A Family Physician’s Guide to the
End-of-Life Option Act
The End of Life Option Act, signed by Governor Jerry Brown October 5, 2015 went into effect on June 9, 2016. The Act, described archaically sometimes as permitting “physician-assisted suicide,” authorizes a terminally ill adult who meets specific qualifications to request and receive a drug for the purpose of hastening death. It establishes procedures for making the request and procedures to follow for physicians who agree to prescribe aid-in-dying drugs. It also establishes procedures for physicians, groups and health care systems to opt out of participation.
CAFP took a neutral position on the bill, recognizing the spectrum of opinions of our members would have on this controversial issue. Now that it is law, however, we are duty bound to provide information to our members, particularly since it governs their activities no matter which side of the issue they are on. CAFP urges family physicians to learn about the law whether or not they intend to prescribe aid-in-dying drugs or otherwise assist patients interested in making a request.
Summary of the End-of-Life Option Act, Featuring two CAFP Members Who Are Preparing their Practices for Requests
Introduction to the End-of-Life Option Act
Qualified Patients: Who Can Make the Request?
A terminally ill adult with the capacity to make medical decisions may make a request to receive a prescription for an aid-in-dying drug under the following circumstances:
- The individual’s Attending Physician, defined below, diagnosed the individual with a terminal disease.
- The individual voluntarily expressed the wish to receive a prescription for an aid-in-dying drug.
- The individual is a resident of California and is able to establish residency through one of the following:
- Possession of a California driver’s license or other identification issued by the State of California.
- Registration to vote in California.
- Evidence that the person owns or leases property in California.
- Filing of a California tax return for the most recent tax year.
- The individual documents his or her request in a specified form.
- The individual has the physical and mental ability to ingest the aid-in-dying drug without assistance.
Patient Procedures for Requests
An individual seeking to obtain a prescription for an aid-in-dying drug must make two oral requests, a minimum of 15 days apart, and a written request in a specified form directly to his or her Attending Physician. The request must be signed and dated, in the presence of two witnesses, by the individual seeking the aid-in-dying drug. The two witnesses also sign the form, attesting that:
- The individual is personally known to them or has provided proof of identity.
- The individual voluntarily signed the request in their presence.
- The individual is of sound mind and not under duress, fraud or undue influence.
- The witnesses are not the individual’s Attending Physician, Consulting Physician or mental health specialist.
Only one witness may be related to the qualified individual by blood, marriage, registered domestic partnership or adoption or be entitled to a portion of the individual’s estate and only one may own, operate or be employed at the health care facility where the individual is receiving medical treatment or resides. As described in the attestation, the witnesses cannot be the physician or mental health specialist for the individual.
Qualified Physicians: Who Can Respond to the Request?
Two physicians must respond to each request. The Attending Physician is defined by the Act as “the physician who has primary responsibility for the health care of the individual and treatment of the individual’s terminal disease.” The definition raises an important, as-of-yet unanswered question, about whether a primary care physician fits that definition. A patient may have a long-standing relationship with a family physician, but be terminally ill with cancer and being treated by an oncologist. CAFP is seeking advice from multiple sources, but, for the moment, consider that definition carefully and the potential legal risk if you are not primarily responsible for the treatment of the individual’s terminal disease.
The Consulting Physician is defined by the Act as “a physician who is independent from the Attending Physician and who is qualified by specialty or experience to make a professional diagnosis and prognosis regarding an individual’s terminal disease.” We are comfortable that family physicians will often qualify.
The Attending and Consulting Physicians cannot be related to the requesting patient by blood, marriage, registered domestic partnership or adoption or be entitled to a portion of the individual’s estate.
Step 1: Consider Whether the Patient Is Qualified
Before prescribing an aid-in-dying drug, the Attending Physician must determine whether the patient has the capacity to make medical decisions, has a terminal disease, has voluntarily made the request and is a Qualified Patient.
If there are indications of a mental disorder, the Physician must refer the individual to a mental health specialist for an assessment. If such a referral is made, no aid-in-dying drug can 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.
Step 2: Inform the Patient
Before prescribing an aid-in-dying drug, the Attending Physician must inform the patient of his or her medical diagnosis and prognosis, the potential risks associated with ingesting the aid-in-dying drug, the probable result of ingesting the drug, the possibility that the patient may choose to obtain the drug but not take it and the feasible alternatives or additional treatment options, including, but not limited to, comfort care, hospice care, palliative care and pain control.
Step 3: Referral to the Consulting Physician
The Attending Physician must then refer the patient to a Consulting Physician. The Consulting Physician must examine the patient and his or her relevant medical records and confirm in writing the diagnosis and prognosis and that the patient has the capacity to make informed medical decisions and is acting voluntarily. If there are indications of a mental disorder, the Consulting Physician must also refer the individual for a mental health specialist assessment. The Consulting Physician must document these findings and submit them, along with a Consulting Physician Compliance Form, to the Attending Physician.
Step 4: Patient Requests; Patient Counseling
After the patient visits the Consulting Physician, he or she must return to the Attending Physician for counseling. Remember that the patient must make two oral requests for the aid-in-dying drug a minimum of 15-days apart and schedule this visit accordingly. The patient must also submit a written request in a specified form directly to his or her Attending Physician. The Attending Physician must confirm that the patient’s request does not arise from coercion or undue influence by another person by discussing with the patient, outside of the presence of any other persons except for an interpreter as necessary, whether or not the patient is feeling pressured by another person.
The Attending Physician must counsel the patient about the importance of all of the following:
- Having another person present when he or she ingests the aid-in-dying drug prescribed pursuant to this part.
- Not ingesting the aid-in-dying drug in a public place.
- Notifying the next of kin of his or her request for an aid-in-dying drug. A patient who declines or is unable to notify next of kin shall not have his or her request denied for that reason.
- Participating in a hospice program.
- Maintaining the aid-in-dying drug in a safe and secure location until the time that the qualified individual will ingest it.
The Attending Physician must inform the patient that he or she may withdraw or rescind the request for the 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. The Attending Physician must verify, immediately before writing the prescription for an aid-in-dying drug, that the patient is making an informed decision.
Step 5: Final Attestation and Prescription
The Attending Physician must give the patient the Final Attestation form, with the instruction that the form be filled out and executed by the patient within 48 hours prior to the patient taking the aid-in-dying drug. This requirement is unique to California law; Washington and Oregon, which have similar aid-in-dying laws, do not have this requirement. CAFP suggests counselling patients that they can always change their minds. Having the form and prescription in no way creates an obligation to ingest the aid-in-dying drug.
The Attending Physician can then prescribe the aid-in-dying drug.
Step 6: Complete the Attending Physician Follow-Up Form
Within 30 calendar days following the patient’s death from ingesting the aid-in-dying drug or any other cause, the Attending Physician must submit the Attending Physician Follow-Up Form.
Step 7: Document and Report
The patient’s medical record must document:
- All oral and written requests for aid-in-dying drugs.
- The Attending Physician’s diagnosis and prognosis and the determination that the patient has the capacity to make medical decisions, is acting voluntarily and has made an informed decision, or that the Attending Physician has determined that the patient is not qualified.
- The Consulting Physician’s diagnosis and prognosis and verification that the patient has the capacity to make medical decisions, is acting voluntarily and has made an informed decision, or that the Consulting Physician has determined that the patient is not qualified.
- A report of the outcome and determinations made during a mental health specialist’s assessment, if performed.
- The Attending Physician’s offer to the patient to withdraw or rescind his or her request at the time of the patient’s second oral request.
- A note by the Attending Physician indicating that all requirements listed here for both the Attending Physician and Consulting Physician have been met and indicating the steps taken to carry out the request, including a notation of the aid-in-dying drug prescribed.
- The Final Attestation Form.
Within 30 calendar days of writing a prescription for an aid-in-dying drug, the Attending Physician must submit to the State Department of Public Health a copy of the patient’s written request, the Attending Physician Checklist and Compliance Form and the Consulting Physician Compliance Form. And within 30 calendar days following the patient’s death from ingesting the aid-in-dying drug or any other cause, the Attending Physician must submit the Attending Physician Follow-Up Form.
The patient’s written request must be in the same language as any conversations, consultations or interpreted conversations or consultations between the patient and his or her Attending or Consulting Physicians. Otherwise, an interpreter’s declaration must be attached.
The Medical Board has the option to update the forms and the Department of Public Health will publish updated forms online.
Physician Protections and More
The Act provides broad protections for physicians from civil or criminal liability, censure, discipline, suspension, loss of license, loss of privileges, loss of membership or other penalty for participating in good faith compliance with the law OR for refusing to participate.
The Act prohibits a provision in a contract, will or other agreement from being conditioned upon or affected by a request for an aid-in-dying drug. A patient’s request for the drug and ingestion of the drug is NOT considered a suicide, according to the law, and cannot affect health insurance or life insurance. The Association of California Life and Health Insurance Companies has issued a press release acknowledging that particular provision of the law and noting that similar laws in other states have not produced claims disputes.
The Act protects people who are present or prepare the aid-in-dying drug, so long as they do not assist with the ingestion of the drug. The Act makes it a felony to alter or forge a request or destroy a withdrawal or rescission, however.
Providers may opt out of participating without risk of liability or other penalties. The new law specifies that providers can refuse to participate in activities authorized under the law, to inform a patient regarding his or her rights under the law and to refer an individual to a physician who participates in activities authorized under the law.
Health care providers may prohibit employees, independent contractors or other persons or entities, including other health care providers, from participating in activities authorized under the law while on premises owned or under the management or direct control of the prohibiting health care provider or while acting within the course and scope of any employment by, or contract with, the prohibiting health care provider. The prohibiting health care provider must first give notice of the policy prohibiting participation. If the provider fails to provide notice, he or she cannot enforce the policy.
The prohibiting health care provider may take action against an individual or entity that violates the prohibition including loss of privileges, loss of membership or other action authorized by the bylaws or rules and regulations of the medical staff; suspension, loss of employment or other action authorized by the policies and practices of the prohibiting health care provider; termination of any lease or other contract between the prohibiting health care provider and the individual or entity that violates the prohibition; imposition of any other nonmonetary remedy provided for in any lease or contract between the prohibiting health care provider and the individual or entity in violation of the policy.
The State Department of Public Health
The State Department of Public Health will collect the submissions of Attending Physicians and, beginning July 1, 2017, shall report on the information collected. The information collected shall be confidential, however, and shall be collected in a manner that protects the privacy of the patient, the patient’s family and any medical provider or pharmacist involved with the patient. The information shall not be disclosed, discoverable or compelled to be produced in any civil, criminal, administrative or other proceeding.
California’s right-to-die law has been embraced by many around the state — from scores of patients and their families to individual doctors, some hospice caregivers and several health care systems.
But as positive as the reception appears to be so far, plenty of challenges remain, according to testimony offered from experts and other stakeholders during an almost 3½ hour-long legislative hearing at the state capitol on Wednesday.
Signed into law by Gov. Jerry Brown in October 2015, the End of Life Option Act allows any mentally competent California adult, diagnosed with less than six months to live, to end their life with a lethal drug prescription from their physician.
Yet several of those who spoke Wednesday at the first Select Committee on End of Life Health Care meeting, chaired by Assemblywoman Susan Talamantes Eggman, D-Stockton, said terminally ill patients still have a hard time finding doctors willing to prescribe the lethal prescription drugs since the law went into effect in June 2016.
And even if they manage to locate the two doctors needed to sign off on the law’s required documentation, they may face unnecessary delays in obtaining the drugs from a limited number of pharmacies.
Worse, by the time the dying patient has made his or her request known, they may be too sick to make it through the law’s required 15-day-waiting period to ensure that patients are not making an impulsive decision.
Dr. Lynette Cederquist, a hospice and palliative medicine specialist at UC San Diego, said in her experience, the most surprising aspect for her in these cases is the sense of urgency patients have once they made the decision to use the law.
“Even a two- to three-day delay seems to be excruciating,” she said, “given the multiple steps required in the process. … And there will be inevitable delays.”
“I think the challenge is balancing safety with (those) hurdles,” Cederquist said.
Eggman, a co-author of the law, pointed out that that “is what we are trying to do with the implementation.”
Cederquist also said it’s one thing if the patient is still able to visit their doctor. But for patients to make several visits as their health declines is “very burdensome,” she said.
She suggested the possibility of using telemedicine for some visits, and reducing the number of days from 15 days, possibly to seven to 10 days.
One fear that many opponents of the law had harbored — that dying patients would be coerced to use the law — seems not to be playing out, according to those who testified.
Doctors, hospice caregivers, and hospital systems representatives said Wednesday that medical aid in dying is just one option among many.
The broader medical goal, they emphasized, is making sure that patients have access to all forms of care, from pain management to palliative care and hospice care — and aid in dying if that proves to be the appropriate measure.
If anything, said Dr. Catherine Forest of Stanford Health Care, the law has helped break down barriers about the process of dying with patients.
“It allows us to speak about palliative medicine and hospice care in a much more accessible way,” Forest said.
The law also requires the California Department of Public Health to collect data about those who request to use the law.
In the first six months — from June 9, 2016 through Dec. 31, 2016 — data compiled by the health department showed that almost 200 Californians received the lethal drug prescription, but only 111 ingested it. Newer data will be released in June.
Nearly 60 percent of those who asked their doctor for the end-of-life remedy were suffering from cancer; 18 percent had been diagnosed with a neuromuscular disorder like ALS or Parkinson’s disease, while many suffered from heart and respiratory diseases; and the median age of people who used the new law was 73. Most of those who used the prescription were white.
But some speakers, including Cindy Cain, an assistant professor at the UCLA School of Public Health who has been researching data related to the law, said there’s a need for more information to better understand how the End of Life Option Act is being implemented around California.
“We do not have an adequate estimate of the health care systems that have adopted strategies,” she said. “Patients lack knowledge about the process and wish they had more information about it.”
All of the University of California hospitals are participating in the End of Life Option Act, with protocols in place to help these patients.
Dr. Nathan Fairman, a psychiatrist with a subspecialty in hospice and palliative medicine at UC Davis, noted that the university has developed a patient navigator system to ensure a fluid process.
The system is bolstered by several layers of oversight and accountability built into the UC Davis policy, he said, noting that a patient request to use the law triggers a notification of the UC Davis legal department, bioethics department, chief medical officer, and senior pharmacists “just to let them know there is a new case in the pipeline.”
Senator Bill Monning, D-Carmel, who introduced the End Of Life Option Act, and former Senator Lois Wolk, D-Davis, a co-author, both sat in on Wednesday’s meeting.
Monning later said he was pleased to hear the stories from many of those who spoke about the relief the law had given members of their families.
He was also impressed by representatives of the larger health care systems, including Kaiser Permanente Northern California, and the coordinated teams they have assembled to deal with the law.
“It shows just how serious they have taken it up throughout different disciplines … and fortunately the big institutions have the resources and the ability to do that, which is less available to small group practices or those in solo practices,” Monning said.
“But I think these academic centers are where we can develop best practices.”