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May 30, 2015

John Paul Stevens: 95 & Going Strong

Retired Justice John Paul Stevens, a man of many accomplishments, comes across as a man of few regrets. The latter might be summed up in two words: Citizens United. His regrets over that controversial 5-4 decision, handed down just months before he left the Supreme Court, are strong, and many.

Stevens, who turned 95 in April, appeared recently at an event in Washington DC co-sponsored by the Alliance for Justice and George Washington University Law School. Introduced by AFJ President Nan Aron, Stevens was interviewed by Slate senior editor Dahlia Lithwick and Washington Post opinion writer Jonathan Capehart.

Stevens demurred on several issues such as the benefits or evils of social media and citizen journalists: “I’m not a good person to ask about that.” But on most points he was crystal clear.

Re political candidates having “a litmus test” for potential Supreme Court nominees? Even as to Citizens United, “it’s a bad idea. But the (Citizens United) case should be overruled.” Throughout the interview Stevens referred to the case as bad for the country and the future, and damaging to the basic principles of democracy, “which should be ‘one person, one vote’ and not (decisions hinging) on a bunch of money.”

Asked by Capehart why he had changed from the conservative he was considered when first named to the bench to his later identification as a liberal, Stevens said, “I didn’t change, the Court changed.” Every member appointed from 1981-91, he pointed out, was more conservative than his predecessor.

On electoral reform, another issue Stevens sees as imperative, he said “some things can be done at the state level. The right to contribute (to campaigns, etc) should have some geographical boundaries. Excessive photo IDs have never made sense.”

Stevens, in response to a question from Lithwick about “bombast and aggressive, ideological arguments” in the Court, said that “ideology is not good. That’s one reason I am against televising arguments, which would have an adverse impact on the deliberating process. I believe firmly in people knowing the institution, but not if it has an adverse effect on the institution itself.” Possibly because some member might be a camera hog, Lithwick interposed? “Any one of the nine. And I would include myself.”

Talking briefly about interactions among the justices, Stevens – known to have had a close relationship with conservative Justice Antonin Scalia – gave the impression that the Court does indeed function as intended. “I think John Roberts is a very good Chief Justice,” he said. “He executes the duties of Chief Justice well, although I disagree with some of his decisions.”

Stevens recalled stumbling over a few words while giving his dissent in Citizens United. “I said to myself, ‘You’re not as articulate as you were.’ And that’s when I stepped down.”

Fielding questions five years later, the renowned Justice showed no problem articulating his thoughts. Including the need for electoral reform – and the need to overturn Citizens United.

Authors/California/Education/Family and Friends/General interest/journalism/Lifestyle/Literature/Media/San Francisco/seniors

May 19, 2015

Figuring Out Who You Are

by Fran Johns

“Please don’t call me Doctor Jones,” said an extremely distinguished PhD speaker I met recently; “I’m just a teacher named Joe. I’ve been Joe all my life.” His name is changed to protect the innocent.

Having one name all your life is almost as interesting to some of us… of a certain age… as meeting a prominent multiple-degree lecturer who calls himself “just a teacher.”

Not someone of many degrees, I am nevertheless someone of many names. Maiden name, married name, resumption of maiden name after divorce, brief and ill-fated second marriage (yep, changed my name again,) eventual marriage to my Final Husband, whose name I took on moving across the U.S. nearly a quarter of a century ago. Because I’ve been writing since college (Fran Moreland) I often joke – though this is not a source of pride, only comic relief – that my literary resume reads like an anthology. Each name still bears its own notoriety, as well as its own burdens.

A fascinating look at what names and name changes have meant to women over the centuries is offered by my talented writer/scientist friend Jo Anne Simson in a recent article published in Persimmon Tree magazine titled “What’s in a Name.”

Names, Simson writes, have been used against women in subtle – and sometimes not so subtle – ways to subjugate, control and deny their sense of personhood. Probably the most damning of these practices for women in America was the assigning to slaves the surname of their masters, which “ruptured a connection to a past culture from which they had been torn most unwillingly. Moreover, the name change signified an identity conversion from personhood to property… ‘Leave your past behind. You are now property, not a person.’”

This writer’s post graduate experience ended with an MFA in short fiction, University of San Francisco Class of 2000, which conferred a degree but no title. I have, however, managed to keep my final literary name since 1992.

At about the same time I took on the final marital/literary name above, my first grandchild was born, bringing the other defining ID: Gran. The favorites survive.

General interest/Health/Healthcare/Medicine/seniors

May 5, 2015May 5, 2015

Want to put your brain to good use?

by Fran Johns

(Part Two of Data Today – Better Tomorrow)

Could this be you? Creating a better tomorrow through brain research??

It turns out one does not have to be a pro football linebacker to have a brain worth studying. One does not even need to have a brain like Albert Einstein’s, Steven Hawking’s or any of those scientists/exceptionalists/geniuses whose brains would seem worth figuring out.

One only needs to be 18 or over and willing to be studied, and then to go sign up on the Brain Health Registry. This entitles you to sit back and wait for your brain to help discover a cure for Alzheimer’s or ADHD or depression, or perhaps help find better ways to treat traumatic brain injury. Not bad, for just having a brain and investing a little time (no money.)

This writer got off to a sluggish start as a Brain Health Registry member. Signed up early on because it sounds like such a great endeavor, but then I ran into a few off-putting instructions like “This will take about 20 minutes. It is best done in a quiet room where there will be no distractions or interruptions.” Twenty minutes, quiet rooms and absence of distractions are three things hard to come by around my house.

Eventually, however, the requisite conditions were found, and I was off to create a better tomorrow – well, in partnership with a few thousand other participants and some very smart neuroscientists – by finding out stuff about the human brain. And this is one fascinating journey. The neuroscientists find it fascinating because they really are going to figure stuff out. But for participants, the fascination is in the process.

Participants enter a little basic, very general data about medical/family history etc. Then the fun begins. We have two sets of ‘Cognition’ tests aimed at assessing our memory, attention and other cognitive characteristics. “These tests give us a sense of how your brain is currently functioning,” the screen says. This participant can only wonder what the Brain Health assessment people think about how her brain is functioning. The ‘Cognition’ tests are computer games on steroids. For a while you try to remember and replicate the pattern of dots, and then you go to the card games. The card games require Yes or No answers about what the cards are doing, press D for Yes and K for No. My brain kept trying to tell me what the cards were doing, while my fingers tried to remember that K was not for Yes.

It is, all in all, a lot more fun that the computer games the rest of the world is playing.

In another three to six months, the BHR people will be reminding me to go back and do it again, or do something else, to see how the brain is getting along. Perhaps they will flag my entry and advise me to check myself into an institution. But more likely they will just combine my data with the data of a zillion more or less anonymous others – and find a cure for Alzheimer’s! Or depression! Or improvements in treatment of traumatic brain injuries! All with the help of my weary, aging brain. Plus, when the survey was completed I got an email from UCSF professor Michael Weiner, MD telling me I am a medical hero. “You’re helping to make brain research faster, better and less expensive – and ultimately that gets us closer to a cure for Alzheimer’s, Parkinson’s, and other brain disorders that strike tens of millions of Americans every year.” Who could resist?

You may want to go straight over to the Brain Health Registry and join the fun.

Health/Healthcare/Medicine/seniors/Women

April 30, 2015April 30, 2015

Data Today, Better Tomorrow, yay!

by Fran Johns

Some of us are suckers for studies: clinical trials, focus groups, surveys – whatever promises to shed a little light on the human condition, or possibly make that condition a little better.

This writer is a hopeless volunteer.

I have had my knees examined by MRIs, perhaps studying why I still have the originals despite a long history of abuse. I have had blood drawn for a study of celiac disease by someone who came to the house as part of the deal but unfortunately was not trained to find veins without causing excruciating pain. I have filled out lengthy surveys about addictive behavior – which may include addiction to study-participation (though that was not among the category choices.)

Currently, I am proudest of being an original part of the Women’s Health Initiative, which launched in 1993 with more than 160,000 postmenopausal women including this writer. In 1993 this was a Very Big Deal: studies had been made for all sorts of things with all sorts of participants, but finally there was a study of WOMEN. It sought to discover links between cancer (imagine! Studying women and cancer!) medical protocols, diet and other factors. Being a congenital wimp, and knowing I wouldn’t change my diet or stick to other proscribed regimens, I just signed up for the control group… but still. Even we control groupies are useful.

Over the years, WHI has developed a huge amount of useful data, probably the most beneficial being the finding that (imagine! Studying women!) hormone replacement therapy was not the be-all and end-all we had originally thought, but actually not such a good idea. (Read all about it.)

WHI has published over a thousand articles, approved well over 300 ancillary studies, and twice conducted extension studies. Findings have been about links between age, daily activities, diet etc and things like body fat, omega oils, heart disease, endometrial cancer – there is a list of useful discoveries resulting from this one large and ever-growing study project that boggles the mind.

Some – though surely not all – of this data is collected through regular survey forms received every year by WHI participants in addition to the annual birthday cards that by now this writer accepts as a “Congratulations! Are you’re still alive?” greeting. They seek data about lifestyles and life changes along with the traditional general health issues – and sometimes make one wonder what the next findings may be. My personal favorite question was, “When you enter a room full of people, do you often imagine they are talking about you?”

Paranoia after mastectomy? Who knows.

It is fascinating to be on the questioning end of tomorrow’s answers. Next blog: The Brain Health Registry. Assuming my closely-watched brain is still functioning.

Authors/compassion and choices/Death and Dying/Dying Unafraid/End-of-Life/General interest/Health/Medicine/physicians/seniors

April 18, 2015October 7, 2021

Life: a sexually transmitted, fatal condition

by Fran Johns

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

Family and Friends/General interest/Lifestyle/Politicians/San Francisco/Sports

April 16, 2015

Sailing as Metaphor

by Fran Johns

Life. Play it safe – or risk everything? Avoid conflict or seize the day?

At the end of a long-anticipated visit from across the country, this writer’s family – west coast grandmother, east coast son and daughter-in-law, granddaughters 11 and 13 – was invited to go sailing on San Francisco Bay with a close friend who owns (and carefully operates) a 36-foot sailboat. After showing us around – it sleeps seven, with almost all the comforts of home – our captain delivered a safety lecture, explaining things like where the life jackets are, and the way the boom can swing quite suddenly and one is advised to stay out of its way. He went into some detail about what to do if he fell overboard: a safety device attached to the stern contains rope and flotation collar, so all that’s required is to keep circling until the man overboard can grab the line. He then issued life jackets to the girls and offered them (this boat has life jackets for about a dozen) to the grownups. I declined, knowing full well that I would last about five minutes max in the chilly waters of the Bay; go figure.

For the next several hours we had a glorious sail, under the Bay Bridge, around the back of Alcatraz, nearing Angel Island, swinging parallel to the Golden Gate and heading back to meander homeward along the city’s edge. Picnicking in the sunshine and taking advantage of spectacular photo ops. I had one scary moment on the turnaround; it’s been a long time since I last sailed. Almost home we were stopped by the bay patrol and told not to sail back below the bridge for 10 minutes or so. Once we were cleared they explained to boats waiting on either side that Vice President Biden had been driving across the bridge. All in all it was a glorious day. In looking back, though, it’s hard to miss the basic messages:

1) Let the kids explore the universe, but keep the life jackets on.

2) White caps and turbulence make things interesting, and are seldom fatal.

3) The vessel with more power is supposed to get out of the way.

4) You can circle around someone who’s sinking, but he has to grab the lifeline himself.

5) On the other hand, when the sinker is you, be grateful for those circling around.

6) When you think the world’s going to keel over, there is ballast that brings it back to steady.

7) Sometimes the vessel with more power claims the right-of-way. Chill.

8) Wear sunscreen, and bring extra layers.

9) Don’t miss the scenery while you’re looking at your camera phone.

10) Life’s a breeze.

compassion and choices/Death and Dying/End-of-Life/geriatrics/Health/Medicine/seniors

February 8, 2015October 7, 2021

Death, Dying & the Grey Zone

by Fran Johns

Death-and-dying usually goes with I-don’t-want-to-talk about-it.

Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?

Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.

Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:

“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”

Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.

Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.

Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.

Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.

Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.

It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.

Because looking realistically ahead makes infinitely more sense than zoning out.

California/Campaigns/compassion and choices/Death and Dying/Dying Unafraid/End-of-Life/Healthcare/Law/Lifestyle/physicians/Politics & Causes/Religion/seniors

January 18, 2015October 7, 2021

Arguing With the Doctor – A plea for end-of-life choice

by Fran Johns

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?

Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.

The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.

Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.

And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.

I am less certain. Thus my argument.

In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”

Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”

After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:

Why should you have the right to insist that I linger, when I am dying?

How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?

When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?

Why should your conviction about the efficacy of your medical field trump my autonomy?

Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?

It’s my only precious life, after all. Why should I be denied control of its precious end?

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