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:
Executive Summary Checklist
Leadership checklist guide to determine whether current evidence-based guidelines are being followed in your organization
Performance improvement plan to follow if improvements are necessary
Clinical workflow for preoccupation with workflow for areas of improvement
How to educate patients and family members about the significance of their role throughout the continuum
Each APSS is developed by a multidisciplinary workgroup comprised of patient safety experts, healthcare technology professionals, hospital leaders, and patient advocates. The Foundation is proud to connect as many stakeholders as possible to focus on how these challenges can best be addressed.
We believe that progress cannot be achieved by sitting on the sidelines; we must take ACTION together. Like-minded individuals are the driving force that makes our mission to reach ZERO preventable deaths not just conceivable, but achievable.
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.”
My dad, Glenn, spent a lifetime being viewed as a leader, counselor and outgoing friend to many. From his training and work in ministry to being named head of safety for one of the largest steelworkers’ unions in the country, his life impacted those around him in profound ways. At different points, Glenn was an avid golfer, competitive bike-rider (he owned an awesome Lemond custom bicycle), a hiker, a member of the Olympic alternate curling team, and writer of music. He was known for his kind nature, intense ability to listen, and for his remarkable command of the guitar.
Despite a life that looks idyllic on the surface, Glenn was suffering. Diagnosed with clinical depression at the age of 30, he spent 30 years on medications that essentially served as Band-Aids. Without medication, Glenn would crumble under the weight of nearly paralyzing depression. With the medication – his mood and emotions could become “watered down” to the point where we barely recognized the person we knew.
In 2013, it became apparent that his current long-term medication regimen was not working any more. He approached his primary care physician for help in “adjusting” his medications. During that same period, his 4-year-old granddaughter – was diagnosed with a brain tumor. We could see his anxiety mounting. He could see it too – and wanted to do something about it. Multiple medications were now being prescribed from several different providers. Any standards regarding cross-prescribing of different anti-psychotic and anti-anxiety medications were being either overlooked or lost to EMRs between different clinics and hospitals.
I know my dad felt like he was letting everybody down and things were never going to get better. He couldn’t see the way out. Things were bad enough for my dad to admit himself to the hospital two times in the spring of 2013. He had taken a medical leave of absence from his job. All the while, even his closest friends and colleagues were unaware of his condition. On Monday, June 28, my mom and my dad’s sister drove him to the hospital emergency department. He was able to articulate that his thoughts had become suicidal – and that he desperately wanted and needed help.
After 3 hours in the ER, he was discharged home. The attending physician had let the family know that no in-patient psychiatric beds were available to admit him. He walked out the door with a recommendation to start “taking Vitamin D” and to start doing volunteer work.
Less than 36 hours later, my father was found dead at an entry point to park where he and my mother and friends had spent countless hours playing Frisbee golf together just one summer earlier.
It would be days later before the family knew that my dad had quietly gone to his sister’s house to retrieve a shotgun that had been in storage at her home for years.
What’s clear about my father’s tragic death is that depression played only a small part in it. Multiple systems failures converged to seal his fate. Declining access to in-patient psychiatric beds has reached epic proportions nationwide, but particularly in the nation’s rural and community hospitals. By one count, the nation needs an additional 123,300 psychiatric hospital beds. The loss of those beds has left “the sickest of the sick” without treatment. A 2016 report from the nonprofit Treatment Advocacy Center reports that the nation’s psychiatric bed shortage has deteriorated to “beyond disastrous.”
Despite that grim reality, if the ER physicians that fateful night had simply checked their system, they could have referred by father to be admitted at one of two other hospitals, about 60 minutes away. We read his EMR notes from that night – and the months leading up to his ER visit. It was clear even to the layperson that this wasn’t a one-time bout of anxiety. The documentation was there. The previous visits, the litany and timeline of medications, many of which had notably dangerous drug interactions. The potential for self-harm.
The lesson we take away from my dad’s death isn’t just one of better diagnosis and treatment of mental health conditions. It’s about putting the human experience in front of the systems. Connecting all the health IT dots would have helped. But that alone would not have saved my dad. Given that 10 million Americans with mental illness are languishing without access to care, it should come as no surprise that 40,000 of them die prematurely from suicide each year. It will take some concerted efforts between researchers, hospital administrators, clinicians, technologists and health payers to address that gaps and end the epidemic preventable deaths tied to mental health diseases and disorders.
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-InducedSuicide 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!
Dan was the son of Mary Weiss. He was a gifted student and as a single mom, she was proud of his academic accomplishments. After graduating in 2000 with a degree in English, Dan moved to Los Angeles with hopes of becoming a screenwriter.
Mary visited her son in the summer of 2003. He had changed, and his mother was concerned. His behavior was bizarre, including claims of “communications” from “people who are not 100% human.”
Mary persuaded Dan to come home to the Midwest. His behavior became increasingly delusional. When he told his mother he would kill her if called upon to do so, she phoned the police.
Dan was taken to a local hospital. When no psychiatric beds were available, he was transferred to a larger teaching hospital. There he was put on the antipsychotic drug Risperdal and involuntarily committed for 14 days. His psychiatrist initially recommended that Dan be committed to a state mental institution. Later, he changed that recommendation to a proposal to enroll Dan in an industry-sponsored clinical trial for which the psychiatry department was aggressively recruiting enrollees.
Without Mary’s knowledge, Dan signed a consent form to participate in the study in return for not being committed to the state hospital. Suicidal patients were prohibited from enrollment in the study; since Dan had never threatened to harm himself, only others, he was a viable candidate for enrollment.
Dan’s mother was alarmed. She did not believe Dan was competent to give consent and saw his behavior deteriorating dangerously under the new regimen. Her persistent letters and phone calls begging for her son to be taken out of this program were disregarded. In her final communication, she left a voice message with the study coordinator asking, “Do we have to wait until he kills himself or someone else before anyone does anything?” Ten days later Dan stabbed himself to death with a box cutter, ripping open his abdomen and nearly decapitating himself.
Published results of the study showed five suicide attempts, one alleged homicide, and two completed suicides among the 400 trial subjects. An FDA investigation absolved the program of any wrongdoing and Mary Weiss’s subsequent lawsuit against the university was dismissed on a technicality. The university sued Mary for $57,000 in legal fees, but withdrew the demand when she signed an agreement not to appeal the dismissal.
Seth was a 23-year-old young man who had lived his entire life in the Riverdale section of New York. Seth was a good student who attended a school for the gifted in the city. At age 16, he developed Crohn’s Disease, and while his condition showed some improvement, it never left him and he was often totally incapacitated. This changed his plans, and he attended college close to home.
Seth then developed panic disorder. During the last year of his life, Seth was prescribed Xanax to control the panic attacks. This medicine was working. He maintained an A average until his death.
In August of 1993, Seth suffered a seizure. Although his physician father gave the emergency room doctor extensive information regarding his son’s medical history, including the medication he was taking, none of this was found written on his chart. Seth was experiencing classic withdrawal symptoms from Xanax. What was called his “bizarre” behavior led to his being put in restraints. Because no notes were written regarding his Xanax use, he was not treated for withdrawal but instead was consistently restrained and given medications.
His blood pressure became elevated, and by day seven was a dangerous 160/110. An EKG showed his heart rate at 116 beats per minute. Seth was transferred to the psychiatric ward of the hospital, miles away. Seth died alone, naked in a bathroom, of emboli caused by a week of thrashing to get out of restraints and being given a medicine that was causing him to become more and more agitated.