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.