Insight into the Public Health Economy: Perspectives from Seniors and Disability Populations (Part 1)
By Christopher Williams
Founding Director, Public Health Liberation
I recently took an opportunity to rewatch our inaugural national webinar from February 25, 2022, entitled, “As Designed": Encountering System Barriers in Health - A National Webinar and Conversation”. Dr. Jehan El-Bayoumi co-hosted with guests Linda Brown and Dr. Douglas Koch. Linda is a senior and public housing community leader in Washington, DC. She takes care of her adult daughter with cognitive and physical disabilities. Douglass is Associate Director of Teaching and Learning for the Medical Education Center of Excellence at PCOM's Philadelphia location. He takes care of his aging parents in a suburb outside of Philadelphia, Pennsylvania.
The first essay in this series discusses my reflections on Douglas Koch’s contributions to our first webinar. I discuss my three major takeaways: Supporting Humanistic Public Health, Aging is Collective Responsibility, and Structural Barriers.
Takeaway #1: Supporting Humanistic Public Health
Douglas began by providing us with a biographical sketch of his father’s life - military service, marriage and family, and career. He walked us through his father’s increasing health challenges due to limited mobility and diseases, including an inflammatory disease that caused bones to fuse. Although we promoted the webinar as a way of shedding light on elderly care, we benefited immensely from Douglas’ personal story as well. The weight of all of his work and family responsibilities and personal tragedies, including the loss of his brother, conveyed a deeply moving human face on health discourse. Douglas found himself wearing so many hats, as we discuss more fully below. His role as comforter to his mother, who was reeling from the loss of her adult son, her husband’s declining health, and her own health challenges, added to his plate.
These perspectives matter to health discourse for scholars, trainees, and policymakers alike. Optimizing health care and the Public Health Economy requires that we reject the singular focus on statistical models and data-gathering to define problems and solutions. We should seek to understand the “whole person,” including social history and real-time challenges. In medicine, they call this “humanistic medicine”. Humanism in public health tends to fall within anthropology rather than traditional public health - the difference in hard and soft sciences. Public health research is best practiced when our theories, policy proposals, and training reflect the social world and lived experiences of individuals like Douglas and his father. I recently emailed my public health school leadership encouraging them to modify the curriculum to this end, ”Social discourse is a viable and essential source of information for health equity discourse and research. Webinar conversations are an underutilized data source to gain insight and to affect the Public Health Economy.” Previously, I had encouraged them to introduce more community-based training. In my experience, public health training has many opportunities to establish humanistic public health.
Takeaway #2: Our Conceptualization of “Aging” Should be Broader
We have individualized the process of aging to our detriment. “Aging in place” is one such phrase that has diminished the vital community role. The CDC defined aging in place as “the ability to live in one's own home and community safely, independently, and comfortably, regardless of age, income, or ability level". [1] Its resource page seems to put the onus on seniors to plan ahead and find resources rather than contextualizing aging within its social milieu. Aging is a collective experience, which necessitates shared social responsibility. As people age, they will need more resources - including community, social, and healthcare support. Even for a relatively healthy senior, we cannot assume that healthy aging only entails safety, independence, and comfort. The US Surgeon General recently warned of the dangers of loneliness and social isolation. Social health is part of a whole host of other public health priorities - workforce shortages, lack of responsive public health infrastructure, expensive senior care, and technological barriers. It is important to reject the conceptualization that seniors can be expected to be “independent” of individuals and society. Aging is both individual and a shared experience.
Douglas’ story illustrated this reality. The impact of his aging, homebound parents, not to mention his brother’s passing, shifted his life entirely. He became the accountant. The scheduler. The technology expert. The therapist. The home repair and maintenance hotline. The central hub for ordering of supplies, services, and groceries. He called Ubers and filed taxes. Arranging home-based vaccination for his parents from a state away. He made health care decisions. At one point, he temporarily left his home and job to take care of his parents. “It’s a burden but it’s not a burden. I would not have it any other way,” said Douglas.
While it is certainly true that Douglas sees his role as part of strong family commitment and responsibility, it is important to view his challenges in light of the US health care system. Unsurprisingly, it’s broken. We often talk about health care costs and access, but there are other major needs, including adequate senior health care infrastructure. Doug and his father are some of the lucky ones because Douglas’ father was able to purchase long-term daily care insurance before the severe onset of his illness. Douglas is also uniquely talented, organized, and skilled. He can navigate the complexity of various systems whether hiring home health workers or managing the family’s finances. A larger problem in our healthcare system looms large.
“Many adults have no (long-term daily care) plan at all, or assume that Medicare, which currently kicks in at age 65, will cover their health costs. Medicare, however, doesn’t cover the long-term daily care — whether in the home or in a full-time nursing facility — that millions of aging Americans require. For that, you either need to pay out of pocket (the median yearly cost of in-home care with a home health aide in 2020 was $54,912, and the median cost for a private room in a nursing home was $105,850) or have less than $2,000 in assets so that you can qualify for Medicaid, which provides health care, including home health care, for more than 80 million low-income Americans. Even if you qualify, the waiting list for home care assistance for those with Medicaid tops 800,000 people and has an average wait time of more than three years.” [2]
Takeaway #3: Structural Barriers to Seniors
Douglas feels that this quote by W. Edward Deming best captures the structural barriers that he has encountered, “Every system is perfectly designed to get the results it gets.” The computer- and smartphone-centric shift in society has left millions of US seniors behind - low-income too. Even as technologies, such as ridesharing and food delivery apps, have made our lives more convenient, that is not uniform across the population. Douglas shared that his parents are not able to use a smartphone for apps like Uber, so he has to order for them. “If it wasn’t for me, I am not sure how this would have worked out,” explained Douglas.
“When you design something, it’s nice to have something in your back pocket for this person or that person - to ensure that you don’t miss people.” Douglas largely meant technology, but it can easily apply to public health. Whether designing intervention or policies, the quality of any public health product or intervention is only as good as the perspective-taking and social insight of the design team.
There was another “system” that was important to his story - employment leave policies that do not easily accommodate caretakers and family emergencies. Douglas chose unpaid leave from his workplace to take care of his parents for several months. Douglas was fortunate that he could return to work in a state away and have the support of his husband, but Douglas was still very lucky.
Dr. Jehan El-Bayoumi highlight another, “Here in DC, when kids from under-resourced, largely African American communities, were required to sit in the school parking lot in cold weather. We have been calling for free public Wi-Fi.” Indeed, many structures need major reform.
