Starbucks and End-Stage Renal Disease

I had my first meeting with my primary mentor – Dr. Bjorg Thorsteinsdottir!

I want to take a moment to extend a quick thank you to Ashley Parker, a previous Vann Fellow. Ashley introduced me to this fellowship and helped review my cover letter and résumé during the application process. To my professors Dr. Lauren Stutts and Dr. Lance Stell – I also appreciate you taking the time to write my letters of recommendation. Without your help and confidence, I would not be writing from Rochester today.

View from the Skyway

View from the Skyway

As I stood outside of Dr. Thorsteinsdottir’s office in anticipation, I couldn’t help but to think of all of her impressive credentials. A double major in physics and mathematics, she received her MD from the University of Iceland. She completed her residency in Categorical Internal Medicine at the Mayo Graduate School of Medicine. In her words, “life happened” while conversing with a colleague over dinner one night, and she then became a fellow of Clinical Ethics at Harvard Medical School.

I really hope “life happens” for me over a dinner conversation and I become a fellow of Harvard.

You can find a full profile of her education and research interests here.

Yet, her Mayo profile cannot describe her kindness and ability to articulate complex issues. Immediately upon entering into her office, she greeted me with a warm hello and then pulled me out of it, asking if I liked coffee. We walked down Plummer hallway, and she lead me to the Starbucks around the corner. We continued to talk about our interests outside of medicine and healthcare policy – talking about Denmark, Southern cities, and her daughter starting kindergarten this year. Among all of the medical and ethical challenges she has on a day-to-day basis, she describes her greatest challenge every day as organizing her three kids to get ready for school with “chaos.” Because her husband is from Denmark (where I am traveling in the fall), she recommended various cities and offered to put me in contact with another individual here with connections near Copenhagen. She’s also trilingual in English, Icelandic, and Danish, of course.

I’m from Nashville – I’ve met celebrities. I’ve met politicians from previous experiences or jobs. Yesterday was really my first time being “star-struck.”

Dr. Thorsteinsdottir is hoping to recruit my help on writing a systematic review of risk-prediction in acute kidney injury and end-stage renal disease. The following information comes from the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC).

End-stage renal disease (ESRD): total and permanent kidney failure. When the kidneys fail, the body retains fluid. Harmful wastes build up. A person with ESRD needs treatment to replace the work of the failed kidneys.

Acute kidney injury (AKI): sudden, temporary, and sometimes fatal loss of kidney function

Essentially, this means two things: 1) how can the United States healthcare system properly allocate resources for treating patients with ESRD? and 2) how can patients and families approach the issue in deciding whether or not to treat? This issue is particularly complex when considering implementation of dialysis treatment. Dialysis helps patients to retain function and can extend their lives. Immediately, this seems like it should be the go-to treatment option. However, we must make two considerations for treatment: 1) what is the cost to the families or larger healthcare system? and 2) what does the quality of life look like with dialysis treatment?

Understanding how to allocate resources and maintain communication between patients and physicians with ESRD is essential. Between 1980 and 2009, the prevalence rate for ESRD increased nearly 600% alone. ESRD is both prevalent and increasing within medical settings. Dialysis can prolong life, yet life expectancy, according to the Medical College of Wisconsin’s End of Life / Palliative Care Education Resource Center, “remains only a third to a sixth as long as similar patients not on dialysis” [this means that patients on dialysis will only live a third to a sixth greater than patients who do not use dialysis – dialysis can extend a patient’s life, but not by much when the kidney is already in complete failure].

Increases in ESRD cases - NKUDIC

Increases in ESRD cases – NKUDIC

Patients with ESRD or other associated kidney problems experience threats to quality of life, particularly if they utilize dialysis treatments. Dialysis changes patients’ eating, ability to work, medication use, sleep habits, and ability to participate in the community. Furthermore, patients may feel that they are a burden to their families or caretakers, furthering reports of depression and anxiety. Dialysis can be frustrating and can restrict day-to-day functioning.

American medicine is a complex topic. We are the leading innovator in medicine and medical technologies, but the American system, unfortunately, sometimes brings families to ruin. It’s no secret that medical expenses are the leading cause of bankruptcies in America. Consequently, we must consider the financial investment that is dialysis.

According to one Harvard study, 62.1% of all bankruptcies in 2007 resulted from medical expenses, and 92% of those debtors had debts over $5000. Within the highly politicized debate of healthcare reform, we sometimes get an “image” of what someone in bankruptcy looks like. Yet, most people in medical debt are well-educated, in the middle-class, and own homes. Over 75% have health insurance. I think that it’s important to remember these facts as I review this information.

These issues don’t affect some random stranger across the country. They affect your friends, family members, and neighbors. They affect someone in your workplace.

I’m happy that I am able to approach end-of-life care in the context of health policy with its associated ethical issues – patient/physician relationships, quality of life, cost-benefit analyses, communicating with families, and physician authority. I feel that my mentor’s expertise will certainly aid patients and their families in approaching the sensitive issue of whether or not to begin dialysis treatment. I am excited about the opportunity to work with her!

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