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

Cycles of Living and Dying…

Originally published March 4, 2020 and reprinted with permission

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19 

 

 

 

Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices California, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 ~~~

Fran Moreland Johns 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. Continuing her leadership and long-time activism in this field, she has recently joined the End of Life Choices California Board of Directors and serves as a client advocate volunteer with EOLCCA in Northern California. 

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

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