The Atlanta native has Huntington's disease: a rare, incurable, genetic disorder. Today she has serious trouble swallowing, but the most debilitating effects of her illness lie ahead.
Huntington's disease's steady deterioration in motor function ends in complete loss of control over voluntary physical movement, accompanied by dementia. The entire decline from first symptoms to death takes, on average, 15-20 years, a prolonged and horrific descent into hell.
Susan's grandfather, uncle, and mother all died from Huntington's. She knows her end will be like theirs: immobilized in a hospital bed, tubes in her stomach and arms and down her throat, surrounded by friends and family she no longer recognizes , and suffering unrelenting pain.
In 2008, Susan contacted Final Exit Network (FEN) about hastening her own death to avoid her inevitable and unthinkable end. FEN provided information about safe, reliable, and painless early-death options, and promised in-person comfort and guidance should she choose one of them. But we encouraged Susan to tough it out for a while; she was still healthy and had friends and family that would be devastated by her death. She promised to get back in touch once her condition worsened.
Then Georgia launched an all-out attack on "assisted-suicide groups." State law (O.C.G.A. 16-5-5) charges with a felony anyone who "publicly advertises, offers, or holds himself or herself out as offering aid to another in suicide."
That meant our Final Exit Network can't even talk to desperate patients like Susan; the law makes talking- let alone "assisting," which we do not do- a crime. Indeed, in 2009, state authorities brought felony charges against four of our members related to end-of-life consultations.
Georgia's campaign represents a fundamental misunderstanding of what FEN does, and the life-and-death mental gymnastics that patients like Susan are forced to endure.
FEN has both a respect for life and a belief that the individual is the best determiner of when suffering has -or will- become so unbearable that it cannot be tolerated. We do go to great lengths to ensure that those people who reach out to us are of rational and sound mind. But the hard truth is that there are tens of thousands of patients in this country with incurable medical conditions that make life intolerable, who desperately seek to escape their suffering.
"Suicide" is a misnomer that dishonors their dignity. People like Susan don't want