Leading Advocacy Group for California Medical Aid-in-Dying Law Suggests Eliminating Barriers Preventing Terminally Ill Adults from Using Law
Oversight Hearing Also Features Testimony by Family of Loved Ones Who Benefitted from Law and Had Trouble Using It
February 25, 2020
The leading advocacy group for passing California’s 2015 medical aid-in-dying law told lawmakers at an oversight hearing Tuesday that the law is helping terminally ill Californians who are able to access the law to peacefully end their suffering. But the president and CEO of Compassion & Choices Action Network suggested ways to amend it because she testified “many eligible patients are unable to use the law.”
The End of Life Option Act, authored by the chair of the California Assembly Select Committee on End of Life Health Care, Susan Talamantes Eggman, gives mentally capable, terminally ill adults with six months or less to live the option to request prescription medication they can decide to take to die peacefully in their sleep if their suffering becomes intolerable.
Washington, D.C., and nine states representing more than one in five U.S. residents (22%) have 40+ years of collective experience with this end-of-life care option: California, Colorado, Hawai‘i, Maine, Montana (via state Supreme Court ruling), New Jersey, Oregon, Vermont, and Washington.
“I see first-hand the positive impact this law has had on the lives of terminally ill Californians, and there has not been a single proven incidence of abuse, misuse or coercion,” testified Kim Callinan, president and CEO of Compassion & Choices and the Compassion & Choices Action Network, at the oversight hearing on the End of Life Option Act by the California Assembly Select Committee on End of Life Health Care. “California doctors are reporting that the law is spurring more candid conversations with their terminally ill patients about all end-of-life care options, higher hospice usage rates and improved palliative care training for physicians. Unfortunately, the consistent pattern across all the authorized jurisdictions, including California, is that many eligible patients are unable to use the law.”
“Doctors told [my husband] Chris [Davis] he had less than two weeks to live. That meant he would not survive the minimum 15-day waiting period between the first and second verbal requests for medical aid in dying that the End of Life Option Act requires,” testified Ontario resident Amanda Villegas. “Unfortunately my husband died exactly how he feared most: With tubes draining various bodily fluids that protruded his stomach, kidneys and chest. His swollen skin was bursting from the pressure of edema.”
Callinan cited a study by Kaiser Permanente Southern California showing that one-third of terminally ill adults who requested the option of medical aid in dying were unable to complete the time-consuming process.
“These concerning findings occurred in a health system with a supportive policy and patient navigators,” said Callinan. “Imagine the large numbers of patients who die suffering when they start in a fragmented or worse yet, an unsupportive system.”
Callinan suggested several legislative options to reduce regulatory roadblocks and improve access to the law — without compromising patient safety — that other states have already passed or are considering:
- Eliminate the 15-waiting period between requests for medical aid in dying or adopting the new Oregon law amendment that waives this waiting period if the patient is likely to die imminently;
- Reduce doctor reporting requirements, similar to those in Colorado and Vermont;
- Allow a person who is receiving hospice care because they have six months or less to live to obtain just one additional physician certification or allow advanced practice registered nurses and/or physician assistants to practice medical aid in dying, as several states are considering.
- Require hospitals and hospices to report their policies on medical aid in dying to the Department of Health, allowing patients to select healthcare systems with policies consistent with their values, similar to legislation advancing in Washington.
- Prohibit healthcare facilities that opt out of the practice of medical aid in dying from implementing gag orders designed to silence discussion about this end-of-life care option between their healthcare providers and patients, like the provision in a pending Delaware law.
Since the End of Life Option Act went into effect June 9, 2016 through December 31, 2018, 1,108 people have received prescriptions for medical aid in dying and 807 people (72.8%) have died from ingesting the aid-in-dying medication, according to the California Department of Public Health.
“My mother…died peacefully, held by loved ones, thanks to the End of Life Option Act. But accessing this compassionate law was not easy,” testified Grass Valley resident Bonnie McKeegan, whose mother, Pamela Harris, had metastatic breast cancer and used medical aid in dying to end her suffering. “Sadly, her oncologist declined to write the prescription and referred her to a primary care physician within the same health care system. But it was an hour away. No one should have to go through the anxiety and stress we all had to endure due to burdensome regulatory requirements.”
“Soon after starting the process to request the medication to die peacefully, doctors urged [my husband] Larry to participate in a clinical trial for individuals with stage IV bowel cancer…after only one treatment Larry developed a fistula, which disqualified him from continuing in the clinical trial. Larry was in an incredible amount of pain,” said Orangevale resident Sharon Fells, whose husband used medical aid in dying to end his suffering. “During his hospitalization, my husband developed flesh-eating bacteria. I’m glad he was ultimately able to use the medication, but wish the process had not been so cumbersome.”
Three in four Californians (75%) support the End of Life Option Act, according to an October 2019 poll by the California Health Care Foundation, including a majority of every demographic group surveyed, including: Latinos (68%), Blacks (70%); Asians (76%), and Whites (82%).
“Having this law is meaningful to me because it supports my own beliefs and passions in medicine and a lot of why I went into the field of palliative care,” said Dr. Purvi Patel, a palliative care physician in the Inland Empire. ”There are so many times in medicine, working with patients who have chronic and debilitating illness, where we run out of medical treatment options. Rather than having these patients continue to decline, afraid of losing dignity or autonomy, afraid of suffering, this law allows them to choose to end their life before their disease will. We emphasize living a good life and having a good quality of life, and I feel the same should be true when we treat the end of life.”
“As a minister, I sit bedside with people at the end of their lives and I have watched too many terminally ill Californians suffer needlessly while dying. As a religious leader, I am concerned about the hurdles we heard about today that make it difficult for dying people to use this compassionate law to die peacefully,” testified Rev. Madison Shockley, pastor at Pilgrim United Church of Christ in Carlsbad and a member of Compassion & Choices African American Leadership Council and first vice chair of its board of directors. “People of color need better access to all end-of-life care options, including medical aid in dying.”