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 to die; leaving their family and friends and the joys of everyday life is an agonizing choice. But they see a hastened death as the reasoned option to constant and confused misery.
“I love life, but I also know what my future holds,” says Susan. “I’ve thought long and hard about the suffering in store for me and my family. Unfortunately, Georgia makes it impossible for me to consult with groups like Final Exit Network to learn my options, keep my dignity, and avoid the pain that inevitably awaits me.”
A Harris poll released in late January found that over 70% of adults believe that people who are terminally ill and suffering from great pain should have the right to end their own lives. This wide support holds even among the elderly: Fully 62 percent of respondents over 65 agreed with that premise. Just 17 percent of adults overall flat-out disagreed. And 58 percent think that the assistance of doctors should be legal in following the request of a severely suffering patient who wishes to end his or her life.
These results are consistent with earlier polls conducted by CBS and CNN.
The discussions surrounding end-of-life treatment aren’t going away. Indeed, as the American population ages and medical technology advances, such issues will surface exponentially. Roughly 30,000 American s have Huntington’s disease. Another 100,000 are suffering from advanced-stage Alzheimer’s. And tens of thousands more are living with unbearable conditions like Lou Gehrig’s disease (ALS) and Parkinson’s.
Too many policymakers are simply out-of-step with public opinion on this matter. And by failing to reform their assisted-suicide restrictions, they’re condemning countless patients like Susan to unimaginable torment.
We appeal to compassionate lawmakers in Georgia and other states not to apply old mindsets to new problems: allow Susan Caldwell and others in her predicament the liberty of peaceful release from their tortured lives.
Jerry Dincin, Ph.D., is the President of Final Exit Network and a retired psychologist with more than 30 years of clinical experience. The website for Final Exit Network is www.finalexitnetwork.org.