Too afraid to go to the hospital: How health workers have dealt with non-COVID patients avoiding care 

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At first, it was the silence that was most jarring.

When the pandemic arrived in Michigan last March, paramedics and other emergency medical technicians braced themselves for an onslaught of calls to bring individuals battling COVID-19 to the hospital. And while there was certainly a flood of COVID-19 patients to some hospitals, mostly in metro Detroit, calls to 911 dropped dramatically across Michigan as out-of-hospital deaths soared.

Michiganders, including those facing serious illnesses, were avoiding the medical system. They were worried about contracting COVID-19 — in the wake of watching computer and television screens filled with images of New York hospitals hemorrhaging with pandemic patients, they didn’t want to burden their own health care system. And, so, when their chests started hurting, they didn’t call 911. When they felt numbness and had trouble seeing, they sometimes waited for days before going to the emergency department. In total, 911 calls dropped from between 30% and 50% across the state at the beginning of the pandemic, said Jack Fisher, the executive director of Medic 1 Ambulance in Southwest Michigan and the president of the Michigan Association of Ambulance Services board of directors.

“People were too afraid to overload the system; people were afraid if you went to the hospital, you’d get COVID,” Fisher said. “When they had symptoms of heart attacks and other things, they thought it would go away. We were seeing more cardiac arrests because of people staying home and not dialing 911 because they were having shortness of breath or chest pain.”

As the country grapples with a pandemic that has killed about 420,000 people nationwide and more than 14,300 in Michigan, there has been an understandable focus on COVID-19 patients. But the pandemic has also wreaked havoc on the entire health care landscape. In this new world dominated by sickness and quarantine, non-COVID-19 patients dealing with chronic and serious illnesses are navigating an environment in which they have felt deeply worried about pursuing treatment, even for something life-threatening, like a heart attack or stroke. 

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Doctors and nurses working with non-COVID-19 patients — who the Michigan Health and Hospital Association said continue to make up the bulk of Michigan hospitals’ emergency department visits — speak of people arriving at hospitals with serious conditions that likely could have been avoided had they sought medical help when they first started experiencing symptoms. Caused at least in part by a fear of seeking treatment during the pandemic, out-of-hospital deaths in Michigan jumped 62% from mid-March to mid-May, and out-of-hospital cardiac arrests increased by 43%, according to Michigan EMS agencies.

And overall deaths have risen. 

The total number of deaths, in both the country and Michigan, has increased since last year. Most of these deaths are from COVID-19, but not all (though officials cautioned some non-COVID-19 deaths may have been misattributed to other causes, especially in the earlier months of the pandemic when less was known about the disease). In Michigan, deaths from diabetes, high blood pressure and Alzheimer’s disease have occurred at higher rates than before the pandemic, according to data from the U.S. Centers for Disease Control and Prevention (CDC).

Now, as we’re in the 10th month of the pandemic, the health care landscape in Michigan has shifted from where it was last spring, in both promising and challenging ways.

People are, once again, calling 911 — not at the same levels they were before COVID-19, but the numbers are much closer to what they were before the pandemic, according to Michigan EMS agencies. Doctors, nurses and EMS workers — many of whom launched concerted efforts to convince the general public that it is safe to go to the hospital during the pandemic — are relieved to see people are not as fearful of medical facilities as they were in the spring.

“We really had a strong effort over the summer to let people know that calling 911 is safe, that ambulances are cleaned regularly; we’re using state-of-the-art disinfection, including UV lights,” said Jason MacDonald, vice president of operations at Mobile Medical Response, which covers 17 counties in mid- and central northern Michigan. “Our emergency departments are open and safe; we have safe ways to get you the care you need. I think because of the campaigns to let people know that, we saw a bit of a return to normalcy over the summer.”

Life, of course, is not entirely back to normal, and the impact of the pandemic on non-COVID-19 patients with serious and chronic illnesses is one that could be felt for years to come — and, for some, permanently. This impact has been a complex, and often devastating one, stretching from individuals suffering life-altering strokes and cardiac arrests to HIV patients committing suicide, individuals with cancer pleading with the public to wear masks and people being unable to access rehab services. 

“I want people to think about the impacts of this pandemic and what the uncontrolled spread [of COVID-19] and increasing hospitalizations means,” said Dr. Ryan Malosh, an infectious disease epidemiologist at the University of Michigan who studies respiratory viruses who was diagnosed with leukemia in November 2018. 

“Some of my appointments, for example, got pushed to virtual [because of the pandemic], and, because of that, I didn’t have the opportunity to get the shingles vaccine I was supposed to get on a recommended schedule,” Malosh said. “I ended up having shingles in August. While that was painful, annoying and frustrating, it also meant I had to go to the doctor a lot more. I had all these interactions with the health care system and had to put myself at risk by going into places where coronavirus is happening. …There can be a lot of negative consequences because of the way the pandemic is affecting routine health care delivery.”

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A return to hospitals

After it was clear that patients were, sometimes fatally, avoiding going to the hospital at the beginning of the pandemic, doctors, nurses, lawmakers, and the Michigan Association of Ambulance Services launched statewide efforts to educate the public about measures being taken to prevent COVID-19 spread in medical facilities, including hospitals. 

Following these efforts, and the return of the elective surgeries that had been delayed at the beginning of the pandemic, patients have begun returning to hospitals, according to doctors and EMS workers.

“The hospital is a very safe place to be; it’s probably more dangerous to go to the grocery store than it is to go into the hospital,” said Dr. Gary Roth, chief medical officer at the Michigan Health and Hospital Association, an organization representing all community hospitals in the state. “My wife works at a hospital as a registered nurse, and neither of us are worried about her working in a hospital because exposure is very low because we do the right thing in the hospital. We wear our masks; we are washing our hands; we are cognizant of how we are interacting with patients and colleagues. The risk of catching COVID is very low by going into a hospital.”

Dr. Gary Roth

“If someone is experiencing a medical emergency, they should seek care and not avoid it because of the risk of catching COVID,” Roth continued.

Research backs what Roth said about patients being unlikely to contract COVID-19 in the hospital. One study of thousands of patients at Brigham and Women’s Hospital in Boston, Mass., found that among 8,370 patients with non-COVID-19-related hospitalizations, 11, or .1%, tested positive for COVID-19 within 14 days of being discharged. Of those 11 people, the study’s authors said just one case was “deemed likely to be hospital acquired.” 

Another study of 710 patients at New York-Presbyterian/Columbia University Irving Medical Center in New York City found only three patients, or .42%, were determined to have likely contracted COVID-19 while in the hospital.

Nurse safety, however, is a different story. According to the CDC, nurses are particularly at risk of contracting COVID-19. The CDC reported that of the health care workers hospitalized for COVID-19 from March through May, more than a third were nurses or nursing assistants.

At the beginning of the pandemic, the idea that hospitals were safe for patients was a difficult one to drive home, especially for individuals with conditions that increase the risk of severe COVID-19 cases, such as cancer, chronic kidney disease, chronic obstructive pulmonary disease, heart conditions, obesity, pregnancy, sickle cell disease, and diabetes. The idea of interacting with an environment where there were COVID-19 patients made people fearful enough that they delayed going to the emergency department even when faced with serious symptoms, such as chest pain, which could precede a cardiac arrest, or sudden numbness, which could be an indication of a stroke.

From March through September 2020, there was a 15% reduction in patients admitted to Michigan hospitals for diabetes, a 17% drop in patients admitted for heart disease and stroke, a 23% decrease in patients admitted for cancer, and a 6% reduction in patients admitted for kidney disease according to the Michigan Health & Hospital Association.

“The patients are afraid to go into areas where they know there’s COVID,” said Dr. Peter Gulick, an infectious disease expert and a professor of medicine at Michigan State University’s College of Osteopathic Medicine. “They don’t want to go into offices and definitely not hospitals. They are putting off visits to physicians. There’s a worry there will be an increase in cancer occurrence because we’re not screening like we used to.”

Dr. Peter Gulick

Roth also noted that “patients have stayed home while they’ve been experiencing a medical emergency, whether it be a ruptured appendix or symptoms of a heart attack or stroke.”

“We have seen where patients have not gone after the care they otherwise would have,” Roth continued.

This, he explained, can dramatically increase the seriousness of a patient’s condition.

“If someone’s experiencing symptoms of a heart attack and they don’t get the care they should have early on, they most certainly could survive that event but now they may have damage done to the heart that cannot be reversed when it may have been reversed early on,” Roth said. “Now, a patient is being treated for heart failure, which becomes a long-term problem. Now there’s a different level of care for a longer amount of time.”

“Somebody may now be in the hospital longer; they may need care that’s more extensive, or it may also mean they now have a condition that goes on that otherwise could have been prevented,” Roth continued.

Whether it’s a heart attack, a stroke, or another medical emergency, “every minute counts,” said Fisher, of the Michigan Association of Ambulance Services. MacDonald, of Mobile Medical Response, also emphasized this idea and said “people were delaying treatment to the point where [EMS workers] found them in a much higher level of distress or not breathing and with no pulse.”

At Spectrum Health in Grand Rapids, Dr. Justin Singer, a neurosurgeon who works with stroke patients, saw “an increased number of strokes at the hospital that required emergency interventions” due to patients delaying treatment. 

“We were observing a number of patients coming into the hospital late after having symptoms for a number of days,” Singer said. 

Dr. Justin Singer

“Across the spectrum, patients were coming in quite late,” the neurosurgeon continued. “With oncology, [gastrointestinal] services, we were taking care of a lot of patients who were deferring care. Patients with heart attacks were coming in on the later side. They were coming in with more unusual problems because they were staying home for the early part of those episodes.”

For stroke patients, that delayed care can result in an entire upending of life as a patient knows it, Singer explained. For each minute a person’s brain is deprived of oxygen, which is what happens during a stroke, two million brain cells die. That death of brain cells can lead to long-term disability and even death. If a patient is able to get to the hospital as soon as they start having symptoms, they can receive care that provides them a much greater chance to function the way they did before their stroke; the longer they wait, the more unlikely that becomes.

“If someone’s delaying care by 48, 72 hours, they’re really putting themselves at risk for not being able to get help, and that’s a very disappointing thing for us,” Singer said.

‘I’m not leaving the house for a long time again’

By the time most Michiganders were remaining in their homes because of COVID-19 last March, Malosh, the U of M epidemiologist, knew intimately well what everyone else was going through. A little more than a year before the pandemic began, he had to grieve the life he once had, he was isolating long before the term ‘social distancing’ became ubiquitous, and he knew what it was to fight for your life on a ventilator.

After being diagnosed with a particularly aggressive leukemia in 2018, Malosh, who studies herd immunity and influenza vaccine effectiveness, among other topics, went on to spend months at the U of M hospital, undergo chemo that almost killed him, be on a ventilator for 24 hours, and have a bone marrow transplant in March 2019 that ended up being what Malosh described as a “resounding success.” 

After his transplant, he began living the way many of us have during the pandemic: because the most minor infection could become life threatening for Malosh, he avoided crowds and worked from home. He missed friends and extended family. He didn’t go out to restaurants. 

Ryan Malosh with his wife and children at the hospital.

Last winter, he began to feel better. By March, he was planning on returning to work. Then COVID-19 hit.

“I remember seeing reports from the World Health Organization in December and early January — a cluster of pneumonia with an unknown cause; it’s kind of like the red flag for epidemiologists when you see that, and it’s like, ‘Oh no, what’s coming,’” Malosh said. “Once March came around, and we realized it was here and there was community spread, that for me was the point when it was like, ‘I’m not leaving the house for a long time again.’”

For Malosh, and anyone with a compromised immune system, COVID-19 is deeply frightening. Cancer patients are at a much higher risk of having serious cases of COVID-19, which left Malosh, his wife and his three young children to, once again, face scenarios that could be life threatening for him. 

It was particularly worrisome when Malosh saw people refusing to wear masks — he knew what that could mean for him, and he wished he could tell every one of those denouncing masks: Please wear one. You’re saving my life by doing so.

“I think it’s probably worse mentally than anything else,” Malosh said of the pandemic. “There’s the anxiety about being in public. We grabbed takeout from a pizza place and decided to have a picnic with the kids, and all of a sudden we found ourselves in a crowd of people. That’s scary.”

The idea of the public remembering those who are immunocompromised — at all times, but especially during this pandemic — is something about which Malosh is incredibly passionate, so much so that he penned an opinion piece in the Detroit News about it. 

“Thank you, residents of Michigan,” Malosh wrote. “Because you’ve stayed home, my children aren’t fatherless. …Your efforts have protected me and many others like me. You see, when people write off the seriousness of the COVID-19 pandemic by saying, ‘It only kills the old and sick,’ they’re talking about me.’”

With the arrival of the COVID-19 vaccine, Malosh is hopeful that he and others who are immunocompromised, as well as everyone across Michigan, can see some kind of return to normalcy. As soon as he’s able, Malosh plans on getting the vaccine; based on the state’s requirements, he should be able to do so after health care workers and long-term care facility residents and staff because he’s in a high-risk category. 

‘There is an end to this pandemic’ 

“I hope that people decide to get the vaccine,” he said. “Hopefully we can get back to a more normal version of life, even if we won’t be back to truly normal for quite some time. Being able to have my 7-year-old daughter go back to school next fall is something I’m greatly looking forward to. We had to keep her home because we couldn’t risk her bringing anything back to me.”

And, in the meantime, he hopes everyone begins to understand: the lives of others are in your hands, quite literally, during this pandemic.

“We can protect people by social distancing and wearing masks to limit the spread as much as possible, even when it inconveniences us,” he said.

For HIV patients, COVID-19 takes a mental toll

As Malosh said, one of the worst pieces of the pandemic for many of those who are immunocompromised is the mental health aspect of it, the anxiety that accompanies being at a high risk for more serious cases of COVID-19. 

This is certainly true for the approximate 16,000 Michiganders living with HIV: Mental health is one of the biggest challenges facing them during the pandemic, said Gulick, a Michigan State University professor of medicine who works with HIV patients in Saginaw, Lansing and Harris in the Upper Peninsula. 

While not all HIV patients are at risk for developing serious cases of COVID-19, individuals with compromised immune systems are, and many of Gulick’s patients are deeply fearful of facing severe cases and being hospitalized. On top of that, Gulick’s patients are struggling with the extreme isolation in which they now live.

“This has always been a horrible problem for HIV patients; they’ve always been isolated; they’ve always been put in the corner,” Gulick said. “Nobody’s wanted to touch them, talk to them. It’s better now, but there’s still stigma. Part of the thing they’d love to do is they would come in [to see Gulick], and I’d touch them and hug them, and for some of them that meant a lot.”

During the pandemic, his patients have not wanted to access in-person appointments out of a fear of contracting COVID-19. This combined with the general isolation people are facing during the pandemic has left many of Gulick’s patients with little to no human contact. For those the doctor works with, this change has been devastating.

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“I’ve had four suicides, three young men and a young woman, all 30 years old or younger, during this pandemic, I think because of the severe isolation,” Gulick said. “It’s been really, really hard, especially for the HIV population. They look for someone caring for them and that personal touch, and we can’t do that anymore. We try to do the best we can. We have mental health counselors.”

In these dark times, Gulick did note there’s been a bright spot: the pandemic has provided his patients the opportunity to attend all of their appointments because they’re virtual. 

“Many of my HIV patients are poor and don’t have ways to get in to see me,” Gulick said. “They’d miss visits for those reasons; now, because they can call me, I’m seeing a 100% show rate. I’ve never had that; before, it was 50, 60, 70%.”

No cardiac rehab for months

Individuals with heart disease have traversed a difficult path during the pandemic, with cardiac arrests skyrocketing 43% in the first couple of months of COVID-19 and elective surgeries being delayed. 

Additionally, beginning in March, cardiac rehabilitation programs were shuttered across the state because of the pandemic, including one at Dickinson County Healthcare System in Iron Mountain, a city located near the Wisconsin border in the Upper Peninsula. 

Prior to its temporary closure on March 20, Dickinson’s cardiac rehab staff would work with patients who had an acute cardiac event, such as a heart attack or bypass surgery. Focusing on education and exercise, they provided information about heart healthy nutrition and stress management, monitored blood pressures and heart rhythms, and worked with patients on exercise, among other initiatives. It’s crucial work, said Shirley Dishaw Beck, a registered nurse who works at Dickinson County Healthcare System’s cardiac and pulmonary rehabilitation programs. Clinical research shows cardiac rehabilitation reduces mortality by more than 50% compared with patients who did not participate in rehab. 

All of which is to say: it was not good news for cardiac patients to no longer be able to access rehab services. The rehab staff were able to do some work with patients over the phone following the closure, but, for the most part, people who suffered heart attacks and other cardiac events during the early part of the pandemic were unable to immediately access those critical services usually so readily available.

Shirley Dishaw Beck

“There’s really good data to not just suggest but prove that patients who attend cardiac rehab have a lower morbidity and mortality rate,” Dishaw Beck said. “Cardiac rehab makes a difference in not only their survival but in disease management.”

For patients who suffered from heart attacks or other acute cardiac events while the rehab program was closed, they faced a variety of outcomes in terms of accessing rehab once the program reopened on June 8. Some who had their rehab “significantly delayed” went to the Dickinson program, while others never pursued rehab after the program reopened and others “chose not to come simply because of COVID,” Dishaw Beck said.

In addition to the pandemic forcing the rehab program’s closure, cardiac patients have also seen COVID-19 affect them in other ways, Dishaw Beck said. 

“Some have had to quarantine, and they’ve missed sessions and visits because of that,” she said. “We had one gentleman who went on a trip and contracted COVID. Thankfully, he hadn’t been here, but because he had COVID he had to miss visits.”

Fortunately, the nurse noted, the rehab program staff have not had to deal with much of an anti-mask sentiment in their establishment. One patient didn’t come when he learned he had to wear a mask, but everyone else “has been very respectful,” which is good news for patients at an increased risk of contracting serious COVID-19 cases.

“I hope everyone keeps getting out the news of how important it is to mask up,” Dishaw Beck said. “It’s upsetting to us in health care to see the fighting over it; the lack of respect for your fellow man is extremely disturbing.”