BILL ANALYSIS Ó ABX2 15 Page 1 Date of Hearing: September 4, 2015 ASSEMBLY COMMITTEE ON FINANCE Shirley Weber, Chair ABX2 15 (Eggman) - As Amended September 3, 2015 SUBJECT: End of life. SUMMARY: Enacts the End of Life Option Act allowing an adult diagnosed with a terminal disease, and with the capacity to make medical decisions, to receive a prescription for an aid-in-dying drug to end his or her life in a humane and dignified manner. Specifically, this bill (among many additional provisions): 1)Defines a qualified individual as an adult who has the capacity to make medical decisions, is a resident of California, and has satisfied all of the requirements of these provisions in order to obtain a prescription for a drug to end his or her life. 2)Requires an individual requesting an aid-in-dying drug to have done so voluntarily. 3)Allows a request for a prescription for an aid-in-dying drug to be made only by the individual diagnosed with the terminal disease, not by others on behalf of the individual, including prohibiting requests through a power of attorney, an advance health care directive, a conservator, health care agent, ABX2 15 Page 2 surrogate, or any other legally recognized health care decision maker. 4)Specifies that a person will not be qualified to obtain an aid-in-dying drug solely because of age or disability. 5)Requires an individual requesting a prescription for an aid-in-dying drug to submit two oral requests, a minimum of 15 days apart, and a written request, and for the attending physician to personally receive all three requests. Requires written requests to be signed and dated by the individual in the presence of two witnesses who must attest to the best of their knowledge and belief that the individual is personally known to them or has provided proof of identity, is of sound mind, and not under duress, fraud, or undue influence. 6)Prohibits the attending physician, consulting physician, or the mental health specialist of the requesting individual from being a witness on the written request. 7)Allows only one of the witnesses to be related to the individual by blood, marriage, registered domestic partnership, or adoption or be entitled to a portion of the individual's estate upon death, and only one of the witnesses to own, operate, or be employed at a health care facility where the individual is receiving medical treatment or resides. 8)Specifies that at any time an individual may withdraw or rescind his or her request for an aid-in-dying drug, or decide not to ingest an aid-in-dying drug, without regard to their mental state. ABX2 15 Page 3 9)Prohibits an attending physician from writing a prescription for an aid-in-dying drug without first personally offering the individual an opportunity to withdraw or rescind the request. EXISTING LAW: Requires a health care provider, who makes a diagnosis that a patient has a terminal illness, to notify the patient of his or her right to comprehensive information, as specified, and counseling regarding legal end-of-life options. Requires a health care provider who does not wish to provide the specified information to refer or transfer a patient to another health care provider who will provide this information. FISCAL EFFECT: Department of Health Care Services Potential minor costs and savings in Medi-Cal based on the Medi-Cal program choosing to cover this end-of-life option (General Fund (GF)). Department of Public Health The Department of Public Health (DPH) would incur one-time GF costs of $90,000 for information technology services, and ongoing GF costs in the range of $250,000. DPH anticipates that a secure drive with password protection ABX2 15 Page 4 would be needed to store the confidential data collected pursuant to this bill, and would require an SQL database to perform data collection and storage. DPH states that a database could be developed with one-time development costs of approximately $88,000, and ongoing yearly maintenance by Information Technology Services Division (ITSD) of approximately $10,000 per year, as shown in the chart below. ---------------------------------------------------------------- |Database Development Task |Hours |Cost | |-----------------------------------------+---------+------------| |Application Development | | | |-----------------------------------------+---------+------------| | Requirements Specifications |267 |$16,000 | |-----------------------------------------+---------+------------| | Design/Test Plan |133 |$8,000 | |-----------------------------------------+---------+------------| | System Development / Code & |800 |$48,000 | | Test | | | |-----------------------------------------+---------+------------| | Acceptance Testing/User |133 |$8,000 | | Training | | | |-----------------------------------------+---------+------------| | Initial Internet/SQL DBA |133 |$8,000 | | setup | | | |-----------------------------------------+---------+------------| | | | | |-----------------------------------------+---------+------------| |Total One-Time Cost |1466 |$88,000 | |-----------------------------------------+---------+------------| |Ongoing yearly maintenance ($845 x 12) |14/mo |$10,140 | ---------------------------------------------------------------- Additionally, once the database is established, DPH estimates ABX2 15 Page 5 that two full-time positions would be required to perform confidential program and reporting duties outlined in this bill, with duties including: Collect data, enter reports received, collect forms, track program utilization and associated deaths; Follow-up with providers that submit incomplete reports; Perform data analysis, cross-check decedent deaths with list of prescribed participants, and draft annual reports; Prepare the annual report mandated by the bill; Maintain program information on the public website, and respond to inquiries regarding program policy; and Update website as needed, and make reporting forms available for download online. ABX2 15 Page 6 Summary of Total Cost to DPH ------------------------------------------------------------ | Total Budget Year Cost |Total Cost Budget Year + 1 | |--------------------------------+---------------------------| | $323,087 |$245,227 | | | | | | | | | | ------------------------------------------------------------ Department of Managed Health Care Due to the sensitive and controversial nature of aid-in-dying medication, the Department of Managed Health Care (DMHC) anticipates a high level of public interest, which will result in Public Records Act (PRA) or Information Practices Act (IPA) requests during the first three years. The Office of Legal Services (OLS) anticipates PRA/IPA requests regarding which health plans that cover aid-in-dying medications and under what terms the medications are covered, as well as information on relevant policy decisions, enforcement policies, and consumer grievances. OLS estimates that these tasks will have no cost in the current fiscal year, $276,000 (Managed Care Fund (MCF)) and 2.0 positions in the 2015-16 fiscal year, and $244,000 MCF and 2.0 positions each in the 2016-17 and 2017-18 fiscal years. OLS does not anticipate ongoing costs after the 2017-18 fiscal year. The Help Center, Office of Administrative Services, Office of Technology and Innovation, Office of Enforcement, Office of Plan Licensing, Division of Plan Surveys, and Office of Financial ABX2 15 Page 7 Review anticipate absorbable workload that will have no significant fiscal impact on those programs. Medical Board of California Minor costs to the Medical Board to update several of the forms required by this bill as deemed necessary (Contingent Fund of the Medical Board of California). Board of Pharmacy Minor costs to the Board of Pharmacy. The Board would not need to amend or adopt any regulations. The Board estimates that any additional enforcement actions due to this bill would result in minor costs (Pharmacy Fund). COMMENTS: PURPOSE OF THIS BILL. According to the author, this bill would allow an adult in California with a terminal disease who has the capacity to make medical decisions, and who has been given a prognosis of less than six months to live, to make end of life decisions. The author states by giving these patients the legal right to ask for and receive an aid-in-dying prescription from his/her physician, this bill would provide one more option to the number of options one has when faced with the end of their life. The author notes this bill includes strong provisions to safeguard patients from coercion and to allow voluntary participation by physicians, pharmacists, and health care facilities, and that this medical practice is already recognized in five other states. The author contends there is substantial evidence from those states that prove this law can be used safely and effectively. ABX2 15 Page 8 BACKGROUND. Five states have authorized what is referred to as Death with Dignity, Aid-in-Dying or Assisted Suicide. Oregon and Washington enacted their legislation through voter initiatives that took effect in 1997 and 2009, respectively. Vermont enacted legislation in 2013. In Montana and New Mexico, the courts have effectively authorized doctors to engage in the practice. Belgium, the Netherlands, Luxembourg, and Switzerland all allow for physician aid-in-dying, and next year Canada will implement the practice as well. COST AND COVERAGE. This bill does not mandate coverage of the aid-in-dying medication. Individual insurers will determine whether or not to participate. However, federal funding cannot be used for services rendered under the End of Life Options Act. The Oregon Medicaid program, which is paid for in part with federal funds, ensures that these costs are covered only with state funds. According to Compassion & Choices (C&C), the current approximate cost of the medication in Oregon is $1,500 per prescription. California's Medi-Cal program could choose to cover these drugs for this purpose, using state-only funds. Staff notes if Medi-Cal were to choose not to cover this but other health insurers did, it could create unequal access to this end-of-life option based on economic status. SUPPORT. C&C supports this bill, stating it will improve the quality of end-of-life care for terminally ill Californians and their families, while protecting physicians who care for them. C&C writes they want people to be free to choose how they live - and when the time comes, how they die. They contend that all ABX2 15 Page 9 Californians should have the option, in consultation with their families and doctors, to make the end-of-life decisions that are right for them in the final stages of a terminal illness. Numerous other organizations support this bill because they value autonomy in making fundamental life decisions. These organizations also applaud the many patient protections in the bill, including provisions which make it a felony to coerce someone to request an aid-in-dying prescription. OPPOSITION. There is a broad coalition of opposition to this bill, including, Disability Rights Education & Defense Fund (DREDF), Silicon Valley Independent Living Center, and The ARC California, who all state physician-assisted suicide is bad for Californians, particularly those with low incomes who may lack adequate access to health care, including mental health services. These organizations contend this bill will have a devastating impact on the treatment of terminally ill and disabled patients, stating that if assisted suicide is made legal it quickly becomes just another treatment option, always being the cheapest, and therefore, eventually the treatment of choice. The Association of Northern California Oncologists states they oppose this bill for several specific reasons-first, they note it is contrary to a physician's oath and primary responsibility to do no harm. Secondly, legalizing physician-assisted suicide undermines the valuable and overwhelmingly successful work of their hospice and pain and palliative care colleagues. Finally, they state the legislation is based on a common misunderstanding that it is easy to determine when a patient is terminal, noting that despite a physician's prognosis, many patients outlive terminal diagnoses. ABX2 15 Page 10 Opponents to this bill also make the following arguments: This option could be used as a form of elder abuse by an heir or abusive caregiver who stands to gain economically or otherwise by the hastened death of the patient, particularly in the absence of a required witness to the death. Coercion and inappropriate approval of this option could occur, and has in Oregon (according to the opposition), by way of: "doctor shopping," ignoring histories of depression, psychiatric disabilities, dementia or other developmental disabilities, and economic pressures of the patient, relatives or caregivers. Legalizing suicide, even for a narrow set of circumstances, can have a contagious effect, sending the message to the general public that suicide is justified and appropriate in certain situations, thereby leading to increasing rates of suicide in the general population. Opponents cite evidence of a substantial increase in the suicide rate in Oregon in the general population since passage of the assisted suicide law in that state. Opponents state that the data from Oregon is woefully inadequate and do not prove the safety of this law in that state. Specifically, the Disability Rights Education and Defense Fund states that available data is quite minimal and there is no oversight, investigation of abuse, enforcement, penalties for non-compliance, nor monitoring. ABX2 15 Page 11 REGISTERED SUPPORT / OPPOSITION: Support AIDS Healthcare Foundation The American Nurses Association California Church IMPACT California Psychological Association Cardinal Point at Mariner Square Residents' Association The City of Cathedral City The City of Santa Barbara The City of Santa Cruz The Community Church of California City Compassion & Choices CA ABX2 15 Page 12 County of Santa Cruz Board of Supervisors Death with Dignity National Center Democratic Women of Monterey County Democratic Women of Santa Barbra Equality California Five Counties Council Labor Council Full Circle Living and Dying Collective, Western Nevada County, CA GLMA Health Professionals Advancing LGBT Equality Gray Panthers The Humboldt and Del Notre Counties Central Labor Commission The Libertarian Party of Orange County Los Angeles LGBT Center The Mar Vista Community Council ABX2 15 Page 13 The National Association of Social Workers, California Chapter (NASW-CA) The National Center for Lesbian Rights The National Council of Jewish Women People of Faith for Justice Potrero Hill Democratic Club Progressive Christians Uniting San Benito County Democratic Central Committee San Francisco AIDS Foundation San Mateo County Democracy for America The San Mateo County Democratic Party Santa Barbara County Board of Supervisors Sacramento Central Labor Council AFL-CIO Seal Beach Leisure World Democratic Club ABX2 15 Page 14 The Sierra County Democratic Central Committee Shasta County Citizens for Democracy The South Orange County Democratic Club The Tehachapi Mountain Democratic Club The Unitarian Universalist Church of the Desert The Unitarian Universalist Church of the Verdugo Hills Ventura County Board of Supervisors Visalia Democratic Club West Hollywood United Church of Christ Opposition Alliance of Catholic Health Care American Disabled For Attendant Programs ABX2 15 Page 15 Association of Northern California Oncologists Autistic Self Advocacy Network California Disability Alliance California Foundation for Independent Living Centers Disability Rights California Disability Rights Education & Defense Fund Not Dead Yet Silicon Valley Independent Living Center United African American Ministerial Action Council Several Physicians and Other Individuals Analysis Prepared by:Andrea Margolis / FINANCE /916-319-2099 ABX2 15 Page 16