Stayc Simpson’s blood pressure readings are all over the place. Her heart rate is fluctuating wildly. After struggling with heart failure and coronary artery disease for 15 years, undergoing a double bypass, and living with an implanted pacemaker and defibrillator, she knows her numbers aren’t good. She’s really worried. But fears about infection with the novel coronavirus, and a terrifying recent experience in an emergency room, have her steadfastly refusing to return to the hospital.
“At what point do I think it’s OK to go to the ER?” asked the Miami resident. “I just don’t know. If there were no Covid, there’s no question I’d go.”
Simpson is not alone. A survey of nine major hospitals earlier this month showed the number of severe heart attacks being treated in U.S hospitals had dropped by nearly 40% since the novel coronavirus took hold in March, leaving cardiologists worried about a second wave of deaths caused indirectly by Covid-19: patients so afraid to enter hospitals that they are dying at home or waiting so long to seek care that they’re going to suffer massive damage to their hearts or brains. Some call it “a virus of fear.”
“The whole community is discussing this, asking where are all of our patients?” said Martha Gulati, chief of cardiology at the University of Arizona. “There’s nothing we’ve done overnight that has cured heart disease.”
The same is true for appendicitis and stroke. Clinicians say patients with these life-threatening conditions have also stopped seeking treatment in large numbers. “My worry is some of these people are dying at home because they’re too scared to go to the hospital,” Gulati said.
Others are coming in so late, she added, that some are presenting with massively damaged hearts, including heart muscles that have ruptured. “That was something I’d only seen before in textbooks, to study for exam questions,” she said. “Now we’re seeing those cases because people are putting off care.”
Mitchell S.V. Elkind is an attending neurologist at NewYork-Presbyterian, a hospital at the epicenter of the current pandemic that’s operating at surge capacity, with Covid-19 patients filling makeshift ICUs throughout the facility. Yet the stroke unit has been oddly quiet.
“Our stroke service is smaller by about half,” said Elkind, the incoming president of the American Heart Association and a professor of neurology and epidemiology at Columbia University. “People with stroke symptoms really need to know they should come in for treatment” immediately to limit brain damage and the risk of permanent paralysis, he said. “We have a limited time window and we know time is brain.”
The steep reduction in patients coming to hospitals is puzzling, even shocking, to many clinicians. Some have floated the idea that aspects of the pandemic shutdown, including decreases in air pollution, fewer heavy restaurant meals, and less exertion from work might be leading to a reduction in heart attack and stroke incidence. But other experts caution that even if those factors exist, they are outweighed by the stress, isolation, lack of regular exercise, and higher intake of salty, processed, shelf-stable foods resulting from stay-at-home orders.
”If anything, we would expect higher rates,” said Biykem Bozkurt, president of the Heart Failure Society of America and professor of medicine at Baylor College of Medicine. “We are not seeing the number of patients we should be seeing.”
Stress is definitely a factor for Simpson, 53, who had to close her business, a youth gymnastics studio, and is worried about being at high risk of complications if she does become infected with the new virus. She’s also stressed about not receiving her regular level of care. “I can’t go and get any of the normal procedures because going in puts me at risk,” said Simpson.
The main reason for the dropoff in patients, Bozkurt thinks, is that fear. “I think patients are scared to be exposed. Their perception is that hospitals are hotbeds for exposure and contamination,” she said. She and other physicians think many may be ignoring or dismissing their symptoms of chest pain, shortness of breath, or weakness.
The danger to patients from delaying treatment is so extreme that leaders of major heart organizations are responding with outreach programs and op-eds to encourage patients to come in for treatment. A cardiologist from Connecticut tweeted that his 50-year-old brother died of a heart attack, at home alone, on Monday. “Not Covid positive but Covid phobic,” he wrote.
Others are using Instagram posts to reach at-risk patients. “They need to recognize we provide safeguards and that not seeking care is much more dangerous,” Bozkurt said.
Cardiologists say they understand the fear among their patients with heart disease, patients who have been told since the start of the pandemic that they are at highest risk of complication and death if they do contract the new virus. They worry recent public health messaging may have been too effective. “We want them to stay at home and be socially distant. But we didn’t mean stay at home if you’re having symptoms of a heart attack or stroke.” said Gulati, who also serves as editor of the American College of Cardiology’s patient education portal “CardioSmart.” “We want to keep patients safe, but we also want to keep them alive.”
Patients may also be uncertain about coming in for care because many elective procedures were canceled or postponed early on as many hospitals prepared for a surge of coronavirus patients. That surge has not materialized in many places, and even in hard-hit cities like New York and New Orleans, treatment for emergency cases never stopped. “There is the erroneous perception that there are no resources or staff to provide urgent or emergency care for non-Covid patients or that everything is deferred,” Bozkurt said. “That is wrong. And the deferral of care with heart failure can be deadly.”
Many of the “missing” patients may indeed be dead. EMTs in New York City reported a quadrupling of house calls for cardiac symptoms between March 30 and April 5; in a majority of cases, the patients could not be revived. While some of the fatalities were likely caused by the novel coronavirus, others may have been caused by untreated cardiovascular disease or stroke. The medical examiner’s office is too overwhelmed to conduct autopsies that could clarify the cause of death.
Deaths of cardiac patients may be embedded in the Covid-19 mortality data, Bozkurt said. “I think globally, we are going to see adverse trends in … cardiovascular deaths due to our patients not seeking care because of Covid.”
On the night of March 18, Simpson woke up with frightening symptoms. “My heart was racing. 145. My blood pressure was off the charts,” she said. She was so scared, she asked her husband to call an ambulance. It was just days after Miami Mayor Francis Suarez had tested positive for Covid-19 and shut down the city. Simpson had a dry cough, a typical symptom of heart failure. Hospital staff immediately assumed she was infected with coronavirus.
“They took me straight to the Covid unit,” said Simpson. She was separated by only a curtain from two patients with active Covid-19 symptoms (one a man with liver failure, one a spring-breaker with head trauma) and was not seen by a doctor for five hours. “I was there for eight hours. For five of those hours I had no monitoring at all and I was critical. I thought I was going to die,” she said.
Simpson’s husband was not allowed to accompany her, so she was alone. “There was no call button, I had no way to let them know anything,” she said. “I could have dropped dead and no one would have known.”
She has been through a lot. She was diagnosed with Hodgkin’s lymphoma 23 years ago. (The heart disease is likely a result of the chemotherapy, she said.) Eight years ago, while training for a marathon, she was hit by a truck. Still, her experience in the Covid unit was worse. “It was anxiety like I have never felt. I don’t think I was ever that scared in my life, even after being hit by a truck and laying on the ground,” she said.
Simpson was eventually sent home; her blood work was off but she didn’t appear to be having a heart attack. She was given a test for coronavirus (it came back negative six days later) and told to quarantine for 14 days. Now that she’s learning more about how dangerous the virus is for those with compromised hearts, she’s still shaken by being placed so close to presumably infected patients.
Cardiologists say Simpson’s experience during the early days of the outbreak was unfortunate, but would be unlikely today because hospitals now have better procedures in place to segregate Covid-19 patients from the rest of the population. They say there are different units, different floors, and different staff for non-Covid-19 patients now and patients should not be afraid to come in for care they need.
Bev Pohlit, a 59-year-old heart attack survivor from Berks County, Pennsylvania, is one of those who’s afraid. In early March, after weeks of severe asthma symptoms, she reluctantly went to her local emergency room.
“My blood pressure was out of control. I was in tachycardia because I was terrified of being in there,” she said. The triage area was the most frightening because she shared a room with a man who was clearly sick, possibly due to coronavirus. She asked to sit in the hallway. Once admitted, Pohlit said, things improved. She quickly received massive doses of medicine through a nebulizer, felt stable, and was sent on her way. “They did get me in and out as soon as possible,” she said.
Pohlit works to spread awareness of heart disease among women with the American Heart Association and through a support group she founded called Heart Sisters, and she urges anyone with heart symptoms to call 911. “My message is you need to go, because if you don’t go, you could die,” she said, adding that her experience showed her that emergency rooms are working hard to prevent exposure to the coronavirus. “It’s not like you’re going to go to the ER and be put in a room surrounded by Covid patients,” she said.
Physicians agree. “We’re going to do everything to protect you while you’re in the hospital. That’s our job,” Gulati said. She added that heart procedures can be done much faster than usual because cath labs are empty due to the lack of elective cases. And heart attack patients who are treated sooner, she noted, usually have less complicated cases and shorter hospital stays.
Bozkurt is worried about isolation for her older cardiac patients who may no longer be receiving support from home health care workers or family members. Some of these may be patients taking nearly a dozen different medications who may be overwhelmed or feeling that they don’t want to burden others.
“The complexity of cardiovascular care can become too difficult for people. Learned helplessness sets in, depression sets in, and they may give up,” she said.
For those patients afraid to call 911 or go to a hospital or medical office, physicians say it is more critical than ever to stay in touch with the care team, even if it is only by phone. “Please call and ask for what you need,” Bozkurt said. “We clinicians are here and we want to help our patients.”
Simpson agrees. She’s in close touch with her care team, doing telehealth visits twice a week and monitoring her vitals closely with the heart rate monitor, blood pressure cuff, and pulse oximeter she always has nearby. She’s determined to survive. “First cancer tried to get me, then the truck,” she said. “I’ve decided this virus is not going to take me out.”