Wondering when treatment becomes worse than Huntington’s disease
At what point does keeping someone alive stop serving them?
Written by |
My wife, Jill, talks about the future more than she used to. It’s not a conversation about vacations and retirement plans, but a quieter, heavier one that comes with being gene-positive for Huntington’s disease. Recently, she looked at me across our kitchen table and asked, “At what point does trying to keep someone alive become worse than letting the disease run its course?”
It was not a hypothetical question. It was about her and us.
Huntington’s is a progressive disease, and Jill knows what that progression can look like. Her father, along with multiple people on his side of the family, were also gene-positive.
When she imagines a later version of herself, she doesn’t just picture symptoms; she also thinks about decisions, such as feeding tubes, hospitalizations, and repeated interventions that might extend her life but also prolong her suffering.
“What if the cure is worse than the disease?” she asked, using “cure” to mean any measure that keeps the body going when the rest of her is spiraling downward.
For Jill, the issue isn’t whether life has value. It is what kind of life is being preserved. If she can no longer eat without choking, recognize loved ones, or share what she wants, would inserting a feeding tube be an act of love or an act of fear? Would it give her more time, or give Huntington’s more time to hurt her?
She has seen families pulled in both directions. Some cling to every treatment, hoping for a turnaround. Others choose comfort care earlier and then struggle with guilt. Jill understands both reactions. Our instinct to protect the people we love can push us toward “more” — even when more does not mean better.
Medicine can sometimes confuse survival with healing. Machines can breathe, tubes can feed, drugs can steady a heart. None of them can guarantee a life the person would actually want to live. Jill worries that, in the rush to do everything, we forget to ask whether those things still serve the person at the center of it all.
She also thinks about the people around her. “I don’t want you or Alexus [our daughter, who is also gene-positive] to watch me suffer longer than I need to,” she told me. “If I’m only alive because of tubes and machines, who is that really for?”
I know part of me will always want one more day, no matter the circumstances. That is where her question becomes mine: When does my wish to keep her here add to her pain instead of easing it?
We have tried to answer that with practical steps. Jill talks openly about advance directives and end‑of‑life wishes. She wants her future self, who may not speak clearly, to be protected by the voice she has now. Comfort, dignity, and connection matter more to her than sheer length of life. She wants symptoms treated, pain managed, and anxiety eased.
She does not want to be kept alive simply because the technology exists to do it.
No neat answers
None of this means she wants to die. She wants good care, meaningful time with family, and access to therapies that truly help. What she fears is being carried past a point she would have chosen, because fear and habit kept everyone saying “yes” when her heart was quietly saying “no.”
I’m still learning how to hold hope and honesty together. I want to believe in better treatments. At the same time, I have to respect the boundaries Jill is trying to draw while she still can.
“Maybe the real question isn’t, ‘When does the cure become worse than the disease?'” she said one night. “Maybe it’s, ‘When does treatment stop serving the person and start serving everyone else’s fear?'”
We don’t have a neat answer.
What we have is a promise to keep talking, involving her doctors, writing things down, and listening, even when it hurts. There may never be a clear line where everyone agrees that enough is enough. But if we keep asking the question together, we can at least try to make choices that reflect who Jill is, not just what Huntington’s does.
For now, the disease continues its slow march. What we can control is how thoughtfully we face that uncertainty. Jill’s question lingers between us, not as a sign of despair, but as a reminder that our goal is not just to keep a heart beating. Our goal is to protect, for as long as we can, the dignity, love, and personhood that make that heartbeat matter.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Ann
Decisions about treatment can be especially challenging when a condition affects both quality of life and daily functioning. I appreciate articles that discuss these difficult questions because patients and families deserve thoughtful information and understanding. Every person's situation is different, so open conversations with qualified healthcare professionals are important when weighing possible benefits and burdens.