One night she awoke in the middle of the night, shaking and febrile from what would turn out to be pneumonia. When I called 911 and the ambulance arrived, I knew she didn’t want extraordinary measures, but I also knew how to communicate with her. She was able to express herself and confirm that she did want to go to the hospital. Once there, she issued consent for an IV antibiotic to treat the infection. Unable to swallow pills by that point, she was admitted so the treatment could run its course.
That weekend was the beginning of the end for my mom, who had been diagnosed a year and a half prior with a rare degenerative disease called primary progressive aphasia, at age 62. The illness stole her words, created confusion and made it exhausting to follow conversations and, as things got worse, impeded her ability to swallow, taking away not only her nutrition but also a most basic happiness she had always found in meals shared with loved ones.
My mother wanted to live. She wanted to meet her future grandchildren (there are now two, both named for her). But she didn’t want to live like that. After undergoing a swallow evaluation at the hospital, we were told that eating and drinking now posed a significant hazard. The only option was a feeding tube. Again and again, when asked if she wanted one, even at her weakest, she vehemently circled the word “no” on the piece of paper that had become her means of answering questions. We had no doubt that she knew exactly what she wanted. Fortunately, my mother, ever the planner, had been organized and proactive in completing an advance medical directive, which also specifically emphasized that she would never wish to be fed by tube.
That was when we knew it was time to take my mother home from the hospital and bring in hospice care. As we drove home, she was the happiest she had been in weeks, because all she wanted was to be in her own home, surrounded by our family. I turned the radio to oldies, her favorite, and we danced our way home. She was wearing her bathrobe and my sunglasses. My family are I are grateful for the care and support of Jewish Social Service Agency Hospice and the Association for Frontotemporal Degeneration through my mother’s illness.
Qualified, terminally ill individuals deserve to have the lawful means to peacefully end their pain and suffering. Similar to other death-with-dignity laws now on the books in several states and in Washington, D.C., the bill Maryland’s General Assembly is considering would require the patient to be diagnosed as terminally ill with a prognosis of less than six months to live and to have the capacity to make an informed medical decision and to self-administer medication. I know firsthand the importance of agency and options in one’s care.
A civilized society should accord its citizens the very basic right to make the rational decision to allow their loved ones’ last memories of themselves to be as they wish to be remembered (rather than as shells of themselves because of physical or mental deterioration).
Maryland’s End-of-Life Option Act would give doctors the tools to help patients who seek medical aid in experiencing a dignified end to their lives, on their terms and of their choosing.