Hazel K. Goddess' story illustrates much of what can go wrong in the prevention and management of stroke today, even in the face of medical advances in stroke prevention and treatment.
Preventative Measures Neglected
Mrs. Goddess had been diagnosed with diabetes when she was in her late 60's and also had hypertension. Her mother and several of her maternal aunts had died of stroke. In 1987, she suffered a series of small strokes, which left her functionally and cognitively impaired. Diabetes, hypertension, family history and small strokes are all risk factors for stroke, yet no preventative measures were taken to reduce her risk. Small strokes often foreshadow a major stroke, an outcome that may be prevented with blood thinners.
The lack of medical intervention was compounded by a lack of communication. Despite Mrs. Goddess' elevated risk, no physician had ever discussed stroke risk or prevention with her. Nor had anyone warned her family what symptoms to watch out for or what should be done in the event of such symptoms. Critical opportunities for prevention and education were missed.
Mrs. Goddess was an inpatient at a suburban Seattle hospital when she had her stroke. Her medical team, however, did not immediately diagnose the stroke, even though her symptom's — garbled speech, trouble swallowing, and weakness on her left side — were classic signs of stroke.
When her family attempted to communicate with her medical team about their concerns, they received obscure, contradictory and uninformative answers. No confirmatory tests were done, the first step in emergency treatment of stroke. It was only after repeated discussions with her doctors that a brain scan was finally conducted to check for signs of stroke. (The family later learned that this hospital, a major metropolitan medical center, was not equipped to do a full stroke work-up.)
In the meantime, the three-hour window had long since passed for administration of a promising drug that limits brain damage in some people with stroke. The only opportunity Mrs. Goddess had for acute treatment had been missed.
In the days following Mrs. Goddess' stroke, her family began to ask questions about what could be done to help her recover. Her quality of life had already suffered since the mini-strokes, and they feared that she would be further disabled. No one on her medical team could provide information or recommendations about stroke rehabilitation. Through the family's own research, they learned of an investigational strategy that was helping many people recover function after stroke, but it needed to be initiated immediately. They contacted the investigators, brought in a new stroke neurologist and a physiatrist, and started Mrs. Goddess on the therapy.
Had it not been for the Goddess family's own research and initiative, Mrs. Goddess' best opportunity for recovering lost function would have been missed.
Despite making progress in rehabilitation, Mrs. Goddess suffered a number of setbacks after the stroke and eventually died of complications. Shortly before she died, her daughter — Lynn B. Goddess — asked her if she would do anything differently if she could live her life over. Her mother's one regret: that she failed to leave behind something of lasting importance to humanity.
When Hazel K. Goddess died, people asked if they could make a contribution in her name, and her family didn't know what to tell them. Neither the stroke neurologist nor the family had ever come across any organization devoted to stroke in women. And then it dawned on them. This was an opportunity to create, in Mrs. Goddess' death, the "something of lasting importance" that she so wanted to create in her life. This would be her legacy.