At sunrise the morning after her husband had died from Lou Gehrig’s disease, Sue Ann Pfister and her daughter Kelly Tran got on a U.S. Airways flight from Philadelphia to Boston. A stopover in New Hampshire presented a bit of an obstacle — a state line separating Maryland and Massachusetts meant Pfister and Tran could not reach a promised palliative care appointment.
Some patients get this way, even when traveling between states, by car, and every state has a road or bridge that can have a major impact on the ability to make a journey.
“Sometimes the help that we get from the states and the states that we don’t have a border is so limited that we literally have to cross state lines to get assistance,” Dr. Peter Raab, an end-of-life care physician with the American College of Physicians, told The New York Times.
Gehrig’s disease has plagued Pfister for the past 15 years. She could not travel to the United States from Great Britain in 2005 because the Medstar hospital was not equipped to care for someone in the advanced stages of the disease.
During several trips to the United States, Pfister had several options of hospice, an option to decrease medication and allow natural death. But travel long distances to reach a palliative care appointment proved to be too much of a burden on her.
Watching from her wheelchair as the caregivers were preparing Jerry for hospice, Pfister says she understood immediately why she did not have the right kind of transport to be in the United States.
“They were tying his chair up behind his head while they were doing the last thing,” she says. “I saw that in the works and I thought this can’t be happening.”
Pfister lobbied for a change in the law to allow this special type of transportation in order to allow for early hospice visits with her husband. After a lot of discussions with lawmakers and a successful grassroots campaign, the change was approved in 2016.
Since then, Pfister’s options in the United States have expanded to the point where she no longer has to qualify for a special hospice visit each time she visits the country.
It took Tran and Pfister a decade to change that part of the law. They fought, lobbied and were successful in helping change the law. For their efforts, they are being recognized on Tuesday in the section of the Congressional Record.