Creating a Patient-Centered Way to Die

Written by Helen Whelan

by Helen Whelan

It seems all my friends are grappling with how to help their elderly parents as they age. It's the end of life, when they get dementia or some horrible physical illness, that is the hardest.elderly care

I know because my mom died of dementia. This is probably the most insipid disease because of it's long, incrutiatingly slow decline. My mom was not able to speak. She was highly anxious and it was very hard to know what she wanted or needed. Health care aides were on hand to help with her every need: moving her so she didn't get bed sores, helping her eat, dressing her, cleaning her.  But, in all of this, we really didn't know what she needed.

As a long time entrepreneur, I look to that community to cure or, at the least, solve the very vexing problem of how to help people die -- from the patient's point of view. To that end, I recently saw a call out to patients to have their voices heard in a one day health care symposium:

The call for health care design that puts the patient at the center is growing ever louder. The End Well Symposium is dedicated to giving this perspective a voice with a first of its kind gathering of design, tech, health care, policy, arts and education worlds with the goal of generating interdisciplinary innovation for the end of life experience that is human-centered.

This group is also offering fellowships to patients to help them attend the conference in December in San Francisco. The application to be a fellow has to be submitted by August 7th. 

These ePatients will have a demonstrated history of community involvement — whether their community is defined locally or online — and a desire to educate and learn from others regarding our relationship to living and dying.

Bravo to Shoshana Ungerleider, MD and her father, Steven Ungerleider, PhD for creating this symposium. I hope it's the start of many. They couldn't come soon enough.

Helen Whelan is an entrepreneur and co-founder of Success Television. She is the proud daugher of Helen Suki Whelan who died February 26th, 2017.

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