Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal disease, as defined, to make a request for a drug prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request an aid-in-dying drug and, under specified circumstances, an interpreter declaration to be signed subject to penalty of perjury, thereby imposing creating a crime and imposing state-mandated local program. This bill would require specified information to be documented in the individuals medical record, including, among other things, all oral and written requests for an aid-in-dying drug.

This bill would prohibit a provision in a contract, will, or other agreement from being conditioned upon or affected by a person making or rescinding a request for the above-described drug. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, health care service plan, contract, or health benefit plan, or the rate charged for any policy or plan contract, from being conditioned upon or affected by the request. The bill would prohibit 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 by the individual, individual or his or her attending physician at the behest of the individual, or the individuals designee. individual. The bill would also prohibit any communication from containing both the denial of treatment and information as to the availability of aid-in-dying drug coverage.

This bill would provide immunity from civil, criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in good faith compliance with the act, and would specify that the immunities and prohibitions on sanctions of a health care provider are solely reserved for conduct provided for by the bill. The bill would make participation in activities authorized pursuant to its provisions voluntary, and would make health care providers immune from liability for refusing to participate engage in activities authorized pursuant to its provisions. The bill would authorize a health care provider to prohibit its employees, independent contractors, or other persons or entities, including other health care providers, from participating in activities under this the act while on the premises owned or under the management or direct control of that prohibiting health care provider, or while acting within the course and scope of any employment by, or contract with, the prohibiting health care provider.

This bill would make it a felony to knowingly alter or forge a request for drugs to end an individuals life without his or her authorization or to conceal or destroy a withdrawal or rescission of a request for a drug, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request a drug for the purpose of ending his or her life or to destroy a withdrawal or rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions is to be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among other things, suicide or homicide.

This bill would require the State Public Health Officer to adopt regulations establishing additional reporting requirements for physicians and pharmacists to determine the use of, and compliance with, the act, and would require the State Public Health Officer to annually review a sample of certain records and the State Department of Public Health to make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal disease, as defined, to make a request for a drug prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request an aid-in-dying drug and, under specified circumstances, an interpreter declaration to be signed subject to penalty of perjury, thereby imposing a crime and state-mandated local program. This bill would require specified information to be documented in the individuals medical record, including, among other things, all oral and written requests for an aid-in-dying drug.

This bill would prohibit a provision in a contract, will, or other agreement from being conditioned upon or affected by a person making or rescinding a request for the above-described drug. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, health care service plan, contract, or health benefit plan, or the rate charged for any policy or plan contract, from being conditioned upon or affected by the request. The bill would prohibit 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 by the individual, his or her attending physician at the behest of the individual, or the individuals designee. The bill would also prohibit any communication from containing both the denial of treatment and information as to the availability of aid-in-dying drug coverage.

This bill would provide immunity from civil, criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in good faith compliance with the act, and would specify that the immunities and prohibitions on sanctions of a health care provider are solely reserved for conduct provided for by the bill. The bill would provide that make participation in activities authorized pursuant to this bill shall be voluntary. its provisions voluntary, and would make health care providers immune from liability for refusing to participate in activities authorized pursuant to its provisions. The bill would authorize a health care provider to prohibit its employees, independent contractors, or other persons or entities, including other health care providers, from participating in activities under this act while on the premises owned or under the management or direct control of that prohibiting health care provider, or while acting within the course and scope of any employment by, or contract with, the prohibiting health care provider.

This bill would make it a felony to knowingly alter or forge a request for drugs to end an individuals life without his or her authorization or to conceal or destroy a withdrawal or rescission of a request for a drug, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request a drug for the purpose of ending his or her life or to destroy a withdrawal or rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions is to be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among other things, suicide or homicide.

This bill would require the State Public Health Officer to adopt regulations establishing additional reporting requirements for physicians and pharmacists to determine the use of, and compliance with, the act, and would require the State Public Health Officer to annually review a sample of certain records and the State Department of Public Health to make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal disease, as defined, to make a request for medication a drug prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request aid-in-dying medication an aid-in-dying drug and, under specified circumstances, an interpreter declaration to be signed subject to penalty of perjury, thereby imposing a crime and state-mandated local program. This bill would require specified information to be documented in the individuals medical record, including, among other things, all oral and written requests for an aid-in-dying drug.

This bill would prohibit a provision in a contract, will, or other agreement from being conditioned upon or affected by a person making or rescinding a request for the above-described medication. drug. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, health care service plan, contract, or health benefit plan, or the rate charged for any policy or plan contract, from being conditioned upon or affected by the request. The bill would prohibit an insurance carrier from providing any information in communications made to an individual about the availability of aid-in-dying medication an aid-in-dying drug absent a request by the individual, his or her attending physician at the behest of the individual, or the individuals designee. The bill would also prohibit any communication from containing both the denial of treatment and information as to the availability of aid-in-dying medication drug coverage.

This bill would provide immunity from civil or criminal civil, criminal, administrative, employment, or contractual liability or professional disciplinary action for participating in good faith compliance with the act, and would specify that the immunities and prohibitions on sanctions of a health care provider are solely reserved for conduct provided for by the bill. The bill would provide that participation in activities authorized pursuant to this bill shall be voluntary. The bill would authorize a health care provider to prohibit its employees, independent contractors, or other persons or entities, including other health care providers, from participating in activities under this act while on the premises owned or under the management or direct control of that prohibiting health care provider, or while acting within the course and scope of any employment by, or contract with, the prohibiting health care provider.

This bill would make it a felony to knowingly alter or forge a request for medication drugs to end an individuals life without his or her authorization or to conceal or destroy a withdrawal or rescission of a request for medication a drug, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request medication a drug for the purpose of ending his or her life or to destroy a withdrawal or rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions is to be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among others, other things, suicide or homicide.

This bill would require the State Public Health Officer to adopt regulations establishing additional reporting requirements for physicians and pharmacists to determine the use of, and compliance with, the act, and would require the state State Public Health Officer to annually review a sample of certain records and the State Department of Public Health to make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal illness, disease, as defined, to make a request for medication prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request aid-in-dying medication and and, under specified circumstances circumstances, an interpreter declaration to be signed subject to penalty of perjury, thereby imposing a crime and state-mandated local program.

This bill would prohibit a provision in a contract, will, or other agreement, or in a health care service plan contract, or health benefit plan contract, agreement from being conditioned upon or affected by a person making or rescinding a request for the above-described medication. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, health care service plan, contract, or health benefit plan, or the rate charged for any policy, policy or plan contract, from being conditioned upon or affected by the request. The bill would prohibit an insurance carrier from providing any information in communications made to an individual about the availability of aid-in-dying medication absent a request by the individual, his or her attending physician at the behest of the individual, or the individuals designee. The bill would also prohibit any communication from containing both the denial of treatment and information as to the availability of aid-in-dying medication coverage.

This bill would provide immunity from civil or criminal liability or professional disciplinary action for participating in good faith compliance with the act, and would specify that the immunities and prohibitions on sanctions of a health care provider are solely reserved for conduct provided for by the bill. The bill would provide that participation in activities authorized pursuant to this bill shall be voluntary. The bill would authorize a health care provider to prohibit its employees, independent contractors, or other persons or entities, including other health care providers, from participating in activities under this act while on the premises owned or under the management or direct control of that prohibiting health care provider, or while acting within the course and scope of any employment by, or contract with, the prohibiting health care provider.

This bill would make it a felony to knowingly alter or forge a request for medication to end an individuals life without his or her authorization or to conceal or destroy a rescission of a request for medication, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request medication for the purpose of ending his or her life or to destroy a rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among others, suicide or homicide.

This bill would require the State Department of Public Health Officer to adopt regulations regarding the collection of information establishing additional reporting requirements for physicians and pharmacists to determine the use of of, and compliance with with, the act, and would require the department state Public Health Officer to annually review a sample of certain records and the State Department of Public Health to make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal illness, as defined, to make a request for medication prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request aid-in-dying medication and under specified circumstances an interpreter declaration to be signed subject to penalty of perjury, thereby imposing a crime and state-mandated local program.

This bill would prohibit a provision in a contract, will, or other agreement, or in a health care service plan contract, or health benefit plan contract, from being conditioned upon or affected by a person making or rescinding a request for the above-described medication. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, or the rate charged for any policy, from being conditioned upon or affected by the request.

This bill would provide immunity from civil or criminal liability or professional disciplinary action for participating in good faith compliance with the act. act, and would specify that the immunities and prohibitions on sanctions of a health care provider are solely reserved for conduct provided for by the bill. The bill would provide that participation in activities authorized pursuant to this bill shall be voluntary.

This bill would make it a felony to knowingly alter or forge a request for medication to end an individuals life without his or her authorization or to conceal or destroy a rescission of a request for medication, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request medication for the purpose of ending his or her life or to destroy a rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among others, suicide or homicide.

This bill would require the State Department of Public Health to adopt regulations regarding the collection of information to determine the use of and compliance with the act, and would require the department to annually review a sample of certain records and make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Existing law authorizes an adult to give an individual health care instruction and to appoint an attorney to make health care decisions for that individual in the event of his or her incapacity pursuant to a power of attorney for health care.

This bill would enact the End of Life Option Act authorizing an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal illness, as defined, to make a request for medication prescribed pursuant to these provisions for the purpose of ending his or her life. The bill would establish the procedures for making these requests. The bill would also establish the forms to request aid-in-dying medication and under specified circumstances an interpreter declaration to be signed subject to penalty of perjury, thereby imposing a crime and state-mandated local program.

This bill would prohibit a provision in a contract, will, or other agreement, or in a health care service plan contract, or health benefit plan contract, from being conditioned upon or affected by a person making or rescinding a request for the above-described medication. The bill would prohibit the sale, procurement, or issuance of any life, health, or accident insurance or annuity policy, or the rate charged for any policy, from being conditioned upon or affected by the request.

This bill would provide immunity from civil or criminal liability or professional disciplinary action for participating in good faith compliance with the act. The bill would provide that participation in activities authorized pursuant to this bill shall be voluntary.

This bill would make it a felony to knowingly alter or forge a request for medication to end an individuals life without his or her authorization or to conceal or destroy a rescission of a request for medication, if it is done with the intent or effect of causing the individuals death. The bill would make it a felony to knowingly coerce or exert undue influence on an individual to request medication for the purpose of ending his or her life or to destroy a rescission of a request. By creating a new crime, the bill would impose a state-mandated local program. The bill would provide that nothing in its provisions be construed to authorize ending a patients life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among others, suicide or homicide.

This bill would require the State Department of Public Health to adopt regulations regarding the collection of information to determine the use of and compliance with the act, and would require the department to annually review a sample of certain records and make a statistical report of the information collected.

Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.

This bill would make legislative findings to that effect.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that no reimbursement is required by this act for a specified reason.

Date of Hearing: July 7, 2015

ASSEMBLY COMMITTEE ON HEALTH

Rob Bonta, Chair

SBPCA Bill Id:SB 128

Author:(Wolk and Monning) – As Amended Ver:June 16, 2015

SENATE VOTE: 23-15

SUBJECT: End of life.

SUMMARY: Establishes the End of Life Option Act allowing an adult with the capacity to make medical decisions, who has been diagnosed with a terminal disease, to receive a prescription for an aid-in-dying drug in order to end his or her life in a humane and dignified manner. Specifically, this bill:

1. Defines various 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 medical judgment, result in death within six months.

2. Requires an individual requesting an aid-in-dying drug to have done so voluntarily.

3. 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.

4. 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 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.

5. Specifies that a person will not be considered a qualified individual solely because of age or disability.

6. 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 acting voluntarily, is not being coerced to make or sign the request, and has the capacity to make medical decisions.

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. Prohibits the attending physician, consulting physician, or the mental health specialist of the individual from being a witness on the written request.

9. 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.

10. 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 before prescribing, requires the attending physician to do all of the following:

    1. 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.

    2. Determine whether the requesting adult has a terminal disease.

    3. Determine whether the requesting adult has voluntarily made the request for an aid-in-dying drug and is a qualified individual.

    4. Confirm that the individual is making an informed decision by discussing all of the following with them:

       1. Their medical diagnosis and prognosis;

       2. The potential risks associated with ingesting the requested aid-in-dying drug;

       3. The possibility that they may choose to obtain the aid-in-dying drug but not take it; and,

       4. Feasible alternatives or additional treatment options including, but not limited to, comfort care, hospice care, palliative care, and pain control.

    5. 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.

    6. 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.

    7. Counsel the individual about the importance of all of the following:

       1. Having another person present when they ingest the aid-in-dying drug;

       2. Not ingesting the aid-in-dying drug in a public place;

       3. 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;

       4. Participating in a hospice program; and,

       5. Maintaining the aid-in-dying drug in a safe and secure location until they will ingest it.

    8. 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.

    9. Verify, immediately prior to writing the prescription for the aid-in-dying drug, that the individual is making an informed decision.

    10. Confirm that all the requirements for requesting an aid-in-dying drug have been met.

    11. Fulfill all medical record documentation requirements, including completing the End of Life Option Act Checklist and placing it in the individual's medical record.

11. Once all of the requirements have been met, allows the attending physician to deliver the aid-in-dying drug in any of the following ways:

    1. 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;

    2. 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,

    3. 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.

12. Prior to a qualified individual obtaining an aid-in-dying drug from the attending physician, requires the consulting physician to:

    1. Examine the individual and their medical records;

    2. Confirm in writing the attending physician's diagnosis and prognosis;

    3. Determine that the individual has the capacity to make medical decisions, is acting voluntarily, and has made an informed decision;

    4. Refer the individual for a mental health specialist assessment, if there are indications of a mental disorder; and,

    5. Document all of the above in the individual's medical record.

13. If the attending or consulting physician refers the individual to a mental health specialist, requires the mental health specialist to:

    1. Examine the qualified individual and their medical records;

    2. Determine that the individual has the mental capacity to make medical decisions, act voluntarily, and make an informed decision;

    3. Determine that the individual is not suffering from impaired judgment due to a mental disorder; and,

    4. Document all of the above in the individual's medical record.

14. Requires all of the following to be documented in the individual's medical record:

    1. All oral requests for aid-in-dying drugs;

    2. All written requests for aid-in-dying drugs;

    3. 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 physician has determined that the individual is not a qualified individual;

    4. A report on the outcome and determinations made during a mental health specialist's assessment, if performed;

    5. 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,

    6. 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.

15. Outlines the requirements of the form an individual must submit to request an aid-in-dying drug, including translation and interpreter requirements. Prohibits an interpreter from being related to the individual requesting the aid-in-dying drug and requires interpreters to meet certain professional association standards.

16. 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.

17. 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.

18. 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.

19. 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.

20. 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.

21. 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.

22. 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.

23. 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.

24. 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.

25. 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.

26. 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.

27. 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.

28. 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.

29. 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.

30. Makes coercing or exerting undue influence on an individual to request an aid-in-dying drug punishable as a felony.

31. 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.

32. Requires the State Public Health Officer (SPHO) to annually review a sample of records maintained pursuant to these provisions and to adopt regulations establishing additional reporting requirements for physicians and pharmacists designed to collect information to determine utilization and compliance with these provisions. Provides that the information collected is confidential and must be done in a way that protects the privacy of the patient, their family, and any medical provider or pharmacist involved with the patient.

33. Based on the information collected, requires the Department of Public Health (DPH) to compile an annual report and to make the report public within 30 days of its completion.

34. Requires the SPHO to make an End of Life Option Act Checklist available to health care providers on DPH's Internet Website. Specifies the content of the form, which identifies each and every requirement that must be fulfilled by a health care provider to be in compliance with the End of Life Option Act, and requires the form to be completed and maintained in the patient's medical record.

35. 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.

36. 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.

37. Makes the provisions of this bill severable if any provision is held invalid.

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:

   1. Hospice care at home or in a health care setting;

   2. A prognosis with and without the continuation of disease-targeted treatment;

   3. The patient's right to refusal of or withdrawal from life-sustaining treatment;

   4. The patient's right to continue to pursue disease-targeted treatment, with or without concurrent palliative care;

   5. The patient's right to comprehensive pain and symptom management at the end of life; and,

   6. 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.

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 the Medical Board of California (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:
   
   

   1. Respond knowingly and intelligently to queries about that medical treatment;
      
      

   2. Participate in that treatment decision by means of a rational thought process; and,
      
      

   3. Understand all of the following items of minimum basic medical treatment information with respect to that treatment:
      
      

      1. The nature and seriousness of the illness, disorder, or defect that the person has;
         
         

      2. The nature of the medical treatment that is being recommended by the person’s health care providers;
         
         

      3. 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,
         
         

      4. 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 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: According to the Senate Appropriations Committee:

1. One-time costs of $265,000 over two years for the development of regulations by DPH General Fund (GF).

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 (GF).

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 (GF).

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 (GF).

5. One-time costs of $600,000 over two years 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 MBC: The MBC would not need to amend or adopt any regulations. The MBC estimates that any additional enforcement actions due to this bill would result in minor costs.

7. Minor costs to the BOP: The BOP would not need to amend or adopt any regulations. The BOP 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).
   
   

COMMENTS:

1. PURPOSE OF THIS BILL. According to the authors, the End of Life Option Act would allow an adult individual in California with a terminal disease who has the capacity to make medical decisions and 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. The authors state, 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 end of life for those individuals that feel it is right for them. The authors note there are provisions to safeguard patients from coercion and to allow voluntary participation by physicians, pharmacists and health care facilities; that this medical practice is already recognized in five other states; and, there is substantial evidence from those states that prove this law can be used safely and effectively. The authors contend Californians that are faced with a terminal disease should not have to leave the state in order to have a peaceful death, and in the end, how each of us spend the end of our lives is a deeply personal decision. The authors conclude 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.

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.

   1. 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.

2. 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.

3. How we want to die. In February of 2012 the California Health Care 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:

   1. 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.

   2. 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.

   3. 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.

4. 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 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.

5. Ethics. The American Medical Association 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 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. It is an accepted and appropriate component of end-of-life care under specific, relatively rare circumstances. 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.

6. 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 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 (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.
   
   

7. 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.
   
   

8. 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. 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.

1. 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.

10. 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 choose to use the End of Life Options Act as in Oregon, we may have approximately 350 participants a year.
    
    

11. 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:

1. Men (70%) and women (67%);

2. Younger voters (69% ages 18-54) and older voters (68% ages 55+)

3. Catholics (60%), non-evangelical Protestants (65%), and evangelical Christians (57%); and,

4. Democrats (73%), Independents (80%), and Republicans (55%).

Only 24% of Californians would oppose the measure.

3. 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. C&C also points to the case of Brittany Maynard. On November 1, 2014, Brittany Maynard, a terminally ill California native, died in Oregon after taking aid-in-dying medication. In the final weeks of her life, Ms. Maynard partnered with C&C to launch a campaign to make aid-in-dying an open and accessible medical practice in California and throughout the country.

The Conference of California Bar Associations (CCBA) states that this bill deals with fundamental rights of free speech and self-determination. CCBA notes that the end of life is a time of great sadness and stress for patients and their families who should not have their decisions constrained by criminal laws. CCBA asserts that the right to ask one's physician for aid-in-dying is based on the simple premise that people should be free.

AIDS Project, Los Angeles and Equality California support 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.

Numerous other organizations support this bill including the American Civil Liberties Union of California, the American Federation of State, County and Municipal Employees AFL-CIO, the American Medical Women's Association, the American Nurses Association/California, California Council of Churches IMPACT, the Ethical Culture Society of Silicon Valley, Planned Parenthood, and the Secular Coalition for California 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.

4. OPPOSITION. A broad coalition of opposition to this bill, including, among others, Disability Rights Education & Defense Fund (DREDF), California Catholic Conference, Silicon Valley Independent Living Center, and the ARC California 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 state that 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.

Agudath Israel of California states, in order to avoid abuse or subtle coercion, this bill must include robust and detailed reporting criteria, requiring in statute that the attending physician document the reason for the request, how the request was initiated, and the substance of the discussion of alternatives presented to the patient.

The Association of Northern California Oncologists states they oppose this bill for several specific reasons. First, because 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.

Disability Rights California notes, from their advocacy work, they know that in medical settings the lives of people with disabilities are not always valued as highly as those of people without disabilities, which has led to the failure to offer or the denial of medical treatment, supports and services. They state, in addition, in society at large, people with disabilities and seniors are subject to fears and stereotypes that devalue their lives and some people considering assisted suicide are experiencing disability, caused by their underlying diagnosis, for the first time.

5. RELATED LEGISLATION.

   1. SB 19 (Wolk) establishes the Physician Orders for Life Sustaining Treatment (POLST) registry. SB 19 is scheduled to be heard in the Assembly Health Committee on July 7, 2015.

2. 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 recommendation or prescription is consistent with medical standards of care. SB 149 is pending in the Assembly Business and Professions Committee and SB 715 is pending in the Senate Health Committee. AB 159 is pending in the Senate Appropriations Committee.

3. AB 637 (Campos) 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. AB 637 is currently pending a vote on the Senate Floor.

6. PREVIOUS LEGISLATION.

   1. 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.

   2. 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.

   3. SB 1004 (Ed Hernandez), Chapter 574, Statutes of 2014 requires 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 palliative care services in a manner that is cost-neutral to the GF, to the extent practicable.

   4. 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.

   5. 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.

   6. 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.

   7. 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.

   8. AB 654 (Berg), of 2005, 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 and dignified manner. AB 654 was moved to the inactive file on the Assembly Floor without a vote recorded.

7. DOUBLE REFERRAL. This bill is double referred; upon passage in this Committee, this bill will be referred to the Assembly Judiciary Committee.

8. SUGGESTED AMENDMENTS. In order to further protect patients from the possibility of coercion, to ensure complete and accurate data collection, and to clarify and strengthen the DPH reporting requirements regarding the use of aid-in-dying drugs, the Committee may wish to amend the bill as follows:
   
   

   1. To require the attending and consulting physician's, within 30 calendar days of approving a qualified patient for a prescription for an aid-in-dying drug, to send a Compliance Form to DPH which contains the following information, which will be used by DPH to create an annual compliance and utilization report:
      
      

      1. The patient's name and date of birth and the attending or consulting physician's name and telephone number;

2. A determination that the patient has a terminal disease and has six months or less to live;

3. A determination that the patient is capable, and acting voluntarily;

4. A determination that the patient has made his/her decision after being fully informed of:
   
   

   1. His or her medical diagnosis and prognosis;
      
      

   2. The potential risks associated with taking the aid-in-dying drug; and,

   3. The feasible alternative, including, but not limited to, comfort care, hospice care, and pain control.

5. A determination that the patient is not suffering from a psychiatric or psychological disorder, or depression causing impaired judgment.
   
   

1. To require the attending physician within 30 calendar days of approving a qualified patient for a prescription for an aid-in-dying drug, to send a copy of the patient's written, witnessed request to DPH.
   
   

2. To require the attending physician to file an Attending Physician Follow-up Form with DPH within 30 calendar days of the death of a patient with a prescription for an aid-in dying drug, that includes, but is not limited to the following information:
   
   

   1. The cause of death, whether from the aid-in-dying drug or the underlying illness, or from another cause such as terminal sedation or ceasing to eat or drink;
      
      

   2. If the patient died from ingesting an aid-in-dying drug, whether or not the attending physician was present at the time of death, or if another licensed health care provider was present, or if no licensed health care provider was present at the time of death;
      
      

   3. If the attending physician or another licensed health care provider was present at the time of death, whether or not the physician or health care provider was present when the patient ingested the aid-in-dying drug, and whether or not they were at the patient's bedside at the time of death;
      
      

   4. The day the patient consumed the aid-in-dying drug, and the day the patient died;
      
      

   5. Where the patient ingested the aid-in dying drug; a private home, assisted living facility, nursing home, acute care hospital inpatient, in-patient hospice resident, or some other location;
      
      

   6. The length of time between ingesting the aid-in-dying drug and unconsciousness;
      
      

   7. The time between ingesting the aid-in dying drug and death;
      
      

   8. Any complications that occurred, such as vomiting, seizures, or regaining consciousness;
      
      

   9. Whether or not the Emergency Medical System activated for any reason after the aid-in-dying drug was ingested;
      
      

   10. Whether or not the patient was receiving hospice care;
       
       

   11. The date on which the attending physician began caring for the patient, and the date on which the aid-in-dying prescription was written;
       
       

   12. A list of concerns with check boxes (labeled yes, no, don't know) to indicate whether or not the physician believes they may have contributed to the patient's decision to request a prescription for the aid-in-dying drug, including:
       
       

       1. The financial cost of treating or prolonging his or her terminal condition;

       2. The physical or emotional burden on family, friends, or caregivers;

       3. His or her terminal condition representing a steady loss of autonomy;

       4. The decreasing ability to participate in activities that made life enjoyable;

       5. The loss of control of bodily functions, such as incontinence and vomiting;

       6. Inadequate pain control at the end of life; or,

       7. A loss of dignity.
          
          

   13. The type of health care coverage the patient had for their underlying illness, if any.
       
       

3. Technical amendment regarding conflicting requirements for witnesses. The bill outlines specific requirements for who may act as a witness to a patients request for an aid-in-dying drug, and what they must attest to. The bill also specifies the exact content of the witness form; however the requirements on the form differ from those in this bill language. This bill should be amended to conform the requirements in the bill to the language specified on the form.

REGISTERED SUPPORT / OPPOSITION:

Support

Date of Hearing: June 23, 2015

ASSEMBLY COMMITTEE ON HEALTH

Rob Bonta, Chair

SBPCA Bill Id:SB 128

Author:(Wolk and Monning) – As Amended Ver:June 16, 2015

SENATE VOTE: 23-15

SUBJECT: End of life.

SUMMARY: Establishes the End of Life Option Act allowing an adult with the capacity to make medical decisions, who has been diagnosed with a terminal disease, to receive a prescription for an aid-in-dying drug in order to end his or her life in a humane and dignified manner. Specifically, this bill:

1. Defines various 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 medical judgment, result in death within six months.

2. Requires an individual requesting an aid-in-dying drug to have done so voluntarily.

3. Specifies that the individual must be a resident of California with the ability to establish residency through possession of a California driver 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.

4. 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 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.

5. Specifies that a person will not be considered a qualified individual solely because of age or disability.

6. 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 acting voluntarily, is not being coerced to make or sign the request, and has the capacity to make medical decisions.

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. Prohibits the attending physician, consulting physician, or the mental health specialist of the individual from being a witness on the written request.

9. 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.

10. 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 before prescribing, requires the attending physician to do all of the following:

    1. 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.

    2. Determine whether the requesting adult has a terminal disease.

    3. Determine whether the requesting adult has voluntarily made the request for an aid-in-dying drug and is a qualified individual.

    4. Confirm that the individual is making an informed decision by discussing all of the following with them:

       1. Their medical diagnosis and prognosis;

       2. The potential risks associated with ingesting the requested aid-in-dying drug;

       3. The possibility that they may choose to obtain the aid-in-dying drug but not take it; and,

       4. Feasible alternatives or additional treatment options including, but not limited to, comfort care, hospice care, palliative care, and pain control.

    5. 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.

    6. 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.

    7. Counsel the individual about the importance of all of the following:

       1. Having another person present when they ingest the aid-in-dying drug;

       2. Not ingesting the aid-in-dying drug in a public place;

       3. 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;

       4. Participating in a hospice program; and,

       5. Maintaining the aid-in-dying drug in a safe and secure location until they will ingest it.

    8. 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.

    9. Verify, immediately prior to writing the prescription for the aid-in-dying drug, that the individual is making an informed decision.

    10. Confirm that all the requirements for requesting an aid-in-dying drug have been met.

    11. Fulfill all medical record documentation requirements, including completing the End of Life Option Act Checklist and placing it in the individual's medical record.

11. Once all of the requirements have been met, allows the attending physician to deliver the aid-in-dying drug in any of the following ways:

    1. 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;

    2. 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,

    3. 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.

12. Prior to a qualified individual obtaining an aid-in-dying drug from the attending physician, requires the consulting physician to:

    1. Examine the individual and their medical records;

    2. Confirm in writing the attending physician's diagnosis and prognosis;

    3. Determine that the individual has the capacity to make medical decisions, is acting voluntarily, and has made an informed decision;

    4. Refer the individual for a mental health specialist assessment, if there are indications of a mental disorder; and,

    5. Document all of the above in the individual's medical record.

13. If the attending or consulting physician refers the individual to a mental health specialist, requires the mental health specialist to:

    1. Examine the qualified individual and their medical records;

    2. Determine that the individual has the mental capacity to make medical decisions, act voluntarily, and make an informed decision;

    3. Determine that the individual is not suffering from impaired judgment due to a mental disorder; and,

    4. Document all of the above in the individual's medical record.

14. Requires all of the following to be documented in the individual's medical record:

    1. All oral requests for aid-in-dying drugs;

    2. All written requests for aid-in-dying drugs;

    3. Both the attending physicians 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 physician has determined that the individual is not a qualified individual;

    4. A report on the outcome and determinations made during a mental health specialist's assessment, if performed;

    5. 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,

    6. 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.

15. Outlines the requirements of the form an individual must submit to request an aid-in-dying drug, including translation and interpreter requirements. Prohibits an interpreter from being related to the individual requesting the aid-in-dying drug and requires interpreters to meet certain professional association standards.

16. 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.

17. 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.

18. 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.

19. 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.

20. 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.

21. 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.

22. 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.

23. 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.

24. 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.

25. 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.

26. 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.

27. 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.

28. 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.

29. 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.

30. Makes coercing or exerting undue influence on an individual to request an aid-in-dying drug punishable as a felony.

31. 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.

32. Requires the State Public Health Officer (SPHO) to annually review a sample of records maintained pursuant to these provisions and to adopt regulations establishing additional reporting requirements for physicians and pharmacists designed to collect information to determine utilization and compliance with these provisions. Provides that the information collected is confidential and must be done in a way that protects the privacy of the patient, their family, and any medical provider or pharmacist involved with the patient.

33. Based on the information collected, requires the Department of Public Health (DPH) to compile an annual report and to make the report public within 30 days of its completion.

34. Requires the SPHO to make an End of Life Option Act Checklist available to health care providers on DPH's Internet Website. Specifies the content of the form, which identifies each and every requirement that must be fulfilled by a health care provider to be in compliance with the End of Life Option Act, and requires the form to be completed and maintained in the patient's medical record.

35. 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.

36. 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.

37. Makes the provisions of this bill severable if any provision is held invalid.

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:

   1. Hospice care at home or in a health care setting;

   2. A prognosis with and without the continuation of disease-targeted treatment;

   3. The patient's right to refusal of or withdrawal from life-sustaining treatment;

   4. The patient's right to continue to pursue disease-targeted treatment, with or without concurrent palliative care;

   5. The patient's right to comprehensive pain and symptom management at the end of life; and,

   6. 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.

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 the Medical Board of California (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:
   
   

   1. Respond knowingly and intelligently to queries about that medical treatment;
      
      

   2. Participate in that treatment decision by means of a rational thought process; and,
      
      

   3. Understand all of the following items of minimum basic medical treatment information with respect to that treatment:
      
      

      1. The nature and seriousness of the illness, disorder, or defect that the person has;
         
         

      2. The nature of the medical treatment that is being recommended by the person’s health care providers;
         
         

      3. 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,
         
         

      4. 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 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: According to the Senate Appropriations Committee:

1. One-time costs of $265,000 over two years for the development of regulations by DPH General Fund (GF).

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 (GF).

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 (GF).

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 (GF).

5. One-time costs of $600,000 over two years 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 MBC: The MBC would not need to amend or adopt any regulations. The MBC estimates that any additional enforcement actions due to this bill would result in minor costs.

7. Minor costs to the BOP: The BOP would not need to amend or adopt any regulations. The BOP 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).
   
   

COMMENTS:

1. PURPOSE OF THIS BILL. According to the authors, the End of Life Option Act would allow an adult individual in California with a terminal disease who has the capacity to make medical decisions and 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. The authors state, 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 end of life for those individuals that feel it is right for them. The authors note there are provisions to safeguard patients from coercion and to allow voluntary participation by physicians, pharmacists and health care facilities; that this medical practice is already recognized in five other states; and, there is substantial evidence from those states that prove this law can be used safely and effectively. The authors contend Californians that are faced with a terminal disease should not have to leave the state in order to have a peaceful death, and in the end, how each of us spend the end of our lives is a deeply personal decision. The authors conclude 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.

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.

   1. 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.

2. 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.

3. How we want to die. In February of 2012 the California Health Care 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:

   1. 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.

   2. 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.

   3. 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.

4. 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 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.

5. Ethics. The American Medical Association 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 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. It is an accepted and appropriate component of end-of-life care under specific, relatively rare circumstances. 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.

6. 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 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 (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.
   
   

7. 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.
   
   

8. 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. 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.

1. 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.

10. 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 choose to use the End of Life Options Act as in Oregon, we may have approximately 350 participants a year.
    
    

11. 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 2014 survey conducted by Goodwin Simon Strategic Research for C&C shows nearly 64% of likely voters in California would favor a Death with Dignity measure. Twenty-four percent would oppose the measure.

3. 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. C&C also points to the case of Brittany Maynard. On November 1, 2014, Brittany Maynard, a terminally ill California native, died in Oregon after taking aid-in-dying medication. In the final weeks of her life, Ms. Maynard partnered with C&C to launch a campaign to make aid-in-dying an open and accessible medical practice in California and throughout the country.

The Conference of California Bar Associations (CCBA) states that this bill deals with fundamental rights of free speech and self-determination. CCBA notes that the end of life is a time of great sadness and stress for patients and their families who should not have their decisions constrained by criminal laws. CCBA asserts that the right to ask one's physician for aid-in-dying is based on the simple premise that people should be free.

AIDS Project, Los Angeles and Equality California support 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.

Numerous other organizations support this bill including the American Civil Liberties Union of California, the American Federation of State, County and Municipal Employees AFL-CIO, the American Medical Women's Association, the American Nurses Association/California, California Council of Churches IMPACT, the Ethical Culture Society of Silicon Valley, Planned Parenthood, and the Secular Coalition for California 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.

4. OPPOSITION. A broad coalition of opposition to this bill, including, among others, Disability Rights Education & Defense Fund (DREDF), California Catholic Conference, Silicon Valley Independent Living Center, and the ARC California, write 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 state that 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.

Agudath Israel of California states, in order to avoid abuse or subtle coercion, this bill must include robust and detailed reporting criteria, requiring in statute that the attending physician document the reason for the request, how the request was initiated, and the substance of the discussion of alternatives presented to the patient.

The Association of Northern California Oncologists states they oppose this bill for several specific reasons. First, because 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.

Disability Rights California notes, from their advocacy work, they know that in medical settings the lives of people with disabilities are not always valued as highly as those of people without disabilities, which has led to the failure to offer or the denial of medical treatment, supports and services. They state, in addition, in society at large, people with disabilities and seniors are subject to fears and stereotypes that devalue their lives and some people considering assisted suicide are experiencing disability, caused by their underlying diagnosis, for the first time.

5. RELATED LEGISLATION.

   1. SB 19 (Wolk) establishes the Physician Orders for Life Sustaining Treatment (POLST) registry. SB 19 is currently pending in the Assembly Health Committee.

2. 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 recommendation or prescription is consistent with medical standards of care. SB 149 is pending in the Assembly Health Committee and SB 715 is pending in the Senate Health Committee. AB 159 is pending in the Senate Appropriations Committee.

3. AB 637 (Campos) 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. AB 637 is currently pending a vote on the Senate Floor.

6. PREVIOUS LEGISLATION.

   1. 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.

   2. 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.

   3. SB 1004 (Ed Hernandez), Chapter 574, Statutes of 2014 requires 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 palliative care services in a manner that is cost-neutral to the GF, to the extent practicable.

   4. 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.

   5. 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.

   6. 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.

   7. 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.

   8. AB 654 (Berg), of 2005, 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 and dignified manner. AB 654 was moved to the inactive file on the Assembly Floor without a vote recorded.

7. DOUBLE REFERRAL. This bill is double referred; upon passage in this Committee, this bill will be referred to the Assembly Judiciary Committee.

8. SUGGESTED AMENDMENTS. In order to further protect patients from the possibility of coercion, to ensure complete and accurate data collection, and to clarify and strengthen the DPH reporting requirements regarding the use of aid-in-dying drugs, the Committee may wish to amend the bill as follows:
   
   

   1. To require the attending and consulting physician's, within 30 calendar days of approving a qualified patient for a prescription for an aid-in-dying drug, to send a Compliance Form to DPH which contains the following information, which will be used by DPH to create an annual compliance and utilization report:
      
      

      1. The patient's name and date of birth and the attending or consulting physician's name and telephone number;

2. A determination that the patient has a terminal disease and has six months or less to live;

3. A determination that the patient is capable, and acting voluntarily;

4. A determination that the patient has made his/her decision after being fully informed of:
   
   

   1. His or her medical diagnosis and prognosis;

   2. The potential risks associated with taking the aid-in-dying drug; and,

   3. The feasible alternative, including, but not limited to, comfort care, hospice care, and pain control.

5. A determination that the patient is not suffering from a psychiatric or psychological disorder, or depression causing impaired judgment.
   
   

1. To require the attending physician within 30 calendar days of approving a qualified patient for a prescription for an aid-in-dying drug, to send a copy of the patient's written, witnessed request to DPH.
   
   

2. To require the attending physician to file an Attending Physician Follow-up Form with DPH within 30 calendar days of the death of a patient with a prescription for an aid-in dying drug, that includes, but is not limited to the following information:
   
   

   1. The cause of death, whether from the aid-in-dying drug or the underlying illness, or from another cause such as terminal sedation or ceasing to eat or drink;
      
      

   2. If the patient died from ingesting an aid-in-dying drug, whether or not the attending physician was present at the time of death, or if another licensed health care provider was present, or if no licensed health care provider was present at the time of death;
      
      

   3. If the attending physician or another licensed health care provider was present at the time of death, whether or not the physician or health care provider was present when the patient ingested the aid-in-dying drug, and whether or not they were at the patient's bedside at the time of death;
      
      

   4. The day the patient consumed the aid-in-dying drug, and the day the patient died;
      
      

   5. Where the patient ingested the aid-in dying drug; a private home, assisted living facility, nursing home, acute care hospital inpatient, in-patient hospice resident, or some other location;
      
      

   6. The length of time between ingesting the aid-in-dying drug and unconsciousness;
      
      

   7. The time between ingesting the aid-in dying drug and death;
      
      

   8. Any complications that occurred, such as vomiting, seizures, or regaining consciousness;
      
      

   9. Whether or not the Emergency Medical System activated for any reason after the aid-in-dying drug was ingested;
      
      

   10. Whether or not the patient was receiving hospice care;
       
       

   11. The date on which the attending physician began caring for the patient, and the date on which the aid-in-dying prescription was written;
       
       

   12. A list of concerns with check boxes (labeled yes, no, don't know) to indicate whether or not the physician believes they may have contributed to the patient's decision to request a prescription for the aid-in-dying drug, including:
       
       

       1. The financial cost of treating or prolonging his or her terminal condition;

       2. The physical or emotional burden on family, friends, or caregivers;

       3. His or her terminal condition representing a steady loss of autonomy;

       4. The decreasing ability to participate in activities that made life enjoyable;

       5. The loss of control of bodily functions, such as incontinence and vomiting;

       6. Inadequate pain control at the end of life; or,

       7. A loss of dignity.
          
          

   13. The type of health care coverage the patient had for their underlying illness, if any.
       
       

3. Technical amendment regarding conflicting requirements for witnesses. The bill outlines specific requirements for who may act as a witness to a patients request for an aid-in-dying drug, and what they must attest to. The bill also specifies the exact content of the witness form; however the requirements on the form differ from those in this bill language. This bill should be amended to strike the first reference to the witness requirements, and simply specify the exact requirements on the form.

REGISTERED SUPPORT / OPPOSITION:

Support

Insurance Commissioner Dave Jones

State Controller Betty Yee

AIDS Healthcare Foundation

AIDS Project Los Angeles

Alameda County Board of Supervisors

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

Area Agency on Aging, Advisory Council of the Central Coast Commission for Senior Citizens

Bloom in the Desert Ministries United Church of Christ

Brownie Mary Democratic Club

California Association of Nurse Practitioners

California Church IMPACT

California Commission on Aging

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 Barbara Board of Supervisors

County of Santa Cruz Board of Supervisors

Death with Dignity National Center

Democratic Party of Orange County

Democratic Party of Santa Barbara County

Democratic Party of Santa Cruz County

Democratic Women of Monterey County

Democratic Women of Santa Barbara County

Democratic Women's Club of Santa Cruz 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

Lompoc Valley Democratic Club

Los Angeles County Democratic Party

Los Angeles LGBT Center

Mar Vista Community Council

Monterey County Board of Supervisors

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

Potrero 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 District Attorney Joyce L. Dudley

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

Ventura County Board of Supervisors

Hundreds of individuals

Opposition

Agudath Israel of California

Alliance of Catholic Health Care

The Arc of California

Archdiocese of Los Angeles, Archbishop José H. Gomez

Arroyo Grande Community Hospital, Dignity Health Affiliate

Association of Northern California Oncologists

California Catholic Conference

California Disability Alliance

California Foundation for Independent Living Centers

California Nurses for Ethical Standards

California Prolife Council

Capitol Resource Institute

Choice is an Illusion

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 California

Disability Rights Education & Defense Fund

Faith and Public Policy, Calvary Chapel Chino Hills Ministry

FREED Center for Independent Living

Independent Living Resource Center of San Francisco

Independent Living Center of Southern California

Knights of Columbus Council 1920, Glendale, California

Life Legal Defense Foundation

Life Priority Network

Medical Oncology Association of Southern California

National Right to Life Committee

Osteopathic Physicians & Surgeons of California

Patients Right Action Fund

Placer Independent Resource Services

Polio Survivors Association

Providence Health & Services

Queen of the Valley Medical Center

Scholl Institute of Bioethics

Silicon Valley Independent Living Center

Dr. Aaron Kheriaty, Associate Clinical Prof of Psychiatry, University of California Irvine

Hundreds of individuals

Opponents have submitted petitions that they purport contain over 11,000 signatures

Analysis Prepared by: Lara Flynn / HEALTH / (916) 319-2097

 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 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 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:

1. The attending physician has diagnosed the individual with a terminal disease;

2. The individual has voluntarily expressed the wish to receive a prescription for an aid in dying drug;

3. The individual is a resident of California and is able to establish residency, as specified; and

4. The individual documents his or her request for an aid in dying drug, as specified.

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:

1. 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.

2. 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.

3. 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.

4. Refer the individual for a mental health specialist assessment if there are indications of a mental disorder.

5. 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.

6. Fulfill the record documentation required by this bill, as specified.

7. 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 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 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 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 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.: Yes Local: 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).

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: (Verified 5/28/15)

Insurance Commissioner Dave Jones

State Controller Betty Yee

AIDS Healthcare Foundation

AIDS Project Los Angeles

Alameda County Board of Supervisors

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

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: (Verified 5/28/15)

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

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

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 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 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 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

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SENATE COMMITTEE ON APPROPRIATIONS

Senator Ricardo Lara, Chair

2015 - 2016 Regular Session

SB 128 (Wolk) - End of life

SUSPENSE FILE. AS AMENDED.

Bill Summary:

SB 128 would allow a terminally ill individual to request a prescription for aid-in-dying medication, if certain conditions are met and certain procedures are followed.

Fiscal Impact (as approved on May 28, 2015):

• One-time costs of $265,000 over two years for the development of regulations by the Department of Public Health (General Fund).

• One-time costs of $90,000 and ongoing costs of $10,000 per year for the Department of Public Health to develop and operate a secure computer system for tracking patients who have received an aid-in-dying prescription (General Fund).

• Ongoing costs of $235,000 per year for Department of Public Health staff to collect data, follow up on prescriptions with prescribing physicians, and prepare the required annual report (General Fund).

• Ongoing costs of $275,000 per year for Department of Public Health staff to review a sample of the medical records of participating patients, to ensure compliance with the requirements of the bill (General Fund).

• One-time costs of $600,000 over two year for the Department of Managed Health Care to develop policies, adopt regulations, and respond to public record requests (Managed Care Fund). The bill does not mandate coverage for aid-in-dying medication by health plans. However, because current law mandates coverage for pain management drugs, the Department expects to develop regulations to clarify the responsibilities of health plans in this area.

• 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 the bill would result in minor costs.

• 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 the bill would result in minor costs.

• Minor potential reduction in statewide health care spending (various funds). (See below.)

Background:

Under current law, when a health care provider makes a diagnosis that a patient has a terminal illness, the health care provider is required to give certain information to the patient, including information about hospice care, the patient’s rights to continue to receive care or to refuse care, the right to give future health care instructions through advanced care directives and other means, and other information.

Proposed Law:

SB 128 would allow a terminally ill individual to request a prescription for aid-in-dying medication, if certain conditions and procedures are met.

Specific provisions of the bill would:

• Permit a competent individual who is terminally ill to make a request for aid-in-dying medication if specified conditions are met;

• Specify the manner of making the request;

• Specify the duties and responsibilities of the attending physician to whom the request is made, including requirements for referral to a consulting physician, and verification that the patient is not under duress;

• Specify the procedures for delivering the medication to the patient;

• Specify the documentation requirements on the attending physician;

• Provide specified patient protections;

• Provide protections for physicians and pharmacists from professional censure;

• Make participation by health care providers voluntary;

• Make it a felony to forge a request or coerce a patient to participate;

• Require the Department of Health Care Services to review records from participating patients’ medical records;

• Require the Department of Public Health to adopt regulations for reporting by physicians and pharmacists;

• Provide for protection of patient confidentiality.

Related Legislation:

• SB 19 (Wolk) would establish a statewide registry for Physician Orders for Life Sustaining Treatment. That bill will be heard in this committee.

• SB 149 (Stone) would make investigational drugs available to patients with a terminal illness. That bill will be heard in this committee.

Staff Comments:

Under the bill, a terminally ill patient could use aid-in-dying medication to hasten his or her death. In those cases, there may be some avoided health care costs. However, experience with a similar program in Oregon indicates that a relatively small number of individuals is likely to make use of the program (less than 1,000 people per year, extrapolating from experience in Oregon). Of the participating individuals in Oregon, 90% were enrolled in hospice care at the time of their death. While hospice care does not always preclude the continued use of curative medical interventions, in practice, most hospice patients are no longer using intensive medical services (such as inpatient hospital services). Therefore, avoided health care expenditures are not likely to be significant.

The only costs that may be incurred by a local agency relate to crimes and infractions. Under the California Constitution, such costs are not reimbursable by the state.

Author’s amendments (as adopted May 28, 2015): make a variety of changes to the requirements on physicians, make changes to patient protection requirements, and make technical changes.

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