The key to clinical excellence in long term care rests not solely on the physician, but also with hands-on bedside caregivers—the unsung heroes of healthcare—nurses, and in this patient story, a recreational therapist.
From snacks to nursing
Ms. W grew up in Jamaica in a large extended family. After school she earned her way to independence by selling snacks at the Kingston Stadium. She married, had children, and built her enterprise into an import export business. She later came to the US and became a licensed practical nurse, giving her children an education in America.
In 2002, she fell at work and was diagnosed with ALS. By 2008, she was on full ventilator support with a tracheostomy. She also was found to have Conn’s syndrome (a functioning aldosteronoma) and was treated with spironolactone and losartan for accompanying hypertension. She came to the long term acute ventilator unit of the Johns Hopkins Bayview Medical Center Specialty Hospital in 2008, where she has been a patient ever since.
Testifying on behalf of my patient
In 2009, her medical insurance insisted she be moved to a skilled ventilator unit. She and her daughter appealed this decision through a court process extending over several years, and although losing many times with her daughter acting as her lawyer (she was not a lawyer), won her case against the state’s attorney when I was finally allowed to testify on the patient’s behalf. Finally, the President of the hospital sent his lobbyist to the state legislature and a bill was passed allowing her to stay in our facility (the Specialty Hospital Ventilator Rehab Unit).
Our recreational therapist
Her family, working with our staff, were able to raise funds for an Eye Gaze Computer System and she now uses it for six to eight hours every day. The key to autonomy on the Eye Gaze computer was our recreational therapist, who then educated the nurses and her physician on how to set it up and adjust it for her daily use.
Ms. W has now written a book describing her family and early years in Jamaica, her experience coming to the US, and becoming unable to move or breathe since being ventilator dependent. She is now working with her recreational therapist toward publication. As her physician, I have admired her good humor, resilience, and ability to have all our staff work with her despite her illness and what appears from casual observation to be severe adversity.
The unsung heroes of healthcare
The keys to clinical excellence in her care spanning over a decade have rested not solely on her physician, but with her hands-on bedside caregivers—the unsung heroes of healthcare—nurses and especially recreational therapy. All staff know her as a remarkable individual, someone who overcomes adversity with humor and now is articulate writing her biography while enduring disease usually fatal in less than five years. Without continuity of care and advocacy her story could be very different. It takes a village for true clinical excellence.