VT Digger: Walkerman & Callinan: Empowering patients at the end of life — S.74

March 30, 2022

Read the article on vtdigger.org

This commentary is by Betsy Walkerman of Underhill, president of Patient Choices Vermont, and Kim Callinan, CEO of Oregon-based Compassion and Choices.

In January, Willem Jewett, former majority leader of the Vermont House, contacted Patient Choices Vermont because he wanted to express his strong convictions about the importance of passing Senate Bill 74 to improve access to Vermont’s Act 39, our medical aid-in-dying law.

Jewett was in the late stages of terminal cancer and preparing to use Act 39, the law he worked so hard to pass. It is a tribute to his commitment to public service that he chose to take time, literally in his final days, to speak with VTDigger about his experience.

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Referring to Act 39, Jewett stated: “At the end of the day, the patient needs to really have control. I’m proud of this one.” (Willem’s video: https://www.patientchoices.org/videos.html,)

Karen Oelschlaeger was another of the many Vermonters who express deep gratitude that we are one of 10 states, plus Washington, D.C., that empower terminally ill people with the option of medical aid in dying. At the age of 37, Karen was dying from stomach cancer.

She and all of the 116 people who the Vermont Department of Health reports as having qualified so far for medical aid in dying were diagnosed by two doctors as having a terminal illness with six months or less to live, deemed capable of making their own medical decisions, and deemed able to self-administer the medication.

When we interview people like Karen Oelschlaeger, we are struck by the careful consideration they have given to their decisions. Act 39’s rigorous standards have successfully assured that medical aid in dying is available only to competent, qualifying individuals. Time has shown, however, that certain features of the law have the unintended consequence of preventing some people who are otherwise eligible from being able to use it. It is nothing less than tragic that the law creates hurdles that at times are literally torturous for dying people and their families.

Karen Oelschlaeger: “It is hard when you are dying, hospitalized and grieving from this major loss to go through the logistics of (the Act 39 process). It felt like a really, really long time to get through that process. By the time I was talking to the physician, I had thought about it for literally years.” (Karen’s video: https://www.patientchoices.org/videos.html.)

Senate Bill 74, which passed the Senate in January 2022, would make proper use of the law less onerous for dying people. It maintains the strong safeguards while removing unnecessary barriers.

S.74 makes three changes.

  • Telemedicine: S.74 would allow for the patient’s two oral requests required by Act 39 to be made by video telemedicine. Telemedicine would provide great relief to dying patients, many of whom are in pain or have difficulty moving. It would also provide better access to physicians in areas of the state where there are few available.

“I had to physically go and get myself in front of this doctor, which is rough when you are dying. Removal of that requirement (to be in the doctor’s physical presence) would be a huge relief.” — Karen Oelschlaeger.

  • Legal immunity: S.74 would fix a technical error in Act 39, which currently provides explicit legal immunity only for the doctors involved in the process. Because of this defect, the principal pharmacist who fills Act 39 prescriptions requires doctors to sign indemnification agreements prior to filling prescriptions for their patients. Many doctors refuse to sign.

As Dr. Diana Barnard testified before the Senate Health and Welfare Committee in January, she recently had a patient from southern Vermont who had to see a doctor almost two hours away because of this deficiency in the law. Due to all the logistics, the patient missed the window when she could take the medication and her family is haunted by her suffering and lack of access to the aid in dying she had requested.

  • Timeline: S.74 would adjust the steps required to get a prescription. The amendment keeps the mandated 15-day period between the two oral requests but removes an unnecessary and burdensome additional 48-hour delay after the last step in the process, before a prescription can be written.

While 48 hours may not seem like much, for people like Dee Allen, it bordered on preventing her from dying the way she wanted when she was suffering from a rapidly degenerative neurological disease.

“Those 48 hours were a nightmare. Just the sheer emotional toll it took on my mother was so painful to watch,” said Duncan Allen-Burns, son of Dee Allen (Dee Allen’s video: https://www.patientchoices.org/videos.html),

Medical aid in dying is an important and powerful option in the spectrum of compassionate care toward the end of life. S.74 would alleviate some of the pain and suffering endured by Vermonters who are severely ill and trying to avail themselves of the option of medical aid in dying.

“I couldn’t be more behind her decision, and that’s coming from a place of pure love. We really appreciate the work that you are doing. We’re very thankful our mom was in a state where she got to choose the way she went out,” said Duncan Allen-Burns.

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