By Chris Haring
Medical aid-in-dying advocates testified in opposition to a proposed telemedicine restriction at a mid-week DEA public listening session.
In the ever-evolving landscape of end-of-life care and healthcare access at the end of life, a crucial issue at the intersection of compassion and autonomy is accessibility.
When the COVID-19 pandemic emerged in early 2020, the DEA (Drug Enforcement Administration) loosened many provisions within its telemedicine guidelines to allow folks to receive healthcare, including prescriptions for pain and disease management for folks with terminal illnesses, many of whom are immobile or live in rural areas without being seen in person.
However, with the termination of the COVID public health emergency declaration earlier this year, the agency proposed a rollback of these provisions, which could have profound implications for patients with terminal illnesses across the United States.
In response, news of this potential change triggered numerous concerns from advocates, healthcare professionals, and patients alike. Death with Dignity, along with coalition partners the Completed Life Initiative and the American Clinician’s Academy on Medical Aid in Dying, led a robust campaign to encourage its supporters to speak up and share their thoughts with the agency ahead of its decision.
The outpouring of pro-telemedicine sentiment was unprecedented: “We received over 38,000 public comments in response to those proposed regulations, and we read every single one,” DEA Administrator Anne Milgram said. She added, “We believe that it is among the highest number of comments we have gotten in [our] history.”
After evaluating the comments, she said the DEA “wanted to reopen this conversation.” Hence, the agency granted a temporary six-month extension of the loosened provisions, which expires on Oct. 31, and scheduled a public listening session for Sept. 12-13.
Many of the voices that emerged during the session echoed the concerns submitted earlier this year.
One such advocate was the Completed Life Initiative’s David Hoffman, JD – an assistant professor of bioethics at Columbia University. He explained how a lack of access to a healthcare provider can be a formidable obstacle for patients with terminal illnesses, as geographic limitations and physical constraints can make in-person visits arduous and sometimes impossible.
Although he acknowledged concerns about prescribing non-curative pain management to patients remotely, Hoffman argued that these should not take precedence over relieving suffering for patients with terminal illnesses. “The solution should not come at the expense of patients who want to squeeze out every possible moment of the end of their lives,” he said.
Another expert, New Jersey end-of-life physician Dr. Robin Plumer, who was part of the team that took our messages straight to DEA headquarters in March, delivered 10,000 letters from concerned advocates – nearly a quarter of the number of submissions overall. Dr. Plumer shared a touching story about a bed-bound former patient whose condition would have prevented him from receiving care under the proposed provisions.
Other notable support came from U.S. Sens. Mark R. Warner (D-VA) and John Thune (R-SD), who sent a letter supporting extending telehealth flexibilities. Although the bipartisan statement, co-signed by Sens. Catherine Cortez Masto (D-NV), Shelley Moore Capito (R-WV), Sheldon Whitehouse (D-RI), and Dan Sullivan (R-AK), does not mention patients living with terminal illnesses specifically, the Senators do “urge the DEA to consider feedback from health care stakeholders and apply the lessons learned from the COVID-19 pandemic.”
Additionally, these concerns were parallelled by American Medical Association President Jesse Ehrenfeld, who said “A telemedicine prescription can help ensure that the patient receives timely therapy without delay, including for patients with chronic medical conditions, cancer, in hospice, those living in remote or underserved areas, or other situations.”
Ultimately, although we believe the public showed overwhelming support, there has yet to be an official word on when to expect a final decision, and the temporary six-month extension expires in November. Therefore, as we hope the DEA strongly considers our collective voices, we must remain vigilant, organized, and committed to preserving autonomy and access to all healthcare options, including Death with Dignity, for all patients with terminal illnesses who seek it. Please, share this information with others as we await new updates from the DEA.