What You Should Know About California’s End of Life Options Act
By Michael E Pacheco
As our health care landscape evolves, legislation of medical decisions assumes an increasingly more significant role for individuals and families confronted by life threatening illness. On October 5, 2015, former Governor Jerry Brown signed the California End of Life Option Act; the law grants adults with a life-threatening illness access to aid-in-dying medication. This action from the Brown administration made California the fifth state to enact an aid-in-dying law. With the passage and attempted repeal of the California End of Life Option Act, many are confused about the law.
Qualifications for the End of Life Option Act
California’s End of Life Option Act is modeled after Oregon’s 20-year-old medical aid-in-dying law, and has regulations similar to both Washington and Vermont. The eligibility requirements of the law are the same in each authorized state. In California the patient must be a resident, 18 years or older, have a diagnosis from a primary care physician of an incurable and irreversible disease which will result in death within six months, and be mentally capable of making informed healthcare decisions. The patient must be able to self-administer the aid-in-dying drug. Age or disability factors alone do not qualify a patient.
The patient must voluntarily request the prescription from a primary care physician. The request is not legal if made on behalf of the patient through a power of attorney, an advance health care directive, a conservator, health care agent, or any other legally recognized health care decision maker.
Several safe guards are built into the law. The first is a requirement that doctors discuss the request alone with the patient. This mandate helps confirm the patient’s request is voluntary and does not arise from coercion. The patient is not required to tell their family members about their decision. Doctors are also legally required to discuss how the aid-in-dying drug will affect the patient and the fact that death might not come immediately. The doctor must make sure the patient knows he/she can withdraw the request at any time, and does not have to take the aid-in-dying medication.
Hospice as an Alternative
The doctor should also discuss realistic alternatives to taking the medication. These alternatives include pain and symptom management, and involving hospice care. Hospice services treat the physical, medical, emotional, and spiritual needs to support the patient and the family. The focus is on reducing pain, controlling symptoms, and restoring personal dignity, and control over the dying process.
The Process of Approval
The patient must make two oral requests, at least 15 days apart, directly to the doctor. An additional request, signed by two witnesses, must be made in writing. The law also requires a second opinion. Both physicians must verify the eligibility of the patient. If either physician thinks the patient’s ability to make medical decisions could be impaired, the patient must also see a mental health specialist. People with Alzheimer’s and other dementias are prohibited by law to use aid in dying.
By law, the physician cannot give a written prescription directly to the patient or their representative. The patient can take the drug anywhere they want, but not in public. Most of the process will happen in the doctor’s office and the patient’s home; not in the hospital. California requires a 48-hour attestation form for patients. Within 48 hours before ingestion, the patient must affirm his/her intention to use the medication and that they understand the medication results in death.
There are some unclear areas of the legislation. The legislation is not specific about which aid-in-dying drug(s) a physician can prescribe. After approval for aid-in-dying, the cost of some medications rose to $3,000. The type and dosage of aid-in-dying medication prescribed are not universal and can vary with each patient. Under optimal conditions, after self-administering the medication, the patient typically falls asleep with 20 minutes and dies peacefully within 60 to 120 minutes after ingestion.
In its current form, the actual implementation of the law is also vague. A doctor or nurse is not required to supervise patient deaths. They are also not required to have training or education about helping patients who are seeking to exercise this option. In Fresno, persons using hospice services may request a hospice provider be present at the time of death. However, many hospices require their hospice care team leave the room while the drug is administered. After ingestion, the hospice care team returns to the patient and family.
End of Life Option Act is Voluntary
Participation is voluntary for all parties involved; this includes patients, health providers, and health systems. Insurance companies have leeway in determining which if any costs associated with aid-in-dying drugs or physician fees they will cover. Medi-Cal will cover care and medication, but may require using certain Medi-Cal providers. Due to federal regulations, the Veteran’s Administration and Medicare do not cover in aid in dying services. Similarly, many faith based hospital systems have elected not to participate. Persons living in assisted living facilities are prohibited by law to keep aid-in-dying medication in their room.
According to the law, a death resulting from self-administering aid-in-dying medication is not suicide or assisted suicide. Wills, insurance, contracts and annuities are not affected if an approved patient uses the aid-in-dying medication.
Who Used the Act?
The California Department of Public Health collects information on persons using the End of Life Options Act. By the end of 2017, approximately 768 Californians received prescriptions for aid-in-dying medication. About 63% self-ingested the medication. Most are white, educated, and over the age of sixty. Men and women equally utilize the law. Cancer and neuromuscular disorders, such as Lou Gehrig’s disease, top the reasons for the request. A third of people who receive medical aid-in-dying prescriptions never take the medication, but benefit from the peace of mind it provides them to have control over their suffering, should they decide to utilize it.
For more information about the Aid in Dying Law, visit the Coalition for Compassionate Care of California
Michael E. Pacheco is graduating Spring 2019 from Fresno State with a BS in Health Science and Minor in Gerontology. His future plans are to obtain a PHD in Health Informatics.