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The Case of Madisyn Whitfield: Chronic Illness and the UninsuredBy Anna Kozas
Madisyn (Maddy) Whitfield, 25, has been a graduate student at a prestigious state school on the West Coast, studying for her master's degree in Health Psychology. She has attended school part-time because she must also work and allow enough time for all the hours of fieldwork mandated by her program.
Due to a chronic health condition, Maddy must be cautious about not overworking or overstressing herself, another reason for not attending school full-time. As a junior in high school, Maddy was diagnosed with Crohn's disease, a chronic inflammatory disease of the gastrointestinal tract. While there is no cure for Crohn's, there are several medications and life style modifications that can keep the disease in remission the majority of the time. It is normal for patients to experience cycles of remission and relapse and to go through the periods of flare-up with relatively few severe consequences. Without proper care, however, patients are more likely to experience flare-ups. The more severe and the more frequent the flare-ups, the higher the chances that the patient will require surgery because of permanent damage to the intestinal tract. Until a few years ago, Maddy had only experienced a few minor flare-ups of her disease. She had taken control of her health from the time of her diagnosis and was able to keep herself relatively healthy by seeing her Crohn's specialist regularly, taking the necessary medications, eating healthily, and exercising frequently.
Since graduating from college, however, Maddy's health has been declining. No longer covered under her father's PPO (preferred provider organization) health insurance, she stopped going for regular check-ups with her IBD (inflammatory bowel disease) doctor and could rarely afford the out-of-pocket expenses for medications. She had been able to continue her healthy eating habits and activity level while living at home, but since starting graduate school and moving away from home, that has not been the case. Time and money constraints do not allow Maddy to properly care for herself, and the stresses of school and her disease have contributed to her worsening flare-ups. In the past year she has been experiencing shorter and shorter periods of remission followed by longer periods of relapse. Unable to continue at the same pace, last month Maddy had to take a leave of absence from school, so that she could continue her job as a waitress and support herself.
Last week, Maddy began to experience excruciating lower back pain, chills, fever, malaise, and fatigue. Maddy had suspected kidney stones as this was a periodic occurrence; she had developed kidney stones in the past and assumed that these would pass just as the others had. She resisted going to the doctor because of her lack of health insurance. While it is not unusual for patients with Crohn's disease to develop kidney stones, because of Maddy's severe flare-ups, her body was so dehydrated and malnourished that the stones couldn't pass and only grew larger. She had eventually come to the point of being unable to eat or drink anything.
When her friends saw how rapidly she was declining they stepped in and brought her to the emergency room where routine blood and urine tests were done, and an abdominal x-ray was ordered. Based on her symptoms and health history, dehydration was suspected and nurses immediately started Maddy on IV fluids while they waited for all the test results to come in. Eventually, doctors determined that Maddy needed to be admitted. Not only was she dehydrated, but she was also severely malnourished. In addition, she had two very large kidney stones, which had caused an infection. Once she was admitted, nurses continued the IV fluids, started Maddy on IV antibiotics, and inserted an NG (nasogastric) feeding tube.
Maddy spent five days in the hospital until doctors were convinced that she could keep enough food and fluid in her system to remain sufficiently nourished. It was no mystery to Maddy why this crisis happened; she knew as well as the doctors that she needed to start taking her Crohn's medications again. She was discharged with strict instructions to follow up with her Crohn's specialist within the next few days and to start treatment accordingly. The nurses at the hospital also set up a pre-op appointment for surgery to remove the kidney stones. Because of the size and location of the stones, and the infection, the stones must be removed by percutaneous nephrolithotomy. In this procedure, a surgeon would make a small incision in Maddy's back, insert a hollow tube into her kidney, and remove the stones through the tube. Doctors had wanted to do the surgery while she was in the hospital, but Maddy refused, knowing that she could not afford to pay for the surgery. While the procedure is relatively minor, it does require anesthesia and a hospital stay of two or three days. It also requires a catheter be inserted into the kidney to allow it to drain and heal. Without health insurance, Maddy knew that covering the costs would be impossible, and she chose to leave AMA (against medical advice) to take some time to figure out a plan and decide what options were available to her, if any.
As she had already taken a leave of absence from school, given her current condition, Maddy decided to take some time off work and go home to stay with her family for a while. Although Maddy is close to her family, she has not told them about recent occurrences, and they have no idea that she spent several days in the hospital. Maddy's father recently lost his job, and her mom has only been able to find part-time work. They have been struggling for the past eight months to make ends meet, trying to raise their two other children on a part-time salary without any benefits. Maddy has been aware of the situation, and for that reason, has not wanted to bother her family with her situation. With nowhere else to turn, however, she now decides to go home to focus on recovering and figuring out what do from here.Reflection Questions
Response by Ella Sanman
Response by Nick Welter
Response by Richelle Neal
Anna Kozas was the 2008-09 Honzel Fellow in Health Care Ethics at the Markkula Center for Applied Ethics. The case and responses were written by students who have participated in the Center's Health Care Ethics Internship Program.