The health care system is a ruthless and turbulent ocean. For many patients, even a regular visit to the doctor can be quite unforgiving. With patient safety, effectiveness, patient-centeredness, efficiency, timeliness, and equity concerns, health care visits can feel like navigating the ocean on a flimsy fishing boat. Now that we are transitioning into the phase of implementing and executing health reform, we must push patient-centeredness to the forefront of all our efforts to inform us on how to improve the quality of our health care system.
For example, the concept of the medical home that many say will transform health care into a more coordinated and comprehensive system isn’t just implementing electronic medical records, restructuring care teams that group physicians, nurses, physician assistants and other allied health workers together, redefining scheduling, or figuring out how to pay for these new services. The medical home needs to be a patient-centered medical home—one that actively engages the patient’s needs and concerns. Our system’s struggles with achieving patient-centered care is most evident in how health care providers deliver bad news to patients.
Kris (*all names changed to maintain privacy) is a multiple sclerosis (MS) patient and my longitudinal patient experience patient volunteer. Her experiences of reaching and finally receiving her diagnosis were far from ideal. Not only was her fishing boat almost completely destroyed by the big waves of the health care ocean, but she was also left alone to salvage the pieces. The first symptom she developed was a rapid decline in her vision. A busy nursing student at the time, this was the last thing she needed. She visited an optometrist to increase the prescription of her glasses--that’s all she thought she needed to alleviate this perturbance of age. But, Dr. Ortiz, the optometrist, was worried by what he saw. He explained his concerns of multiple sclerosis, encouraged her to see an ophthalmologist, and offered his kind words and a prayer.
This one good experience was soon overturned when Kris had to battle the sea monsters of scheduling and physicians simply not understanding the gravity of this impending diagnosis. Before Kris’s MS was even confirmed, one physician had told her that there was no rush for her to have an MRI because her diagnosis was not going to change.
The health care ocean is now littered with online resources that provide health care information, good and bad. Kris consumed all of this information and already had a clear picture of the worst case scenario before she was finally diagnosed. As Kris reflects, “You are going to destroy and completely change someone’s life with what you say, but instead of being just the wrecking ball, bring the rescue team with you.” Too often does our health care system see patients as floating vessels of transactions—bait it, catch it, and then throw it back into the ocean. A diagnosis is not the first step towards a pathway of reactive care services. How that diagnosis is reached is life-altering and how it is delivered today allows us to lose the tremendous potential the health care system has to truly help and support our patients.
What Kris needed on her odyssey to her diagnosis was a patient-centered medical home, a supportive health care team that acknowledged and respected her voice in the system. She did not need a physician to tell her to quit nursing school and she could have had more support than the kind words and encouragement of Dr. Ortiz. Our health care system failed to learn and understand Kris’s values and life goals. As a result, she spent years struggling to manage her MS. How could she take daily steroid injections when she was afraid of needles and the side effects were threatening to further derail her life? No one ever talked to her about her fears of becoming completely incapacitated or how the image of her first rotation at a nursing home with a patient with severe MS haunted her. Kris was a patient lost at sea. On her worst days, she would hold onto the knowledge of her ailing mother’s bag of potassium as a source of comfort and control. Where was the health care system while all of this was happening?
As a medical student, I often think about Kris’s story and what I would have done differently. On an individual level, I strive to have the positive impact that Dr. Ortiz had on Kris. He was her sole guiding oar and provided her with not only support, but also empowered Kris to take control of her diagnosis and life. Dr. Ortiz took the time to understand Kris and tailored his medical support to fit her needs. Today, Kris is not just an MS patient. She is a strong woman, a mother of two adopted children, and a NICU nurse, who happens to have MS. On a system level, we need to move away from being disparate objects floating in the ocean that patients can helplessly grab at, and move towards becoming the anchor and compass of their care—a patient centered medical home.
Until patients feel that they can interact with the health care system with the same level of comfort and ease, like on a luxury cruise liner, than we have a long way to go. As a first step, let’s allow our compassion to resurface and start our care with improvements in delivering bad news.
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