The Right to Try Act, designed to give patients with life-threatening illnesses access to experimental therapies, could delay referrals of pediatric cancer patients to palliative care, according to a viewpoint appearing in the Journal of the American Medical Association-Oncology.
“When pediatric oncologists perceive that patients and families want to ‘do everything,’ even broaching the idea of a palliative care consultation becomes challenging,” wrote Ashley F. Lanzel, M.D., a hematology and oncology fellow at Emory University, and James V. Lavery, Ph.D., chair of global health ethics, also at Emery. “It seems reasonable to be concerned that a general increase in cure-seeking behavior would likely exacerbate rather than improve the timeliness of palliative care referrals in pediatric oncology.”
President Trump signed the Right to Try Act into law on May 30, 2018. The law allows patients with life-threatening illnesses to access certain treatments that have not been approved by the U.S. Food and Drug Administration, provided the patient has tried all approved treatment options and is unable to participate in a clinical trial.
The impetus for the law was a perception that regulation and cautious research protocols delay access to potentially life-saving therapies, according to Lanzel and Lavery. However, the authors postulated, it could have the unintended consequence of exposing children to intensive treatments that delay their admission to palliative care.
This commentary comes at a time when palliative care providers, hospice organizations, and other health care stakeholders are advocating for earlier referrals.
“Nearly 30 percent of Medicare beneficiaries have hospice care for less than seven days— far too short a period to benefit from the skills of the hospice interdisciplinary team. Most people never get palliative care pre-hospice,” National Hospice and Palliative Care Organization President Edo Banach said in a recent statement. “People need earlier access to hospice and they need access to pre-hospice palliative care.”
While the JAMA-Oncology authors’ commentary focused on pediatric care, they also noted similar risks for adult patients.
“This could bolster attitudes within patient, family, and cancer care support communities (including those on social media) to pursue cures that could make discussion about palliative care seem discouraging or defeatist,” Lanzel and Lavery wrote.