Death is an uncomfortable subject for many, yet for hospice nurse Julie McFadden, it’s a part of her daily life. With years of experience helping over 100 patients navigate their final days, McFadden has gained invaluable insights into the suffering caused by some diseases and the peaceful departures that others bring. Now, she’s sharing these reflections to provide a deeper understanding of the end-of-life experience.
The Worst Disease to Die From: ALS
Among the many diseases McFadden has witnessed, ALS (Amyotrophic Lateral Sclerosis), commonly known as Lou Gehrig’s disease, stands out as the worst. She describes it as “the cruelest death” she has ever seen. ALS is a progressive condition that gradually disables the body, taking away the ability to move, speak, swallow, and eventually breathe. What makes this disease particularly tragic is that the mind remains fully intact while the body deteriorates.
“For patients with ALS, their body shuts down while their mind remains sharp. It’s heartbreaking to watch someone fade away like that,” McFadden explained. People with ALS often endure a slow, painful decline, trapped in a body that no longer functions. The disease is always fatal and currently has no cure. Its progression is unpredictable; some patients decline rapidly, while others live for several years.
In the United States, an estimated 36,300 people will be diagnosed with ALS by 2030. Though it is rare, ALS advances quickly, with half of those diagnosed dying within 14 months. The suffering caused by ALS is undeniable, with many family members sharing the pain of watching their loved ones lose their ability to move or communicate.
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Glioblastoma: A Fast and Brutal Decline
Another devastating disease McFadden points to is glioblastoma, an aggressive form of brain cancer. Glioblastoma affects memory, motor skills, and personality, often within a short time frame.
“It strikes fast and takes everything—memory, motor skills, personality—leaving patients unrecognizable,” McFadden noted. Most people diagnosed with glioblastoma survive only 12 to 18 months. The survival rate is low; only 1 in 4 patients live past the one-year mark, and fewer than 5 in 100 survive longer than five years. The emotional toll on families is immense, with many describing the heart-wrenching process of watching their loved ones disappear mentally long before they physically pass away.
A Peaceful Passing: End-Stage Kidney Failure
In contrast, McFadden points out that end-stage kidney failure can offer one of the most peaceful ways to pass. When dialysis is intentionally stopped in end-of-life care, patients often drift off to sleep without experiencing pain or distress.
“Stopping dialysis often leads to a calm death. Patients become sleepy and simply don’t wake up. It’s painless, and it allows families to say their goodbyes,” McFadden explained. This peaceful transition is a gift for many families. One commenter shared their experience: “We played music, held his hand, and he just slipped away. It was beautiful, in its own way.” Another person recalled, “My dad passed from late-stage kidney disease. When he was ready to go, he stopped dialysis. We were all able to say goodbye on his terms, which was a relief.”
Why This Matters: Dignity and Comfort in Dying
Julie McFadden’s reflections highlight the importance of dignity, comfort, and humanity during the final chapter of life. Her insights are essential in conversations about terminal care, as families seek guidance on how to best navigate the end-of-life journey. Hospice workers like McFadden are often the ones willing to speak openly about death, offering crucial perspectives on how to improve the dying process, ensuring that final moments are filled with love and respect.
In the End: A Thoughtful Goodbye
Death is unavoidable, but the way we die can vary significantly. Some pass in silence, like those with ALS, while others endure a chaotic unraveling, as with glioblastoma. However, there are also peaceful moments, such as in end-stage kidney failure, where patients pass gently without suffering.
McFadden’s message is clear: the quality of death matters. With proper care and support, even the hardest goodbyes can be peaceful and filled with love. By understanding the differences between these diseases and how we care for those affected, families can face this painful chapter with dignity and compassion.
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Julie McFadden’s work reminds us that while death is inevitable, we can control how we face it—with compassion, peace, and love.
