Medical Aid in Dying (MAID)
Getting a terminal illness diagnosis is life-changing. When you find out you don't have as long to live as you had thought, decisions are taken from you left and right. What options do you have? MAID is an option many people do not realize they have.
Medical aid in dying (MAID) is when a medical professional prescribes medications to a consenting patient who then takes them willingly to speed up their dying process. This concept has been a widely controversial topic. Should doctors and medical providers interfere in any way with the dying process? We are told doctors should do no harm. But what does that mean exactly?
MAID dates back to Ancient Greek and Roman times. Throughout history, there have been many different evolving ideas around medically assisted dying. Is it more ethical to not interfere with the death process or to help someone end their suffering? Is it wrong to help someone die, or is it wrong to sit back and watch them suffer? Doctors are supposed to do no harm, but what if doing nothing does more harm? These are the questions being asked as Medical Aid in Dying progresses and evolves.
There have been many cases with many different patients fighting for their right to die on their own terms. In the 1990s, a woman named Sue Rodriguez was battling a progressive and fatal disease, ALS. She fought for her right to die by stating, "If I cannot give consent to my own death, whose body is this? Who owns my life?"
Sue Rodriguez and the Supreme Court
Sue Rodriguez wanted the right to end her life on her own terms; to decide how, when, and who controlled the way she would die. And she was determined to fight for that right.
In 1993, Rodriguez brought her argument all the way to the Supreme Court of Canada, which ultimately decided she had no legal right to ask anyone to help her die.
In early 2015, the Supreme Court of Canada ruled that a ban on medically assisted death was unconstitutional and MAID became legal in Canada.
MAID vs. Physician-assisted suicide
Many people confuse Medical Aid in Dying with physician-assisted suicide. One of the main differences is MAID is for someone who is suffering from a terminal illness and is self-administered. This is not always the case with physician-assisted suicide. Distinguishing between MAID and physician-assisted suicide is extremely important, especially when it comes to law and legislature.
MAID is not suicide. MAID is a legally regulated choice someone can make if they are eligible. It is another form of treatment for an irreversible fatal illness that profoundly impacts the quality of life.
When someone dies through the use of MAID, their death certificate will not read suicide. The cause of death will be listed as the terminal illness they had. This is a crucial distinction, especially regarding insurance and death benefits for the family.
States MAID is Legal
MAID legislature was first introduced to the United States in 1906 in Ohio with a bill called "An Act Concerning Administration of Drugs etc. to Mortally Injured and Diseased Persons." The bill applied to anyone who was of legal age and of sound mind and was also "so ill of disease that recovery is impossible or who is suffering great pain or torture." The patient would also have to have three physicians agree with the request to be put to death, and a doctor would administer the drug. Iowa and Nebraska also considered similar bills soon after. All three bills were not passed.
It wasn't until the 1980s that MAID was again considered after the establishment of the right to refuse life-sustaining treatment. If people had the right to refuse treatment that would save or prolong their lives, why couldn't they choose a treatment that would shorten their lives if they had a terminal illness?
MAID was first introduced to certain states through ballots. Some states have a process called the ballot initiate process. This process allows the public to vote on statutes if a certain number of voters sign a petition. California, Michigan, and Washington all proposed MAID in their ballots in the late 80's and early 90's. None of these states got enough signatures.
Jack Kevorkian
Dr. Jack Kevorkian was a big advocate for MAID in Michigan in the 1980's and 1990's. He petitioned an amendment to the constitution to read: "The right of competent adults, who are incapacitated by incurable medical conditions, to voluntarily request and receive medical assistance with respect to whether or not their lives continue, shall not be restrained or abridged."
Dr. Jack Kevorkian was a pathologist who had claimed he helped over 130 patients die. He was convicted of second-degree murder after he helped with the voluntary euthanasia of a patient suffering from a fatal disease.
While he was arrested on similar charges before, he was never charged. The main reason he wasn't charged in previous cases was due to the fact the patient had always administered the drug themselves. The significant difference in this case was that Kevorkian administered the drug to the patient instead of the patient administering the drug himself. Kevorkian served eight years of his sentence.
Kevorkian challenged the way many people thought about death and dying during a time when the subject was even more taboo than it is today. While he was unsuccessful in legalizing MAID in Michigan, he helped expand the topic's reach throughout the United States.
Legalization
The progression of MAID has been slow over the years. Oregon was the first state to legalize MAID in the United States in 1994.
Oregon proposed the Death with Dignity Act in the 1994 ballot. One of the main factors that helped the success of the Death with Dignity Act was the omission of the phrase "mercy killing." It was shown that this term was a huge factor in previous ballots in other states. While it was not implemented for three years, Oregon paved the way for future states. However, it was fourteen years before it was legalized in any other state.
Today, MAID is legal in:
Oregon
Washington
Montana
Vermont
California
Colorado
Washington D.C.
Hawaii
New Jersey
Maine
New Mexico
According to Harvard Law, the regulation of medical assistance in dying (MAID) is drastically different between the U.S. and Canada. Comparing the hasty liberalization of MAID in Canada with the more wary approach of the U.S. can yield important learnings for both countries.
Who is Eligible for MAID
There is not a list of conditions that qualify for MAID. Each person is different, and each case needs to be assessed on a case-by-case basis. Certain qualifications are required by both patient and physician to be considered for MAID.
To be eligible for MAID, you must:
Be at least 18 years of age.
Have the capacity to make the decision.
Be able to ingest the medication yourself.
Be fatally ill with a prognosis of six months or less.
The physician must:
Have another consulting physician.
Confirm the patient is eligible.
Fully inform the patient of the risks, benefits, and other alternatives to MAID.
Verify the patient is making a voluntary decision and is absolutely decided.
MAID can be hard to access
The process to be approved for MAID is so extensive that many people who want or need MAID do not have the strength to go through the process.
Laws in California
Each state has a different Act in their law for their specific state. While they are generally very similar, they do vary slightly. California currently has the End of Life Option Act (EOLOA).
MAID in California, like many of the other states, is an extensive process to go through. However, legislatures and advocates of MAID are working to improve the process. Currently, in California, the process is as follows:
A verbal request has to be made to the primary treating physician for MAID. They may or may not currently support the law or be willing to help in the process. If they do not support it, they must transfer their records accordingly.
The physician will then determine whether or not the patient qualifies. This means ensuring the patient knows all their options and the decision is entirely voluntary.
If the patient requesting MAID has a condition that affects their mental health, they must also be evaluated by a mental health professional.
A second verbal request must be made at least 48 hours after the first verbal request.
The physician then goes over the patient's condition and options one last time, giving the patient another opportunity to withdraw their request.
The physician prescribes the medication and goes over storing the medication, administering the medication, and what is done with any of the remaining medications.
The medication will then be dispensed to the patient or a designated person.
This process generally takes around three weeks to complete. However, the time frame can vary depending on the patient, the physician, the condition the patient has, and the healthcare system they are within. Some medical facilities do not allow MAID to be performed within their premises, resulting in more planning for the patient. Hospice is often advised in many situations.
SB 1196
On February 14, 2024, Senator Blakespear introduced SB 1196. This bill would enact many important amendments to the current End of Life Option Act, such as:
Getting rid of the prognosis of six months or less requirement
Getting a terminal prognosis is not always accurate. Someone could have more or less time to live than any one doctor can determine. How accurate are these estimates? Getting rid of the six-month or less prognostic estimate requirement would open MAID up to many more Californian residents.
Include an intravenous way to get life-ending drugs.
EOLOA currently specifies that life-ending drugs must be ingested. However, not all people requesting MAID can ingest medication. These patients might not have the strength to hold a cup, or they might not be able to swallow. They might not have the strength to insert a syringe. Including an intravenous way, meaning through a vein would allow these patients to more easily take the drugs.
Allow people with early to mid-stage dementia eligibility if they have decision-making capacities.
People with dementia and other terminal conditions that affect their cognitive abilities are not currently eligible for MAID. Once they are within the six-month range of their prognosis, they will not have the decision-making capacity to choose MAID. SB 1196 allows these people the option to make the decision while they still can.
Eliminate the 2031 end date for the End of Life Option Act.
The current End of Life Option Act is only in effect until January 1, 2031. SB 1196 would get rid of the current end date.
One of the main ways SB 1196 will change the End of Life Option Act is to change "terminal disease" to "a grievous and irremediable medical condition." To be a grievous and irremediable medical condition, it has to:
Be an irreversible decline in a person's capabilities.
Cause physical or psychological suffering that cannot be relieved.
Be reasonably seen to be fatal.
Jean’s Journey
Many of the people discussing SB 1196 aren't going to be personally affected by the outcome. So, we spoke with someone who would be directly affected. Jean Fisher was diagnosed with Alzheimer's Disease, a progressive and fatal disease that affects memory, thinking, and behavior.
When asked about the importance of SB 1196, Jean stated:
"It opens the minds of many as to what is new and different for those with dementia. How does this impact me and my life? It gives me a chance to learn and then take action, especially because there is no cure. This is freedom giving us a choice!"
Our San Diego Death Network Discussion Group supporting Jean (pictured in the center) as she fights for MAID to be approved for those with an Alzheimer’s diagnosis in California.
One of the factors often thought about when deciding whether or not MAID is a good option for a person is family and friends. What would they think or feel about a decision to use MAID? When Jean was asked about how the people in her life felt about her decision to use MAID, she responded:
"The majority of people I know in my life strongly understand the 'illegality' of our government laws that want to control our lives and can force us into months or years of pure inhumane hell. I can only assume that those who say nothing disagree with me. And that's OK. We need Freedom of Choice and not a one-way control law."
When asked why MAID was preferred for her instead of being cared for, Jean stated:
"There is no cure for dementia. For me, I hope to figure out how to end my life with dignity of some kind and not live in hell for who knows how long. People (including myself) also worry about the cost of all kinds of health problems and for how long." Learn more about Jean’s journey in the short video below.
Take Action
How can you show your support for SB 1196? You can take action and show your support by sharing information with friends and family. Tell them why you support it and how this bill can positively impact many people's lives. You can also post about it on social media or write an Op-Ed for your local paper.
You can also show your support by letting Senator Blakespear know you support SB 1196. You can do this by writing a personal letter and emailing it to contact@abetterexit.org.
MAID is not talked about enough. It can be an uncomfortable conversation to have. But what happens when it hits close to home? The conversation needs to be had while you can still have it. What options do you want to have? Changes need to be made now so you have all the options available to you. We need more people like Jean to speak up about the right to die with dignity on our own terms. We have to make so many important decisions throughout our lives, so why is one of the most important decisions being withheld from our personal authority?
An Unfortunate Update
While we were working on this article, A Better Exit notified us that SB-1196 had been pulled and would not be voted on at this time:
Yesterday our Board met with the legislative director for Senator Blakespear. The news we received is not good, but we wanted to share it with you as soon as possible.
The Senate Health Committee will not hear SB 1196 as scheduled on April
22nd. Tireless efforts by Senator Blakespear's office and A Better Exit were
not enough to overcome strong lobbying against the bill by the California
Medical Association and Compassion and Choices. As a result, vote counting indicated that SB 1196 would likely receive a "no" vote in the Health Committee. Not wanting to jeopardize future consideration of the bill with a recorded "no” vote, Senator Blakespear decided it was best to pull the bill.
We’re very disappointed that the bill won’t be heard in this session. For those of you who made plans to go to Sacramento for the scheduled hearing, we’re so grateful that you were willing to make that effort.
We are regrouping, strategizing, and plan to present a new bill next year. What can you do to help? Most immediately, you can write a note to Senator Blakespear to let her know how much you appreciate the effort she made to get SB1196 passed. Her address:
Senator Catherine Blakespear
1021 O Street, Suite 7340
Sacramento, CA 95814
A Better Exit is committed to achieving a more compassionate End of Life Option Act for California, and we will stay the course until we succeed, no matter how long it takes. We are confident that with your support we will be successful.
Written by: Elaina Lilienthal
