The California End of Life Option Act is a statute that allows certain terminally ill adults to request and obtain a prescription for medication to end their lives in a peaceful manner. The Act outlines the process of obtaining such medication, including safeguards to protect both patients and physicians.
Governor Jerry Brown signed the Act on October 5, 2015, and it went into effect on June 9, 2016.
Discussing End-of-Life Options with Your Doctor
It is important to discuss your end-of-life wishes with your doctor as early as possible, even before you are diagnosed with a terminal illness. The benefit of doing this even if you are still healthy is that if you ascertain that your doctor does not share your values on this subject, you will have the chance to look for a willing physician while you still have the energy and time to do so.
The best time for this conversation is when you provide your physician with a copy of your advance directive or discuss the use of the Physician Orders for Life-Sustaining Treatment (POLST) form, a non-hospital medical order for people with serious illnesses. If you raise the issue after receiving a terminal diagnosis, your physician may be less receptive.
It is important to have this discussion with your doctor in person. Do not ask their office staff, nurse, or assistant or leave a request on their voice mail. Above all, avoid demanding your physician’s assistance. Under the End of Life Option Act your physician is not required to participate and may have valid reasons for declining.
First, explain to your physician that you believe in being prepared, that you wish to avoid unnecessary suffering at the end of life, and that you would like to make sure that both of you would be on the same page in an end-of-life situation. You may say something like:
“I want to live with as much quality as I can for as long as I can. If I am no longer able to find meaning in life after trying all other reasonable options, I would like to have the option of using California’s physician-assisted dying law that allows me to have medication to hasten my inevitable death.
“I hope that you will honor my decisions at the end of my life and respect my values, as I respect yours. If you will never be willing to honor my request for a medication to hasten my death according to California’s law, please tell me now, while I am able to make choices based on that knowledge.”
Then, ask your physician for a yes or no answer to this question: “If I were terminally ill and wanted to use the California End of Life Option Act, would you be willing to write me a prescription for life-ending medication?”
If you are diagnosed with a terminal illness and wish to use the California End of Life Option Act, you may tell your doctor something like:
“I understand that I have approximately 6 months or less to live and the option to manage the symptoms of my illness in my home with the aid of hospice. I have given lengthy consideration to hastening my inevitable death. Will you honor my request to hasten my death by writing a lethal prescription in accordance with the California End of Life Option Act?”
Regardless of your physician’s response, remember to ask him/her to record your request in your medical record.
If your physician seems reluctant to prescribe but seems unopposed to the concept of physician-assisted dying itself, ask if s/he would be willing to participate as the consulting physician, i.e. the doctor who confirms your diagnosis, prognosis, and mental capacity.
Common responses from physicians and what they may indicate:
- “I will help you,” or “I will be there for you when the time comes.” This may mean “I will refer you to hospice and palliative care,” or “I will be sure you are kept comfortable, but I may not write a prescription for life-ending medication.”
- “Let’s talk about that when the time comes.” or “We can talk later.” or “For now, let’s focus on treatment.” Physicians who make these kinds of statements are stalling or trying to change the subject. More often than not, these physicians will elect not to participate when the time comes.
- “I don’t know anything about this.” Send your physician to this or to Death with Dignity National Center’s website, www.DeathwithDignity.org.
- “My employer will not allow me to participate.” Some physicians work for Catholic or other faith-based health care providers that prohibit participation in assisted dying. Although the law permits providers to prohibit physicians from participating while on their employer’s premises, nothing prevents a physician from participating off the premises. The law also prevents a provider from punishing a physician who does. Many physicians are unaware of these provisions of the law, and even those who are aware may not be comfortable participating under these circumstances.
- “I don’t believe in that.” or “I would never do that.” or “I’m against that.” If your physician declines to participate, you should evaluate your relationship with that doctor. While it is your physician’s right to opt out of participating in the California End of Life Option Act, these kinds of statements are a possible red flag that she may not practice patient-centered care or be less willing to provide you with adequate pain medication or provide an early referral for hospice or palliative (comfort) care. You have the option of switching doctors or continuing treatment while seeking out another physician willing to honor your end-of-life decisions regardless of their personal beliefs.
Talking to Your Family
Every family is different, and many families have had strained relations. However, even if there has been little communication for years, the months or weeks before death is a time when many people attempt to open up to each other. It is amazing how many families come around to reestablish communication, and offer support, as they learn what their relative is struggling with.
It is truly in the best interest of those who will be left behind that you tell your family what you are planning, and give them the option to accept or reject it, or to work out personal past differences. This helps those family members cope better after you die, as they have some good, positive memories.
Even if your family cannot support you or what you are choosing to do, by starting the dialogue you have at least given them the chance to understand and grow. And most families rise to the occasion of help, support, and understanding.
Going Through the Process of Obtaining Medications
To legally obtain a prescription medication to end your life in a peaceful, humane, and dignified manner under the California End of Life Option Act, you must first become a qualified patient, meeting a set of stringent requirements.
Becoming a Qualified Patient
To qualify for a prescription of medication under the California End of Life Option Act, you must be
- a resident of California (see below); and
- 18 years of age or older; and
- mentally competent, i.e. capable of making and communicating your health care decisions; and
- diagnosed with a terminal illness that will, within reasonable medical judgment, lead to death within six months.
You must also must be able to self-administer and ingest the prescribed medication. All of these requirements must be met, and there are no exceptions to them. Two physicians must determine whether all these criteria have been met.
- a state issued identification card or driver’s license; or
- documents showing you rent or own property in the state; or
- a state voter registration; or
- a recent state tax return.
The attending physician must decide whether you have adequately established residency. There is no minimum length-of-residency requirement.
Making the First Oral Request
You may make an oral request for medication under the California End of Life Option Act at any time. The attending physician to whom you make the request must be licensed in the state in which you are making the request. You can rescind the request at any time in the process.
Your attending physician must confirm you meet all of the eligibility criteria. Your physician must also inform you of alternatives, including palliative care, hospice and pain management options, and ask that you notify your next-of-kin of the prescription request. A second, consulting physician must confirm the diagnosis, prognosis, and your mental competence.
If either physician determines that your judgment may be impaired in any way, e.g. by a mental illness or depression, they must refer you for a “mental health specialist assessment,” i.e. a psychological or psychiatric examination.
If your first oral request is authorized, you must wait a minimum of 15 (fifteen) days to make the second oral request.
Making the Second Oral Request
You may make your second oral request any time after the 15 day waiting period.
Making a Written Request
You can make the written request to your attending physician at any time following the first oral request, using the statutory form included in the California End of Life Option Act. However, it is recommended that you only complete and sign the written request after seeing both the attending and consulting physicians and only after they have submitted their respective paperwork. Keep a copy of the written request for your records.
The written request must be witnessed by two individuals, at least one of whom is not related to you, or entitled to any portion of your estate, or your physician, or an employee of a health care facility caring for you.
As with both oral requests, you can rescind the written request at any time.
Obtaining a Prescription
After you complete all of the above steps, your physician will write the prescription. You may fill the prescription at any time, or choose not to.
Deciding Whether to Hasten Your Death Under the Act
Not Using the Medication
Even if you qualify and have prescriptions written, you never have to use the medicine. After the prescription is written, you have a choice to use the medicine any time or to not ever use it. You can leave the prescription at the pharmacy until you decide that you want to make this choice, at the time that is right for you. It is your choice to decide if you ever want to fill and use your prescription. This law is all about giving you this choice as a resident of California.
About one third of qualified terminally ill people decide that they do not want to hasten their death using the prescription. The prescription provides them with peace of mind, knowing if their symptoms get too bad, they can choose to take the medication. Nothing in California’s End of Life Option Act tells a patient that he/she must take the medication after going through all the steps to qualify.
Knowing the Right Time to Take the Medication
You are the only person who can decide if and when you want to take the prescribed medication. This is a decision that is often made by conferring with your family, as they are also aware of the changes happening to you as your disease progresses.
A good time to take the medication is when the quality of life has decreased to an unacceptable or intolerable level, and all that is left for them are days of suffering. The suffering can occur on many levels: pain with every movement, the indignity of having someone you love change your diapers and position your body for you, or the recognition that you are becoming so weak that you might not be able to swallow 4 ounces of liquid for long. It can also include the fear of total loss of control of your life.
Your family will probably be happy to watch with you, monitor your decreasing ability to function, and help you make the decision about when to take the prescribed medication, as your time gets shorter. You will know when the time is right; if the time is never right, that is fine too. A significant number of patients qualify for the life-ending medication but never ingest it.
Completing the Final Attestation Form
The California End of Life Option Act requires that those wishing to take the medication prescribed in accordance with it complete the Final Attestation Form 48 hours prior to taking the medication. The Final Attestation Form is part of the Act.
Being Unable to Take the Medication
There are three scenarios in which you may be unable to take the medication after it has been prescribed:
- Your disease progresses to coma or death.
- Tumors in your brain or certain metabolic problems affect your brain function. If you are experiencing severe and increased confusion, and you have lost the capacity to understand and make decisions, you will no longer qualify to take the medication. On the day you take the prescribed medication, you need to be able to ask for it, and be cognizant of what it is for.
- You are unable to swallow the 4 ounces of liquid within 2 minutes or less (see below). This might occur with progressive overwhelming weakness from end stage illness or from a neurologic disease like ALS.
Taking the Medication
The most frequently prescribed medicine is a large dose of a sleeping medication, most commonly a barbiturate, in powder form. It is mixed with about 4 ounces of liquid before you, the person for whom it is prescribed, drink it. The full amount needs to be ingested within two minutes. Because the medication has a rather bitter taste, have a small glass of a delicious tasting liquid handy to cleanse your palate after drinking the entire amount of life-ending medication.
Most patients fall asleep peacefully about 10 minutes after drinking the life ending medication, and die in 1-3 hours. In about 5 percent of patients, it takes longer than 6 hours to die, but they sleep comfortably the whole time, until death ensues.
Considering Your Insurance
As long as you go through all the steps required by the law to obtain the medication, your life insurance benefits should be unaffected. The cause of your death on your death certificate, for the documentation by the life insurance company, will be listed as the disease that your doctors expect will cause your death in the next weeks or months.
Using the Time Between Qualifying and Using the Prescription
While you are waiting, don’t forget to live your life and look for a little bit of joy in every day. Dying is not for the faint of heart. Your disease has taken away your control over life in almost every aspect: eating, sleeping, pain, loss of ability, money, dignity, you name it. This can be a very discouraging time.
If the California End of Life Option Act seems to offer you a little control over your death, and you think you might want that choice, then it is your legal right. You can begin the process, as soon as the law goes into effect.However, during the days, weeks, months you need to wait before you can accomplish this, remember that you do have some control left. You do have the ability to find some joy, or beauty, or a moment without pain, in every day. You do have the ability to thank those who are helping you through this time. You do have the time to say all the things that other people in your life need to hear before you die. You might even have time for a couple of the items on your bucket-list.
Use this time well. People in car-crash deaths never get to tie up the loose ends or say final goodbyes. Every day has at least one precious moment. We hope you find many.
Exploring Other End-of-Life Options If You Do Not Qualify
Physician-assisted dying is only one of end-of-life options available to you in the state of California. Under certain circumstances you may wish to explore the following additional options:
- Palliative care
- Not starting new treatment(s) or stopping current treatment(s)
- Palliative sedation
- Voluntary stopping eating and drinking
- Information on this page has been adopted from the End of Life Washington’s handout “Talking to Your Doctor About Death with Dignity, Dr. Carol Parrot’s article, “Preparing for the California End of Life Option Act: How to Get Started If You Think You Might Qualify”, and additional content developed by the Death with Dignity National Center and available at www.DeathwithDignity.org.
- The California End of Life Option Act provides for the use of an interpreter by the requesting patient.
- Images by djfrantic and Rennett Stowe. Featured home-page image by KellarW.