My father-in-law, Larry, recently died at 82 years old. He had suffered from COPD and was vulnerable to pneumonia. He didn’t have COVID, but my wife, Eleni, aptly says that he died because of COVID. Quarantined at home, he stopped going out – visiting his favorite restaurants, grocery shopping, coming to our house for dinner. The inertia caused him to develop pneumonia.
We are hearing more and more about the toll COVID-19 is taking on our mental and physical health. As the CEO of a home-based medical company that specializes in caring for people with serious advanced illness, I can tell you that when someone is dealing with serious illness, a seemingly minor source of stress – when compounded with other issues – can lead to a rapid deterioration in their health.
Only a week after Larry passed, my mother, Judy, was admitted to the hospital for a condition that had been smoldering for 10 months, resulting in two major surgeries and a month in the hospital. With the incessant pain of infection and surgery, she grew delirious and agitated. My kind-hearted mother’s personality began to change. She went from showing genuine interest in her doctors’ and nurses’ families to making uncharacteristic demands and complaints. This was compounded by her sense of isolation and loneliness; only one visitor was allowed per day for a maximum of one hour. On some days, my dad would sit outside the hospital in his truck just to be close by.
When I asked my mother why she didn’t tell us what was going on, she answered, “I didn’t want to bother you or your sister. I am your mother and I am supposed to take care of you, not the other way around.” This sentiment is something we hear often from patients and caregivers. As a caregiver to my dad, Vin, who suffers from a chronic condition of his own, she was focused on him, not on herself. She never told any of us about her pain and discomfort until it was an emergency.
As our family’s recent experiences illuminate, social determinants of disease and suffering are the invisible agents of decline. The dictionary defines illness as “a disease or period of sickness affecting the body or mind.” What it doesn’t describe are the discreet and destructive social forces that turn small issues (relatively speaking) into big issues. Larry didn’t die from COPD or pneumonia. He died from isolation and an inability to move and be active. My mother suffered from a colorectal disease. But in reality, she was worn down by the unrealistic weight of so many caregiving responsibilities upon her shoulders.
Social isolation, loneliness and caregiver burdens are common drivers of serious illness and suffering, particularly among seniors. Social isolation is associated with an approximately 50 percent increased risk of developing dementia. Loneliness among heart failure patients has been shown to increase risk of death by nearly four times. As the National Academy of Sciences’ report on social isolation and loneliness states: “Human beings are social by nature, and high-quality social relationships are vital for health and well-being.”
Common sense tells us why this is so. As humans, we need a reason to live – a purpose. Meaningful social networks – family, friends, neighbors – protect us when we are vulnerable. When a person’s social network is healthy and active, family and friends are more likely to be present, to observe an altered mental status, and step in when crisis looms.
I am often asked to describe how Prospero impacts patient outcomes. I could respond by describing our team-based approach, individualized care plans and 24/7 availability to patients. In truth, the answer is much simpler: we provide empathy, compassion and care to people who are suffering with serious illness. Our patients and families require many supports – both medical and non-medical. Above all else, however, they need to be heard and listened to, often because they have nobody else with whom to share their burdens. And, they need to know we are simply there – whenever, wherever they need us – so they are never alone.
In the end, my father-in-law passed peacefully after a short hospitalization. I was fortunate to have been with him, holding his hand as he passed. I whispered to him that his daughter and granddaughters would be taken care of and that he could feel free to rest in eternity. He raised his eyebrows as if to acknowledge the assurance and settled into a deep, peaceful sleep.
Doug Wenners is the founder and CEO of Prospero Health, a home health company that provides compassionate home-based care for patients facing serious illness and their caregivers.