Forgotten Patients

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Blog post by Joe Babaian

Hi, I exist.     ~ Said by anyone overlooked, if they could only find their voice

During this ongoing pandemic, we’re all seeing the significant impacts on healthcare, including changing methods of delivery. As telehealth shows a vigorous ascendancy, in-person clinical care walks the tremulous line of reconsidering the value (or lack of) of waiting rooms, face-to-face patient interaction, paper-based intake, and more.

With the onset of rapid change, one thing sadly remains the same – access is not universal and one set of barriers are supplemented and replaced by a new range of obstacles facing patients. With the changes we have seen from the pandemic, segments of patient populations are facing:

  • Disruptions in primary coverage
  • Increased difficulty accessing public coverage options.
  • Evolution of the real impact from the Digital Divide (future collaborative #hcldr chat this year) on entire segments of the population.
  • Income disruptions.
  • Primary care reduced availability – face-to-face & difficult transition to telehealth for many based on internet access, education, comfort/trust, and fear.
  • Life disruption due to COVID19 infections and personal impacts on the patients themselves and or families that are recovering.

Often, what matters most in healthcare (life) is what is right in front of us! In addition to the new burden placed on the population due to COVID19, I’m also talking about the overlooked patients that have always been with us: the compliant elderly grandmother slipping deeper into dementia, the low-SES baby the doesn’t cry but fails to thrive, the weary cancer patient on chemo round three who just doesn’t want to be labeled a complainer. And more.

You know these archetypes, yet do you really see them?

In healthcare, we run toward the shiny, the new, the cure, and for reason – progress is meant to lift everyone as a society – but we can’t think of only ourselves, we have to look at the greater good. We have to ask ourselves, are we truly in the service of the greater good for all? Echoes of Hardin’s The Tragedy of the Commons should be ringing bells for you here. While commonly associated with the depletion of natural resources, we can stretch it to not being selfish – working in healthcare for society. A noble cause, everyone agrees!

In our feverish and passionate work towards putting out fires so that we can tackle emerging challenges and creating a new, transparent healthcare system, we can’t always slow down. Building a system that allows access, education, and care for all is what we must continue to do. But. And you knew this was coming. We can’t make a hash of our humanity by overlooking the archetypes I listed. These are real patients that we see every day – at the clinic, at home, on rounds, in reports. We just have to look.

In The Overlooked Danger of Delirium in Hospitals, Sandra Boodman shares:

Researchers estimate that about 40 percent of delirium cases are preventable.

“The biggest misconceptions are that delirium is inevitable and that it doesn’t matter,” said E. Wesley Ely, a professor of medicine at Vanderbilt University School of Medicine who founded its ICU Delirium and Cognitive Impairment Study Group.

Stunning? It should be. This is just one clear example of being overlooked or forgotten. It’s always easier to put on a label on things difficult to handle, and who can blame anyone? Clinicians pushed to the max with 10-minute patient interactions (if lucky), hospitals forced to become marketing engines just to survive, nurses doing duties beyond what they ever imagined, and a tertiary-care system that is rough, to say the least.

Let’s not focus on just one example of forgotten/overlooked patients. Let’s consider all of our pooled skills, experiences, resources, and abilities to focus on what we can do to chip away at this hidden feature of healthcare now during the pandemic more than ever.

This week on #hcldr, let’s think & talk about the forgotten patient and get your input.

Let’s consider where we are and where we need to be as well as the implications along with the #hcldr community of professionals, patients, clinicians, administrators, lurkers, counselors, social workers, designers, and advocates. Please join us on Tuesday, June 23, 2020, at 8:30pm Eastern as we discuss the following topics:

  • T1: How has the pandemic created a new group of overlooked/forgotten patients? What examples have you seen?
  • T2: Consider that modern healthcare is designed only as a net to cover some but not all people. How has the pandemic shown this to be a foundational flaw?
  • T3: Who maintains responsibility for patient/caregiver education, access, direction, and followup? How can these roles be shared?
  • T4: Thinking about your varied experiences, how can we make the biggest impact on reducing the numbers of forgotten patients (including mitigating the root causes)?

Resources

“Emotional harm from disrespect: the neglected preventable harm” Lauge Sokol-Hessner, Patricia Henry Folcarelli, Kenneth E F Sands, BMJ Journals, 2015. https://qualitysafety.bmj.com/content/24/9/550.full

Accessed June 3, 2020

“The Tragedy of the Commons” Garrett Hardin, Science, Dec 13, 1968. http://www.environnement.ens.fr/IMG/pdf/hardin_1968.pdf

Accessed June 11, 2020

“The Overlooked Danger of Delirium in Hospitals” Sandra Boodman, Atlantic, June 7, 2015. http://www.theatlantic.com/health/archive/2015/06/the-overlooked-danger-of-delirium-in-hospitals/394829/

Accessed June 9, 2020

Image Credit

Photo by Noah Silliman on Unsplash

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