A Better Exit at the End of Life?

Marcia Hofer, a retired clinical psychologist, got pulled into the world of Medical Aid in Dying (MAID) because of the experience of her husband, Ricardo Hofer.

She started her Zoom talk to the Humanist Society of Santa Barbara by showing a photo of her husband. He was also a clinical psychologist. He liked to figure things out himself and be in control.

One time she found him on the roof with a hammer in one hand and a “How-To” book in the other hand!

He was diagnosed with dementia. Her family had meetings called “Unhappy Hour” as they dealt with his situation.

People often assume that California’s 2016 End of Life Option Act (EOLOA) can help anyone who is facing these difficult end of life issues. But that is not the case.

Marcia was fortunate in that their entire family was united. She, her husband, their two daughters, and their spouses all supported his decision to pursue medical aid in dying.

Switzerland offered the best option for their family. They use an injected drug that is painless, legal, and fast-acting. The patient turns a valve to administer it.

Some people think they can come up with a do-it-yourself technique. Hofer warned that a failed attempt could be worse than no attempt.

The Swiss clinic is called Pegasos. Established in August 2019, Pegasos is a Swiss voluntary assisted dying (VAD) association based in Basel, Switzerland. Her husband went out listening to his favorite Bach cello suite.

This worked well for them, but it seemed crazy to have to fly so far for what should be accessible to everyone who needs it.

Hofer decided to start a grassroots organization, “A Better Exit”. She had to figure out how to change the law in California. She learned about the legislative process while researching this.

Efforts for such laws began in 1906.Oregon was the first state finally to pass such a law in 1994.It went into effect in 1997 as the first U.S. Right to Die law.

Washington state followed, and then California.

Brittany Maynard was a young woman with brain cancer who wanted to end her life. She and her husband had to move to Oregon. She was young and telegenic, so she was the perfect representative. Doctors finally dropped their opposition to the California law and it passed in 2015.

However, there are some notable restrictions in California’s EOLOA. The patient has to be within six months of death. In practice, the law really only works for cancer patients. This leaves out a lot of people with many other conditions, including dementia.

In California, the patient has to be of sound mind, yet near death. That is almost impossible in the case of dementia. The California EOLOA also specifies the means of death has to be with medications that are “self ingested”. This has been interpreted to mean through the gastro-intestinal tract. This requires lifting a cup and drinking two ounces of thick liquid. Many can’t do that. They may be too weak and/or they can’t swallow and/or their gastro-intestinal system is not working.

Another option within that legal definition is a rectal catheter, but that still requires some coordination to operate. Consider someone with ALS: six months before death they are likely to have lost the necessary strength and agility.

A Better Exit would broaden the EOLOA in these ways:

1.Eliminate the 6-month to death timeline and replace it with a definition that focuses on the person’s condition and judgment,

2.Allow an injected option,

3.Allow early to mid stage dementia patients to have access to MAID if two physicians find they have the mental capacity to understand the consequences of their choices.

There are three legal pathways to implement these changes:

1.Ballot initiative – hugely expensive

2.Court challenge – hugely expensive

3.Legislative process

A Better Exit chose the third route. They met with as many legislative staffers as they could in the State Assembly and Senate. They asked the staffers if their legislator might be willing to sponsor such a bill.

Each legislator has a limit of 50 bills they can submit in a two year session. During the fall they receive requests, then, in January, they decide which ones they will author, and file them in February.

A Better Exit expected this would be a heavy lift. It is a big departure from any existing U.S. law. They were pleasantly surprised that Senator Catherine Blakespear would take this on.

She represents the 38th District, a strip of land from San Diego up to Mission Viejo in Orange County. She was elected in 2022, which is important. With term limits in California, it was important to find someone who is early in their elected terms. This process could take multiple rounds.

Next came the specific language of the bill. They filed a ‘spot bill’ place holder in February. The actual wording of the real bill was just filed a few days before her talk.

The proposed bill will go to the Senate Health Committee. They can pass it on to the full Senate or they can ask for changes. That is why it is good that Blakespear is young and has years ahead of her!

A Better Exit expects a lot of opposition, mostly from two sources: the Catholic Church and a small but very vocal subset of the disability community. Some of the latter are suing California saying no one should have this choice.

EOLOA has already been updated once through SB380.This bill reduced the time between the two required oral requests from 15 days to 2 days (48 hours).Some were dying before they could get the medications.

The disability advocates decided to sue. Our legal system requires ‘standing’ to prevail in such a suit. The disability people would have to show some injury. Marcia expects that they will come out swinging and A Better Exit has to be prepared for that.

Good news! Just as this went to press, the judge ruled indeed that these groups did not have standing!

The disability issue can also cut the other way. A woman with ALS sued California claiming that the ‘ingestion’ requirement discriminated against her and was not ADA compliant. She requested help guiding the cup to her mouth. The judge ruled against her, claiming it would be rewriting the EOLOA law.

The existing EOLOA law also has a sunset clause. The legislature either has to reauthorize or extend it.SB380 tried to make that change, but that was rejected. It is set to sunset in 2031.

The logic of a sunset clause is that it gives a chance to gather data and to see how it plays out. Hofer said that it is time to remove it.

She then took questions. Judy Fontana asked how the medical community is responding. Hofer said that it is a mixed bag. The Alzheimer’s organization will stay neutral. That is a big win. End of life options poll at 75% approval in the general public, but only 50% in the medical community.

The public is ahead of the medical people and ahead of the legislators. The “cocktail” taken to end the patient’s life has been changed several times. The current one can take hours. It is not a problem for the patient, who is unconscious very quickly. But it is hard on the family.

Judy Flattery asked how many people have used EOLOA and if there have been any reported issues. Hofer said there have been no real problems. Some in the disability community claim it could be a slippery slope of coercion, but this has not been a problem thus far.

Just being old or disabled does not meet the requirement. The patient has to jump over several hurdles. They have the conversation alone with a clinician, away from anyone who might influence them. A Better Exit would not change any of those guardrails.

I asked for more details about the Swiss process. Hofer said the Pegasos clinic uses a large dose of Pentobarbital, the same meds used to put a pet to sleep. It is interesting that we treat pets with more compassion than we treat humans in the U.S.!

Mark asked about the MAID laws in the U.S. vs. Canada. Hofer said that Canada is considering expanding eligibility to include severe mental health problems. Some people have intractable depressions.

She is not proposing this for her law. The U.S.is not ready for that. It is a stretch to get the reforms being asked for already.

Judy Fontana is a retired nurse and has seen the need for such laws. Hofer said that organizations are reluctant to take a position in support of these laws, but their members are.

Hofer said that the group “Compassion and Choices” has opposed efforts to expand the existing law. They would rather extend the law to more states. Hofer thinks that is not realistic. No “Red State” is going to pass such a law and no new state has passed a law in recent years.

Zoom attendees then shared stories of friends and family members who had to resort to drastic measures: a gun to the head or jumping from a high balcony.

There is also the issue of finances: having to go to Switzerland discriminates against the poor. Hofer said that the Pegasos clinic charges $10,000.It seems like a lot, but that covers everything, including handling the body. They give the ashes to the family. She noted that some patients are simply physically unable to make such a trip. International travel is not always easy, even for those who are strong!

Medi-Cal does cover the cost of the existing EOLOA approved medications (about $700).

Karen raised the question of crossing state lines. The anti-abortion rights states are trying to forbid their residents from traveling to other states for an abortion. Hofer said the Constitution protects the right to cross state lines in general, but if you took medications from Oregon back to Alabama and anyone helps you, they may be at risk.If you try to help someone in California you could be prosecuted for a felony.

Judy Flattery asked about Dr. Kevorkian. Hofer said that he was a hero to some in the movement. He went to prison for doing what he believed in. He was performing actual euthanasia.

Hofer recalled a bumper sticker that read, “If You Don’t Believe in Abortion, Don’t Have One!” She says this is the same kind of issue.

Now is the time to write letters to the Senate Health Committee. Here are the key changes that this new bill SB1196 would make:

1.Replace “terminal disease” with “a grievous and irremediable medical condition” that is defined by a set of criteria

2.Expand the EOLA to those with early- to mid-stage dementia

3.Allow for aid-in-dying medicine to be received through an intravenous infusion that is self-administered by the patient

4.Removes the 2031 sunset date.

Nothing in SB 1196 changes existing safeguards or liability protections contained in the current law. The HSSB Board voted to submit a letter on behalf of HSSB supporting this proposed bill.

IMPORTANT NOTE! The above article was published in the April Humanist Society newsletter. Below is an update in the May newsletter. I think this information makes it even more important to write our legislators about this issue.

Unfortunately, the bill will not be moving forward at this time, after encountering objections on many fronts. Compassion & Choices, the organization responsible for enacting the current (2016) law, opposed this expansion of rights. The California Catholic Conference also opposed it, as did some disability rights advocates.

Sen. Susan Talamantes Eggman who authored the original End of Life Options Act in 2016, came out against this most recent expansion. She posted on X that, “While I have compassion for those desiring further change, pushing for too much too soon puts CA & the country at risk for losing the gains we have made for personal autonomy.”

Marian Shapiro hypothesized that Senator Blakespear may have thought it better to withdraw the bill at this time, and wait for more favorable conditions, rather than have it voted down now. Politico quoted Senator Blakespear’s statement, “At this point, there is reluctance from many around me to take up this discussion, and the future is unclear… The topic, however, remains of great interest to me and to those who have supported this bill thus far.”

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