“Kris, I have bad news,” Mark launched his 2012 post-Thanksgiving call to me abruptly. “Very bad. Do you remember when I visited you last March and I my hand was shaky?”
Sure, I remembered. A legendary drinker until that visit, he had stayed as sober as a stone the whole time. “What’s up?” I asked.
“It’s ALS. I have ALS.”
My younger brother, Mark Chambers, was a 1972 graduate of Olean High School. He moved west in 1975 where he lived a full life, eventually rehabbing a run-down boarding house in the Capitol Hill area of Seattle. He collected friends like some people collect books, or commemorative t-shirts, or coffee mugs — legions of them. At home with his wife, Oda, he hosted mammoth parties where, on a clear morning, guests could watch the sunrise over Mount Rainier.
Mark led a charmed life. I remember once driving him up Route 16 to the airport during a brutal storm and exactly when I had lost all hope of making his flight, the skies cleared to blue and the snow stopped. Smiling wryly, he said “Yup, that’s my lucky life for you!”
ALS. Lou Gehrig’s Disease. It robs you one piece at a time, first making you walk like a drunk, then not letting you walk at all. Speech slurs, then is lost. Knees buckle. Your facial bones become prominent as the fat under your cheeks disappears. Your lungs fill with fluid and you can’t catch your breath.
By January of 2015, all that Mark retained was the ability to type with his right index finger and his fully conscious brain. It was a dreadful progression to witness and, one can imagine, worse to live through.
If he’d been a resident of New York, Mark’s death would have been horrible — he would have drowned in the fluids collecting in his lungs. Fortunately, he lived in Washington, a state with a Death with Dignity law that allowed him to decide when enough was enough. He was reluctant. He moved his date back several times (once because Oda was “too damn cute to leave today”).
On April 20, 2015, he used his feeding tube to self-administer a fatal dose of barbiturates, attended by a Hospice nurse and Oda. I had been expecting, and dreading, the call. Instead, I received an email from Mark: “Goodbye, I love you. Goodbye, I love you.” He died peacefully.
Despite everything that we and our doctors do to forestall or deny it, death is the inevitable conclusion to life. Seven states now have Death with Dignity laws on the books that allow terminally ill people to end their lives with physician prescribed medications. Twenty-three other states are considering similar laws. It is a march toward compassion.
Objections to Death with Dignity acts (DDA) take one of two forms: (a) that physicians are dedicated to preserving life, not helping people commit suicide; and (b) that physician assistance could be forced on terminally ill patients who are poor, uneducated, uninsured, disabled or fearful of the financial consequences of their illness.
To the first point, profound psychological differences distinguish suicide from actions under DDA. According to the American Psychological Association, “It is important to remember that the reasoning on which a terminally ill person (whose judgments are not impaired by mental disorders) bases a decision to end his or her life is fundamentally different from the reasoning a clinically depressed person uses to justify suicide.” Also, physicians do not administer lethal doses of drugs to patients. Patients must do that for themselves.
To the second objection, 10 years of experience with a Death with Dignity law in the state of Oregon has shown that no unwilling person has been pressured into prematurely ending life. The law is structured so that a consulting physician must confirm an attending physician’s prognosis that a person has “an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within 6 months.” This is a high level of protection against any misuse of the law.
Further, actual use of DDA is rare. During its first 10 years in Oregon, only 341 people chose to use it. A 2000 survey of Oregon physicians found that only one in 10 requests for DDA resulted in hastened death. The annual reports reveal that each year a significant number of patients obtain the medications but do not go on to take them, reflecting that these patients are comforted to have this option but do not make use of it.
New York voters now have the opportunity to help people who have devastating terminal illnesses make rational decisions about how and when to die. In 2017, New York Assembly member Amy Paulin, D-Scarsdale, together with 23 co-sponsors and four multi-sponsors, introduced A 2383, the Medical Aid in Dying Act. Her bill languished in the Health Committee throughout 2017 and 2018. It will be reintroduced in 2019.
Polls show that 63 percent of New Yorkers support Death with Dignity. Now is the time to fulfill their wishes. With Democrats in full control of both the Assembly and Senate, this bill must become law.
All the cherished Marks in our lives deserve no less.
(Kristin Chambers lives in Olean.)