Thursday, February 15, 2024

In rural Iowa, Peg Sandeen recalls the challenges of living with AIDS and the judgment of her neighbors. After her husband John fell ill in 1992, rumors began to spread. The couple had learned to cope with the stigma when things took a turn for the worse. In 1993, John, ravaged by his disease and with limited options, wanted to make a final decision: to die on his own terms with the help of life-ending medication. However, at that time, he had no way of conveying his wishes to his doctors. As the debate over assisted dying raged in Oregon, headlines used loaded words like murder, euthanasia, and suicide.

John was clear that he did not want suicide. He loved his life, including his wife who stayed by his side despite his HIV-positive status, their young daughter Hannah, and playing guitar. Ms. Sandeen, now the CEO of Death With Dignity, a group supporting aid-in-dying laws, believes that using the word “suicide” only added to the judgment they faced due to homophobia and AIDS phobia.

While John had expressed his wishes to his wife, he never discussed them with his doctors. The stigma surrounding the topic made it difficult to bring it up as a medical question rather than a moral one. The ability to have an end-of-life conversation would have made a remarkable difference, even if the answer was a simple “no.”

John passed away from the virus in 1993, just before the Death With Dignity Act was narrowly passed in Oregon. Since then, over 3,700 Oregonians have utilized the law, which allows terminally ill patients with doctor approval to receive life-ending medication. This practice is now legal in 10 U.S. states and Washington, D.C.

With this shift in perspective, new language has emerged. Many health advocates and medical professionals argue that terminally ill patients seeking medication to hasten their end are fundamentally different from individuals seeking suicide. They prefer the term “medical aid in dying” to emphasize that patients are not choosing whether to die, but rather how to die.

In the 1990s, advocates faced opposition and needed to rebrand the issue. They repositioned the terminology, explicitly stating what the practice was not: mercy killing, homicide, suicide, or euthanasia. New terms were necessary to counteract mischaracterizations and to create a more neutral phrase for medical professionals to use in their research and conversations.

Not all organizations agree that “medical aid in dying” is neutral. The Associated Press Stylebook still advises using the term “physician-assisted suicide.” The American Medical Association also believes this term is the most precise and distinguishes the practice from euthanasia.

Medical language has always shaped our understanding of death. Dr. Hannig points out how the definition of brain death changed in 1968, allowing for organ transplantation. Previously, a patient could legally be alive even if their brain activity had ceased. The change in definition created a new understanding of death and paved the way for organ transplantation.

While doctors have always assisted patients seeking a better end, it was often done secretly and with euphemisms. The Death With Dignity law introduced new language, making it easier for patients to address the topic with their doctors. The name of the law itself became a preferred term as it allowed patients and doctors to communicate without discomfort. Even in retirement, the name still sticks.

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