An increasing number of states are considering legislation that would permit medical aid in dying for terminally ill patients. California’s own “End of Life Option Act” went into effect on June 9, but many are still unsure as to how exactly the law will operate, and more specifically, how it will affect healthcare service providers.
A closer look at the nation’s oldest aid in dying legislation, Oregon’s 1997 Death With Dignity Act (DWDA), with nearly a decade’s worth of data, will provide insight into what is expected to occur in the Golden State.
Similar legislation, similar projections
California’s Department of Health Care Services, in its 2015 Medi-Cal Estimate report, states that California’s “End of Life Option Act,” is “virtually identical in language as well as scope” to Oregon’s own medical aid in dying legislation. Subsequently, the state expects to see trends of utilization mirroring data from Oregon.
The similarity is largely due to the work of Compassion & Choices, a nonprofit organization dedicated to expanding and improving end-of-life care options, including medical aid in dying. It was instrumental in constructing Oregon’s DWDA, which later became a model for other states with aid in dying legislation, including Washington, Vermont, and Montana.
Matt Whitaker, Compassion & Choices’ Multi-State Implementation Manager and former Oregon State Director, worked with California lawmakers in implementing their legislation. He told Healthcare Dive projections of participation in the state are based off of statistics from the DWDA in Oregon.
“In taking the data and experience we’ve had in Oregon and extrapolating that out to California, we expect that in the first year that the law is implemented, around 1,500 people will receive a prescription,” said Whitaker.
He added in Oregon for every one prescription there were about twenty-five people who asked their physician whether the DWDA would be a good option for them. Though, in the overwhelming majority of those cases, the patient decided to go down another path. Therefore, Whitaker says he expects to see about 34,000 people having a conversation about medical aid in dying, with 1,500 actually receiving prescriptions in California.
Oregon’s DWDA requires the state to collect data on the number and types of patients that are requesting prescriptions and ingesting death hastening drugs. The statistics show that since 1997, a total of 1,545 people had requested prescriptions, with 991 of those patients dying from ingesting the medication. The average annual rate of increase in prescriptions was about 12.1% between 1997 and 2013, and that increased to 24.4% between 2014 and 2015.
Tapping into California’s healthcare opportunities
Like Oregon’s DWDA, California’s medical aid in dying legislation is a permissive law that is completely voluntary on the part of patients, physicians, healthcare service providers, and insurers.
Ann Jackson, former executive director and chief executive officer of the Oregon Hospice Association, acted as a spokesperson for the DWDA. She says the biggest challenge with providing medical aid in dying as an end of life care option is accessibility.
“Healthcare providers are supposed to meet the needs of patients, and that seems to be more difficult with this issue,” she said. “It can be difficult for a doctor to decide to participate.” The primary reasons for not participating, she said, are political and social, rather than logistical.
California, however, has seen a vast majority of healthcare service providers deciding to come on board. Whitaker says that while extending coverage in California presents some challenges -- different demographics from other states and the need for strong education within the medical community on the act -- the state also presents some opportunities in moving forward.
"There are health systems in California that have said, for this first bit, we are going to opt out...but, I will say that there are opportunities in California, many of these very large healthcare systems, like Kaiser, Sutter, and the UC system hospitals, already said from the beginning that they would allow their physicians to participate and support their patients fully,” he said.
“When a large system like that comes on board, it is ensuring access for millions of people across the state,” he added.
In its first year of implementation, DWDA saw 14 physicians writing prescriptions for patients that wanted death hastening drugs. Last year, the number of physicians reached total of 106 physicians for 218 prescriptions, averaging anywhere from one to 27 prescriptions per patient.
According to the Los Angeles Times, a number of California doctors have vocally questioned the End of Life Option Act, with even the California Medical Association deciding not to support the legislation. Catholic and church-affiliated hospitals in the state have opted out of participating.
Still, conversations, webinars, and training sessions are continuously being held among California doctors, so that they can learn about the practice as an option for end-of-life services. A June study from Stanford University Medical Center also shows there is positive support for the practice across all demographic, social, and religious identities in California.
“We tend to stick with the status quo rather than try to expand our fields of knowledge unless things become awful,” said Jackson. “I expect, it will be some time before a lot of physicians [in California] are willing to participate; but in general, there is more willingness.”
Due to the voluntary nature of the legislation, healthcare service providers will primarily be affected in being presented with a choice of whether or not to participate.
Patient prospects and protection
Like the DWDA, California’s End of Life Option Act requires an extensive reporting system to keep track of the number and types of patients that are deciding to participate.
Karen Hedberg, Oregon State Epidemiologist & State Health Officer, says the majority of the patients that decided to move forward with medical aid in dying had a form of terminal cancer or other terminal disease, such as Lou Gehrig’s or ALS, and had exhausted all other options.
She says that the data might be hard to predict in California due to demographic differences and the fact that the data is primarily on written prescriptions, not other factors. She says the reporting system can leave some questions unanswered. “The law in Oregon stops at the point that the prescription is written. Understanding what happens after is not spelled out in the law,” she said.
Whitaker says he expects to see the character profile of patients in California as being similar.
California’s legislation, like that of Oregon, requires a number of procedures before patients and physicians can move forward with the act. Though these steps are outlined in the statutes of the law, Whitaker offers some insight into just how much oversight there is.
He explained physicians have to go through a host of eligibility requirements to see if the patient does qualify for the medication. The patient has to be an adult with a terminal diagnosis and six months or less to live, possess the mental capacity to make the medical decisions, and know all his or her different healthcare options.
“After they go through that the patient has to wait 14 days and make the request again, as well as make the request in writing,” he said. “Then another physician has to concur that the first physician made a sufficient evaluation based on the same criteria. Only after these steps have been taken can the person receive the prescription.”
And, he confirms that the majority of times, the individuals that write the prescription for terminally ill patients to receive death hastening drugs are primary care physicians that have had long-term relationships with their patients and feel comfortable discussing the option with them.
Insurance, costs, and potential expenditures
“The costs are negligible. It’s more of a social and political issue, and my best guess is that most insurers are not covering the cost of the medication,” says Jackson.
As insurers get to decide whether or not they want to cover the cost of the medication, the number of private insurers in Oregon and projected private insurers in California is uncertain.
What is known is that Medicare and Medicaid will not cover the drugs. However, California’s state health plan Medi-Cal, like that of Oregon, will cover the medication for their consumers.
The costs to implement medical aid in dying, particularly with such low rates of utilization, will be negligible from both the healthcare service and insurance perspectives, according to Jackson. She noted Oregon’s data where over 90% of the patients that took the medication were in hospice care already.
“Most people who use the DWDA use it to stop prolonging death,” she said, adding, “While life is worth prolonging, [hospice care] is what most people will choose.”
The Department of Healthcare Services in California also confirms that costs for end of life services based on the 2015 Medi-Cal Estimate will also be negligible. The budget assumes that no more than 443 Medi-Cal eligible adults will request end of life services, for a total of only $2.33 million in expenditures. This estimate assumes that each of the beneficiaries would actually purchase the drugs, which cost around $5,000.
To critics of aid in dying legislation which claim that insurers might be incentivized to provide care for death hastening drugs instead of hospice or palliative care, Whitaker says insurers would actually be incentivized to do the opposite.
“We see more insurance plans not covering this for their patients because they are afraid of that perception,” he said. “In California, it’s great to see some healthcare providers and insurance plans very bravely step up from the beginning and say that they will cover this.”