ALS, or Amyotrophic Lateral Sclerosis, often referred to as Lou Gehrig’s disease, is a devastating neurodegenerative illness that progressively paralyzes muscles. This rare disease affects nerve cells in the brain and spinal cord, leading to a gradual loss of abilities like speaking, eating, walking, and eventually breathing. According to the Mayo Clinic, there is no cure for ALS, and the typical life expectancy after diagnosis is three to five years, though some individuals live for decades with the disease. In April 2024, 83-year-old Barbara Goodfriend, a widow from New Jersey, received the devastating ALS diagnosis. Faced with the rapid deterioration of her health and the grim prognosis of potentially not surviving past the fall, Barbara made the difficult decision to exercise her right to medical aid in dying (MAID).
Understanding Medical Aid in Dying (MAID) and ALS
Medical aid in dying allows terminally ill individuals to end their lives with prescribed medication, self-administered without the direct supervision of a medical team. It’s crucial to distinguish MAID from euthanasia, which is illegal in the United States. In euthanasia, a doctor administers the life-ending medication. The option of MAID became available to Barbara under the New Jersey MAID Act, enacted in August 2019. This law, along with similar legislation in several other states, including California, Oregon, Washington, Montana, Vermont, Colorado, Washington D.C., Hawaii, Maine, and New Mexico, provides terminally ill patients with the autonomy to make end-of-life decisions. Barbara’s choice reflects the profound impact of ALS on patients’ lives and the agonizing decisions they face. The progressive loss of physical function and independence can lead to a significantly diminished quality of life, prompting some individuals to seek control over their final moments.
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Barbara Goodfriend’s Final Decision and Journey
In a final interview with CBS Evening News’ “Eye on America,” Barbara courageously shared her story and the reasons behind her choice. While acknowledging her desire to live longer, she expressed her unwavering conviction that a life with the debilitating effects of ALS was not a life she wanted to endure. She told correspondent Nikki Battiste, “What am I going to give this up for? To be in a wheelchair? To have a feeding tube? I wish I had more time to live, but I don’t want more time as a patient.” Barbara also voiced her hope that her decision would contribute to greater understanding and acceptance of MAID, allowing others facing similar circumstances to have the same option.
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Family Support and Final Days
Barbara’s decision to pursue MAID was met with understanding and support from her family. Her daughter, Carol, acknowledged the difficulty of supporting such a choice but emphasized that respecting her mother’s wishes was the ultimate act of love. Barbara’s final days were spent surrounded by loved ones, sharing laughter and tears, and reminiscing. She described her last week as filled with family and friends, crying, laughing, and enjoying each other’s company.
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A Legacy of Choice and Courage
Barbara Goodfriend passed away peacefully in November. Her story highlights the complexities surrounding end-of-life decisions and the importance of individual autonomy in facing terminal illness. Her final words, “I’m not afraid of dying…I was afraid of living,” underscore the profound impact of ALS and the courage it takes to choose a dignified exit on one’s own terms. Barbara’s legacy serves as a testament to the ongoing conversation about MAID and the right to make choices about one’s own life and death. Her story reminds us of the importance of empathy, compassion, and respecting individual choices in the face of profound suffering and terminal illness.
Frequently Asked Questions About Medical Aid in Dying
What is the difference between Medical Aid in Dying (MAID) and euthanasia?
MAID involves a terminally ill patient self-administering prescribed lethal medication, while euthanasia involves a physician administering the medication. MAID is legal in several states, while euthanasia is illegal throughout the United States.
Who is eligible for MAID?
Eligibility criteria for MAID vary by state but generally include being a mentally competent adult with a terminal illness and a prognosis of six months or less to live. Two physicians must confirm the diagnosis and prognosis.
Is MAID considered suicide?
MAID is generally legally distinct from suicide. It is considered a medically assisted death for terminally ill individuals who meet specific criteria.
What are the arguments for and against MAID?
Supporters of MAID emphasize patient autonomy, relief from suffering, and the right to a dignified death. Opponents often cite religious or moral objections, concerns about potential abuse, and the importance of preserving life. The debate surrounding MAID remains complex and deeply personal.
