Survey on End of Life issues in HD

Are you, a family member, or someone you care for at-risk for, or diagnosed with Huntington’s Disease? Are you 18 years old or older? If so, we invite you to help us better understand the values and beliefs of members of the HD community regarding challenges in late stage and end of life care in HD.

Recently, the California Legislature passed the “End of Life Option Act” that allows patients with a terminal illness to request a prescription for an aid-in-dying drug. Part of this survey will address end of life care choices. We are interested in learning about the needs and experiences of late-stage HD patients and families and understanding their experiences with end of life care. We also want to explore the values and beliefs that determine these choices involving end-of-life care.

In order to help us understand these experiences and challenges, we invite you to complete an anonymous on-line survey. The survey includes questions about your age and background, your family history, and your attitudes, beliefs, and concerns about current management and end of life choices in late stage HD. The survey contains questions about your opinions concerning issues that may be difficult for some respondents to think about or answer.

Your participation is voluntary and you may quit the survey at any time without any negative consequences. We will analyze the responses to this survey in order to better understand your values, beliefs and opinions. We intend to share the results of the analysis with the greater HD community. The survey will take 15-20 minutes to complete. We thank you for your participation and time. If you have any questions about the survey, you may contact Dr. Dayananthan at (916) 734-3588.

To take survey please visit-



UC Davis Medical Center, Sacramento, California
Dr. Joshua Dayananthan
Dr. Vicki Wheelock

California State University, Stanislaus, California
Ms. Megan Heeren

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