BILL ANALYSIS Ó ABX2 15 Page 1 Date of Hearing: September 1, 2015 ASSEMBLY COMMITTEE ON PUBLIC HEALTH AND DEVELOPMENTAL SERVICES Rob Bonta, Chair ABX2 15 (Eggman, et.al.) - As Introduced August 17, 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: 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)Defines various other terms for purposes of these provisions, including defining an adult as an individual 18 years of age or older, an aid-in-dying drug as a drug determined and prescribed by a physician for a qualified individual, and an attending physician as the physician who has primary responsibility for the health care of an individual and treatment of the individual's terminal disease. Defines terminal disease as an incurable and irreversible disease that has been medically confirmed and will, within reasonable ABX2 15 Page 2 medical judgment, result in death within six months. 3)Requires an individual requesting an aid-in-dying drug to have done so voluntarily. 4)Specifies that the individual must be a resident of California with the ability to establish residency through possession of a California driver's license or other identification issued by the State of California; registration to vote in California; or, filing of a California tax return for the most recent tax year. 5)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, surrogate, or any other legally recognized health care decision maker. 6)Specifies that a person will not be qualified to obtain an aid-in-dying drug solely because of age or disability. 7)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. ABX2 15 Page 3 8)Prohibits the attending physician, consulting physician, or the mental health specialist of the requesting individual from being a witness on the written request. 9)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. 10)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. 11)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, and, requires the attending physician before prescribing to do all of the following: a) Make an initial determination whether the requesting adult has the capacity to make medical decisions, and if there are indications of a mental disorder, to refer the individual for a mental health specialist assessment. If a mental health assessment referral is made, no aid-in-dying drugs will be prescribed until the mental health specialist determines that the individual has the capacity to make medical decisions and is not suffering from impaired judgment due to a mental disorder; b) Determine whether the requesting adult has a terminal disease; ABX2 15 Page 4 c) Determine whether the requesting adult has voluntarily made the request for an aid-in-dying drug and is a qualified individual; d) Confirm that the individual is making an informed decision by discussing all of the following with them: i) Their medical diagnosis and prognosis; ii)The potential risks associated with ingesting the requested aid-in-dying drug; iii)The possibility that they may choose to obtain the aid-in-dying drug but not take it; and, iv)Feasible alternatives or additional treatment options including, but not limited to, comfort care, hospice care, palliative care, and pain control. e) Refer the individual to a consulting physician for medical confirmation of the diagnosis and prognosis, and for a determination that the individual has the capacity to make medical decisions; f) Confirm that the individual's request does not arise from coercion or undue influence by another person by privately discussing, unless an interpreter is needed, whether or not the individual is feeling coerced or unduly influenced by another person; g) Counsel the individual about the importance of all of the following: ABX2 15 Page 5 i) Having another person present when they ingest the aid-in-dying drug; ii)Not ingesting the aid-in-dying drug in a public place; iii)Notifying the next of kin of their request for an aid-in-dying drug. An individual's inability or refusal to notify their next of kin does not constitute a reason to deny their request for an aid-in-dying drug; iv)Participating in a hospice program; and, v) Maintaining the aid-in-dying drug in a safe and secure location until they will ingest it. h) Inform the individual that they may withdraw or rescind the request for an aid-in-dying drug at any time and in any manner, and offer the individual an opportunity to withdraw or rescind the request for an aid-in dying drug before prescribing the aid-in-dying drug; i) Verify, immediately prior to writing the prescription for the aid-in-dying drug, that the individual is making an informed decision; j) Confirm that all the requirements for requesting an aid-in-dying drug have been met; and, aa)Fulfill all medical record documentation requirements, including completing the End of Life Option Act Checklist and Compliance Form and placing it in the individual's medical record. 12)Once all of the requirements have been met, allows the ABX2 15 Page 6 attending physician to deliver the aid-in-dying drug in any of the following ways: a) Dispensing the aid-in-dying drug directly, including ancillary medication intended to minimize the qualified individual's discomfort, if the attending physician is authorized to dispense medicine under California law, has a current United States Drug Enforcement Administration certificate, and complies with any applicable administrative rule or regulation; b) With the individual's written consent, contacting a pharmacist to inform them of the prescriptions, and delivering the written prescriptions personally, by mail, or electronically to the pharmacist, who may dispense the drug to the individual, the attending physician, or a person expressly designated by the individual and with the designation delivered to the pharmacist in writing or verbally; and, c) Delivery of the dispensed drug to the qualified individual, the attending physician, or a person expressly designated by the individual may be made by personal delivery, or, with a signature required on delivery, by the United Parcel Service, United States Postal Service, Federal Express, or by messenger service. 13)Prior to the individual obtaining an aid-in-dying prescription from the attending physician, requires the consulting physician to: a) Examine the individual and their medical records; b) Confirm in writing the attending physician's diagnosis and prognosis; c) Determine that the individual has the capacity to make medical decisions, is acting voluntarily, and has made an informed decision; ABX2 15 Page 7 d) Refer the individual for a mental health specialist assessment, if there are indications of a mental disorder; and, e) Document all of the above in the individual's medical record. 14)If the attending or consulting physician refers the individual to a mental health specialist, requires the mental health specialist to: a) Examine the qualified individual and their medical records; b) Determine that the individual has the mental capacity to make medical decisions, act voluntarily, and make an informed decision; c) Determine that the individual is not suffering from impaired judgment due to a mental disorder; and, d) Document all of the above in the individual's medical record. 15)Requires all of the following to be documented in the individual's medical record: a) All oral requests for aid-in-dying drugs; b) All written requests for aid-in-dying drugs; c) Both the attending physician's and consulting physician's diagnosis and prognosis, and the determination that a qualified individual has the capacity to make medical decisions, is acting voluntarily, and has made an informed decision, or that the attending or consulting ABX2 15 Page 8 physician has determined that the individual is not a qualified individual; d) A report on the outcome and determinations made during a mental health specialist's assessment, if performed; e) The attending physician's offer to the qualified individual to withdraw or rescind his or her request at the time of the individual's second oral request; and, f) A note by the attending physician indicating that all requirements have been met and indicating the steps taken to carry out the request, including a notation of the aid-in-dying drug prescribed. 16)Requires the attending physician, within 30 calendar days of writing a prescription for an aid-in-dying drug, to submit a copy of the patient's written request, the attending physician compliance form, and the consulting physician compliance form to the State Department of Public Health (DPH). 17)Requires the attending physician, within 30 calendar days following the qualified individual's death from ingesting the aid-in-dying drug, or any other cause, to submit the attending physician follow-up form to DPH. 18)Outlines the requirements of the witnessed form an individual must submit to request an aid-in-dying drug. Requires the language of the request to be written in the same translated language as any conversations, consultations, or interpreted conversations between a patient and his or her attending or consulting physicians. Prohibits an interpreter from being related to the individual requesting the aid-in-dying drug and requires interpreters to meet certain professional association standards. ABX2 15 Page 9 19)Makes a 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, invalid. 20)Prohibits the sale, procurement, or issuance of a life, health, or accident insurance or annuity policy; health care service plan contract; or, health benefit plan, or the rate charged for a policy or plan contract from being conditioned upon or affected by a person making, withdrawing, or rescinding a request for an aid-in-dying drug. Also provides that an obligation owing under any contract executed on or after January 1, 2016 may not be conditioned or affected by a qualified individual making, withdrawing, or rescinding a request for an aid-in-dying drug. 21)Provides that death resulting from the self-administration of an aid-in-dying drug is not suicide, and therefore health and insurance coverage shall not be exempted on that basis. 22)Provides that a qualified individual's act of self-administering an aid-in-dying drug has no effect upon a life, health, or accident insurance or annuity policy other than that of a natural death from the underlying disease. 23)Prohibits an insurance carrier from providing any information in communications to an individual about the availability of an aid-in-dying drug unless requested by the individual or their attending physician at the behest of the individual. Clarifies that any communication must not include both a denial of treatment and information about the availability of aid-in-dying drug coverage. ABX2 15 Page 10 24)Protects a person from civil, criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in the provisions of this bill, including an individual who is present when a qualified individual self-administers the prescribed aid-in-dying drug. 25)Prohibits a health care provider or professional organization or association from subjecting an individual to censure, discipline, suspension, loss of license, loss of privileges, loss of membership, or other penalty for participating in good faith compliance with these provisions, or for refusing to participate. 26)Prohibits a health care provider from being be subject to civil, criminal, administrative, disciplinary, employment, credentialing, professional discipline, contractual liability, or medical staff action, sanction, or penalty or other liability for participating in these provisions. 27)Specifies that a request by a qualified individual to an attending physician to provide an aid-in-dying drug in good faith compliance with these provisions does not constitute the sole basis for the appointment of a guardian or conservator, and actions taken in compliance with these provisions do not provide the basis for a claim of neglect or elder abuse. 28)Provides that participation in activities authorized by this bill must be voluntary, and further clarifies that an individual is not subject to any type of sanction for refusing to inform a patient regarding his or her rights under these provisions and not referring an individual to a physician who does participate in activities authorized by this bill. ABX2 15 Page 11 29)Allows a health care provider, with advance notice, to prohibit its employees, independent contractors, or other persons or entities, including other health care providers, from participating in these provisions while on premises owned or under the management or control of the prohibiting health care provider. 30)Allows, if a health care provider has given notice, and an individual or entity violates the prohibition to participate in these provisions, the prohibiting provider to take action against an individual or entity, including, but not limited to, loss of privileges or membership, suspension, loss of employment, or termination of any lease or other contract between the prohibiting health care provider and the individual or entity that violates the policy. 31)Clarifies that nothing in these provisions prevent a health care provider from providing an individual with services that do not constitute participation in these provisions, that a health care provider may not be sanctioned for making a determination that an individual has a terminal disease and informing them of their medical prognosis, or for providing information about the End of Life Option Act to a patient upon the request of the individual. 32)Makes knowingly altering or forging a request for an aid-in-dying drug to end an individual's life without their authorization, or concealing or destroying a withdrawal or rescission of a request, punishable as a felony. 33)Makes coercing or exerting undue influence on an individual to request an aid-in-dying drug punishable as a felony. ABX2 15 Page 12 34)Specifies that nothing in these provisions 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. 35)Specifies that nothing in these provisions may be construed to limit civil liability. 36)Requires DPH to collect and review the information submitted by the attending physician on the patient's written request, the attending physician's compliance form, and the consulting physician's compliance form; requires the information to be confidential and collected in a manner that protects the privacy of the patient, the patient's family, and any medical provider or pharmacist involved with the patient under these provisions. 37)Requires DPH, on or before July 1, 2017, and each year thereafter, based on the information collected on the attending physician follow-up form in the previous year, and DPH's access to vital statistics, to compile a report which includes, but is not limited to all of the following: a) The number of people for whom an aid-in-dying prescription was written; b) The number of known individuals who died each year for whom aid-in-dying prescriptions were written, and the cause of death of those individuals; c) For the period commencing January 1, 2016, to and including the previous year, cumulatively, the total number of aid-in-dying prescriptions written, the number of people who died due to use of aid-in-dying drugs, and the number ABX2 15 Page 13 of those people who died who were enrolled in hospice or other palliative care programs at the time of death; d) The number of known deaths in California from using aid-in-dying drugs per 10,000 deaths in California; e) The number of physicians who wrote prescriptions for aid-in-dying drugs; f) Of the people who died due to using an aid-in-dying drug, demographic percentages organized by the following characteristics: i) Age at death; ii)Education level; iii)Race; iv)Sex; v) Type of insurance, including whether or not they had insurance; and, vi)Underlying illness. 38)Requires DPH to make the following forms available on its Internet Website: the attending physician checklist and compliance form, the consulting physician compliance form, and the attending physician follow-up form. The forms identify each and every requirement that must be fulfilled by a health ABX2 15 Page 14 care provider to be in compliance with the End of Life Option Act. 39)Requires a person with any unused aid-in-dying drugs after the death of a patient, to personally deliver the unused drugs to the nearest qualified disposal facility, or if none is available, to dispose of the drugs in accordance with guidelines developed by the California State Board of Pharmacy (BOP) or a federal Drug Enforcement Administration approved take back program. 40)Provides that any governmental entity that incurs costs resulting from an individual terminating his or her life under these provisions in a public place will have a claim against the estate of the individual to recover those costs and reasonable attorney fees related to enforcing the claim. 41)Requires the Medical Board of California (MBC), on or before January 1, 2019, to develop, revise, and update an attending physician checklist and compliance form, a consulting physician compliance form, and an attending physician follow-up form, based on those already provided by DPH. Requires DPH, upon completion of the new forms, to publish them on its Internet Website. 42)Makes various findings and declarations, including that any limitation to public access to personally identifiable patient data collected pursuant to these provisions is necessary to protect the privacy rights of the patient and his or her family, and that the statistical report to be made available to the public is sufficient to satisfy the public's right to access. 43)Makes the provisions of this bill severable if any provision is held invalid. ABX2 15 Page 15 EXISTING LAW: 1)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 and counseling regarding legal end-of-life options, and requires the comprehensive information to include, but not be limited to: a) Hospice care at home or in a health care setting; b) A prognosis with and without the continuation of disease-targeted treatment; c) The patient's right to refusal of or withdrawal from life-sustaining treatment; d) The patient's right to continue to pursue disease-targeted treatment, with or without concurrent palliative care; e) The patient's right to comprehensive pain and symptom management at the end of life; and, f) The patient's right to give individual health care instruction, which provides the means by which a patient may provide written health care instruction, such as an advance health care directive, and the patient's right to appoint a legally recognized health care decision maker. ABX2 15 Page 16 2)Requires a health care provider who does not wish to provide the information in 1) above to refer or transfer a patient to another health care provider who will. 3)Licenses and regulates physicians and surgeons under the Medical Practice Act by MBC, within the Department of Consumer Affairs (DCA) and provides for the licensure and regulation of pharmacies, pharmacists and wholesalers of dangerous drugs or devices by the BOP, also within the DCA. 4)Mandates health care practitioners to report any suspected elder abuse. 5)Provides, for purposes of a judicial determination, a person has the capacity to give informed consent to a proposed medical treatment if the person is able to do all of the following: a) Respond knowingly and intelligently to queries about that medical treatment; b) Participate in that treatment decision by means of a rational thought process; and, c) Understand all of the following items of minimum basic medical treatment information with respect to that treatment: i) The nature and seriousness of the illness, disorder, or defect that the person has; ABX2 15 Page 17 ii) The nature of the medical treatment that is being recommended by the person's health care providers; iii) The probable degree and duration of any benefits and risks of any medical intervention that is being recommended by the person's health care providers, and the consequences of lack of treatment; and, iv) The nature, risks, and benefits of any reasonable alternatives. 6)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. 7)Provides that a resident of a long-term care facility lacks the capacity to make a decision regarding his or her health care if the resident is unable to understand the nature and consequences of the proposed medical intervention, including its risks and benefits, or is unable to express a preference regarding the intervention. Requires the physician, in making the determination regarding capacity, to interview the patient, review the patient's medical records, and consult with facility staff, family members and friends of the resident, if any have been identified. 8)Requires the physician and surgeon last in attendance, or in the case of a patient in a long-term care facility at the time of death, the physician last in attendance or a licensed physician assistant under the supervision of the physician last in attendance, on a deceased person, to state on the certificate of death the disease or condition directly leading ABX2 15 Page 18 to death, antecedent causes, other significant conditions contributing to death and any other medical and health section data as may be required on the certificate. Requires the physician or physician assistant to specifically indicate the existence of any cancer, as defined, of which the physician or physician assistant has actual knowledge. FISCAL EFFECT: This bill has not been analyzed by a fiscal committee. COMMENTS: 1)PURPOSE OF THIS BILL. According to the author this bill would allow an adult in California with a terminal disease that 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. The author concludes, Californians that are faced with a terminal disease 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. ABX2 15 Page 19 2)BACKGROUND. Five states have authorized what is referred to as Death with Dignity or Aid-in-Dying. 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. a) Dying in America. A 2014 report published by the Institute of Medicine, "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. Too few clinicians in the 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 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 report notes that 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. ABX2 15 Page 20 b) Hospice and palliative care. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. Hospice care is available to patients who no longer wish treatment directed at curing their disease. Patients are usually referred to hospice by their personal physician, although they can be referred by their families or even by themselves. Initially, a physician certifies that the patient has a life expectancy of six months or less if the disease follows its normal course. Hospice usually begins within 48 hours after a referral, and can begin sooner based on the circumstances. A hospice nurse evaluates what the person and family needs and develops a plan of care. The plan addresses the entire family's needs: medical; emotional; psychological; spiritual; and, support services. The nurse then coordinates the care with a physician and the full team of health professionals. Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs and, to facilitate patient autonomy, access to information and choice. Palliative care is provided and services are coordinated by an interdisciplinary team - patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs. Palliative care services are available concurrently with or independent of curative or life-prolonging care. A Center to Advance Palliative Care and National Palliative Care Research Center analysis conducted in July of 2012, found that larger hospitals are more likely to have a palliative care team. More than 81% of hospitals in the U.S. with more than 300 beds have a palliative care team, while less than one-quarter of hospitals with fewer than 50 beds reported having a palliative care team. ABX2 15 Page 21 c) How we want to die. In February of 2012 the California HealthCare Foundation published a survey, "Final Chapter: Californians' Attitudes and Experiences with Death and Dying". The survey found that most Californians would prefer a natural death if they became severely ill, rather than have all possible care provided. We want to die at home rather than in a hospital or nursing home, and want to talk with our doctor about our wishes for end-of-life care. However, what we want isn't what we always get, as the survey numbers illustrate: i) Seventy percent of Californians would prefer to die at home; however of deaths in 2009, 32% occurred at home, 42% in a hospital, and 18% in a nursing home; ii) Almost 80% say they definitely or probably would like to talk with a doctor about end of life wishes, but only 7% have had a doctor speak with them about it; and, iii) The survey also found that what matters most at the end of life varies by race and ethnicity, for example, Latinos rate living as long as possible more highly than do other groups. African Americans and Latinos are much more likely to place importance on being at peace spiritually. Asians and white/non-Latinos place the least importance on living as long as possible. Sixty percent of all respondents say it is extremely important that their family not be burdened by decisions regarding their care. d) Current options at the end of life. While palliative care is generally agreed to be the standard of care for the dying, in some cases some patients who are very ill do not respond to pain medications or may be suffering in other ways that make comfort impossible. In these circumstances ABX2 15 Page 22 patients' last resort options include aggressive pain management, forgoing life-sustaining treatments, voluntarily stopping eating and drinking, and sedation to unconsciousness to relieve suffering. With terminal sedation (TS), a patient will be given medications that induce sleep or unconsciousness until death occurs, often as a result of starvation or dehydration as in these instances artificial life support (such as tube feeding) is withheld, or as a result of the underlying illness or disease. Although death is certain in this instance, it may not happen for days or weeks. Because the patient is sedated, they are believed to be free of suffering. Some patients reject TS because they believe their dignity would be violated if they have to be unconscious for a prolonged period before they die, or that their families suffer unnecessarily while waiting for them to die. Some patients who are physically capable of taking nourishment may choose to voluntarily stop eating and drinking (VSED), and then are gradually allowed to die, primarily of dehydration or some other complication. Legally, the right of competent, informed patients to refuse life-prolonging interventions is clear and voluntary cessation of eating and drinking could be considered an extension of that right. However, VSED may initially increase suffering because the patient may experience thirst and hunger and patients can lose mental clarity at the end of the process, which may undermine their sense of personal integrity, or raise questions about whether the action remains voluntary. e) Ethics. The American Medical Association (AMA) code of medical ethics (opinion 2.201) states the duty to relieve pain and suffering is central to the physician's role as healer and is an obligation physicians have to their ABX2 15 Page 23 patients. Palliative sedation to unconsciousness is the administration of sedative medication to the point of unconsciousness in a terminally ill patient. It is an intervention of last resort to reduce severe, refractory pain or other distressing clinical symptoms that do not respond to aggressive symptom-specific palliation. Palliative sedation is an accepted and appropriate component of end-of-life care under specific, relatively rare circumstances. Indeed, the AMA code states, when symptoms cannot be diminished through all other means of palliation, including symptom-specific treatments, it is the ethical obligation of a physician to offer palliative sedation to unconsciousness as an option for the relief of intractable symptoms. f) Oregon. Oregon's Death with Dignity Act (DWDA), enacted in late 1997, allows terminally-ill adult Oregonians to obtain and use prescriptions from their physicians for self-administered, lethal doses of medications. In 2011 the Oregon Public Health Division published a summary of DWDA activity up to 2010 which also examined the larger trends seen over 13 years of DWDA. The first prescriptions and deaths under DWDA occurred in 1998, with 24 prescriptions written and 16 self-administered deaths. At the end of 2010, a total of 821 prescriptions had been written and 525 patients had died from ingesting medication prescribed under DWDA. The report noted that demographic characteristics remained relatively unchanged over 13 years. Of the 65 patients who died under DWDA in 2010, most (70.8%) were over age 65; the median age was 72. One hundred percent of decedents were white, well-educated (42.2% had at least a baccalaureate degree), had cancer (78.5%), or amyotrophic lateral sclerosis (11%). As in previous years, the most commonly mentioned end of life concerns among those who died in 2010 were loss of autonomy (93.8%), decreasing ability to participate in activities that made life enjoyable (93.8%), and loss of dignity ABX2 15 Page 24 (78.5%). Since the law was passed in 1997, a total of 1,327 people have had DWDA prescriptions written and 859 patients have died from ingesting medications prescribed under DWDA. Over 90% of patients who used DWDA were enrolled in hospice. g) Improved end of life care. A 2001 report published in the Journal of American Medicine, "Oregon Physicians' Attitudes About and Experiences with End-of-Life Care Since Passage of the Oregon Death with Dignity Act," found that a high proportion of physicians reported they had made efforts to improve their knowledge of palliative care since DWDA passed in 1994. Among the 2094 physicians who cared for at least one terminally ill patient in the previous year, 76% reported that they had made efforts to improve their knowledge of the use of pain medications in the terminally ill "somewhat" or "a great deal," 69% reported that they sought to improve their recognition of psychiatric disorders, such as depression, and 79% reported that their confidence in the prescribing of pain medications had improved. h) Taking the end of life drug. The following narrative describes how end of life drugs are prepared and ingested. It was received from a retired Oregon family physician who wrote approximately 15 prescriptions for aid-in-dying drugs over the course of his career: "The most common drug prescribed is 10 grams of secobarbital (Seconal). A standard size Seconal capsule is 100 mg. This drug was very commonly used as a sleeping pill before the invention of the benzodiazepines (e.g. Dalmane, or Valium) and then later zolpidem (Ambien). The 100 Seconal capsules are delivered in a bottle with a label stating they are for use in the Oregon Death with Dignity Law. ABX2 15 Page 25 In all of the cases I've been involved with, family members, volunteers, and hospice workers have all been very aware that the patient has been in possession of the medication, and I am not aware of a dose that is unaccounted for. In Oregon it is important to understand that it would be very unusual for a patient to actually obtain the drug and then not use it. It is much more common for the patient to request that the prescription be held on file at the pharmacy until they decide to use it. Pharmacies have been very willing to do this. When the patient decides to take the drug the capsules are opened and emptied by the pharmacist, a volunteer or family member, and the powder is mixed with about three ounces of liquid for use." Seconal is not the only drug used in DWDA. According to the Oregon Public Health Division, DWDA 2013 annual report, since 2010, the trend has shifted to predominant use of pentobarbital (90% of all prescriptions in 2013). Patients are usually also prescribed an anti-nausea medication to take before ingesting an aid-in-dying drug. i) 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 charges for services rendered under their DWDA are paid only with state funds. According to Compassion & Choices (C&C), the current approximate cost of the medication in Oregon is $1,500. ABX2 15 Page 26 j) Rough estimate of potential aid-in-dying participation in California. On average, over the last 17 years, 50 people a year have used DWDA in Oregon. Oregon has about 33,000 residents die each year. California is approximately seven times more populous than Oregon and has approximately 230,000 deaths each year. If the same percentage of people in California chooses to use the End of Life Options Act as in Oregon, we may have approximately 350 participants a year. aa) Shifting views on Death with Dignity. While Death with Dignity remains a very controversial issue, opinions have shifted significantly over the last several years. A Medscape survey of 17,000 U.S. doctors released in December 2014 found that 54% of doctors surveyed in 2014 think physician-assisted suicide should be allowed. That is up from 46% in 2010. A 2014 Gallup poll found that 69% of Americans support laws allowing doctors to "end the patient's life by some painless means" if the patient has an incurable disease. In the same poll, 58% of Americans said they support laws allowing doctors to "assist the patient to commit suicide" if the patient has an incurable disease and is in severe pain. A June 2015 phone survey of 601 likely November 2016 election voters, conducted by Goodwin Simon Strategic Research for C&C, shows nearly 69% of likely voters in California would favor a Death with Dignity measure, and support is significant among every voter subgroup, including: i) Men (70%) and women (67%); ABX2 15 Page 27 ii) Younger voters (69% ages 18-54) and older voters (68% ages 55+); iii) Catholics (60%), non-evangelical Protestants (65%), and evangelical Christians (57%); and, iv)Democrats (73%), Independents (80%), and Republicans (55%). Only 24% of Californians would oppose the measure. 1)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 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. AIDS Project, Los Angeles supports this bill stating that this issue is particularly important because of its impact on the LGBT community, and noting that the roots of the death with dignity movement owes much to mothers of men dying painfully during the early days of the AIDS epidemic. The AIDS Healthcare Foundation (AHF) notes they have invested more than a quarter of a century to the palliative care necessary to minimize end of life pain and suffering. AHF states their medical staff has been witness to end stages for countless citizens that rob the patient of his or her dignity ABX2 15 Page 28 and impose unnecessary misery and they have employed every medical device available to them to reduce the misery, often with little or no success. AHF concludes, 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. Numerous other organizations support this bill including the California Council of Churches IMPACT, the California Association for Nurse Practitioners, and the California Commission on Aging 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. 2)OPPOSITION. A broad coalition of opposition to this bill, including, Disability Rights Education & Defense Fund (DREDF), Silicon Valley Independent Living Center, and The ARC California 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 California Catholic Conference notes that the mere fact that this bill has been introduced as part of the second extraordinary session, which was created to specifically address the state's future financing of our Medi-Cal and publicly financed healthcare systems, should invite concern and offer reason enough to not support the bill. The Association of Northern California Oncologists states they ABX2 15 Page 29 oppose this bill for several specific reasons the first, being 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 a terminal diagnosis. 3)RELATED LEGISLATION. a) SB 128 (Wolk and Monning) is substantially similar to this bill. SB 128 is pending a hearing in the Assembly Health Committee. b) SB 19 (Wolk) establishes the Physician Orders for Life Sustaining Treatment (POLST) eRegistry Pilot. SB 19 is pending a vote on the Assembly Floor. c) SB 149 (Stone), SB 715 (Anderson), and AB 159 (Calderon) permit a manufacturer of an investigational drug, biological product, or device to make the product available to eligible patients with terminal illnesses, and authorizes a health plan to provide coverage for any investigational drug, biological product, or device made available pursuant to these provisions. The bills also prohibit the MBC and the Osteopathic Medical Board of California from taking any disciplinary action against the license of a physician based solely on the physician's recommendation to an eligible patient regarding, or prescription for or treatment with, an investigational drug, biological product, or device, provided that the ABX2 15 Page 30 recommendation or prescription is consistent with medical standards of care. SB 149 was held in the Assembly Appropriations Committee and SB 715 is pending in the Senate Health Committee. AB 159 is pending a vote on the Senate Floor. d) AB 637 (Campos) Chapter 217, Statutes of 2015, allows nurse practitioners and physician assistants acting under the supervision of the physician and within the scope of practice authorized by law to sign a POLST form. 4)PREVIOUS LEGISLATION. a) AB 2139 (Eggman), Chapter 568, Statutes of 2014, requires a health care provider, when making a diagnosis that a patient has a terminal illness, to notify the patient of his or her right to comprehensive information and counseling regarding legal end of life options. Extends the right to request information to a person authorized to make health care decisions for the patient and specifies that the information may be provided at the time of diagnosis or at a subsequent visit with the health care provider. b) SB 1357 (Wolk), of 2014 would have established a POLST registry at the California Health and Human Services Agency. SB 1357 was held on the Senate Appropriations suspense file. c) SB 1004 (Ed Hernandez), Chapter 574, Statutes of 2014, requires the Department of Health Care Services (DHCS) to assist Medi-Cal managed care plans in delivering palliative care services, and requires DHCS to consult with stakeholders and directs DHCS to ensure the delivery of ABX2 15 Page 31 palliative care services in a manner that is cost-neutral to the General Fund, to the extent practicable. d) AB 2747 (Berg), Chapter 683, Statutes of 2008, facilitates end of life care communication between doctors and their patients by enacting the California Right to Know End-of-Life Act of 2008 to ensure that health care providers provide critically-needed information in carefully-circumscribed instances. e) AB 3000 (Wolk), Chapter 266, Statutes of 2008, creates POLST in California, which is a standardized form to reflect a broader vision of resuscitative or life-sustaining requests and to encourage the use of POLST orders to better handle resuscitative or life sustaining treatment consistent with a patient's wishes. f) AB 374 (Berg), of 2007, would have enacted the California Compassionate Choices Act, which would authorize competent adults who have been determined by two physicians to be suffering from a terminal disease to make a request for medication to hasten the end of their lives in a humane manner. AB 374 was moved to the inactive file on the Assembly Floor without a vote recorded. g) AB 651 (Berg), of 2006, would have established a procedure for a competent adult person who is terminally ill and expected to die within six months to obtain from his or her physician a prescription for medication that he or she may self-administer in order to end his or her life. AB 651 failed passage in the Senate Judiciary Committee. h) AB 654 (Berg), of 2005, would have enacted the California Compassionate Choices Act, which would authorize ABX2 15 Page 32 competent adults who have been determined by two physicians to be suffering from a terminal disease to make a request for medication to hasten the end of their lives in a humane and dignified manner. AB 654 was moved to the inactive file on the Assembly Floor without a vote recorded. 5)SUGGESTED AMENDMENTS. a) As currently drafted the bill provides immunity to persons participating in good faith with these provisions who are present when a qualified individual self-administers the prescribed aid-in-dying drug. In order to clarify that this provision applies to individuals who are not health care providers, the Committee may wish to amend the bill as follows: 443.14. (a) Notwithstanding any other law, a person , other than a health care provider, shall not be subject to civil or criminal liability solely because the person was present when the qualified individual self-administers the prescribed aid-in-dying drug. A person who is present may, without civil or criminal liability, assist the qualified individual by preparing the aid-in-dying drug so long as the person does not assist the qualified person in ingesting the aid-in-dying drug.
criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in good faith compliance with this part, including an individual who is present when a qualified individual self-administers the prescribed aid-in-dying drug. b) As currently drafted the bill provides blanket immunity for health care providers participating in these provisions, even in instances where their actions are grossly negligent. The Committee may wish to amend the ABX2 15 Page 33 bill as follows: 443.14 (d) The immunities from liability specified in this section do not apply to any acts or omissions constituting gross negligence or willful or wanton misconduct. c) As currently drafted the bill requires DPH to report information based on information collected from the attending physician, and for the report to be available to the public, however it does not specifically require DPH to post the report on its Internet Web site. The Committee may wish to amend the bill as follows: (b) On or before July 1, 2017, and each year thereafter, based on the information collected in the previous year, the department shall reportcreate a report with the information collected from the attending physician follow-up formfollow-up form, and post that report to its Internet Web site . d) As currently drafted the bill requires the Medical Board to revise several of the forms required by this bill. The Committee may wish to amend the bill to instead authorize the Board to update the forms when and if that becomes necessary. e) Additional minor, technical amendments to correct drafting errors and add Speaker Atkins, Assemblymember Perea, and Senator Glazer as co-authors. REGISTERED SUPPORT / OPPOSITION: ABX2 15 Page 34 Support Insurance Commissioner Dave Jones AIDS Healthcare Foundation AIDS Project Los Angeles Area Agency on Aging, Central Coast Commission for Senior Citizens Bloom in the Desert Ministries California Association of Marriage and Family Therapists California Association for Nurse Practitioners California Church IMPACT California Commission on Aging California Democratic Party California Primary Care Association Cardinal Point at Mariner Square Residents' Association Coastside Democrats Compassion & Choices, California County of Santa Cruz Democratic Women of Santa Barbara County Desert Stonewall Democrats Full Circle Living & Dying Collective Gay and Lesbian Medical Association Gray Panthers of Long Beach Laguna Woods Democratic Club Mar Vista Community Council National Association of Social Workers, California Chapter Older Women's League, San Francisco Potrero Hill Democratic Club Progressive Christians Uniting Sacramento Central Labor Council AFL-CIO San Francisco AIDS Foundation Santa Barbara County Board of Supervisors San Mateo County Medical Association Unitarian Universalist Church of the Desert ABX2 15 Page 35 Ventura County Board of Supervisors West Hollywood United Church of Christ Numerous individuals Opposition Agudath Israel of California Alliance of Catholic Health Care Arroyo Grande Community Hospital Association of Northern California Oncologists Autistic Self Advocacy Network California Catholic Conference California Disability Alliance California Foundation for Independent Living Centers California Hospital Medical Center California Nurses for Ethical Standards Choice is an Illusion Coalition of Concerned Medical Professionals Communities Actively Living Independent and Free Community Hospital of San Bernardino Communities United in Defense of Olmstead Crusade for Life Dignity Health Disability Action Center Disability Rights Education & Defense Fund Dominican Hospital FREED Center for Independent Living Glendale Memorial Hospital and Health Center Independent Living Center of Southern California Independent Living Resource Center, San Francisco Life Priority Network League of United Latin American Citizens, Evergreen Council League of United Latin American Citizens, Mayfair Council League of United Latin American Citizens, Santa Clara Council ABX2 15 Page 36 Marian Regional Medical Center Medical Oncology Association of Southern California, Inc. Mercy General Hospital Mercy Hospital Folsom Mercy Medical Center Mercy Medical Center Mt. Shasta Patients' Rights Action Fund Placer Independent Resource Services Providence Health & Services, Southern California The Salvador E. Alvarez Institute for Non-Violence Santa Rosa Memorial Hospital Scholl Institute of Bioethics Sequoia Hospital Silicon Valley Independent Living Center St. Agnes Medical Center St. Bernardine Medical Center St. John's Regional Medical Center & Pleasant Valley Hospital St. Joseph's Behavioral Health Center St. Joseph Health St. Joseph Health, Mission Hospital Viejo & Laguna Beach St. Joseph Hospital, Orange St. Joseph's Medical Center St. Joseph Health, Queen of the Valley St. Jude Medical Center St. Mary Medical Center, Long Beach St. Mary Medical Center, Apple Valley The Arc, California Numerous individuals Analysis Prepared by:Lara Flynn / HEALTH / (916) 319-2097 ABX2 15 Page 37