Huntington’s Disease, Autonomy, and Limitations to End-of-Life Autonomy 

By Peg Sandeen, CEO of Death with Dignity 

Last year, the Bob Dylan biopic A Complete Unknown featured several scenes of an incapacitated Woody Guthrie leading a solitary life in an ambiguously defined healthcare institution. Guthrie’s final days were a minor theme in the movie, and the film didn’t identify or explain his illness and symptoms. Indeed, the depiction obscured the devastating nature of the condition that led to the elder Guthrie’s¹ death–Huntington’s Disease.

Huntington’s Disease (HD) is a rare, hereditary neurodegenerative disease with symptoms that resemble dementia, Parkinson’s, and ALS–all at once. It is incurable, progressive, and fatal.

^{1. Marjorie Guthrie was married to Woody Guthrie and cared for him throughout his illness. She was the mother of folk singer Arlo Guthrie and a founding member of the Huntington’s Disease Society of America.}

How Huntington’s Disease Impacts End-of-Life Choices 

For families impacted by HD, suffering spans generations. Because HD is genetic, every child of an affected parent has a 50% chance of inheriting it. Young people grow up witnessing the slow decline of their parents or grandparents: changes in behavior, depression, severe speech and movement impairments, and loss of cognitive function. 

Over time, their loved ones lose the ability to work, care for themselves, or communicate clearly. And, eventually, will require constant care. For the following generations, the anguish involved in living with the knowledge that they, too, might develop the same disease that claimed their family members is a constant reality.

This is not just a personal tragedy; it’s a generational cycle of loss that tests what it means to live, love, and die with dignity. 

The Limits of Death with Dignity Laws for Neurodegenerative Disease

Huntington’s Disease is one of many neurodegenerative conditions whose symptoms rob people of dignity, autonomy, and independence—but which does not qualify for Death with Dignity in the United States. As a condition of qualification, medical aid in dying (MAID) laws require a patient to be both terminally ill (expected to die within six months) and mentally competent to make and communicate healthcare decisions. For those with HD, this creates an impossible paradox: they lose cognitive capacity before their illness becomes terminal. 

Intuitively, HD would seem like one of those conditions that should lead to qualification for MAID. A civil society shouldn’t support the forced, slow suffering of an individual with a disease that is 100% fatal. Values like mercy and compassion, respect for individual autonomy, and dignity and human worth are especially relevant to those living with and dying from HD. The cruel reality is that the compassionate option of Death with Dignity is unavailable to them.

New Gene Therapy Offers Hope for Huntington’s Disease

In September 2025, the pharmaceutical company UniQure announced promising results from a clinical trial of a novel gene therapy called AMT-130, offering families a new reason to hope. 

This treatment involves a half-day brain surgery to infuse an engineered virus directly into affected regions of the brain. In this phase I/II trial, participants who received AMT-130 were followed medically for three years, and overall, experienced a 75% slower rate of decline in movement, cognition, and daily functioning compared to those who did not receive the therapy. In examining factors related to independence, study participants experienced a 60% slower rate of decline than those not in the study.

These are remarkable numbers, and ones that should give hope to families impacted by HD. There are cautions and limitations, though—this is only early evidence of the treatment’s potential success, not peer-reviewed, and with very few participants (n = 12 patients reaching the three-year point at the end of the study). Also, gene therapies are historically expensive, running into millions of dollars for some. Access and affordability will be a tremendous challenge in itself.

More Hope, More Choice: A Call for Compassionate End-of-Life Options

Even with limitations, these study results offer hope for those with a debilitating and fatal disease once considered untreatable. The pharmaceutical manufacturer behind this novel therapy previously brought a similar gene therapy for those living with hemophilia to the market.  Their scientists note these breakthroughs with AMT-130 are likely to pave the way for treatments for other motor neuron disorders, such as ALS. ALS is the most common of all neuron disorders and a prominent underlying condition for dying patients requesting MAID in the United States. 

For the Huntington’s community, and for anyone facing a terminal or degenerative illness, this research offers hope: more time, greater independence, and the power to make their own choices. Because at the end of life, autonomy and dignity are outcomes we should all fight for.

Want to learn more about medical aid in dying and the options available for those facing terminal or degenerative illnesses? Explore our resources on end-of-life options today.