Making a Good Law Better


We are happy to share the following op-ed submission written by Board member Fran Johns who recently sent it to the San Francisco Chronicle.  It has yet to be published, but it is well worth sharing with our readers now.  EOLCCA is very supportive of these changes in the current law and applaud our California lawmakers for spearheading this effort.

Senator Eggman’s Amendment

The California Legislature is facing a rare opportunity: making a very good law better. Senator Susan Eggman’s SB380 amendment to the California End of Life Option Act will do precisely that. Among other provisions, the amendment would reduce the 15-day waiting period to 48 hours.  This waiting period, along with the requirement for a second “attestation” document, has turned out to be one of the flaws of the End of Life Option Act. Because many people put off invoking the law until their final weeks, these provisions became a cruel reality – lives ended in agony before relief could be secured.

CA State Capitol

 

Those of us who have worked with terminally ill individuals, particularly those wanting to explore all options available to Californians, know the End of Life Option Act to have been a blessing ever since it became effective in June of 2016. This new amendment will remove its flaws, giving some flexibility to dying patients and their physicians, and making the act more effective. As an octogenarian who doesn’t handle pain and suffering well and who is grateful for the California law, I am particularly anxious for that law to be as effective as possible.     

Opt Out

The End of Life Option Act (EOLOA) rightly allows for physicians to opt out if they have personal or religious convictions that make them unwilling to participate in medical aid in dying (MAID.) What has become clear, however, is that much of the law is dangerously murky. Healthcare facilities often deliberately obscure the fact that they will not allow participation in EOLA, and patients often discover, too late, that their physicians will not help them. When one is near death, it is not a good time to have to start looking for a new physician or healthcare facility in order to have one’s wishes honored. This new amendment will correct these flaws by requiring healthcare facilities to post their MAID policies on their websites and prohibit them from withholding truthful and accurate information from their patients.

If recent years have taught us anything it is the critical importance of truth and transparency. Truth and transparency are even more important to a dying person, along with autonomy, personal choice and the relief of unnecessary suffering. SB380 covers them all.

Co-authored by Democratic Senators Jim Cooper and Jim Wood, SB380 has the sponsorship of Democrats Cecilia Aguiar-Curry, Rob Bonta, Jim Frazier, Cristina Garcia and Luz Rivas; and has been endorsed by Death with Dignity National Center, Compassion and Choices and End of Life Choices California. It should be swiftly passed.

For more information or to get involved in the work to support this bill, go to Death With Dignity National Center and Compassion & Choices.

 

On COVID-19, Flexibility and Compassion

We share this thoughtful blog by EOLCCA Board member Fran Johns, a prolific thinker and writer. While much has changed in the mere 11 days since she wrote this piece, we wanted to share her calming perspective as we go about the hard work of isolating ourselves physically from our normal way of living.  This is also a gentle reminder to all, that EOLCCA volunteers stand ready and available to continue responding to terminally ill individuals and their families seeking information and support to determine their own end of life choices even as this pandemic has altered so much in our daily lives.  Many of those whom we can continue to help during this pandemic are suffering from unrelated end stage cancer and neurodegenerative diagnoses with a 6 months prognosis and need our help now. 

We can be reached at 760-636-8009 or email info@endoflifechoicesca.org. We are here for you.

 

I don’t know about your neighborhood, but Covid-19 is making life interesting here in the San Francisco Bay Area. Difficult for many, devastating for some, and interesting for the rest of us. As of this writing (I recommend the CDC site for accurate data on other areas, other updates) we have sped past the first hundred confirmed cases in the state, and who knows how many of the 10,000+ Californians in self-quarantine are also my Bay Area neighbors.

This little virus brings with it a large bunch of life lessons. Some of them are shared here, as a public service.

First off (I hate to bring politics ever into this space, but what can you do?) if you ever believed anything said by our commander in chief, this is a good time to mend your ways. Covid-19 is not a Democrat hoax, it is not going to disappear in a short time, you really shouldn’t go to work if you’re sick, a vaccine is at best many months away, and good luck finding those test kits that anybody who wants can get. This is only a life lesson in the sense that, in today’s crazy information-overload reality, Truth is hard to find. So, Life Lesson #1: Seek Truth. Read several newspapers if you still read news. Otherwise, visit the CDC site and scroll through more than one mainstream news source, please; do not believe Facebook will give you Truth. Watch PBS and occasionally Fox News; if one disseminates truth, the other reinforces your neighbor’s version of truth – and we’re all in this together.    Covid-19 greenie

Other life lessons are happier, and equally easy to learn. For instance, at my church we very quickly learned to replace hugs and handshakes with fist bumps and peace signs. Not as much fun, but whatever. The ushers are equipped with bulletins and hand-sanitizer. Choir members last Sunday spaced themselves three feet apart, which looked rather elegant – but they sounded the same, i.e. gorgeous. We also learned translations of the word Covid into Hebrew and Yiddish, which I have already forgotten, and which doesn’t matter anyway since the name was chosen by the World Health Organization thusly: Co and Vi come from coronavirus, D stands for disease and 19 (as in 2019) = the year the first cases were seen. To connect all this: I belong to a Presbyterian church that is heavy into hugs, scientific truth and interfaith understanding.

As to flexibility, this viral pandemic is teaching us, wisely, not to be so rigid about stuff. I was dismayed when the San Francisco Symphony cancelled a concert on my regular series that I really wanted to hear; and the political roundtable at the Commonwealth Club, a favorite regular program at which I always volunteer, similarly disappeared. But symphony season will resume in good time, and do we really need to talk politics late into the evening when it invariably produces nightmares? Sleep is better. That long-planned trip to Tucson in a couple of weeks? Probably not the wisest thing for my octogenarian cardiovascular system. Purpose of trip, however, was to join my daughter for a visit with a childhood friend of hers (whose mother, lost to cancer decades ago, was a good friend of mine) – and they can definitely have a ball without me.

So take deep breaths and wash your hands. We and the planet will survive in good time.

Moon & clouds

How Not To Die In The ER

This extraordinary piece we share with you today is a thoughtful and moving example of just what it takes to get well-meaning medical providers to pay attention to what we (the patients) want, not what they think we need.  The story is a hard but valuable lesson about the importance of both knowing and communicating your end of life wishes.  It is told with grace, strength, clarity and love.

 Originally published March 12, 2019 and reprinted with permission

by Fran Moreland Johns

“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18

 

 

The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

 

~~~

Fran Moreland Johns, an accomplished and prolific writer, is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that.  Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues and activism in that field that included serving on the board of Compassion & Choices of Northern California and the San Francisco Bay Area Network for End of Life Care.  She has recently signed on as a volunteer with End of Life Choices California, and is currently helping to publicize our services throughout Northern California. 

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