'Enjoy What You Have Left of Your Life'

Learning Objectives: At the end of this activity, you will be able to:
  • Discuss why it can be challenging for health care providers to care for themselves.
  • Recognize that the language providers use when dealing with patients has influence on patient behaviors and actions.
  • List at least two examples of unsafe behaviors that put the patient at risk.

Description: In a new patient story, you’ll hear the story of a nurse named Christiane who becomes a patient after she is diagnosed with an inoperable brain tumor in the midst of her career. As you follow Christiane’s story, you’ll be prompted to stop along the way to consider a number of questions about her care and challenging transition from provider to patient. When you get to the end of the story, you’ll hear from Christiane and get her perspective on the experience.

Christiane is a healthy 18-year-old when she begins to notice some odd pain in her head, particularly when she applies pressure to certain spots. She goes to her primary care physician and, after receiving a scan, is told that she has a tiny cyst in the middle of her brain. The doctor explains that the cyst has likely been present since birth. He tells Christiane that she shouldn’t worry about it unless she develops other symptoms, such as dizziness or sudden vomiting.
For the next decade, Christiane doesn’t experience any dizziness or vomiting, and lives a normal, healthy life. She occasionally thinks about the cyst, but with no apparent symptoms, decides not to seek additional care.
Christiane becomes a nurse and begins working in the emergency department of a hospital. One night while on duty, she experiences a serious and unexpected episode of vertigo. She visits her new primary care doctor in Atlanta and is scanned again. He tells her that her cyst has doubled in size and additional smaller cysts have developed around it. He suggests that she return yearly for additional scans to monitor the situation.
Focusing on her busy career as a clinician, Christiane does not have her cysts looked at again for another six years. When she finally returns to the doctor, the situation has gotten much worse.
christiane brain scan pre-op.png 
An image of Christiane's brain taken in April 2010.
Christiane is told she has a huge growth in her brain with hundreds of bubbles around the brain stem. She is diagnosed with low-grade glioma, otherwise known as a benign brain tumor.
Discussion Question: Why do you think health care providers often struggle in the transition from provider to patient? What might prevent them from seeking out care?
Multiple physicians tell Christiane that the location of her tumor makes it inoperable — she is told that an operation will destroy too many functions of the brain to be worth the risk. She receives many additional opinions on her diagnosis; her brain scans are even shown at academic conferences across the country, two of which she attends. One doctor advises Christiane to “get your favorite bottle of wine, find your favorite beach, and enjoy what you have left of your life.”
Discussion Question: Put yourself in the patient’s shoes. If you received this advice from your doctors, how would you react?
No physician or surgeon wavers from the original diagnosis. Christiane is warned that any surgeon who claims that he can operate on her tumor is simply a “cowboy” surgeon who will operate with little to no regard for the delicacy of the procedure and ensuing complications.
During this time, Christiane befriends a nurse practitioner who puts her in contact with a neurosurgeon she hasn’t yet consulted. Christiane meets with him, and is surprised when he suggests that her tumor may be treated surgically. The surgeon admits that he feels he does not yet have the skills needed to treat the tumor, but is confident that he eventually will. They carefully monitor her condition together for the next four years.
After gaining more experience by performing some complicated surgeries, the surgeon tells Christiane that he now feels that he has the skills to perform her operation. Before the procedure, Christiane and her family meet separately with her surgeon, anesthesiologist, and other clinicians who will be present during her surgery. Christiane comes to the meetings prepared with a list of questions regarding patient safety protocol she learned during her own medical training.
The anesthesiologist meets with Christiane and her family, but keeps her head down and her eyes focused on Christiane’s chart when answering Christiane’s questions. When Christiane asks if the anesthesiologist will be engaged during the time out before surgery — a time in the operating room (OR) immediately before incision when all activity stops in order to review the correct patient, site, and antibiotic timing — the anesthesiologist nods in response without raising her head. Christiane repeats her question and then clears her throat until the anesthesiologist makes eye contact with her; they both laugh as the anesthesiologist realizes Christiane’s point. She apologizes, assuring Christiane and her family that she will stop what she is doing in the OR and engage in the time out.
Discussion Question: Have you ever been a patient during your time as a health professions student or a health professional? How do you think your profession influenced your behavior as a patient?
Christiane’s surgery is successful. There are no complications – the majority of her tumors are accessible by endoscope. She spends only 45 minutes in the recovery room after leaving the prep area.
christiane brain scan post-op.png 
 An image of Christiane's brain taken 90 days after surgery in October 2011.
During her stay in the intensive care unit following surgery, Christiane rings for a nurse to change her bedpan. The nurse who arrives immediately corrects Christiane, telling her that she should have called a technician. About 10 minutes later, the same nurse returns with twelve barcoded bags of medication, including medication to lower Christiane’s blood pressure. Christiane does not have high blood pressure, and has never taken this medication before. When she tells the nurse that there has been a mistake, he corrects her again, explaining that he followed the hospital’s barcoding system and therefore did not make a mistake.
Christiane requests that the nurse assist her with opening the bags to verify the medications. (She cannot make full use of the right side of her body following her surgery.) He refuses, tossing the bags on the bed and telling her that she should consider it part of her physical therapy to open them. Christiane immediately requests to speak to the manager and director of nursing, and demands that the nurse never to return to her room.
Discussion Question: Pretend you are the director of nursing. What would you say to the nurse who brought the bags of medication to Christiane’s room?
Both the manager and director are very apologetic, and check in often to make sure Christiane has excellent care for the rest of her stay.
A year after her surgery, Christiane is grateful to be alive and relieved that she's not so easily tired. Her mental acuity is back, though she does need some reminders.
Christiane is now a Systems Performance Improvement Coordinator at a rural hospital.

Now listen to Christiane as she explains how this experience has shaped her view of the health care system and its emotional effects.

Discussion Questions:

  1. Do you feel differently about the story after hearing from the patient?
  2. How can we prevent Christiane’s experience from happening to other patients?
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