The COVID ICU is abuzz with monitors beeping and doctors and nurses rushing from bed to bed to care for critically ill patients, most on ventilators. The machines – dialysis, vents, pumps – sound off their rhythmic repetitions; breaths are pushed in and pulled out, and meds are dripped. Only the patients themselves are silent. We know this, and we hear this, but we are not there. It’s thhe height of the COVID pandemic, and visitors are not welcome, so we are not at the bedside.
We are remote.
In December 2020, I was asked to help a family with a loved one in COVID ICU. They had heard about my past experiences helping families navigate medical care. I was referred to them because they felt lost and disconnected, and above all, they were terrified for their loved ones. This is what I call the “Better Call Sara” moment when it becomes clear to folks trying to manage a challenging health care situation, confounded by the hospital ecosystem, that they require assistance from someone who knows the ropes and can facilitate communication with the care team and make suggestions about getting their loved one safely and humanely through an inpatient episode.
I speak a language – medical jargon — that most people do not understand, so I often find myself in the role of a translator of terms and concepts. I have worked for over 20 years in hospitals, side by side with doctors, nurses, and therapists. As a nonclinical adjacent health care worker, I have a unique perspective on patient care, from conducting research, enrolling patients in clinical trials, and educating staff on evidence-based quality and safety. I’ve worked in the emergency department, the radiology suites, the operating room, the ICU, and the general med-surg wards. I’ve read hundreds of patient charts, collected and analyzed thousands of data points, and even centrifuged blood in the lab. To write grants and research proposals, I attended lectures, went on rounds with the clinical teams, and read medical journals. I’ve been behind the scenes and part of the hospital ecosystem.
In 2020 I was fortunate to work on a critical care project with an intensivist (critical care physician). This work was built on a foundation of my previous experience with critical care research before the pandemic. I learned what optimal care looked like and knew the touchstones for getting the best outcomes. In parallel, I was a devoted student of the best COVID-19 practices. Thus, I was positioned to guide this family and others like them in a very granular manner.
My involvement with this family began with a few emails after I requested some background information about the patient. Mrs. N is married and has one adult daughter. Mrs. N had been diagnosed with breast cancer the previous summer but was successfully treated. She was slightly overweight and had a history of hypertension.
Mrs. N. had undergone emergency surgery for an obstruction in the pancreas, resulting in a serious infection requiring admission to the ICU. After, she suffered a series of complications and had several transfers between the ICU, intermediate care, general med-surg wards, and finally, rehabilitation to receive respiratory and physical therapy. She was diagnosed with pneumonia during the rehab stay and became hypoxic (low oxygen). She required mechanical ventilation and was transferred back to the ICU, where she tested positive for COVID and was found to have a pulmonary embolism (blood clot in the lungs); vascular issues are a common complication of COVID.
COVID restrictions kept her family from her bedside; they had no contact with her or staff except for an occasional request to authorize a procedure. They were cut off, getting scant updates about Mrs. N’s condition.
My first suggestion to the family was to initiate phone calls with the ICU to connect with the intensivist and the bedside nurse. Due to the crush of the pandemic, staff was extraordinarily busy. Many are out sick with COVID and overwhelmed. Unimaginably high patient ratios threaten the quality and safety of care in the hospital, nowhere more so than in the ICU, where patients require constant vigilance. I asked to be added as part of the team with permission to speak with the clinical staff.
Mrs. N’s family and I entered the ICU, albeit telephonically.
We instituted nightly phone conferences with the intensivist or the bedside nurse, careful to avoid the hectic time around shift changes when nursing staff handed off their patients and “gave report.” We understood that if we were put on hold for 10 minutes, the staff was dealing with emergencies, procedures, and death.
I explained to the family that we were balancing advocacy and becoming annoying. We got creative; we came to rely upon patient service representatives and social workers to facilitate communication.
For the following weeks, we phoned the ICU every evening; we spoke with nurses, nurse practitioners, and occasionally doctors. We developed a system where I would lead with questions, and the daughter would scribe, the husband listening. In this manner, we created detailed records as I integrated the family into the care process. We gathered clinical and functional data on Mrs. N.: her many medications, procedures, results of her serial imaging tests, and ventilatory settings. We recorded and tracked her sedative doses, oxygen requirements, and urinary output. Together, we monitored her progress and setbacks. We learned her specialists’ names and training credentials; she had consultations with gastroenterologists, nephrologists, infectious disease physicians, interventional gastroenterologists, physical therapists, and speech and swallowing therapists, and studied the ICU A2F bundle to learn how family engagement, mobility, and derailing delirium can enhance recovery and prevent post-intensive care syndrome and PTSD.
This proactive approach gave the family a sense of control, which is so important in the context of so much unpredictability. The daughter learned quickly. I sent her articles from medical journals to enhance her knowledge and help her to become an advocate for her mom. Soon the daughter absorbed that responsibility taking the lead on advocacy, which was always my objective when working with patients and families. We requested for the daughter to “meet” with Mrs. N. via video, an endeavor filled with logistic obstacles but ultimately successful, if not haunting and painful for the family.
COVID infection often progresses to affect many organ systems, each one requiring a specialist and sometimes procedures to alleviate the problems. One complication after another ensued, including one requiring Mrs. N’s transfer to another hospital with the specialized care she needed, adding to the family’s anxiety and stress since we had cultivated relationships in the first ICU. We had to retrench to get acquainted with an entirely different set of clinicians and front desk staff. Fortunately, we soon met our “angel nurses,” who were compassionate and kept us well-informed, despite how busy they were. Mrs. N’s clinical trajectory was filled with ups and downs, and there were many bad days, including delirium and hallucinations. She recovered in fits and starts.
Mrs. N. began to regain lung function, required lower ventilatory support and was given short but meaningful breaks from the heavy sedation and paralysis necessary to keep patients comfortable during mechanical ventilation. Mrs. N began to have spontaneous breathing trials (SBTs) during her “sedation vacations” to reacclimate the body’s breathing apparatus to function without the help of the machine. The daughter would return from these meetings tearful and traumatized. Mom was gasping for breath and in a panic. The nurse often left the room with the video feed still on, which was terrifying for the daughter.
The weeks went by. Slowly, Mrs. N improved with an enormous amount of intensive therapies, family support, and self-motivation. She came off the ventilator, tested negative for COVID, and began to move her limbs and speak above a whisper. This particular story has a happy ending. Mrs. N was well enough to return home after months in the hospital and rehabilitation facility. The family has been reunited.
In her book The Truths We Hold, Vice President Kamala Harris wrote about her experience and observations while her mother was hospitalized: “Emotions are running high. People are placed into a new environment where a specialized language is spoken…they may have to make decisions while they are frightened, in pain, or heavily medicated.”
We urge patients to become informed advocates. Yet there is this great asymmetry of information, an imbalance that makes it almost impossible for the average person without a medical background to participate in their care. In the scorched earth pandemic-damaged health care environment with overcrowded facilities and staff attrition, having a helping hand to support, guide, and empower folks through a medical encounter can be the difference between fear and security, safety, and medical calamity. In many sectors of health care, especially in the acute care setting, trained patient advocates who facilitate communication may help people have a sense of control over the clinical narrative.
Sara L. Merwin is the co-author of .