ALS Patients Struggle With Death With Dignity Requirements

By Julie Sabatier (OPB)
Sept. 18, 2015 5:48 p.m.

Summer Whisman was diagnosed with amyotrophic lateral sclerosis (ALS) three years ago at age 32. Since then, the degenerative neurological disease has robbed her of her ability to do a lot of things for herself, including walking, eating, and talking. She communicates using a computer that reads the movements of her eyes.

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Whisman told OPB's Think Out Loud that she has decided to use Washington's Death with Dignity law. It's identical to the law in Oregon, which allows terminally ill patients to obtain medication to end their own lives. Whisman faces some particular challenges when it comes to satisfying one particular requirement.

"In order to comply to the law, I have to be able to administer the drugs myself. This obviously poses a great challenge because I can't use my hands or even drink from a straw."

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Compassion and Choices works with people like Whisman who want to use the Death with Dignity law to end their own lives. According to Matt Whitaker, the organization's Oregon state director, one option is for patients to ingest the medication through a feeding tube.

"As long as a person is able to stop and start the process themselves, then it's considered self-administering," said Whitaker.

He went on to say that even someone who has lost the use of her hands can self-administer.

"There are people who are able to use other body parts to depress the plunger of a feeding tube," Whitaker explained. "Each situation is unique and has specific challenges."

Whitaker says loss of physical abilities isn't the only obstacle for people who want to access life-ending medication through the law.

"The biggest barrier for anyone who's wanting to use Death with Dignity is lack of information and lack of time," he said.

The California legislature just passed a law very similar to the Death with Dignity laws in Oregon and Washington, though it's unclear whether Governor Jerry Brown will sign it.

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