OPED: Medical aid in dying must be end-of-life option
Absurd, arrogant, cruel, infuriating, outrageous, overzealous, perverse, ridiculous, ruthless, troubling, unthinkable, unjust, unsupportable, waste of resources — and brutal prosecutorial nonsense.
These words and phrases were used by editorial and opinion writers, many from Pennsylvania, to describe the nightmare of my prosecution by Attorney General Kathleen Kane’s office in 2013. I was charged with aiding an attempted suicide, a second-degree felony, for handing my dying 93-year-old father, who was in great pain, his legally prescribed morphine. When he took more than the prescribed dose, the home hospice provider and the police invalidated his legal advance directive, and he suffered greatly for four more days, enduring unwanted medical treatment that prolonged his agonizing dying process before succumbing to pneumonia. He died with the torment of knowing I had been arrested, and some of the last words he spoke were when he cried out in anguish, “Don’t hurt Barbara! Don’t let them hurt Barbara!”
After a yearlong ordeal, Schuylkill County Judge Jacqueline Russell dismissed the case, ruling there was no evidence that my father intended to end his life when he took his morphine, nor was there any evidence that I intended to help him die.
Fallout from my prosecution was enormous. I lost almost a year of income and incurred over $100,000 in legal fees. Even worse was the emotional turmoil it inflicted on me and my family. But the most devastating consequence was the terrible end of my father’s life. His suffering was compounded by his undertreated pain, the anguish over my arrest and by receiving unwanted medical treatment in defiance of his written advance directive.
My ordeal, and the tragic end of my father’s life, have led me to become a supporter of the option of medical aid in dying for mentally sound, terminally ill adults with a prognosis of six months or less to live. Two bills have been introduced in Pennsylvania, by Sen. Daylin Leach (SB 559) and Rep. Mark Rozzi (HB 1162), that are modeled after the nation’s first law to authorize medical aid in dying: the Oregon Death with Dignity Act.
When Oregon enacted medical aid in dying over 18 years ago, some argued that it would undermine the provision of good end-of-life care. But the opposite occurred. The Journal of Palliative Medicine recently concluded the “Oregon Death with Dignity Act has resulted in or at least reflects more open conversation and careful evaluation of end-of-life options, more appropriate palliative care training of physicians, and more efforts to reduce barriers to access to hospice care and has thus increased hospice referrals and reduced potentially concerning patterns of hospice use in the state.”
Newly published research in the American Journal of Geriatric Psychiatry looked at how the terminally ill define a good death. It found that what mattered most to people were having control over their dying process followed by being pain-free, and having their emotional and spiritual needs met.
Medical aid in dying offers a measure of control over one’s dying process. Many patients are comforted simply knowing they can use this option if they feel their suffering becomes unbearable. Using medical aid in dying is not an act of desperation, but a rational decision that is made after a careful evaluation process that contains strict safeguards to keep it open, transparent and safe. A Pennsylvania law authorizing medical aid in dying would improve end-of-life care for all Pennsylvanians, regardless of whether they would choose this option.
I continue to be haunted by the tragic end of my father’s life, when his goals, preferences and values were utterly disregarded. I urge Pennsylvania lawmakers and residents to support these bills that will improve care and expand peoples’ choices at the end of life so no one will have to suffer unbearably as my father – and I – did.
Barbara Mancini was an ER nurse for more than 20 years at Lankenau Medical Center in Wynnewood, Pa. She currently is a consultant for Compassion & Choices, the nation’s largest end-of-life choice advocacy organization.