It was — 1933 — a very good year

Ruth Bader Ginsberg
Ruth Bader Ginsberg

Ruth Bader Ginsberg is too old? Perhaps she should consider stepping down from the Supreme Court?

These suggestions were floated more than once in the Q&A session after a recent Commonwealth Club talk by University of California Hastings Professor of Law Scott Dodson. Dodson is the editor of a newly released collection of essays, The Legacy of Ruth Bader Ginsberg, whose writers suggest nothing of the kind. Contributors to the book, and Dodson himself, focus instead on the significant contributions made thus far by the 82-year-old justice, and the impact she continues to have on jurisprudence and on life in the U.S.

Dodson was drawn to write about Ginsberg because he “kept encountering her clear and consistent opinions” and wanted to create an objective view of her legacy – notably including gender discrimination, as in the case that ended Virginia Military Institute’s male-only admission policy, and racial discrimination, as in the voting rights case Shelby County v Holder. In the latter case, Ginsberg famously wrote that throwing out an anti-discriminatory measure as no longer needed “is like throwing away your umbrella in a rainstorm because you are not getting wet.”

As New York Times columnist Gail Collins wrote several months ago: Ruth Bader Ginsberg has no interest in retiring.

Carol_Burnett_1958
Carol Burnett in 1958

Several days before the Dodson talk, David McCullough, 82, spoke at another San Francisco event in conjunction with his most recent book, The Wright Brothers. McCullough did not go into detail about his next project, but gives every indication that he is a writer with no interest in retiring.

Meanwhile in Texas, Willie Nelson, 82, has another concert coming up, and the next show planned by Carol Burnett, 82, is almost sold out.

This writer may not have anything else in common with Ruth, David, Carol and Willie, but we take what we can get. 1933 wasn’t a bad year to be born.

 

When Cure Is Not An Option

“Has anybody asked the patient?”

Jessica Nutik Zitter raised her hand to pose that question some years ago, at a “Morbidity and Mortality” conference wherein a room full of physicians were discussing treatment options for a dying patient. The doctors continued to talk about surgery A or drastic measure B. Zitter raised her hand again to say, “Has anybody asked the patient?”

Zitter is now a highly regarded critical care/palliative care physician who speaks and writes often on end-of-life issues. A solitary voice at that “M&M” conference, today she is one of the leading voices for medical care that asks the patient first. It is the care most of us would choose.

Zitter spoke recently at San Francisco’s Commonwealth Club, an event titled “Avoiding the End-of-Life Medical Conveyor Belt.” Her horror stories explain the conveyor belt metaphor, and confirm the immensity of the end-of-life care problem facing us all. The problem is not just with our cultural inclination to ignore death altogether, as has often been written about in this space, or with physicians’ inclination to continue treatment as if death were not an option. It’s both.

Fran & Jessica Zitter 6.9.15
Jessica Nutik Zitter with Fran Johns

Jessica Nutik Zitter’s stories (a book is forthcoming from Penguin Random House) starkly highlight the death-is-not-an-option attitude unfortunately still common in the medical profession – and the pain and anguish endured by patients who wind up on the conveyor belt as a result.

People will often say, “Take a chance! Maybe God will work a miracle…” Zitter comments, but “the odds are high for (that person’s) being committed to a great deal of suffering and a grisly death.”

Thus the conveyor belt: a patient who is dying and could use a little peace instead winds up undergoing a cruel series of events – resuscitations that mean broken ribs, restored breathing that means a tube thrust down the throat, futile interventions that add to – and prolong – pain and suffering.

Zitter tells of a patient who was essentially “a body,” shrunken and yellowed, being given emergency resuscitation that one nurse likened to torture; and of a man repeatedly taken from the nursing home to the ICU, because he had hand-written a note saying he wanted his life prolonged ‘at all costs.’ “We don’t give people graphic visuals of what those costs may be,” she says.

Asked why doctors don’t practice patient-centered care, Zitter cites two factors – in addition to the imbedded tradition of always providing treatment, and more treatment. One is the need for physicians to get paid for time spent on end-of-life discussion, something that seems perfectly rational but tends to get shouted down in the politicized healthcare arena. The second is equally simple: “If you don’t offer care, someone else will.”medical symbol

Asked by an audience member about what constitutes good care when cure is not an option, Zitter recommended that decision making in such cases should be made early on. “The possibility to cure gets me up in the morning,” she said, “but helping a dying person achieve a good death is equally satisfying.” While advance directives are useful, she points out, they are not enough. It’s important to talk extensively with friends and loved ones, and to create documents with the help of legal and/or healthcare professionals if possible. (A growing number of individuals and organizations are offering such services.) “But decisions have to start with the patient,” Zitter says. “The patient saying ‘do this’ or ‘don’t do that.'”

Otherwise, it’s onto the conveyor belt.

 

Choosing a better death

Could dying be better?

By now most people acknowledge that there are “good” deaths: peaceful, with minimal pain, at home surrounded by loved ones – and “bad”: pain-filled and prolonged, often for months or years and more often than not in a hospital or other institutional setting. The movement toward “good” death – legalized medical aid in dying – has been growing for decades in the U.S., but has been gaining momentum and attention in recent months.

Liner.2Robert Liner MD, a retired obstetrician/gynecologist, gave an informative update on the movement at a recent University of California San Francisco grand rounds. Liner is one of four patient plaintiffs in a California lawsuit which would make that state the sixth to legalize physician aid in dying, and a longtime supporter of leading end-of-life organization Compassion & Choices. The suit is also joined by three physician plaintiffs.

Liner, whose cancer is in remission, said he would personally prefer to avoid death altogether. “But along with birth, dying is a universal experience. It’s what we all do.” And equally universal, he noted, is the wish to make that experience a little more compassionate, a little closer to what most of us would choose.

Liner outlined the current status of California SB-128, the End of Life Options Act, now working its way through the senate. While granting terminally ill, mentally competent adults the right to ask their physicians for life-ending medication, the bill would also establish safeguards such as requiring assessments by multiple physicians and repeat requests for the medication made at least 15 days apart. A similar law in Oregon has proven valuable in many aspects over the 18 years in which it has now been in place, Liner said. Death W Dignity newspaper

He cited a study published in the New England Journal of Medicine at the end of the Oregon law’s first decade which found that since passage of the law Oregon has seen improved training for physicians in end-of-life care, an increase in individuals’ completing advance directives, improved pain management and rates of referral to hospice and an increase in number of people dying at home.

Putting the better-death movement in historical context, Liner referenced a significant case several decades ago that sometimes goes unnoticed. In 1991, he explained, New York physician Timothy Quill published an article in the New England Journal of Medicine describing how he had prescribed barbiturates to a dying patient when her leukemia reached a point at which she no longer wanted to live. A grand jury subsequently declined to prosecute. Quill later became one of the plaintiffs in a case that wound up reaching the U.S. Supreme Court. And in 1997 the Court let stand a New York law prohibiting what was then called physician-assisted suicide, ruling that there is no federal constitutional right to die – effectively turning the issue back to the states.

Five states – Oregon, Washington, Vermont, Montana and New Mexico now allow physician aid in dying, Liner explained. California’s efforts to become the sixth include a campaign launched last year by Compassion & Choices and the lawsuit filed early this year.

Scales of justiceLiner distributed copies of the April edition of San Francisco Medicine, the journal of the San Francisco Medical Society, in which he and two of the other physicians involved in the lawsuit explain their support for legalized aid in dying. “Collectively, we represent almost a century of medical practice, teaching and research…(and) probably most relevant is our extensive experience caring for dying patients,” write lawsuit plaintiffs Liner, Donald Abrams, MD and Marcus Conant, MD in San Francisco Medicine.

The lawsuit is backed by national disability rights advocacy group Disability Rights Legal Center, Liner explained, and cites a number of reasons why aid in dying should now be legalized. While some arguments – such as privacy and liberty interests – are complex, one seems fairly straightforward: California penal code section #401, which makes it a crime to aid or encourage someone to commit suicide (a very different situation from a dying person’s wish to shorten his suffering), was written more than a century ago. Before dying shifted from being commonly a home event overseen by the familiar family physician to hospitals or other institutions where the large majority of Americans now spend their final days and weeks. Before medical technology made it possible to prolong life, often far past any “life” many would choose.

Liner, and millions of other Americans, believe choice in dying should rest with those who are dying themselves.

 

 

Want to put your brain to good use?

child Head

(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.

Data Today, Better Tomorrow, yay!

Women's Health Initiative

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.

Life: a sexually transmitted, fatal condition

sunset

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.

Atul Gawande
Atul Gawande

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.

The Human Face of Human Trafficking

chained wrists

Suppose, just for a moment, you are a 13-year-old girl who has been trafficked in America, the land of the free.

You’ve been brought to the U.S. – kidnapped, sold by your impoverished family, picked up from the streets of some land where girls have no value – and prostituted. Or more likely here, you’re a very unlucky American child victimized by traffickers. As a result of this tragic history, you are pregnant. Or, you survived God knows what only to become a 20-something victim of human trafficking – which now leaves you pregnant.

You should be forced to carry this pregnancy to term? Excuse me?

This is the human face of the human trafficking bill currently being held up in the Senate. Texas Senator John Cornyn’s “Justice for Victims of Human Trafficking” bill would “boost support for and protection of victims of human trafficking” – unless they happen to get pregnant. Once they become pregnant, that support and protection disappears. Tucked away within the multi-page piece of legislation is a stipulation that abortion could not be paid for with these funds.

It’s the old Hyde Amendment thing – the bill passed late in the 20th century that sent women’s reproductive rights straight back into the 19th century with the stipulation that never a federal dollar would be paid to help them end unwanted pregnancies.

Some young trafficking victims might still seek help, since there are now exceptions in cases of rape or incest. But the fact that the victim herself would bear the responsibility for proving the circumstances of her pregnancy is an insult added to egregious injury.

Human faces get lost in congressional rancor. Senators accuse one another of subterfuge and betrayal. Republicans accuse Democrats of one thing, Democrats accuse Republicans of another. Very little gets done. And in it all, the human faces disappear: faces of mere children who never had a break, of women of every age who deserve a life.

If they had voices, those faces might say, “Remember me?”

Dying in the Fix-It Society

Buddhist teacher/lecturer Frank Ostaseski spoke recently to the Bay Area Network of End-of-Life Care on the subject of compassion – something Ostaseski preaches, teaches and practices himself. Co-founder, in 1987, of the Zen Hospice Project, the first Buddhist hospice in the U.S., Ostaseski currently heads the Metta Institute, created to provide education and training on spirituality in dying.Buddha

Buddhism, Ostaseski said, holds that life is supported by two wings, compassion and wisdom, and neither is at its best without the other. His audience, made up of physicians, hospice workers and others involved with end-of-life care, was in interested agreement with the renowned speaker as he expanded on the theme. But this writer, also in agreement, found one side remark particularly pertinent to today’s end-of-life issues.

Ostaseski spoke of a severe heart attack he suffered not long ago, and of the wisdom gained from that experience. It was insight on critical illness “from the other side of the sheets.” During his hospitalization most visitors, even longtime friends with credentials in compassion, said the wrong things. “They were always saying, ‘It’ll be better tomorrow, Frank,’ when I wanted to talk about what was going on that very moment.” Additionally, Ostaseski found that nurses and doctors “interacted with monitors far more than with the patient.” What could well have been an end-of-life situation was, in short, lacking in compassion and wisdom both.

“Hospitals are fix-it places,” Ostaseski remarked.

We may have gotten fixated on being a fix-it society. Whatever the problem, a chemical or technological answer, in the fix-it society, is instantly sought. We fix brain injuries, once-fatal diseases, missing limbs, and more. But can we let someone who is terminally ill quietly die? Seldom. More often than not we keep trying to fix her with extended interventions, futile and expensive treatments or hospital stays that make dying a horror.

Ostaseski and others are working hard to help people find meaning in their final days, focusing on palliative care. Some, including this writer, are working hard to make medical aid in dying a legal option available across the U.S. ALL of us want a peaceful and compassionate death.

The_flame_of_wisdom
The flame of wisdom

 

The personal bottom line, yours and mine, is this: eventually we die. If the focus can be shifted away from constantly trying to extend our days, we can fix the final days that lead, one way or another, to the mysterious, inevitable, unpredictable, un-fixable but quite natural end. All it takes is a little compassion, and a lot of wisdom.

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