BILL ANALYSIS Ó ----------------------------------------------------------------- |SENATE RULES COMMITTEE | SB 128| |Office of Senate Floor Analyses | | |(916) 651-1520 Fax: (916) | | |327-4478 | | ----------------------------------------------------------------- THIRD READING Bill No: SB 128 Author: Wolk (D) and Monning (D), et al. Amended: 6/1/15 Vote: 21 SENATE HEALTH COMMITTEE: 6-2, 3/25/15 AYES: Hernandez, Hall, Mitchell, Monning, Roth, Wolk NOES: Nguyen, Nielsen NO VOTE RECORDED: Pan SENATE JUDICIARY COMMITTEE: 5-2, 4/7/15 AYES: Jackson, Hertzberg, Leno, Monning, Wieckowski NOES: Vidak, Anderson SENATE APPROPRIATIONS COMMITTEE: 5-2, 5/28/15 AYES: Lara, Beall, Hill, Leyva, Mendoza NOES: Bates, Nielsen SUBJECT: End of life SOURCE: Author DIGEST: This bill permits a qualified adult with capacity to make medical decisions, who has been diagnosed with a terminal disease to receive a prescription for an aid in dying drug if certain conditions are met, such as two oral requests, a minimum of 15 days apart and a signed written request witnessed by two individuals is provided to his or her attending physician, the attending physician refers the patient to an independent, consulting physician to confirm diagnosis and capacity of the patient to make medical decisions, and the attending physician refers the patient for a mental health specialist assessment if there are indications of a mental disorder. This bill protects SB 128 Page 2 a person from civil, criminal, administrative, employment, or contractual liability, or professional disciplinary action, for participating in good faith compliance with this bill. This bill permits a person or entity that elects, for reasons of conscience, morality, or ethics, not to engage in activities authorized pursuant to this bill. This bill makes it a felony to knowingly alter or forge a request for a drug to end an individual's life without his or her authorization or concealing or destroying a withdrawal or a rescission of a request for an aid in dying drug if the act is done with the intent or effect of causing the individual's death. This bill makes it a felony to knowingly coerce or exert undue influence on an individual to request an aid in dying drug for the purpose of ending his or her life. Senate Floor Amendments of 6/1/15 revise the definition of "self-administer," and permit an interpreter to be present during the private discussion when the attending physician confirms that a qualified individual's request does not arise from coercion or undue influence by another person. Require the mental health specialist to examine the qualified individual and his or her relevant medical records; determine that the individual has mental capacity to make medication decisions, act voluntarily and make informed decisions; determine that the individual is not suffering from impaired judgment due to a mental disorder; and fulfill the record document requirements. Permit a person or entity that elects, for reasons of conscience, morality, or ethics, not to engage in activities authorized pursuant to this bill and states that a person is not required to take any action in support of an individual's decision under this bill. Protect a health care provider from civil, criminal, administrative, disciplinary, employment, credentialing, professional discipline, contractual liability or medical staff action, sanction, or penalty or other liability for refusing to participate in activities authorized under the End of Life Option Act, including but not limited to, refusing to inform a patient regarding his or her rights under the End of Life Option Act, and not referring an individual to a physician who participates in activities authorized under the End of Life SB 128 Page 3 Option Act. ANALYSIS: Existing law: 1) Establishes requirements on a health care provider when a provider makes a diagnosis that a patient has a terminal illness, including that the patient has a right to comprehensive information and counseling regarding legal end of life options. 2) Provides that a person who has the capacity to give informed consent to a proposed medical treatment also has the capacity to refuse consent to that treatment. 3) Makes it a felony to deliberately aid, or advise, or encourage another to commit suicide. This bill: 1) Permits a qualified individual with capacity to make medical decisions, as defined, who is an adult with a terminal disease diagnosis to make a request to receive a prescription for an aid in dying drug if all of the following conditions are satisfied: a) The attending physician has diagnosed the individual with a terminal disease; b) The individual has voluntarily expressed the wish to receive a prescription for an aid in dying drug; c) The individual is a resident of California and is able to establish residency, as specified; and d) The individual documents his or her request for an aid in dying drug, as specified. SB 128 Page 4 2) Prohibits a request for an aid in dying drug made on behalf of a patient through a power of attorney, an advance health care directive, or a conservator. 3) Requires a qualified individual wishing to receive a prescription for an aid in dying drug to submit two oral requests, a minimum of 15 days apart, and a witnessed written request, as specified, to his or her attending physician. 4) Requires at least two adult witnesses who attest that to the best of their knowledge and belief the individual has capacity to make medical decisions, is acting voluntarily, and is not being coerced to sign the request. 5) Permits an individual to rescind his or her request at any time without regard to the individual's mental state. 6) Requires the attending physician to: a) Make a determination that the requesting adult has capacity to make medical decisions, has a terminal disease diagnosis, has voluntarily made the request, and has the physical and mental ability to self-administer the aid in dying drug. b) Confirm that the individual is making an informed decision and inform the individual of feasible alternatives or additional treatment options including, but not limited to, comfort care, hospice care, palliative care, and pain control. c) Refer the individual to a consulting physician, (defined as a physician who is independent from the attending physician and qualified by specialty or experience to make a professional diagnosis and prognosis regarding the individual's disease), for medical confirmation of the diagnosis, prognosis, and for a determination that the individual has capacity to make medical decisions and has complied with this bill. d) Refer the individual for a mental health specialist SB 128 Page 5 assessment if there are indications of a mental disorder. e) Confirm that the individual's request does not arise from coercion or undue influence by another person by having the discussion outside the presence of any other persons. f) Fulfill the record documentation required by this bill, as specified. g) Complete the End of Life Option Act Checklist and include it in the individual's medical record. 7) Prohibits a request for a prescription for an aid in dying drug to be made on behalf of the patient, and requires an individual seeking to obtain a prescription for an aid in dying drug to submit all three requests directly to the attending physician and not through a designee. 8) Invalidates any provision in a contract, will or other agreement executed on or after January 1, 2016, whether written or oral, to the extent the provision would affect whether a person may make, withdraw, or rescind a request for an aid in dying drug. 9) Prohibits an insurance carrier from providing any information in communications made to an individual about the availability of an aid in dying drug absent a request. Prohibits any communication from including both the denial of treatment and information as to the availability of aid in dying drug coverage. 10)Requires participation in activities authorized pursuant to this bill to be voluntary. Permits a person or entity that elects, for reasons of conscience, morality, or ethics, not to engage in activities authorized pursuant to this bill, and provides that a person or entity is not required to take any action in support of a patient's decision under this bill, except as otherwise required by law. 11)Authorizes a health care provider to prohibit employees, independent contractors, or other persons or entities, from SB 128 Page 6 participating in activities under this bill while on premises owned or under the management or direct control of the health care provider, as specified. 12)Makes it a felony to knowingly alter or forge a request for medication to end an individual's life without his or her authorization or concealing or destroying a withdrawal or rescission of a request for an aid in dying drug if the act is done with the intent or effect of causing the individual's death. 13)Makes it a felony to knowingly coerce or exert undue influence on an individual to request an aid in dying drug for the purpose of ending his or her life or to destroy a withdrawal or rescission of a request. 14)Provides that nothing in this bill may be construed to authorize a physician or any other person to end an individual's life by lethal injection, mercy killing, or active euthanasia. Provides that actions taken in accordance with this bill shall not, for any purpose, constitute suicide, assisted suicide, homicide, or elder abuse under the law. 15)Requires the State Public Health Officer (PHO) to annually review a sample of medical records maintained as required under this bill and adopt regulations establishing reporting requirements for physicians and pharmacists to determine utilization and compliance with this bill. Requires the PHO to make available to health care providers the End of Life Option Act Checklist by posting it on its Internet Web site. Comments Author's statement. According to the authors, "the End of Life Option Act would give qualified, terminally ill patients in California, who have been given a prognosis of less than six months to live, the autonomy to exercise ultimate decision-making authority in end of life decisions. By giving these patients the legal right to ask for and receive a lethal prescription from his/her physician, SB 128 would provide one more option to the number of options one has when faced with the SB 128 Page 7 end of life. Furthermore, there are provisions to safeguard patients and to allow voluntary participation by physicians, pharmacists and healthcare facilities. This medical practice is already recognized in five other states. Terminally ill Californians should not have to leave the state in order to have a peaceful death. In the end, how each of us spends the end of our lives is a deeply personal decision. That decision should remain with the individual, as a matter of personal freedom and liberty, without criminalizing those who help to honor our wishes and ease our suffering." Other states. Montana, Oregon, Vermont, and Washington currently allow a person to request medication to end one's life. In January 2014, New Mexico's authorization was determined in Morris v. New Mexico, however the New Mexico Attorney General has appealed the district court's ruling. According to the Albuquerque Journal News, a decision is not expected for several months. Other countries. Belgium, the Netherlands, Luxembourg, Switzerland and, beginning in 2016 Canada, allow physician aid in dying. The Netherlands and Belgium also allow euthanasia (medication administered by a physician). Belgium extended its law in 2014 to include children of any age living with terminal illness. In the Netherlands, the law is not available to children under 12 years old and for teenagers, the law requires parental consent. Oregon data. According to the Oregon Public Health Division 2013 report, from 1998 to 2013, 1,173 were prescribed aid with dying medication and 752 deaths occurred as a result of ingesting prescribed medications. 90% of those who ingested the medication were enrolled in hospice. 63% had private insurance, 35% had Medicare, Medicaid or other governmental insurance, and less than 2% were uninsured (35 individuals had unknown status). Almost 80% of those who ingested the medication had malignant neoplasms, 7% had Amyotrophic lateral sclerosis, 5% had chronic lower respiratory disease, 2% had heart disease, 1% had HIV/AIDS and 6% had other illnesses. 6% of those who ingested the medication were referred for psychiatric evaluation. 94% informed their family of their decision. 95% died at home, 4% died in long-term care, and .1% died in the hospital. 91% of SB 128 Page 8 those who ingested the medication were concerned about loss of autonomy, 89% were concerned about being less able to engage in activities that make life enjoyable, 81% were concerned about loss of dignity, 50% were concerned about losing bodily function, 40% were concerned about being a burden on family, friends or caregivers, 23% were concerned about inadequate pain control, and 3% were concerned about financial implications of treatment. There were 22 complications of regurgitation reported and six individuals regained consciousness after ingesting the medications. A range of between 15 and 1,009 days elapsed from the first request for medication and death. Brittany Maynard. Brittany Maynard was a California native with a terminal brain cancer diagnosis who moved to Oregon to access its death with dignity law. Brittany Maynard died in Oregon after taking aid in dying drugs on November 1, 2014. In the final weeks of her life, Ms. Maynard partnered with Compassion and Choices to launch a campaign to make aid in dying an open and accessible medical practice in California and throughout the country. After moving to Oregon with her family, establishing the residency requirements, and finding new physicians, Ms. Maynard obtained aid in dying drugs. U.S. end of life care. A 2014 publication of the Institute of Medicine (IOM), called Dying in America: Improving quality and Honoring individual preferences near the end of life, identified persistent major gaps in care near the end of life that require urgent attention. Understanding and perceptions of death and dying vary considerably across the population and are influenced by culture, socioeconomic status, and education, as well as by misinformation and fear. Engaging people in defining their own values, goals, and preferences concerning care at the end of life and ensuring that their care team understands their wishes has proven remarkably elusive and challenging. While the clinical fields of hospice and palliative care have become more established, the number of specialists in these fields is too small, and too few clinicians in primary and specialty fields that entail caring for individuals with advanced serious illnesses are proficient in basic palliative care. Often, clinicians are reluctant to have honest and direct conversations with patients and families about end of life issues. Patients and families face additional difficulties presented by the SB 128 Page 9 health care system itself, which does not provide adequate financial or organizational support for the kinds of health care and social services that might truly make a difference to them. The IOM committee believes a patient-centered, family-oriented approach to care near the end of life should be a high national priority and that compassionate, affordable, and effective care for these patients is an achievable goal. Evidence of problems. An article published in the Michigan Law Review in June of 2008, referenced by opponents of this bill, examines the Oregon Death with Dignity Act, drawing from case studies and information provided by doctors, families and other care givers. The article concludes that seemingly reasonable safeguards for the care and protection of terminally ill patients written into the Oregon law are being circumvented. The article indicates that the Oregon Public Health Division does not collect the information it would need to effectively monitor the law. The article draws on six cases (four with independent information from more than one source, and one with information provided by an opponent of aid in dying and another with information provided by a proponent). Another document provided by the Disability Rights Education and Defense Fund describes a situation where a patient's caretaker was prosecuted by federal investigators for real estate fraud and mistreatment of the patient after his death by physician aid in dying. This document also describes a situation where a family member helped a patient take the medication rather than through self-administration. FISCAL EFFECT: Appropriation: No Fiscal Com.:YesLocal: Yes According to the Senate Appropriations Committee: 1)One-time costs of $265,000 over two years for the development of regulations by the Department of Public Health (DPH) (General Fund). 2)One-time costs of $90,000 and ongoing costs of $10,000 per year for DPH to develop and operate a secure computer system for tracking patients who have received an aid-in-dying prescription (General Fund). SB 128 Page 10 3)Ongoing costs of $235,000 per year for DPH staff to collect data, follow up on prescriptions with prescribing physicians, and prepare the required annual report (General Fund). 4)Ongoing costs of $275,000 per year for DPH staff to review a sample of the medical records of participating patients, to ensure compliance with the requirements of this bill (General Fund). 5)One-time costs of $600,000 over two year for the Department of Managed Health Care (DMHC) to develop policies, adopt regulations, and respond to public record requests (Managed Care Fund). This bill does not mandate coverage for aid-in-dying medication by health plans. However, because current law mandates coverage for pain management drugs, DMHC expects to develop regulations to clarify the responsibilities of health plans in this area. 6)Minor costs to the Medical Board: The Medical Board would not need to amend or adopt any regulations. The Medical Board estimates that any additional enforcement actions due to this bill would result in minor costs. 7)Minor costs to the Board of Pharmacy: The Board of Pharmacy would not need to amend or adopt any regulations. The Board of Pharmacy estimates that any additional enforcement actions due to this bill would result in minor costs. 8)Minor potential reduction in statewide health care spending (various funds). (See Senate Appropriations Committee analysis for further discussion). SUPPORT: (Verified5/28/15) Insurance Commissioner Dave Jones State Controller Betty Yee AIDS Healthcare Foundation AIDS Project Los Angeles Alameda County Board of Supervisors SB 128 Page 11 American Civil Liberties Union of California American Federation of State, County and Municipal Employees, AFL-CIO American Medical Student Association American Medical Women's Association American Nurses Association, California Bloom in the Desert Ministries United Church of Christ Brownie Mary Democratic Club California Church IMPACT California Primary Care Association California Psychological Association California Senior Legislature Camarillo Health Care District Cardinal Point at Mariner Square Residents' Association Cathedral City Cities of Los Angeles, San Jose, Santa Barbara, and West Hollywood Civil Rights for Seniors Coastside Democrats Compassion & Choices Conference of California Bar Associations Congress of California Seniors County of Santa Cruz Board of Supervisors Death with Dignity National Center Democratic Party of Orange County Democratic Party of Santa Barbara County Democratic Women of Monterey County Democratic Women of Santa Barbara County Democrats of Napa Valley Club Desert AIDS Project Desert Stonewall Democrats Equality California Ethical Culture Society of Silicon Valley Full Circle Living and Dying Collective GLMA: Health Professionals Advancing LGBT Equality Gray Panthers of Long Beach Hemlock Society of San Diego Honorable Dianne Feinstein, United States Senator I Care for Your Loved One Compassionate Senior Services Kings County Democratic Central Committee Laguna Woods Democratic Club Libertarian Party of Orange County SB 128 Page 12 Lompoc Valley Democratic Club Los Angeles LGBT Center Mar Vista Community Council Morongo Basin Democratic Club Napa County Democratic Central Committee National Association of Social Workers - California Chapter National Center for Lesbian Rights National Council of Jewish Women Older Women's League-San Francisco Planned Parenthood Progressive Democrats of America California Protrero Hill Democratic Club San Francisco AIDS Foundation San Francisco for Democracy San Mateo County Democracy for America San Mateo County Democratic Central Committee San Mateo County Medical Association Santa Barbara County Santa Cruz City Council Secular Coalition for California Shared Crossing Project Sierra County Democratic Party Sonoma County Democratic Party South Orange County Democratic Club Sun City Democrats Tam Nguyen, Councilmember, City of San Jose Trinity County Democratic Central Committee Trinity County Progressives Trinity United Methodist Church OPPOSITION: (Verified5/28/15) Access to Independence Agudath Israel of California Alliance of Catholic Health Care Arc, California Arroyo Grande Community Hospital, Dignity Health Affiliate Association of Northern California Oncologists Autistic Self Advocacy Network California Catholic Conference SB 128 Page 13 California Disability Alliance California Family Alliance California Foundation for Independent Living Centers California Nurses for Ethical Standards California Prolife Council California Right to Life Committee, Inc. Calvary Chapel Golden Springs Capitol Resource Institute Coalition of Concerned Medical Professionals Communities Actively Living Independent and Free Communities United In Defense of Olmstead Concerned Women for America Dignity Health Disability Action Center Disability Rights Education & Defense Fund Faith and Public Policy, Calvary Chapel Chino Hills Ministry FREED Center for Independent Living French Hospital Medical Center, Dignity Health Affiliate Independent Living Resource Center of San Francisco Independent Living Center of Southern California International Life Services Knights of Columbus Council 1920, Glendale, California Life Legal Defense Foundation Life Priority Network Medical Oncology Association of Southern California Mission Hospital Mission Hospital Laguna Beach National Right to Life Committee North Orange County ProLife Chapter Pajaro Valley Senior Coalition Patients Right Action Fund Petaluma Valley Hospital Placer Independent Resource Services Providence Health & Services, Southern California Queen of the Valley Medical Center Redwood Memorial Hospital, Fortuna San Joaquin ProLife Council Santa Rosa Memorial Hospital Scholl Institute of Bioethics Silicon Valley Independent Living Center Sisters of Social Service of Los Angeles St. Joseph Hospital, Eureka SB 128 Page 14 St. Joseph Hospital, Orange St. Jude Medical Center St. Mary Medical Center ARGUMENTS IN SUPPORT: Compassion and Choices writes that too many suffer needlessly at the end of life, too many endure unrelenting pain and other symptoms, and too many turn to violent means at the end of life when medical aid could help them die peacefully. This bill is modeled after legislation in Oregon and other states where aid in dying has been proven to be good policy and safe medical practice. California voters support the medical option of aid in dying by more than two to one margin (64% support compared to 24% oppose). Studies show patients who receive counseling about end of life choices score higher on quality of life and mood measures than patients who do not. Courts have upheld this right. In 1997, the United States Court of Appeals for the Ninth Circuit upheld Oregon's first-in-the-nation Death With Dignity Act (passed by ballot in 1994). On December 31, 2009, Montana Supreme Court ruled in a 5-2 vote that terminally ill Montanans have the right to choose aid in dying under state law. In January 2014, New Mexico Second Judicial District Judge Nan Nash issued a landmark decision that terminally ill, mentally competent adults have a fundamental right to aid in dying under the substantive due process clause of the New Mexico State Constitution. On February 6, 2014, the Canada Supreme Court ruled that prohibition of assisted dying violates the right to life, liberty and security of the person and is not in accordance with principles of fundamental justice. The AIDS Healthcare Foundation writes, "When a person with HIV reaches the end of life with treatment options no longer available, it is inhumane that we fail to provide them with the choice that would bring them peace." The Secular Coalition for California supports the development of new public policy based on science and reason and indicates that the benefits of this bill are supported by extensive scientific study and data. They strongly encourage policymakers to base their decisions regarding this bill on sound, tested evidence, not superstition and unsubstantiated fear-mongering. Equality California indicates that this issue is particularly important to them because of its impact on the lesbian, gay, bisexual, and SB 128 Page 15 transgender community. The roots of the "death with dignity" movement owe much to mothers of men dying painfully during the early days of the AIDS epidemic. Almost one hundred physicians have registered their support for this bill. Many write about witnessing patients suffer horrifically painful deaths because the standard of care medication management and surgery is not effective at controlling terminal pain. Pain medication can cause disabling side effects. One physician writes, "Providing terminally ill patients with this humane option is preferable to the desperate and covert self-help practices some patients are currently forced to employ. Providing this autonomy and choice to the vulnerable and dying is one of the last comforting things we can do for our fellow humans." Another physician writes that patients and families have asked for relief from suffering but he has been unable to provide this which he believes is his role as their physician. A physician and cancer patient indicates he has urged the California Medical Association (of which he is a member) to take a neutral position on this bill. He asserts that palliative sedation is a poor substitute to offer as an alternative, and he would not want to rely on a doctor sedating him into unconsciousness in preference to having the key to exit in his own possession. ARGUMENTS IN OPPOSITION: The California Disability Alliance indicates it has a broad agenda for promoting health, independence and full community inclusion of persons with disabilities but is convinced that legalizing physician assisted suicide or euthanasia in the present environment of increasingly cost-driven health care budgeting decisions will adversely affect their efforts to achieve these goals and will result in unnecessary deaths among people in poverty, people with disabilities, and elderly people. California Family Alliance states there is no true way to protect against undue influence for those who seek to profit from a patient's early death. California Family Alliance writes the true compassionate approach is to provide terminal patients with a variety of viable life-affirming options, including physical, mental and emotional support. The California Foundation for Independent Living Centers believes that people with disabilities and their families will still face more subtle, behind-the-scenes forms of SB 128 Page 16 persuasion and coercion. The disability community is convinced that the perception that death is preferable to living with a disability is still pervasive. The Association of Northern California Oncologists opposes this bill because it is contrary to a physician's oath and primary responsibility to do no harm, legalizing physician-assisted suicide undermines the valuable and overwhelmingly successful work of hospice and pain and palliative care colleagues, and this bill is based on a common misunderstanding that it is easy to determine when a patient is terminal. Hematologists/oncologists are the first to recognize that it is notoriously difficult for physicians to know when their patients are terminal. Data from Oregon finds that many patients have been prescribed life-ending medications and have lived more than a year after the prescription has been filled. The Agudath Israel of California, a Jewish advocacy group, is concerned because of California's diversity and more advanced medical system with many more large and advanced medical centers that they are not sure the same results would be seen here as in Oregon. The Alliance of Catholic Health Care (Alliance) indicates that California law already gives every patient the right to refuse extraordinary end of life treatment. The Alliance also fears that if aid in dying becomes a legal right or "settled law," it will be extremely difficult to limit it to a small group of terminal patients. Additionally, the Alliance is concerned that once a patient obtains a lethal dose of drugs there is no transparency and cites a quote associated with the Oregon Department of Human Services "?the reporting requirements can only ensure that the process for obtaining lethal medications complies with the law." The Alliance states, "We cannot determine whether physician-assisted suicide is being practiced outside the framework of the Death with Dignity Act." The Alliance also refers to a Yale study of the Netherlands that indicated in 18% of the cases there were complications and the physician intervened and ended the life of the patient. The Alliance also raises concerns that there is no definition of active euthanasia. Several thousands of individuals registered their opposition including some physicians. One physician writes that the bill wrongly assumes all physicians are ideal moral agents. Physicians are under increasing stress, workloads and cost pressures. It takes no great skill and very little SB 128 Page 17 time to write a lethal prescription and it takes consummate skill and lots of effort to provide good end of life care. A coalition of opponents indicate that while protections for health care providers have been increased through recent amendments it is the patient who remains without adequate protections. Prepared by:Teri Boughton / HEALTH / 6/2/15 9:19:19 **** END ****