpatient rehabilitation therapy, and he was determined to get to work as soon as he could to maximize his recovery potential.
MedStar offered to cover the cost of Jack’s intensive inpatient rehabilitation, beyond the two weeks his insurance would cover. Jack and Teresa gladly accepted, and altogether, Jack spent five months in the hospital. Otherwise, he would have been discharged to a skilled nursing home to continue therapy.
“That would have been close to a death knell for me because I wouldn’t have been able to get the intense PT that I needed,” Jack said.
“MedStar stepped up to the plate and from Day One said, ‘Stay as long as you need to. We’ve got it covered. Whatever you need when you leave the hospital, we’ve got it covered.’ They took a huge concern off my shoulders,” Jack said.
Jack credits the approach MedStar took with his being able to achieve significant recovery.
“I’ll be honest with you, without the doctor and MedStar’s approach to this, I wouldn’t be where I am today. We have settled our differences from a monetary point of view. We never filed suit. We worked it out, and we did it in two years versus five or six or seven years if we had gone to trial. And in the meantime, where would I be?”
“The litigation environment was always there,” Larry L. Smith, MedStar’s vice president for Risk Management, said. “But we agreed that we would deal with that later. It took two years to settle, because we wanted to make sure we were accounting for Jack’s full future needs. There was no need to rush.” When both parties decided it was time to work out the financial terms, they did so in a one-day mediation session
“One thing we can feel good about at MedStar is, whenever we have the opportunity, our first response is to pull resources together to help the team and to help the patient and family,” Smith said. “Our message to our staff is, ‘Do the right thing.’ ”
As a result of the open, compassionate way that his surgeon and MedStar responded, Jack and his wife, Teresa, have become vocal advocates for MedStar’s approach and the larger movement across the country in the way healthcare providers respond to unintended medical harm.
March 1, 2015
One of the happiest days of Mary’s life was when she celebrated the birth on her second grandson, Logan. Eleven days later, she would die. She only got to see Logan that one time, the day he was born. Mary needed an aortic valve replacement. She had a severely calcified, bicuspid aortic valve that needed to be replaced. She was an otherwise, healthy 68-year-old with two young grandsons and plans to enjoy her retirement. Had the surgeon just stuck with the aortic valve replacement, she would be enjoying her grand kids today. Instead, the surgeon decided at the last minute to add on a completely unnecessary, very risky procedure called septal myectomy. He provided very vague information about the procedure and we learned after the fact that he himself had very little experience with septal myectomy. We also learned that the assisting surgeon apparently, had very little experience with the septal myectomy surgery as well. So there was absolutely no thought or pre-planning for the septal myectomy procedure. Not surprisingly, the surgeon botched the septal myectomy procedure, leaving a hole in Mary’s heart that could not be closed. In trying to fix his mistake he also cut a chord of the tricuspid valve and had to repair that as well. It seems that he was so in over his head in the O.R. with his mistakes that he had to call in another surgeon.
Unfortunately, due to all the mistakes and extended surgery time, Mary left the O.R. in poor condition which would continue to deteriorate in the ICU. Mary was put on a dialysis machine. She also suffered cardiac arrest in the ICU. Her potassium level spiked suddenly and stopped her heart. To this day, no one could explain why this happened. She was resuscitated but the damage during surgery and in the ICU was too much or her to take. We ended life support 3.5 days after surgery.
To this day, we struggle to understand why this doctor would choose to perform a very high risk procedure that he has limited experience with at the last minute in an attempt to fix an issue that he himself estimates was only 5% of Mary’s problem. When asked why he chose to do a very risky procedure to fix a minor problem, his answer was, “I was just trying to be perfect as a surgeon”. We interpret that as pure ego. The aortic valve replacement alone would have fixed the issue without the septal myectomy procedure.
No matter what the doctor shares about this case, before, during or after, surgery, nothing can take away from the fact that he botched a surgical procedure that he has limited experience with and that didn’t need to be done and this directly resulted in the very poor condition of Mary, post surgery. Also, after the fact, in speaking to a cardiologist we use, we learned that our cardiologist never refers patients to this specific doctor or medical group and this was the case before our family member died.
To make matters worse, the response from the hospital lacked any sympathy and was appalling and pathetic at best. But, finally after a year of trying to get more answers, they did send us a letter that following their own “internal investigation” they came to the conclusion that there “there may be opportunities for improving care” and that the doctor was up for peer review. To add injury to insult, we received a hand-written sympathy card from the hospital with the wrong name for Mary. When we called the number on the card, it was disconnected. This is the only thing the hospital did for us. The hospital and the surgeon clearly preferred to keep this event quiet as they knew it was a bad death so nothing was done about it in regard to us, Mary’s family.
We struggle to understand the thought process and clear lack of proper planning in an already risky surgery. For example….
Why wasn’t Mary provided specific details and risks associated the septal myectomy procedure ahead of time like the other procedures that were done? The doctor has very little experience with the septal myectomy procedure and the assisting surgeon has no experience with the procedure. Yet we know the senior partner surgeon in the group has experience with it so why wasn’t he the assisting surgeon on the case?
Most importantly of all, why is the doctor doing a procedure that is so risky to fix an issue that is 5% of the patient’s problem?
Why didn’t he come and talk to Mary in the pre-op holding area to discuss the procedure and answer any questions? Instead he sent a nurse to get her signature for the septal myectomy procedure. It’s our understanding that this is against the law.
Unfortunately, for more than a year after Mary’s death, we investigated and found out from several cardiologists and heart surgeons that the doctor has a reputation for taking unnecessary risks. The unbelievable grief and frustration and lack of caring haunts us to this day. Perhaps, being a part of your organization is a way to filter or extreme frustration into a positive cause to help educate people on what to ask physicians, how to vet them properly.
I never imagined I would work in healthcare. Like most people, my impression of hospitals was that they were calm and organised and had a characteristic smell of antiseptic. Then I was sucked into the vortex of hospital operations as I cared for my daughter as she suffered with brain cancer. I saw distraction, error, chaos. I saw well-meaning people unable to function as they wished. I saw and felt pain and suffering and after my daughter passed, I had to do something about it. The terrifying numbers of preventable deaths are concerning in the abstract, but when you see the suffering of innocents it becomes visceral, painful, and in my case an obsession.
I remember clearly the day that Jem showed her first symptom, she was 15 months old. I arrived home from work and there she was at the front door, waiting for me, as always. Her arms raised, saying ‘Dad, dad, dad’, waiting to be picked up and carried through the house as I found and greeted the rest of the family. It was a routine I cherished, that I began to look forward to on my commute home from work, only today something was wrong. Her broad and infectious smile did not have it’s usual symmetry and nether did her eyes; instantly I was worried. I picked her up and she snuggled to my hip and hugged me as I carried her to the kitchen. “How has Jem been today” I asked. “Ok, but she was nauseous at lunch time” her mother replied. “She hasn’t really kept anything down since breakfast”. It being dinner time I was concerned and took Jem to my study, where I looked up her symptoms on the internet. The loss of symmetry of facial expression pointed to only two causes: Bells Palsy which describes damage to the nerves supplying the face or a brain tumour affecting the cranial nerve supplying the nerves of the face, tongue and oesophagus. I gave her a snack and though hungry, she appeared to gag. I had an ominous feeling. The nausea was a worry. I got her a milkshake and a straw and tried her on that. To my immense relief she drank it down and her symptoms literally disappeared. We decided to put her to bed and take her to the hospital the following morning.
When we awoke, Jem’s symptoms had returned. We dropped her sister to school and headed straight to the hospital. The emergency department was a mad house. Tired, harassed-looking people in pale blue uniforms arrived at irregular intervals, asking the same questions as the last over and over. No-one seemed to know what to do, so we waited….and waited. After 7 hours or so a listless, sleepy paediatric registrar appeared. “Bells’ Palsy he said in a flat tone. “Take her home and if her symptoms don’t improve bring her back in six weeks”. I explained that, given her problem with swallowing, I was concerned the problem was a deeper one and asked for an MRI. He informed me that he would have to discuss my concerns with his colleagues and left. A nurse came in and applied some topical analgesics to her writs and feet.
Five hours later the registrar appeared again, looking even more tired than before and informed us that some blood tests were to be performed. A colleague accompanied him, with whom he conferred. “You have to learn to do it some time” she said cheerfully. The registrar looked apprehensively at my daughter and approached with syringe in hand. A nurse was called in and she pinned Jem down, pulled off one of the analgesic plasters off and the registrar began the first of his attempts to draw blood from my baby girl. She screamed as he jabbed her wrist and broke free from the nurse’s grip. The inexperience red registrar, sleepy as he was reacted altogether too slowly and the needle sheered through her delicate flesh leaving a livid red semi-circle. Jem was always one of those children who was brave and stoic, who recovered quickly and made a minimum of fuss. I picked her up, and she soon calmed down, despite the obvious pain and shock to which she had been subjected. The registrar asked his colleague to take over the task, but she demurred. This time an analgesic plaster was removed from her foot. “She is very strong” the nurse said “perhaps you could hold her”. I looked at Jem reassuringly and clamped down on her ankle as firmly and gently as I could. As the needle penetrated the sole of her foot she tried to break free, screaming in intense pain. “She is a really tough little kid” I told the registrar “this is really hurting her”. The registrar looked at me dubiously and said “Nonsense, see these pads, they make her numb. She can’t feel a thing.” And with that he started to pump the needle around inside her foot, looking for a vein. “Why is she screaming then?” I persisted. “She doesn’t like being held” he opined. I looked at her contorted face and never had I seen a look of such distress. She was screaming with such conviction that her tongue was rippling. But only on one side…..
“Listen” I said forcefully. “Stop doing that. I am telling you, you are hurting her”. He looked at my serious face and withdrew. “Did you notice her tongue?” I asked. “Tongue?” he said numbly. “Yes, tongue. It was rippling but only on one side.” He gave me a look of incomprehension and I explained about the cranial nerve grouping. The consultant was called, and I told him the same thing. “Take her home and come back in 6 weeks if the symptoms persist…” he began. “There is no way we are leaving here without an MRI” I responded, repeating the rationale. He looked at me sternly “The imaging lab is shut for the night, but I will try and book her in for tomorrow.”
I made a mental note of the brand of analgesic pads and we headed home. Once she was settled, I looked it up. The window of efficacy was 60-120 minute after application. “How can they not know such a basic protocol?” I wondered.
The next day was one of the worst of my life. The MRI showed a large mass (bigger than a golf ball) in the middle of her brain. We would have to travel for special treatment, we were told, and so our immersion into the confusion of hospitals really began. Her surgery was scheduled quickly, but the biopsy revealed a dire prognosis. Also, because of the location of the mass the surgeon had noted for an entry that required a cut through the head of the neck muscle. One of the cruelest cuts imaginable of the human body. Normal intra-cranial surgery is not very painful. I noticed her obvious pain, but it took days of arguing before the error was acknowledged.
There were many such incidents over the coming weeks. Far too many to mention, some to0 horrible to tell. Suffice it to say that despite the best efforts of well meaning staff, my daughter endured a great deal of unnecessary suffering. She suffered extreme pain, great fear and even torment in a life that was cut all too short. Why? Because there are deep systemic problems that make errors and omissions inevitable in hospitals. The fragmented information environment, a lack of effective team co-ordination, among many others. So we took her home and cared for her there. She died at 19 moths of age. The last words I spoke to her were ‘I love you Jem’ as she lay in her mother’s arms and gave up her last breath. I decided then that I would design a system to overcome these problems as a legacy to her.
Jem’s life was all too short, yet the most beautiful and valued experiences are often brief, consider:
a buttery glowing sunrise;
a boring red-orange sunset;
a peal of joyous laughter;
a flash of shooting starts;
a single fragile blossom;
a cloud of butterflies; or
an unexpected rainbow.
Such things light up our lives. They stand out like bright and shining jewels in our memories. No pure and beautiful experience is lessened by brevity, it is made more intense and more deeply treasured. We will forever treasure the time we had with her. We have vowed to use what we have learned through her suffering, to make her legacy. I am an inventor and now work in healthcare. The system my company has developed has been shown to triple nurse time spent on patient care, while helping ensure quality care is delivered and keeping the patient safe. That is her legacy.
In loving memory of Michael Seres, 1969-2020
Michael was diagnosed with the incurable bowel condition known as Crohn’s Disease as a 12-year-old. Having had over 25 surgeries Michael was left with 40cm of small bowel and intestinal failure. He remained in hospital for 18 months receiving all his food and drink via an intravenous feed known as total parenteral nutrition. Faced with no other alternative on October 8th, 2011 Michael became the 11th patient in the United Kingdom to undergo a rare intestinal transplant at The Churchill Hospital in Oxford.
As part of his 15 hours of surgery Michael woke having been given an ileostomy. This is where part of the bowel is brought to the outside of the body and your waste collected in a bag. Managing an ostomy is a challenge. Dehyration is a huge issue with around 25% of patients readmitted. Michael wanted to change his life and the lives of all patients connected to medical bags. He bought parts on line and hacked together a sensor.
That hack became 11Health an integrated platform of proprietary sensors and software. The sensors automatically capture data and then delivers real time interventions back to the patients and healthcare professionals managing patients. Michael’s passion is patient led innovation.
More recently Michael is a two-time cancer patient coping with high grade b cell lymphoma as a result of the medications he takes to keep the intestine from rejecting.
Going through a transplant where 5 out of the first ten died was incredibly scary. Michael lives his life knowing his survival rates have remained at 50/50. His belief is that healthcare is just about a relationship. It takes mutual empathy, respect and trust between patient and doctor, but it takes great bravery of a medical team prepared to partner with a patient. It is not simply about the tech, it is about a change in culture and being brave. That is the big shift we need in healthcare.
Michael became the first ever Patient-in-Residence at the Stanford MedicineX programme where he helped build a model of care and innovation called Everyone Included. If you are curious, brave and have passion then we truly can solve these issues together.
Update on June 1, 2020
The Patient Safety Movement Foundation was saddened to hear of Michael’s passing on May 30, 2020, due to a sepsis infection. Michael touched the lives of many and he will be deeply missed by our staff, volunteers and global network of partners and patient advocates. Please read Michael’s obituary here.
Meredith was born full term on 9/16/09. She was a surprise since I was 43 (at time of conception) and all attempts to become pregnant had failed since our son was born 5 years previous (including 4 miscarriages). In April/May of 2009, we learned that Meredith had a heart defect that was common in babies with Down syndrome, and then that was confirmed via amniocentesis. I struggled so much with this diagnosis. Until she was born- then it no longer mattered. She was our precious girl!
Meredith had complications from the start, more so than is typical under these circumstances. She was in the NICU for 21 days where she was cared for beautifully. Most of the reason she was kept so long was because of feeding issues- she didn’t eat enough so was fed primarily through a feeding tube.
It was imperative that she eat to grow strong and big so that she could have her heart surgery. Finally they taught my husband and I how to feed her through a tube so that we could bring her home. Which we did on her 3 week birthday.
Two days later at her first Pediatrician appt, she was found to have a high fever. I was told with infants under 2 months, they have to go to the hospital with such a fever. We could not return to our original hospital because they don’t have isolation rooms in the NICU- we had to go to a different one within the same system. Once there, the pediatric cardiologist examined Meredith and put her on 2 heart medications to help her heart pump stronger. She would have needed heart medication at some point anyway before her surgery- this was just early.
The day after her readmission, I spent about 6 hours with Meredith. I fed her- she did great without the feeding tube! I was excited. We snuggled and napped together. I left around 4:30pm to have dinner with my husband and son, feeling hopeful- her fever was lower, she had color back in her skin and she ate pretty well.
Around 7pm, I received a call saying that my daughter was in critical condition and that we better get down there. They wouldn’t let us anywhere near her room at first, said they were working on her but their faces said it all. No one could tell us why her heart had slowed down/stopped. It was not expected even with her heart defect. We held her as she grew gradually colder. My heart broke into a million pieces. I loved her so very much.
The day after her death, we were called by a NICU doctor who said they were releasing her body to the county Medical Examiner, rather than the funeral home, because they suspected that she had been given too much of one of the heart medications and it had to be determined whether this caused her death.
It was confirmed 2 days following her death that she had been given 2-3x the amount of Digoxin she was intended to have. The attending doctor rewrote the cardiologists prescription, adding “/kg”, but not reducing the amount.
Further, all systems in place to catch these errors failed- in the pharmacy and nursing. My baby girl, our longed for and much prayed for second child, should be alive. My broken heart exploded again.
Hello, I’m Kimberly and I want to share this story so that other patients who have chronic anemia and intestinal bleeding and are not getting better may find an answer. I don’t want what happened to me happen to another patient. I am a mother, wife, and rare disease advocate as my teenage twin sons have rare diseases. One has a brainstem angioma & one has Crohn’s Disease. I am a GIST Sarcoma & Thyroid Cancer survivor. I love my life and my children. I almost lost all of it due to years of misdiagnosis. I want to help others and I am dedicating my heart to improving legislation for patients and restoring compassion for patients. It’s important that those within the medical community think outside the box of common diagnoses for anemia when you have a patient with prolonged symptoms like I had. Just because a condition can be rare does not mean a doctor should discount it. Keep GIST Sarcoma (gastrointestinal stromal tumor) in your mind. GIST Sarcoma is a rare, soft tissue cancer. It does not respond to traditional chemotherapy or radiation. It is believed there are more GIST Sarcoma patients out there with the same symptoms I had and they are being misdiagnosed as well. This is sad, because often, sarcoma patients are misdiagnosed for so long then it is too late to save them. This has to change! And it begins with educating the medical community. When you have a patient, or you are a patient, with chronic, unresolved anemia, please consider GIST Sarcoma tumor that could be hiding in the intestines.
I was sick for five, long years. I was chronically, sometimes severely anemic, had life threatening gastrointestinal hemorrhages from my small intestine. Doctors could not find the cause of the internal bleeding. I recall waking up in an ICU with a hematologist at my bedside saying to me “Well, we almost lost you.”
This was only the beginning of a 5 year journey of hospitalizations and procedures… I had every single sign and symptom of GI bleeding and a GIST tumor. The hallmarks of GIST tumors are anemia and GI bleeding yet every single physician who attended me in Jacksonville, Florida missed the tumor in my small intestine. Every gastroenterologist, hematologist, internal medicine doctor, ER physicians, radiologists. The tumor was found via double balloon enteroscopy after 5 years of illness and misdiagnosis by physicians who had tried to find the source of my hemorrhages. I endured approximately 7 endoscopies & colonoscopies, bleeding scans, camera pill studies, angiogram and 5 years of chemotherapy for hours of intravenous iron that my body could not keep due to the internal bleeding–and probably procedures I don’t remember. I was in chemo units surrounded by cancer patients and my cancer was overlooked or misdiagnosed. I look back on this and my heart breaks every time.
It was Memorial Sloan Kettering in NY who questioned why doctors did a double balloon enteroscopy when my tumor was obvious to them on a CT Scan on first sight when they did their own scan. This is baffling to me to this day as I had had two CT Scans and the previous doctors had missed the tumor on those. Maybe it had grown? I will never know this answer. I had been (mis)diagnosed with arteriovenous malformations (AVM’s), or ulcers which no one could locate and even told that my gastrointestinal bleeds were heavy menstrual periods when I was actually having GI bleeds in a hospital.
This is the common, go-to diagnosis when women have anemia. I was hospitalized many times over the five years. A couple of hemorrhages almost took my life. It is a miracle I am alive today. To add to the symptoms of severe anemia I also had an undiagnosed rare cell form of Thyroid Cancer. I had asked doctors to please look at and ultrasound the lumps on my thyroid found by my family doctor and they were dismissive and the large medical facility I was a patient at would not approve me for new care. They had already misdiagnosed the first cancer so when the second cancer of the thyroid was confirmed by a doctor outside that facility they terminated my care to avoid liability. This was heartbreaking, humiliating and terrifying that a well-known, highly touted medical provider who claims “the patient comes first” sacrificed me to the purpose of protecting themselves, not me. I was a good patient. I was a compliant patient. I was a well-insured patient and my insurance paid this clinic a lot of money.
They had no compassion for me. I have never felt so low & uncared for. They were not concerned with the outcomes of my cancers or my life. But, I found great care at the best cancer hospital in the world at Memorial Sloan Kettering Cancer Center in New York City. I found a GIST Sarcoma specialist there and a great head and neck surgeon for my thyroid cancer. I was treated with compassion and I felt safe there. They still follow my care today even though I live far away. This experience has led me to become a patient advocate and took me all the way to Capitol Hill in Washington, D.C. where I shared my story with congressional representatives and I lobbied for compassion for patients, sarcoma awareness and am asking for better legislation to protect patients as much of this has been legislated out in many states.
We put our trust, faith and our lives in our doctors and when we are not getting better and we are very sick, we have the right to seek another opinion or care elsewhere. We should not be punished for the provider’s mistakes and we certainly should never be kicked to the curb like we are garbage. We must restore compassion in healthcare and reduce diagnostic errors.
I’m Jess, and this is my story. That’s me with the long blonde hair when I was about 12. Around that time I started passing out, especially if something scared me, like if one of my cats jumped up on my bed when I was sleeping or if Mom ran a blender early in the morning. First I’d get really dizzy and then I’d just faint. Mom said it was really frightening because I’d turn blue and stop breathing. Maybe it’s a good thing I don’t remember much about it… The ambulance had to come a lot and it was really scary because we just didn’t know why it was happening…
They sent me to the IWK, our big children’s hospital, and the doctors there thought it was epilepsy, and then about a year later, they said it wasn’t. It was so frustrating because it just kept happening! It even happened when we were on vacation in the Dominican, and I was so out of it, Mom and Dad had to take me to the plane in a wheelchair! So when we got home, we went back to the IWK, but they still didn’t have any answers. It went on like this for a couple more years, with lots more hospital visits, but never finding out what was really wrong with me.
By now I’m in grade 10 and Grandma had read something about Long QT Syndrome, a heart problem, that looks like epilepsy but it’s not, and it’s really serious. We asked the doctors at the IWK if that was what I had, but the neurologist said that it couldn’t possibly be it. Long QT was found on one of my ECGs taken at a different, smaller hospital closer to home, but when we showed it to my doctors, they told us that the ECG was wrong. It was so frustrating, and not long after that we switched neurologists. Maybe this new doctor would know what was happening to me…
Mom and I asked the new neurologist to refer us to cardiology for a full work-up because we still thought it was LQTS, but he wasn’t happy about sending us. He told us it was a waste of time but he said he’d do it anyway because we needed to let go of this “LQT thing.” Mom said he was condescending, but I was thinking, okay, maybe now we’ll get somewhere!
So the cardiologist ordered a bunch of tests; a stress test, Holter monitor, echocardiogram and another ECG. We went and had the tests done and then met with him again for the results. We were so surprised when he told us that all the test results came back negative and I didn’t have LQTS. Mom argued with him, she even tried showing him some information she found online about it and she mentioned the one positive ECG again, but he just dismissed us.
I was so mad!!!!
So grade 11 and 12 continued to see me fainting and our frustration with my doctors kept growing. A few months after the cardiologist told me I didn’t have LQTS, we were still upset that I didn’t have a diagnosis and we met with my neurologist again and he told me he couldn’t do anything more for me. He told me to go home and learn how to breathe through a ‘spell’ and told Mom that she was wasting money on an ambulance. What were we supposed to do? Where were we supposed to go from here? 4 long years this has been going on… He’s wrong, this is real and it’s NOT in my head!!!!
And ten months later I died…
Not now, not ever… No more birthdays, I’ll always be 17…
No graduation, NO PROM!!!!
No telling my boyfriend, You did your best, it’s okay you couldn’t save me
No time for goodbyes…
No snuggling my new baby niece
No arms to hold my parents up
No chance to tell my sister, It’s okay university will be great, you’ll love it!
No telling my brother I could have loved him better
No way to tell the doctors that I’m working on forgiveness, but I’m just not there yet!!!
And so it began, life without me.
I did, after all, carry the messed-up LQT gene and my family all had to be genetically tested. As it turns out, my dad is the genetic carrier, but I want him to know that I don’t blame him… Luckily, my brother and sister are clear! It is so hard watching the pain my death has caused… My family, my boyfriend, my Auntie, my friends… I feel so helpless watching it all…
This didn’t need to happen!!
So, this is what happened:
And this is what needs to happen now:
So, this is the end of my story, but not the end of me. Yeah, I’m mad I’m here, and not there, but I live on in the magnolia that blooms on my heaven day in May, in the paper lanterns lovingly sent high into a night sky, and in the gratitude of finding a heaven-sent penny. I live on in the pacemaker of my father, and in the laughter of my sister. I live on in my namesake, the daughter of my brother. I live on in remembrances of those who will always love me. And Mom… Oh, Mom, I live on in your fight, your fight for me and my gone-ness and for all those who are destined to follow me. Thank you for giving me voice when I had none. I will be with you always, laughing and loving you all, I will see you through.
I am Jessica, and I live on.
Every patient in the hospital has a story and an experience.
It was a horrific car crash. On the way home from swim practice in 2004, eighteen-year old Brian Boyle’s future changed in an instant when a dump truck plowed into his vehicle. He was airlifted to a shock-trauma hospital. He had lost sixty percent of his blood, his heart had moved across his chest, and his organs and pelvis were pulverized. He was placed in a medically-induced coma and had to be resuscitated eight times. When Brian finally emerged from the coma two months later, he had no memory of the accident due to the concussion he sustained in the crash. He could see and hear, but not move or talk. Unable to communicate to his doctors, nurses, or frantic parents, he heard words like “vegetable” and “nursing home.”
If he lived, doctors predicted he might not be able to walk again, and certainly not swim. Then, miraculously, Brian clawed his way back to the living. First blinking his eyelids, then squeezing a hand, then smiling, he gradually emerged from his locked-in state. The former swimmer and bodybuilder had lost one hundred pounds. After three years in recovery, he staged what many consider to be one of the greatest comebacks when he crossed the finish line at the Hawaii Ironman triathlon.
Brian is now a published author, healthcare writer, and international healthcare advocate. As one of the leading voices in the field of patient safety, he has given over 150 keynote presentations all over the world for all audiences of healthcare providers regarding the topics of the patient experience, innovation, quality of care, gratitude, effective communication, and patient safety. He also gives a variety of teaching seminars and interactive workshops on these topics, and has participated in several global programs regarding patient safety and quality of care.
The observations that Brian made during his time in the hospital truly inspired him and helped him understand how important the role of communication is between the patient and healthcare provider. When he was able to learn how to talk again, he soon discovered that the power of the voice is amplified when the message is of gratitude, that a simple smile cannot be underestimated, and that body language and tone of the voice are critical components within the hospital room.
In his presentation, Brian offers a rare glimpse of what the patient and family are going through and covers everything that both he and his parents wish they had in the hospital. Brian also provides gratitude and vital information that will inspire caregivers to implement new and innovative ways of providing care, and guidance for families when facing an unexpected tragedy.
Brian’s story about catastrophe, survival, and transcending all odds has initiated new and innovative strategies for improving patient safety and quality of care on an international level, as well as serving as a learning experience for healthcare providers of all backgrounds. At the very heart of Brian’s story and presentation is his appreciation and gratitude for the work that healthcare providers do for their patients.
Throughout his healthcare advocacy, Brian has been recognized as one of Men’s Health magazine’s ’20 Heroes of Health & Fitness’ and awarded several national awards from the American Red Cross, Johns Hopkins, and the ‘Champion of Change’ award from President Obama at the White House in 2012.
His story has been featured on the Ellen DeGeneres Show, NBC’s Today Show, ESPN, and several other programs throughout the country that have earned Emmy nominations and awards. His journey of courage and determination has touched the hearts of many and his story and the message it carries has been celebrated around the world.
When it comes to the patient experience, Brian has become a voice for the voiceless.
My 65-year-old father, Curtis James J Bentley, underwent successful surgery to place a stent in his heart. He was discharged from the hospital and I was told that he was “100% clear.” While recuperating at home, however, he started bleeding. He was coughing up blood, having nose bleeds and blood was present in his stool and in the toilet.
I took him to the emergency room, where he was diagnosed with a lesion in his colon and admitted to ICU. That was on a Friday. I left once on Saturday to get food and clothes in preparation for staying with him the entire weekend if need be.
On Sunday morning, around 4 am, I was awakened and decided to take a much needed break. I stopped at the snack machine, called my husband and sat for a while in the waiting room. Then I heard a Code Blue sound. At first I thought it was for my father, but it was for the neighboring patient. I sat a little while longer, but then I had an uneasy feeling. Something told me to go check on him.
When I walked in, I couldn’t see my father’s face right away. One leg was hanging out of the bed. Embarrassed, I asked him what was he doing, but he did not respond. I asked him a second time as I was covering him up. The TV went to a commercial, and at that moment, the light hit his face which was against the railing. He was positioned like he was trying to get out, perhaps trying to get help. When I looked closer, I saw that my father was taking his last breath. I knew immediately that it was his last breath, because I watched my stepfather die in my arms years ago. Their last breaths were identical.
I ran out calling for help. A nurse came. During this time I’m yelling, “Where were you, where were you? Why wasn’t a code called for him?” She had no answer. I had been in the room with my dad. No nurse had been present. No machine had alerted them to his deteriorating condition.
My father was intubated and placed on life support. I found out by reading his medical records that he had gone into a coma, was brain dead, suffered paralysis and necrosis. No one at the hospital told me that. He was in a coma for seven days and he never came out of it. During those seven days, I talked to my father, because I was told the hearing is the last to go. I called to him. I begged him not to go. It took everything in me to sign the form to take him off life support. My oldest sister and I lay on his chest. My baby sister and my best friend were there giving us much needed support. We had to endure those last breaths, one last time.
My father did not receive timely care and rapid response – I was the one who found him unresponsive and alerted the nurses to his last breath. There were no nurses with him and no monitors that could have alerted them that he was in trouble. Why? If there are 15 patients in ICU, should they go uncared for because the focus is on one patient?
I have asked the hospital and his physicians these and many other questions. But more than four years after his death, they still have not provided this information. I entrusted my father into their care, and they don’t care enough to speak openly and honestly with me about what happened to him. “Deny and defend” is what I have gotten thus far – an additional injury.
Stewart Dolin had the perfect life. He was married to his high school sweetheart for 36 years. He was the father of two grown, highly functioning, employed children with whom he had a very close and meaningful relationship. He was a senior partner of a large international law firm, managing hundreds of corporate lawyers. He reached that level because he enjoyed his work and derived satisfaction from cultivating relationships with his clients and helping them achieve the results they desired. He enjoyed travel, skiing, dining, joking around with his family and friends and an occasional great cigar. He was high on life! He and his wife had planned a trip to South America for the fall of 2010 and were taking their children to Costa Rica later that winter. He was 57 years old.
In the summer of that year, Stewart developed some anxiety regarding work. He was prescribed Paxil (paroxetine), a selective serotonin reuptake inhibitor (“SSRI”). Stewart’s prescription was filled with a generic version of Paxil manufactured by Mylan. Neither Paxil nor the generic version which Stewart was prescribed listed suicidal behavior as a potential side effect for men of Stewart’s age. Within days, Stewart’s anxiety got worse. He felt restless, had trouble sleeping, even asked his wife to listen to a meditation tape with him the night before he died (hardly typical behavior). He kept saying, “I still feel so anxious.” He developed extreme and dangerous thoughts. On July 15, 2010, just six days after beginning the medication, following a regular lunch with a business associate, Stewart left his office and walked to a nearby train platform of a train he never took. A registered nurse who was also on the platform later reported seeing Stewart pacing back and forth and looking very agitated. As a train approached, Stewart took his own life. This happy, funny, loving, wealthy, dedicated husband and father left no note and to this date no logical reason has been discovered that explains why someone who had previously enjoyed and appreciated his life as Stewart had would suddenly end it.
We did not know it then, but Stewart was suffering from akathisia. Akathisia is a disorder, induced by SSRI medications, which can cause a person to experience such intense inner restlessness that the sufferer is driven to violence and/or suicide. It has been said, “Death can be a welcome result.” For reasons related to the strong political and lobbying power of pharmaceutical companies, akathisia is rarely explained as a possible side effect of SSRIs and medical professionals and the general public know very little of the existence of this disorder. In fact, they want you to believe that akathisia is simply “restless leg syndrome.” As a result, sufferers of akathisia, as well as the medical professionals with whom they consult, are not able to recognize the symptoms of akathisia and therefore take the steps necessary to stop it. This lack of knowledge can and has tragically resulted in akathisia sufferers taking their own lives, leaving behind devastated loved ones. To date there are no organizations focused on akathisia awareness and therefore no website or materials regarding the disorder that can be accessed by sufferers or medical professionals.
MISSD (The Medication-Induced Suicide education foundation in memory of Stewart Dolin) is a unique non-profit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from symptoms of akathisia are accurately diagnosed so that needless deaths are prevented. A website, the creation of educational materials and support of educational conferences, will help to raise awareness and knowledge of akathisia. If this could happen to Stewart, no one is safe. MISSD will make a difference!
Damon Daniel Weber, born 8/8/88 with congenital heart disease, had two successful surgical repairs by the age of four, and thrived into his teen years. A top student at one of the nation’s leading magnet schools, he was a theater director and actor who made his national television debut on the HBO series, Deadwood. He also skied, sailed, and rode wild horses with a world-champion bull rider.
After developing complications related to his original repair, Damon underwent a heart transplant in January of 2005, at age sixteen-and-a-half. The transplant was successful, and worked even better than expected. Damon returned home after 30 days with an excellent prognosis. There was jubilation in the family and among his friends.
But unbeknownst to Damon or his family—though his cardiologists knew—Damon’s heart donor had tested positive for Epstein-Barr virus (EBV), known as “the bugaboo of heart transplants.” But no treatment was given to Damon, appropriate preventive measures were not taken, nor were any warnings provided to Damon or his family. When Damon started reporting flu-like symptoms and other signs of EBV infection several weeks after returning home—cough, fatigue, fever, loss of weight, mental confusion—his cardiologists dismissed them, and said there was nothing to worry about. When the symptoms worsened and his family brought him in to the emergency room, the cardiologists still insisted on treating him for a full course of rejection, despite the fact that he tested negative for rejection and had every symptom of infection.
It was like stepping on the accelerator instead of the brake.
The treatment for rejection—suppressing the immune system to stop the patient from rejecting the heart—is the opposite of the treatment for infection. With infection, the treatment is to reduce the immune suppression so the patient can fend off the infection with natural defenses. Damon’s head cardiologist, the unit’s medical director, knew what the right treatment was: a year earlier she had co-authored a book chapter which stated that reduction or temporary cessation of the immunosuppression is the proper standard of care for a patient in Damon’s condition.
So not only did his cardiologists fail to help Damon, they actually hindered him from fighting back with his own strength by not following their own protocol. By the time his cardiologists had correctly identified EBV as the cause of his illness, it was too late. Damon’s unchecked infection had turned into a full-blown case of post-transplant lympho-proliferative disease (PTLD), and he died a terrible death, his organs ravaged from within.
Following his death, Damon’s family brought a lawsuit against the hospital and the cardiologists. After failing to produce his relevant medical records for three years, Damon’s chief cardiologist testified at her deposition that his records had been shipped to an off-site storage and “could not be located despite all best efforts.”
In 2012, Damon’s father, Doron Weber, published a critically acclaimed memoir about his son’s life, Immortal Bird: A Family Memoir (Simon & Schuster) but to date the lawsuit remains unresolved and Damon remains gone.
Mark was 26 years old and living in Florida. He collapsed one day while out with friends and suffered a traumatic brain injury. He was taken to the hospital, where he was fully conscious until he was placed into a drug-induced coma.
On the second day in the hospital, Mark developed pneumonia, probably due to a mishap with his feeding tube. His parents were told that all was well and that it was a matter of time before he would awaken. On the fifth day, Mark’s mother was informed that he was in serious condition. The doctor questioned Mark’s parents about their son’s use of cocaine. Mark was not a cocaine user, and had not been in the past. That being established, the doctor mentioned that the culprit might be the propofol Mark had been given, and said he would recommend dialysis as a treatment for propofol poisoning. Another team of doctors came in, however, and decided Mark wasn’t ready for dialysis. This was a major error, according to later reviewers of Mark’s record. On the final day, a new doctor said he would move Mark to the cardiac unit and give him dialysis. Mark was prepared for dialysis but never received it. After this doctor left, Mark was not moved to the cardiac floor but to the basement, where he was placed in a barren room without even a char. The parents later learned from the medical records that vital medication had been considered and declined.
As Mark’s parents were visiting him in his new room, a nurse told them there was an emergency and asked them to leave the room. The next news they got was their son was dying and that treatment was futile. Mark’s parents were brought back into the room and he died in his mother’s arms.
The medical examiner ruled that Mark’s death was due to excessive bleeding caused by alcohol and drug abuse. Mark had no history of substance abuse; blood work done at the hospital had shown no drugs in his system and the equivalent of one light alcoholic drink. Later, Mark’s parents had his records reviewed by an independent physician who said that their son’s rapid decline was caused by a condition called propofol infusion syndrome. The reviewer also found many other system failures in Mark’s case. Because Florida law forbids lawsuits over the death of adult children, Mark’s parents were not able to get the answers they were seeking about his care. They wrote the hospital and received a written apology acknowledging poor communication, but the hospital refused to meet with them. They were, however, able to get a retraction of the coroner’s erroneous report that their son had died as a result of substance abuse.
On January 15, 2001, Justin Micalizzi, a healthy 11-year old boy, was taken into surgery to incise and drain a swollen ankle. He was dead by 7:55 the next morning, leaving behind two grieving and bewildered parents who desperately wanted to know why their son had died. But medical care was to fail them twice – first their son died and then no one would explain to them why.1
Justin’s mother, Dale Ann Micalizzi, has spent years searching for answers as to why her son died from what she had been told would be a 10-minute procedure. No one involved with the case would talk to the family, and Justin’s original medical records were incomplete and inaccurate. Depositions revealed some information that the family had not known, but the case was ultimately dropped for lack of evidence. Dale went on to become an international figure as a patient safety advocate, but despite her many contributions to the field she was never able to find out what had ultimately happened to Justin during the surgery.
Nine years and nine months after Justin’s death, Dale received a call from a physician with whom she worked on patient safety issues. He said that he was informed that a colleague of one of Justin’s providers confided that he couldn’t live with himself any longer, knowing that Dale was still searching for the truth. He went on to say that the hospital doctors, administrators, and attorneys had known from the beginning that Justin was overdosed on the medication phenylephrine after the physician reached for the wrong medication in error and used it in overdose proportions.
Dale wrote a letter to the physicians and administrator of the hospital in which she said, “Although this physician’s informant’s information was troubling, it was also healing. You see, parents blame themselves when something happens to their child. It was our duty to keep him safe. You may not understand this, but I could literally feel the burden of the unknown melting from my shoulders even though I have yet to hear the rest of the story.2
Dale shared this new information with the physicians who had helped her over the years and has presented the case study for multiple healthcare conferences, medical schools and Grand Rounds, while also authoring articles on the topics of patient safety, compassion and disclosure. She said, “Learning from the event is important to me. My child did not die in vain.” And, we can do better.
Justin’s HOPE Project at the Task Force for Global Health
Nineteen-year-old Alex James, a Texas college student, collapsed while running on a university jogging path in the late August heat. He recovered and was taken by ambulance to the emergency room, where tests showed a low potassium level and an abnormal heart rhythm called a long QT interval.
Alex was seen by a cardiologist and by a consultant recommended a cardiac MRI. Alex thought one had been done since he was put through the procedure, but we later learned that the test had been aborted because the technicians at the hospital were not trained on new software. On the basis of this “inconclusive” MRI, Alex gave consent for a cardiac catheterization and an electrophysiology test, both invasive procedures. He spent four days in the hospital and a fifth day as an outpatient at a second hospital undergoing these procedures. He was never told that the cardiac MRI was not completed.
Alex’s heart catheterization and electrophysiology test showed no structural abnormalities. He did, however, meet the criteria for a diagnosis of long QT syndrome, a dangerous condition that can lead to sudden death. Inexplicably, this diagnosis was not made. One possible cause of long QT syndrome is low potassium, which can be brought on by strenuous exertion in a hot climate. The protocol in such cases is to replenish low potassium. Although we were told in the hospital that this would be done, it never was.
The doctor at the second hospital told Alex not to run and wrote this restriction in the medical record. However, the medical record also shows that Alex was given a second milligram of Versed, a drug known to cause loss of memory, just before being warned not to run. The total dose of Versed in Alex’s case was quite high for a 155-pound man. The only written instruction given to Alex when he was discharged a few hours later was not to drive for 24 hours. Alex was a good patient. He followed instructions and did not drive, but he apparently had no memory of the warning not to run.
Five days later Alex was seen by a family practice physician the cardiologists had recommended. This young doctor, still in her residency, lacked basic knowledge of cardiology. She did not know that Alex was supposed to be referred for genetic testing and gave him a clean bill of health.
Two and a half weeks later Alex was again running alone on the jogging trail. About a mile into his last run he collapsed and was found unresponsive by a passer-by. He died after three days in a coma. Pathology showed heart injury consistent with severe potassium depletion.
At the emergency room, staff first thought the 69 year-old’s injuries were minor, but he died from internal bleeding about five hours later.
He was buried with full honors at Arlington National Cemetery. Following the death of her husband, Nancy co-founded the Community Emergency Healthcare Initiative, designed to measurably affect preventable injury and death now occurring in emergency departments.
Lewis Blackman was one of those children who just shines. For all his short life, he seemed to float effortlessly to the top no matter what he tried to do. He was a soccer player, a saxophone player, a writer, an actor in community theater, one of the top students in our state of South Carolina. We, his parents, thought he was the most brilliant boy in the world. We thought he would grow up to set the world on fire.
Two months after Lewis’s fifteenth birthday, we took him to a large teaching hospital for a minimally invasive operation to correct a defect of the chest wall, pectus excavatum. The surgery, as far as we know, went uneventfully. Afterward, Lewis was put on heavy doses of opioid pain medications, delivered through an epidural. He was also prescribed a full adult course of the IV painkiller Toradol, a regimen not now recommended for young teens. Even so, his pain was difficult to control. His opioid dose was continually increased. The Toradol, which had no discernable effect, was faithfully injected every six hours.
With so many painkillers, Lewis’s breathing was affected. He was monitored by pulse oximeter, and his oxygen saturation levels were never what they should have been. Because he had a history of asthma, the hospital staff did not seem to take this seriously. The day after surgery they moved the setting for the alarm from 90% saturation down to 85%, a very low level. They were concerned that the alarm would keep Lewis awake.
On Sunday morning, the third day after surgery, Lewis was suddenly stricken with an excruciating pain in the area of his stomach. This was very different form his surgical pain and much more sever: 5 on a scale of 1 to 5. Initially concerned, the nurses eventually decided he had an ileus, severe constipation caused by the epidural narcotics. That assessment stuck like a burr as Lewis’s condition spiraled downhill. His belly grew distended and bowel sounds ceased. He became paler and paler and his temperature dropped. His heart rate skyrocketed. He ceased to urinate. Because it was a Sunday, the only doctor we saw was an intern, five months out of osteopathic school. When we requested an attending physician, another resident came (and neglected to inform us of his status). All confirmed the diagnosis of constipation.
That night, Lewis’s oxygen saturation dropped so low that even the 85% pulse oximeter setting was too high to prevent the alarm from going off. The nurse turned the pulse oximeter off, again in the hope that Lewis could get some sleep. But in his state there was no sleep. We spent the night trying to manage his agonizing pain, nausea, and growing weakness. When the vital signs technician came the next morning, she could not find a blood pressure. In response, the intern and nurses spent 2 ¼ hours scouring the hospital , looking for a blood pressure machine or cuff that would register a reading. In all, they took his blood pressure 12 times with seven different instruments. The crisis was declared over when a second-year resident arrived from the operating room and, in a fit of wishful thinking, announced she had found a normal blood pressure. Just over an hour later, Lewis went into cardiac arrest and died. No attending physician had ever been called.
An autopsy the next morning showed a perforated duodenal ulcer, a well-known risk of the medication Toradol. From a known deadly side effect of a drug he was taking, Lewis had developed peritonitis and lost nearly three-fourths of his blood over the course of 30 hours, while his young caregiver assured us that nothing was seriously wrong.
What happened to Lewis was a result of a system that had no care for its patients. Residents and young nurses were left alone to perform jobs for which they were inadequately trained, with no ability to recognize a declining patient and no one to turn to when questions arose. Our family was also left completely isolated without a way to call for help. Trends in vital signs were not noted or even charted. The one objective monitor, the pulse oximeter, was first modified and then silenced. No one was there to speak for the patient.
On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.
Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen preventable hospital acquired conditions later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.
We knew that patients should have someone with them during a hospital stay, so my siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out” After all, we were all college educated and seemed to navigate life pretty well.
Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.
One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged traction.
A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.
Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.
In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.
Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, bedside with the body of her husband of 51 years, just to end their last journey together on a gracious note.
The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back to Florida.
By society’s standards, he wasn’t very significant. He wasn’t famous; he wasn’t a political figure; he wasn’t a scholar. In fact, he never graduated from college. He didn’t have a lot of material possessions. He worked as a cook and server in the restaurant industry. In other words, this young man was just another ordinary person. What he had that made him an amazing human being was a devotion to his two beautiful daughters whom adored him very much, a love for life and all the adventures it brought, and parents and family who loved and respected him as he did them. To his friends, he was a good-natured man you could count on, not only for help if it was within his power to do so, but also for a smile, a hug, and an attentive ear when they needed to vent or discuss whatever. On April 9th, the first tragedy happened: this young man needlessly lost his life. This young man died while in the care of highly trained critical care personnel at a Level III Trauma Center. Eighteen days after his devastating accident, his heart and lungs stopped working. At 27, there was nothing wrong with either organ. So why did this happen? Although the case for negligence seemed apparent to three different teams of lawyers, in the final analysis, we were told a little know healthcare law made it not “economically feasible” to pursue litigation. To me, that meant the lawyers found it wasn’t worth financially pursuing justice for this young man. This very significant 27-year-old man was my son, Christopher John Salazar.