COVID-19 and the Family Engagement Gap

Photo credit: Depositphotos

By Lisa Romano RN, MSN, chief nursing officer, CipherHealth

I’m not exaggerating when I say that COVID-19 left me completely incapacitated. 

After spending most of 2020 focused on COVID-19 – avoiding it, preparing for it, developing solutions for it – there I was, confined to my bedroom, with a 103-degree fever, racked with a cough, shortness of breath, and a host of other debilitating symptoms. I was unable to sit up by myself; unable to make it to the bathroom by myself; unable to think straight. 

Still, my first thought was to avoid the hospital. I was convinced – logically or not – that if I went to the hospital, I was going to be intubated, end up on a ventilator, and die, away from my family and by myself. My second thought, though, was that I needed to protect my family. I live with my husband, my 81-year-old mother, and my two grown children. I knew that I wouldn’t be able to live with myself if I was to pass it along to any of them. Over the course of my illness, however, they’d also prove to be my lifeline. 

Countless Americans are finding themselves at the same crossroads. As the US continues to break daily case records, and with the new, more contagious variant of the virus quickly spreading, hospitals are at – even exceeding – capacity. More and more COVID-19 patients are having to make hard – even seemingly impossible – decisions about how and where they fight the virus, whether it be at home or isolated in a hospital. 

Hospitals, in turn, are creating more stringent admission requirements, meaning that patients who previously would have been admitted are left to fight the virus at home. Patients’ family members, then, are becoming de facto caretakers. 

I was extremely lucky. I made it through COVID-19 without infecting anyone in my family, but I leaned hard on them for support. I had the tools, experience, environment, and critically, the support, to recover under the best conditions possible. 

I’ve been a nurse for 32 years. I have no problem understanding medical instructions and advice from my doctors, although I was forced to keep a daily journal to keep my symptoms, vital signs, and treatment plan straight amid persistent brain fog brought on by the virus. I had a thermometer, pulse oximeter, and blood pressure cuff to monitor my vital signs. In many ways, that’s all I could do, though. I was dependent on my family, clad in homemade PPE, to bring me food, help prop me up for a telehealth visit, change my linens on a daily basis, run out for medicine, and undertake countless other tasks to help me.

Throughout the entire experience, however, my family only had passing contact with my health providers. They listened in on a telehealth visit every now and then, but there weren’t any official channels of communication. We’ve heard countless stories throughout this pandemic of families fighting tooth and nail to talk to their family members in the hospital, or even get periodic updates on patient status from doctors and nurses. If I were incapacitated or brought to the hospital, my family would have been largely left in the dark about my condition. 

I write about my own environmental experience – one of privilege – largely to provide some contrast against the conditions under which most Americans are fighting this virus. Poor and diverse communities have been hit especially hard, and patients without proper space to isolate, or with partners and family members who can’t take time off work to provide care, or those with childcare responsibilities are put at an extreme disadvantage. Access to food, prescription medications, and over-the-counter medicine are also all factors that significantly affect the at-home fight against COVID-19. 

Hospitals, then, must take up the work of ensuring that patients who either choose to or are forced to recover at home can do so in a safe, supportive environment, and family members – the new de facto caregivers – are informed and empowered through open lines of communication. The approach here is two-fold: 

Rounding focused on post-discharge environment and factors

It has never been more important for hospitals to address social determinants of health. As soon as a patient tests positive for COVID-19, or at the very least after their first in-person or virtual interaction, hospitals should conduct automated outreach to ensure each patient is in an environment where at-home recovery is possible. Questions to ask here include:

• Do you have a space in your home to isolate?
• Do you have adequate ventilation? 
• Do you live with family members who are at high risk for COVID-19 complications?
• Do you have access to transportation to get to appointments or the hospital?
• Do you have access to, and do you have the financial means to afford, food and medicine?
• Do you have access to the technology needed to meet with your doctor virtually?

Family involvement

When a COVID-19 patient is recovering at home, his or her family members become more than just passive participants in care. Family members not only assume caretaking responsibilities, they also assume a great risk of contracting the virus. Hospitals need to fundamentally alter their approach to patient communications, and allow family members or loved ones – with the permission of the patient – to receive the same updates the patient is getting. As family members are taking on new caregiving responsibilities, the flow of information needs to be bi-directional – family members must be able to voice questions or concerns and act as an advocate in ways that aren’t possible through many of the telehealth avenues we’ve seen arise over the course of the pandemic. 

Ultimately, the gaps that have bubbled to the surface over the course of the pandemic – in addressing social determinants of health and in family engagement, have been around far longer than COVID-19. The drivers underpinning them will remain long after the pandemic has faded. In fact, the damage wrought by the pandemic in at-risk communities is likely to worsen the negative impacts of social determinants of health in the years to come. Right now, though, hospitals have a unique chance to solve both an acute need relating to the pandemic, and a longstanding, deep-rooted one. We shouldn’t shy away from the opportunity.