by Carol Parrot, MD
Dr. Carol Parrot is an anesthesiologist who has practiced in western Washington state for 32 years, both in private practice and the university setting. In addition, she participated in numerous medical missions to Third World countries, for cleft lip and palate repair. Since her retirement in 2012, she has remained licensed, and her practice is devoted solely to Death with Dignity patients throughout Washington state, serving as an attending or consulting physician. She has lectured on Death with Dignity nationally, and given testimony before legislators considering the bill.
Dr. Parrot has compiled this Q&A based on the questions she hears her patients ask about the Washington Death with Dignity Act to help California residents with preparing for the End of Life Option Act, which takes effect on June 9, 2016.
California’s End of Life Option Act is scheduled to begin June 9. It offers dying patients the option to obtain life-ending medication from a licensed, participating California physician.
Who can qualify and use the California End of Life Option Act?
The law requires that you first be a legal resident of California. In addition, you must have a terminal illness and be expected to die of it within 6 months, and you must be of sound mind and able to fulfill all the steps required by the law. You must also be capable of self-ingesting the medicine. That means you must be able to swallow about a half cup of medicine in about 2 minutes or less. People with end-stage neurologic diseases might have a problem with this last requirement.
People with bad pain but no terminal diagnosis, people with Alzheimer’s disease, or people who are not mentally competent (because of psychiatric disease, mental disability, or those who are found to be legally incompetent by court hearing) cannot qualify to use the law.
How near death do I have to be to start the process under the End of Life Option Act?
You need to be within 6 months of death, as agreed upon by two independent, licensed physicians. If you think you might be interested in using life-ending medication, it is better to start working on this sooner than later. In Washington and Oregon, the average time it takes for a patient to qualify for the law and get the prescriptions written, is between 45 and 50 days.
Even if you qualify and have prescriptions written, you never have to use the medicine. After the prescriptions are written, you have the choice available to you to use the medicine any time or to not use it ever.
Are there people who do not qualify to use the law?
Yes, people who have a great deal of pain but no life-threatening illness or those with a mentally or (in some cases) physically disabling disease, or people who may be elderly and have numerous diseases but no life-threatening illness, will not qualify for using the law. The law requires that the patient has a 6-month terminal diagnosis, is of sound mind, and is able to self-ingest the medication.
Do I have to wait until June 9 to get started?
No. You can start talking to your doctors right away.
First of all, you need to find out if you are expected to live more than 6 months without treatment. If the answer is yes, you will not qualify for the law at this time. If the answer is no, because your doctors expect you to die within 6 months, then you need to ask your doctor if he or she is willing to participate in the End of Life Option Act. If the first doc says yes, you can now ask another of your (probably many) doctors if he/she will participate. You need two licensed doctors to certify that you are within 6 months of death. One of those physicians will need to be willing to learn about the details of the law, and walk you through all the tasks required in the law. Make sure one of the two doctors who agree to help you is willing to do this. That doctor will be your attending physician for the law, and is the person who will be writing the life-ending medication prescription for you. The second certifying doctor will be the consulting physician under the law who simply has to certify that you are within 6 months of death.
Though the doctors helping you cannot start the process required by law until June 9, it might take that long to find two doctors who are willing to provide the service for you. Not many doctors know about the law yet, or what is required. The law says every physician has the choice not to participate. So start talking about it. Any licensed California physician is allowed to participate if he or she agrees. Ask the doctors who are providing care for you, be it your oncologist, or hospice physician, or neurologist.
While you may be receiving care from a nurse practitioner or a physician’s assistant, these healthcare professionals are not allowed to act as licensed physicians for the End of Life Options law.
What happens if I cannot find two doctors to participate?
There is one doctor in the San Francisco Bay area who is in the process of starting up a practice dedicated to helping patients at end of life who cannot find another doctor to write the prescriptions. He, or other motivated doctors, may agree to be your attending physician under the law if you cannot find two of your own doctors to help you.
Is there a patient help line in California?
If you run into a brick wall, there will be a help line that will answer questions for California residents, provided SB 1002, currently pending in the California Senate, passes. The bill would establish a toll-free telephone line, staffed by the California Department of Public Health, providing information about the End of Life Option Act. Until then, call the Death with Dignity National Center at 503.228.4415.
Does this mean I can skip signing up for hospice?
No! Look into joining hospice, right away. If your doctor has told you that you have a 6-month terminal diagnosis, you should qualify for hospice support immediately. You don’t need to make use of any hospice services soon, it just helps to be approved so you can get support quickly when you need it. Ask your regular physician for a hospice referral, and get that started if you can.
Hospice not only offers lots of support for you as your disease progresses, e.g. a home hospital bed, home oxygen, meds, nursing care, or spiritual support, but also has many services available to support your family members.
If you later qualify for the End of Life Option Act but decide not to use the life-ending medication that is prescribed, hospice will be able to offer you comfort care and increased pain medication, if you need them.
Can the law be used with Advance Directives?
Advance Directives are legal documents that describe what a dying person wants done (or not done) medically if he/she can no longer communicate. The California End of Life Option Act cannot be used under Advance Directives, as the person is no longer of sound mind when the advance directives kick in.
What does the law say that I have to do?
The California law requires you to find two doctors who agree that you have 6 months or less to live, without further treatment of disease. As soon as you think you want to start the process, and any doctor has given you that 6 month terminal prognosis, ask the doctor to document your request in your medical chart, starting June 9. This is very important, as it becomes your first oral request to use the law. Even a doctor who does not want to participate under the law can document this first verbal request and it will count as the starting date in your qualification. Remember, you cannot make your first request until June 9, 2016, as that is the date the law will be implemented in California.
You need to make a second verbal request to your attending physician at least 15 days after your first documented physician request.
You also need to sign a written request for medication, which documents that you know what disease you have, that you have less than 6 months to live, and that you have been informed of alternative choices available to you. However, you cannot sign this paper until after you have been seen by both of your participating physicians.
Is the medicine a magic pill?
No. The medicine is a very large dose of a sleeping medication, most commonly a barbiturate, in powder form. It is mixed with liquid before you, the person for whom it is prescribed, drink it, and it has a rather bitter taste. The full amount needs to be ingested in a minute or two. I often suggest that my patients have a small glass of a delicious tasting liquid nearby, to cleanse their palates, 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.
Does the medicine always work?
Oregon, Washington, and Vermont have very similar laws, and in the last 18 years, over 2,000 patients have legally received life-ending medications in these states. During that time, there have been fewer than 5 patients who have taken the medication and who have not died. They may have ingested only a portion of the medication before they fell asleep, or they may have mixed the medications too far in advance and let it sit on a shelf, which caused a decrease in potency or crystallization. In one case more than 15 years ago, an inadequate dose for the patient’s weight was probably prescribed.
What other options do I have available if I don’t want to use the life ending medication?
Hospice works with you to provide support and pain relief, as you near the end of life.
Palliative sedation is sometimes available. This provides IV pain and sedative medication if you are a hospice patient who is suffering with unendurable pain. Not all places have palliative sedation available for dying patients, as it necessitates IV infusion drugs to the point of sleep and unconsciousness.
For any patient who is choosing to die, another option is always voluntary stopping eating and drinking. This is a difficult option for most people.
Should I tell my 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.
Is this suicide?
This law makes it very clear that a terminal patient, who fulfills all requirements set forth in the law, and ingests the life-ending medication is not committing suicide. It is your disease that is killing you. The medication simply allows for a calm, peaceful end to what otherwise could be a death full of indignity, pain, and suffering.
Suicide occurs when a person who has no terminal illness is successful in ending his or her own life voluntarily, or when a sick patient is not under the protection of the End of Life Option Act and takes his own life.
Will my death certificate say I committed suicide?
No. For any patient who uses the life-ending medication option under the California law, the cause of death, as documented on the death certificate, will be the disease that is going to cause the patient to die within the next 6 months.
Can I just fly to California, get qualified, and fly home with the medication?
No. You must be a California resident, and be planning to die in California, to qualify under the law.
Does everyone take the prescribed medications?
No. 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.
Should I wait until I am close to death before I get started with the End of Life Option Act process?
No. Looking into this sooner is much better than later! Many people do not actually seek out this option until they have tried absolutely every drug, chemo, or treatment regimen available for their disease, and are near death. Under the law, the very fastest it is possible to qualify a patient and obtain the drugs is about 3 weeks, and the average is 45-50 days. If you are close to death before starting to find doctors and make your first verbal request, you may not live long enough to be able to obtain the medication you seek.
After your prescription is written, you never have to use it. You can leave it at the pharmacy indefinitely, 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.
Will my life insurance still pay out if I take the life-ending medication?
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.
How much will the life-ending medication cost?
The cost depends upon the state plan. In Oregon, the cost of using the medicine is covered by State Medicaid reimbursement. In Washington, the individual patient is responsible for covering the cost of the medicine themselves. In California, a portion of the cost will likely be covered by Medi-Cal.
How will I know when it is the right time to take the life-ending 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.
As a guideline, I suggest to my patients that 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, feeling like a financial, physical, or emotional burden, 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. I believe 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.
Are there any reasons I will not be able to take the medication after it has been prescribed and is available to me?
There are basically 3 things that can keep you from taking the medication, after it has been prescribed:
- If your disease progresses to coma or death, you obviously can no longer ingest the medication.
- Tumors in your brain, or certain metabolic problems, can affect 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.
- The last thing which can prevent you from successfully ingesting the medication is the inability to swallow the 4 ounces of liquid within 2 minutes or less. This might occur with progressive overwhelming weakness from end stage illness, or from a neurologic disease like ALS.
Why do I have to wait until June 9, 2016?
The California legislators passed the End of Life Option Act in 2015. It takes a lot of work to get everything ready for implementation after a law is passed. California set the target date for implementation as June 9. As implementation of the law begins, it may be slow working through this procedure for the first patients, as everything is new.
Even though you cannot make your first request until that date, you can start now by talking to your family and your doctors. If you can find two doctors willing to participate before June 9, you will have cleared a major hurdle, and the process can begin soon thereafter.
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. I hope you find many.
Featured image by Miwok.