Existing law, the End of Life Option Act, authorizes 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 an aid-in-dying drug for the purpose of ending his or her life. Prior to prescribing an aid-in-dying drug, existing law requires the attending physician to make certain determinations and verify, immediately before writing the prescription for an aid-in-dying drug, that the qualified individual is making an informed decision. Existing law requires the State Department of Public Health to create a report with information collected from attending physician followup forms and to post that report to its Internet Web site. Existing law requires that information to include, among other things, the underlying illness of the qualified individual. Existing law authorizes the Medical Board of California to update the attending physician checklists and forms required under these provisions.

Prior to prescribing an aid-in-dying drug, this bill would require an attending physician to request that a qualified individual inform the physician orally or in writing as to the motivating reason or reasons for receiving an aid-in-dying drug, as specified. The bill would require that information to be included in the report of the department described above. The bill would further require that report to This bill would require the report described above to further include additional information about each attending physician and the length of time that he or she provided care to a patient, and the areas of practice of each physician who wrote a prescription for an aid-in-dying drug, the motivating reason or reasons behind a patients decision to request the aid-in-dying drug, as specified, and the number of patients who received a mental health specialist assessment. assessment prior to receiving the aid-in-dying drug. The bill would require the Medical Board of California to make any necessary changes to the applicable forms to conform with these requirements.

Existing law, the End of Life Option Act, authorizes 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 an aid-in-dying drug for the purpose of ending his or her life. Prior to prescribing an aid-in-dying drug, existing law requires the attending physician to make certain determinations and verify, immediately before writing the prescription for an aid-in-dying drug, that the qualified individual is making an informed decision. Existing law requires the State Department of Public Health to create a report with information collected from attending physician followup forms and to post that report to its Internet Web site. Existing law requires that information to include, among other things, the underlying illness of the qualified individual. Existing law authorizes the Medical Board of California to update the attending physician checklists and forms required under these provisions.

Prior to prescribing an aid-in-dying drug, this bill would require an attending physician to request that a qualified individual inform the physician orally or in writing as to the motivating reason or reasons for receiving an aid-in-dying drug, as specified. The bill would require that information to be included in the report of the department described above. The bill would further require that report to include additional information about each attending physician and the length of time that he or she provided care to a patient, and the number of patients who received a mental health specialist assessment. The bill would require the Medical Board of California to make any necessary changes to the applicable forms to conform with these requirements.

SENATE COMMITTEE ON HEALTH

Senator Ed Hernandez, O.D., Chair

BILL NO: SB 1336

SUBJECT: Public health: End of Life Option Act

SUMMARY:

Requires the annual End of Life Option Act report published by the Department of Public Health (DPH) to include areas of practice of each physician who wrote prescriptions for aid-in-dying drugs; the motivating reasons behind a patient’s decision to request the aid-in-dying drug; and, the number of patients who received a mental health specialist assessment prior to receiving the aid-in-dying drug. Eliminates the requirement that the annual report be based upon information that is provided to DPH and on DPH’s access to vital statistics.

Existing law:

1. Establishes the End of Life Option Act (Act) which permits a competent, qualified individual who is an adult 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, a written request signed by two witnesses is provided to his or her attending physician, the attending physician refers the patient to a consulting physician to confirm diagnosis and capacity to make medical decisions, and the attending physician refers the patient to a mental health specialist, if indicated. [HSC §443-443.22]
   
2. Requires, within 30 calendar days of writing a prescription for an aid-in-dying drug, the attending physician to submit to DPH a copy of the qualifying patient’s written request, the attending physician checklist and compliance form, and the consulting physician compliance form. Requires, within 30 calendar days following the qualified individual’s death from ingesting the aid-in-dying drug, or any other cause, the attending physician to submit the attending physician follow-up form to DPH. [HSC §443.9]
3. Requires DPH to collect and review the information submitted pursuant to 2) above. Requires the information to be confidential and collected in a manner that protects the privacy of the patient, the patient’s family, and any medical provider or pharmacist involved, and prohibits the information from being disclosed, discoverable, or compelled to be produced in any civil, criminal or administrative or other proceeding. [HSC §443.19]
   
4. Requires DPH to create a report with the information collected from the attending physician follow up form on or before July 1, 2017 and each year thereafter, and post the report on its Internet Website. Requires the report to include, but not be limited to, all of the following based on the information that is provided to DPH and on DPH’s access to vital statistics:
   1. The number of people for whom an aid-in-dying prescription was written;
   2. The number of known individuals who died each year for whom aid-in-dying prescriptions were written, and the cause of death of those individuals;
   3. For the period commencing January 1, 2016, to and including the previous year, cumulatively, the total number of aid-in-dying prescriptions written the number of people who died due to use of aid-in-dying drugs, and the number of those people who died who were enrolled in hospice or other palliative care programs at the time of death;
   4. The number of known deaths in California from using aid-in-dying drugs per 10,000 deaths in California;
   5. The number of physicians who wrote prescriptions for aid-in-dying drugs; and,
   6. Of people who died due to using aid-in-dying drugs, demographic percentages organized by age at death, education level, race, sex, type of insurance, and underlying illness. [HSC §443.19]
      
5. Sunsets the provisions above on January 1, 2026. [HSC §443.215]

This bill:

1. Includes the following as required information in the annual report prepared by DPH:
   1. Areas of practice of each physician who wrote prescriptions for aid-in-dying drugs;
   2. The motivating reason or reasons behind a patient’s decision to request the aid-in-dying drug pursuant to the responses given to question 15 of the attending physician follow-up form, as specified; and,
   3. The number of patients who received a mental health specialist assessment prior to receiving the aid-in-dying drug.
      
2. Eliminates a requirement that the annual report be based upon information that is provided to DPH and on DPH’s access to vital statistics.
   
3. Requires the Medical Board of California to make changes to the physician reporting forms as necessary to capture the information needed to fulfill the reporting requirement.

FISCAL EFFECT:

This bill has not been analyzed by a fiscal committee.

COMMENTS:

1. Author’s statement. According to the author, SB 1336 seeks to improve the quality of data gathered and reported regarding the implementation of the Act. The current reporting requirements are limited in scope, and the data currently reported by physicians prescribing the aid-in-dying drug does not paint a complete picture of how the Act is working. This bill would rectify existing deficiencies in reporting requirements by adding several key pieces of information to the mandated DPH annual report. The added information SB 1336 would include is critical in enabling policymakers and researchers to properly assess the performance of the Act.
2. Annual report. California’s Act became effective on June 9, 2016. DPH’s first report presents data reported from physicians received between June 9, 2016 and December 31, 2016, and reflects information on individuals who were prescribed aid-in-dying drugs in 2016. For the partial year ending December 31, 2016, 191 individuals received prescriptions under the Act and 111 individuals died following their ingestion of the prescribed drugs. Of the 111 individuals, 87.4% were 60 years of age or older, 96.4% had health insurance and 83.8% were receiving hospice and/or palliative care. Over 250 individuals started the end-of-life option process, 173 unique physicians prescribed 191 individuals the aid-in-dying drugs. While 111 died following ingestion, 21 individuals died without ingestion of the drugs. It was undetermined at the time of the report publication of the outcome of the remaining 59 individuals who were prescribed the drugs. The rate for those who died following ingestion of aid-in-dying drugs was 6.06 per 10,000 total deaths based on 183,265 deaths during the same period. Over 54% who died after ingestion were female, over 72% had some college, a degree, or doctorate, 89.5% were white, the majority were covered by Medicare and/or Medi-Cal, 18.9% had private insurance and 3.6% were uninsured. Over 58% had malignant neoplasms, 18% had a neuromuscular diagnosis and 14.4% had heart or lung respiratory disease.
   
3. The Act at one year. In September of 2017 a convening was held in Sacramento of 100 stakeholders including doctors, nurses, family members, experts in palliative care, ethics, disability rights and others to discuss state implementation of the Act; the experience of patients, caregivers and health care providers; and to identify best practices. Event organizers (Coalition for Compassionate Care, UCSF Medical Center, UCLA health, and others) indicated that a notable aspect of the convening was that parties of all political stripes expressed agreement on the need for DPH to be more transparent in sharing the Act data it collects, and requested data be shared either through an updated or additional report from DPH or de-identified raw data that could be released to independent researchers for analysis. The data elements requested are whether or not the patient informed the family, whether a mental health evaluation was performed, details of drugs prescribed, patient concerns that motivated the request, whether emergency medical system (EMS) was called, whether a physician or trained health care provider was present at the time of ingestion, setting or location of death, time from ingestion to unconsciousness, time from ingestion to death, complications form ingestion, if present, and whether or not the patient informed their family. Two letters have been submitted to DPH from event organizers requesting the release of these data.
4. Attending physician follow-up form. The attending physician follow-up form contains 15 questions to be filled out if the patient died from ingesting the aid-in-dying drug. The first ten are to be completed if the physician (or another licensed health care provider) was present at death. These questions include details about where and when the patient ingested the aid-in-dying drug, as well as the time between ingestion and unconsciousness and death, if complications occurred, if EMS was activated, and if the patient was receiving hospice. The remaining five questions include the date that the prescription was written, if the patient was receiving hospice at the time of the initial request, and what type of health coverage the patient had. Question 15 specifically asks the doctor to indicate if the patient expressed concerns about the following that may have contributed to his or her decision to request the prescription: a concern about his or her terminal condition representing a steady loss of autonomy; the decreasing ability to participate in activities that made life enjoyable; the loss of control of bodily functions; persistent and uncontrollable pain and suffering; a loss of dignity. There is a space for indicating any other concerns. The attending physician is to indicate “yes,” “no,” or “I don’t know” in response to each concern.
5. Double referral. This bill is double referred. Should it pass out of this committee, it will be referred to the Senate Judiciary Committee.
6. Prior legislation. AB 15 2x (Egg man, Chapter 1, Statutes of 2015) establishes the Act.
   
7. Support. The Alliance of Catholic Health Care writes that DPH is responsible for releasing annual reports detailing Act cases, but the information reported is limited and provides an incomplete picture of how the Act is working. The existing reporting requirements include only information regarding the number of prescriptions written, the number of patients who died and their cause of death, along with the age, education level, race, sex, type of insurance and underlying illness of patients. If we are to fully understand how this statute is being implemented, additional data is needed. This bill is a modest measure, which simply seeks to collect information regarding the areas of practice of each physician who wrote a prescription for an aid-in-dying drug, the motivating reason behind a patient’s decision to request the aid-in-dying drug, and the number of patients who received a mental health specialist assessment prior to receiving the aid-in-dying drug. These are basic, relevant data points, which is critical in supporting policymakers to properly assess the performance of the Act. It is important to note that even with the passage of this measure California will still be capturing and sharing less data than the states of Oregon and Washington.
8. Opposition. Compassion & Choices writes that this bill will discourage physicians from practicing this compassionate end-of-life option and make it more difficult for dying patients to access the law by creating unnecessary and invasive reporting requirements. California doctors are already stating that the reporting requirements are too burdensome and this would further discourage doctors. Mandating doctors to identify their areas of practice is an overreach into the practice of medicine. This is a clear attempt by opponents of medical aid in dying to make it more difficult for patients to use the Act to deter physicians from participating, and collect data they believe will ultimately help them repeal the Act. During a hearing in January, held by the Assembly Select Committee on End of Life Health Care, there was testimony that revealed the process for terminally ill patients to obtain the medication is too complicated and burdensome. Those looking for medical aid in dying already find it difficult to find a doctor who will prescribe the medication, experience long waiting periods, and deal with a large amount of paperwork. This bill will only exacerbate these hurdles.

SUPPORT AND OPPOSITION:

Support: Alliance of Catholic Health Care

Oppose: Compassion & Choices

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