U-M nurses produce film on 'good death'
Evan Mayday was an active, athletic man who served in the U.S. Navy. He also owned his own business and loved the outdoors.
When the Brighton, Mich., man broke his neck in a diving accident and became a quadriplegic, he became a daredevil in his electric wheelchair, racing his grandchildren up and down the driveway. He made it clear he wanted no part of life support or living in a nursing home, and when his health deteriorated enough to make that seem inevitable, Mayday said he was done.
"Evan Mayday's Good Death," a short educational film, chronicles how doctors, nurses, social workers, chaplains and other health care providers worked with Mayday and his wife, Cheryl, to be sure he was making a reasoned decision, and ultimately, to support his choice, and legally recognized right, to remove his ventilator.
Linda Strodtman and Maureen Goode Giacomazza, advanced practice nurses at U-M, produced the video. It is not the first video on end-of-life health care, but they say it is unusual because it is a case study modeling best practices rather than worst-case scenarios.
After reviewing curricula from nursing and medical schools around the country, researchers found that less than 2 percent of a health care professional's education dealt with end-of-life care, leaving them inadequately prepared for how to deal with tough questions about what a patient might want.
"Death is prevalent in our societyit's in our movies, our video games, our life with war and terror from around the worldbut it's not something we're preparing doctors and nurses to talk about," says Strodtman, an associate professor at the School of Nursing and a clinical nurse specialist at U-M Hospital. "We're all going to die, but it's seen as a failure to have a patient do the most natural thing that could happen."
As a result, patients are dying in hospital intensive care units when most everyone would rather die in their homes, and people are dying in moderate to severe pain when it could be controlled, says Giacomazza, an adjunct lecturer at the School of Nursing and a clinical nurse at U-M Hospital. People's lives are being extended by technology, and sometimes beyond how long they want to live.
Strodtman and Giacomazza worked with Margaret Calarco, chief of nursing services at the U-M Health System and associate dean for clinical affairs at the School of Nursing, to identify nurses interested in championing the idea of empowering patients to die in comfort and with dignity. They quickly heard stories from nurses about how they have changed the way they dealt with patients, and decided to expand the project.
With funding from the Center for Research on Learning and Teaching, and several other foundation and private donations, Strodtman and Giacomazza began work on two videosone about an adult end-of-life case, and a second on care of a child with a life-threatening condition.
They did not script Mayday's caregivers or his wife. Instead, they turned the cameras on each person and asked for the story of caring for a 63-year-old man who no longer wanted artificial life support. That led to 10 hours of video, which they pared down to 29 minutes.
Strodtman and Giacomazza emphasize that the discussions held after viewing the video are as important as the story. The video intentionally raises more questions than it answers, and to the 1,200-plus viewers who have seen the film, they have asked tough questions about how viewers feel and what they might have done differently.
The nurse producers are writing a discussion guide to help others who might want to present the video and lead a conversation about its key points. They hope to finish this fall, and make the video available for use in health professional education.
A pediatric film addressing several children's experiences is in early production. It will address the complicated nature of moving from trying to save a child's life to preparing for that life to end, including what happens to the child's family when an extended battle is over.
"In health care we're putting a lot of energy into birthing centers and making birth a good experience. Should we not do the same for the end of a person's life?" Strodtman asks.