“Those 48 hours were a nightmare. Just the sheer emotional toll it took on my mother was so painful to watch.” - Duncan Allen-Burns, son of Dee Allen, who used aid in dying in Dec., 2020
When we heard Duncan’s words, we were more convinced than ever that we have to work hard for patient-focused improvements to Act 39.
Duncan was referring to the mandatory 48-hour delay that all patients must endure after all other parts of the rigorous Act 39 approval process have been completed. The Act 39 process also requires that two separate requests to use Act 39 be made at least 15 days apart — in the physical presence of the doctor.
“I could not wait to get through that timeline. Removal of that [in-person] requirement would be a huge relief.” - Karen Oelschlaeger
Karen was 37 years old and dying from stomach cancer. You can hear the pain and frustration in her voice on the PCV video as she describes the arduous process of traveling to required appointments.
We’re on it. Let’s tune up Act 39.
At PCV’s urging, Senate Bill S.74 was introduced in February, 2021 to make three important improvements to the law:
— First S.74 would adjust the timeline to eliminate the final 48-hour delay.
This change would be a huge relief for people like Dee Allen. Dee’s health was deteriorating so quickly from a devastating neurological disease that she feared she would lose the ability to self-administer the medication while waiting the last 48 hours before the prescription could be written. As she expressed in her video on PCV’s website, this period seemed to have no purpose and caused needless suffering.
— Second, S.74 would enable people to make their Act 39 requests via telemedicine.
This change would remove a tremendous burden for people like Karen, for whom an hour-long ride to an appointment was a nightmarish experience.
—Third, S.74 would correct a technical deficiency in the immunity clause of Act 39.
Act 39 currently provides legal immunity only for doctors. Access to medical personnel and pharmacists would be more consistent and predictable if legal immunity were explicitly spelled out for everyone involved in the process.
When Act 39 was created, legislators placed great weight on preventing improper use of the law. The current process includes five qualification requirements, an eight-step process including certification by two doctors, and full documentation. (PatientChoices.org/act-39-overview) Now, with eight years of experience and zero reports of abuse, it’s time to listen to the people who the law is intended to serve and make proper use of the law less onerous for dying people. The next year will be critical for our work on S.74.
Patient Choices Vermont is the only Vermont organization focused on the rights of people who want the option of medical aid in dying.
Successful legislative work requires time, effort and, frankly, money.