Gag Rule Harms Millions of Women

Can you muzzle a million women? Really?

Female symbol

Unfortunately, that’s exactly what the Global Gag Rule seeks to do. Reinstated by President Trump two days after the Women’s March on Washington (take that, women of America,) the Global Gag Rule stipulates that non-U.S. nongovernmental organizations receiving U.S. family planning funding cannot inform the public or educate their government on the need to make safe abortion available, provide legal abortion services, or provide advice on where to get an abortion. Thus, every one of the organizations working to provide critical, comprehensive healthcare to women around the globe who desperately need it must either promise never to mention the A-word, or lose the funding that allows them to continue. We’re talking nine billion dollars.

Never mind that Marie Stopes International has estimated that without alternative funding – not easy to come by – Trump’s GGR between 2017 and 2020 will likely result in 6.5 million unintended pregnancies, 2.2 million abortions, 2.1 million unsafe abortions, 21,700 maternal deaths and will prohibit the organization from reaching 1.5 million women with contraception each year.

Susan Wood IWHC

Susan Wood

Other statistics are equally mind-boggling. Ibis Reproductive Health data shows the harmful effects of the GGR around the globe. HIV prevention efforts suffer. Health clinics close. Rural communities lose access to healthcare.

This dangerous foolishness started with Ronald Reagan, who enacted it by presidential decree in 1984. Since then, every Democratic president has rescinded it, and every Republican president has reinstated it.

Two women with long experience and a deep understanding of the GGR and complex issues involved spoke at a recent event in Marin. Susan Wood, Director of Program Leaning and Evaluation for the International Women’s Health Coalition, and Caitlin Gerdts of Ibis shared the extensive bad news above – and a glimmer of good news:

Caitlin Gerdts-Ibis

Caitlin Gerdts

A bipartisan (though predominantly Democratic) group is behind a bill which would permanently end the Global Gag Rule. Senator Jeanne Shaheen (D-NH) and Representative Nita Lowey (D-NY), along with an unprecedented number of original cosponsors, introduced the Global Health, Empowerment and Rights (HER) Act. The Global HER Act would remove dangerous eligibility restrictions on international recipients of U.S. foreign assistance and would ensure that U.S. foreign assistance prioritizes women’s health.

The Global HER Act would also:

  • Allow foreign organizations receiving U.S. aid to use non-U.S. funds to provide safe abortion and other medical services that are legal in the U.S. and in the respective countries.
  • Promote safe, ethical medical practices by removing discriminatory restrictions on essential health care services.
  • Support and encourage democratic participation and freedom of speech abroad.
  • Nullify any existing U.S. law or policy that interferes with these provisions.

After decades of yo-yo-ing U.S. political whims, this bill would finally put the health and safety of women around the globe on a steady footing. Miracles happen.

 

 

 

 

 

Death, Dying and a Few Questions

Third & final report on a few highlights of the global conference ‘The End of Life Experience: Dying, Death & Culture in the 21st Century’ in Lisbon, March 2018

Question markWhat are the tough end-of-life questions facing the people of Australia? Pretty much the same as those facing the people of the U.S. Or the U.K., or Canada, or Portugal. A few of those discussed at the recent End of Life Experience interdisciplinary conference in Lisbon would include:

How, exactly, do we define death after all? Iona College Professor Vincent Maher, who holds a variety of degrees and whose career has included broad based legal, health care and non-profit sector experiences, presented a paper on the complex case of Jahi McMath. McMath was declared brain dead following surgery to correct a sleep apnea condition at Children’s Hospital, Oakland CA in 2013. She was 13 years old. Her family refused to accept the declaration of death and insisted she be kept on a ventilator. “Court interventions, news and social media exposure ensued,” Maher explains. “Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco.” Eventually the family succeeded in having Jahi flown to New Jersey, one of two states (New York being the other) which follow a family’s definition of death. This policy was designed to accommodate Orthodox Jews, some of whom believe that the presence of breath signifies life. Jahi remains on a ventilator and feeding tube, with 24-hour care covered by Medicaid; her family still hopes to bring her back to California – where the coroner issued her death certificate in 2014.Grim reaper

Set aside the ethical, racial (McMath is African American,) financial and other questions, what is death? When the heart stops? When breathing stops? Or when the brain is dead? Medical technology can now keep a body functioning after brain death – organ donation is benefiting from this – but at some point, death takes over.

Can we keep control of our lives as they are ending? Increasingly, no, says Dr. Peter Saul, Senior Specialist, Intensive Care Unit, Calvary Mater Newcastle, NSW, Australia. “Dying in the 21st century in a wealthy country,” Saul says, “is now dominated by elderly people with significant disability, sometimes cognitively impaired, faced with making complex end of life care choices.” And those choices commonly follow “standard (medical) protocols and (are) in line with family wishes regardless of preferences recorded in advance care directives.” Australians, like the majority of people everywhere, would choose to die at home, Saul says; but “the entire structure and funding model of Western medicine greatly favors tertiary and hospital care over that provided in the community.”

Saul suggests that “the medical system at all levels would need to become proactive in creating genuine opportunities for choices to be available. This means asking more, offering more education, taking choice seriously and pushing back against a legal system that favors defensive medicine and over-treatment even in the same breath as pushing ‘patient autonomy.’”

So, is there anything hopeful on the horizon for the end-of-life experience? Definitely. Ottowa, Canada psychologist Morry Appelle and his wife, therapist Christine Appelle presented a paper on a discussion group they started five years ago “in an attempt to address more consciously and formally our own concerns of death.” They were surprised to find eager participants who became faithful, regular attendees, and who agreed to allow videos of some of their meetings to be shared. It is a remarkably effective way to confront mortality.

Planet earthThis writer left Lisbon urging the Appelles to publish a book about their novel idea, but you don’t really have to wait for the book. A group of friends or strangers willing to meet together for an extended period of time and simply talk through everyone’s fears and concerns offers an invaluable way to face, and embrace, life’s end. Such an experience could well lead to the patient autonomy and personal choice currently under threat in wealthier nations around the globe. It would undoubtedly help to have someone like Morry &/or Christine Appelle as facilitator. “Mostly,” they said about their experimental group, “we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin.”

The Lisbon conference did a lot of veil-lifting. Also lifted up? Questions worth pondering, wherever on this fragile planet we happen to be sharing our fleeting mortality.

Robert Reich is Optimistic

(A third & final report on the Lisbon End-of-Life conference will be coming around next week; I’m interrupting that sort-of series to write about hearing one of my heroes, Robert Reich.)

Robert Reich 4.24.18Robert Reich, a giant intellect who is slightly shorter than this 5’2” writer, took the stage at a recent sold-out Commonwealth Club event. “You can tell,” he quipped, “that Trump has really worn me down.” When the cheers and laughter subsided a little he added, “Last time I was here, wasn’t I about five foot ten?”

Reich, Professor of Public Policy at the University of California, Berkeley and Senior Fellow at the Blum Center for Developing Economies, served as Secretary of Labor in the Clinton administration and, among other accomplishments, has written fifteen books. His latest, The Common Good, was published earlier this year. In classic Reichian fashion it argues for a return to “moral imagination” and the common good, and leaves you hopeful. “We have never been a perfect union,” he writes at the end. “Our finest moments have been when we sought to become more perfect than we had been.”

Respect – remember that once-common element of the public discourse? – was Reich’s first talking point at the Commonwealth Club. He spoke of the days when legislators commonly had friends from the other side of the aisle, lamenting the current atmosphere that makes it virtually impossible for, say, a Democratic senator to socialize regularly with a Republican colleague. Reich dates this change to the time when Newt Gingrich, the hyper-partisan, combative Republican became Speaker of the House of Representatives in 1995. He told of entering his office while serving as Secretary of Labor to find a group of people going through his files, saying they had permission to do so. “What are they looking for,” he asked an aide. “They’re looking for anything,” the reply came, “that they can use to get you.”

As a child, Reich was diagnosed with a bone disorder commonly known as Fairbanks disease, which results in short stature. Because this often left him the target of bullies, he sought the protection of older boys – one of whom was Mickey Schwerner. When Schwerner and two others were murdered by the Ku Klux Klan in 1964 for registering African-American voters,  Reich says he was motivated to “fight the bullies and to protect the powerless.”

Asked to name the one thing he feels is most critical today, Reich says it is “to get the money out of politics. Money distorts the process,” he says – in what might be considered a mild understatement. Reich also told his audience that “the best way of learning is to talk with people who disagree with you. It forces you to sharpen your argument. You listen to other points of view – and just possibly some of them are correct.”

Robert Reich 4.24.18

Author, fan & new book

The anger he saw in places like Toledo and Kansas City when he was Secretary of Labor Reich says is still very much there. “People are working harder and harder, and getting nowhere.” Even as we bailed out Wall Street, he adds, people are saying “the game is rigged, and it’s rigged against us.” When he visited those same cities – and others like them – prior to the 2016 elections, Reich was surprised to hear many people say they planned to vote for either Bernie Sanders or Donald Trump. “How can you even say those two names in the same sentence?” he asked. “And they would reply, ‘Either one will shake things up.’”

But despite being worn down by the present administration, Reich proclaims that he is optimistic.  “It’s when we are losing something,” he says, “that we recognize its value. People are recognizing their responsibility is not just to vote but to be involved. And secondly, I look at my students, and students from Parkland and Stoneman Douglass high schools (which drew audience applause.) They are committed, engaged, idealistic and determined. There are so many people determined to save our democracy.”

“Your engagement and involvement,” he said to a receptive and enthusiastically pro-Robert Reich audience, “is critically important.”

 

 

Appearances from Beyond the Grave

The End of Life Experience: Lisbon conference #2

Say you have a daughter or granddaughter who flunked out of her expensive school and caused severe friction between you. Now imagine you’ve been dead for a few years – OK, this page is all about imagination just now – and that errant offspring just finished a PhD program, with honors. She creates a hologram of you, calls it into being and holds up the graduation photos. “What do you think!,” she asks? “Oh,” you say, in your formerly mortal voice, “I’m so terribly proud of you. Congratulations!” You smile broadly, and your offspring smiles back.

holographic doveWelcome to the 2030s. Or probably early 2020s. Holograms are here, and the potential for use in after-death encounters is just one element of this technological wonder. That vision of the end-of-life/afterlife was offered by Sierra College professor Kim Bateman, at the recent conference I was privileged to attend, in a fascinating presentation titled “Dialogues with the Digital Dead.” Bateman suggested useful possibilities such as “allowing the dying to finish unfinished business and the bereaved to more vividly imagine their loved ones without a physical body.” But her intent was also to look at “ethical concerns about consent, privacy, and the emotional safety of those participating” in what today seems more science fiction than potentially useful technology. Conference participants had a lot to say.

If you watched the halftime show at this year’s Super Bowl (I did not, so this is hearsay) you saw a performance by the wildly popular artist Prince. Since he has been dead for some time now, it was not really possible to book him – but it was possible to create a hologram, and that was what you saw. Someone at our conference said Prince had actually been opposed to holograms – which raises ethical issues he is no longer able to discuss.

But here we are. These incredibly realistic holograms can be digitally, posthumously, created by, say, your children or grandchildren, Bateman explained. The computer digs through your electronic history: every email, voice mail, text, Facebook post, Instagram picture, etc, etc, etc. What emerges is the pre-death you.Holograph dancer

Should this bring about a posthumous reconciliation between you and your formerly deadbeat offspring, that seems a clear benefit of the technology. But as with most questions surrounding end-of-life issues today, a lot is not so clear. Your surviving friends and relations will continue to grow and change after you die. Not so the holographic you. It has you frozen in time as the pre-death you. What if you had lived a little longer and decided a college education wasn’t all that important? Here’s your hologram being pleasant, but reconfirming the mortal you as a judgmental grandma.

As with other contemporary end-of-life issues covered at the Lisbon conference, this one raised a long list of questions. Would you want to be recreated in a hologram after you die? For how long after you’ve been gone? To whom should you leave instructions pro or con – or should you stay out of it and hope for the best? If a holograph of you is created, with whom would you want it to interact? Or are there those with whom you would specifically not want to interact, holographically speaking? Should you have the right to make these decisions yourself, while you’re still in the flesh?

If these questions seem all too spooky and futuristic, I apologize – but the spooky future is upon us.

A Global Look at Death & Dying

Three things you and I have in common with the rest of the world: We are born, we live, we die.

Lisbon - Conference brochure

Conference brochure

Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive ConnexionsInterdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.

As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.

Lisbon - Castelo view

Lisbon at dusk

In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:

Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.  Pain

“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”

In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.

Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?

Lisbon presentation

Doing my presentation

My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?

After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.

All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.

Lisbon conference group

The 2018 EOL Experience Conference Group

 

Next week: The Lisbon Conference: Appearances from beyond the grave

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.

Aging, Guilt & When to Complain

One of an occasional series on the advancing years

It’s more than a little ominous: 85. I mean, look at all those good people who missed this mark in just the past few months or so: Oliver Sacks, 84 – just barely. Dead Poets Society founder Walter Skold, 57. Peter Mayle, 78. David Cassidy, 67. Stephen Hawking for heaven’s sake, 76. Approaching 85 is its own little why should I still be around anyway? season of guilt.

Guilt - Lachlan Hardy

(Lachlan Hardy)

So perhaps it’s only right that the impending milestone might involve a teeny negative or two. Guilt will do it every time. For me, it’s a nagging suspicion that this party is about to be crashed. On March 15th of my last turn at being 84, for example, I woke up at 5 AM, even before the alarm rang, to catch a flight beginning an overseas adventure. Everything went right. Bags properly packed. Good breakfast. All devices and power cords cross-checked. Problem-free trip to the airport. Zip through security. Thirty minutes before boarding time, when I heard my name being summoned to Gate 11 it was not even a surprise. Probably left my wallet at home, I figured, or someone just called to say the conference had been cancelled. It was so unexpected, this call, that by the time I reached the gate I was fully reconciled to having had too much good fortune for any one day. They wanted to offer me $500 on a future flight if I’d trade my Business Class upgrade. Such is the emotional hazard of approaching 85.

Then there is the limitations business. Pre-80, who worried about acknowledging limits?  Certainly not I. At 72 I signed up to run my first marathon, just because I figured everyone should try to run a marathon before hitting 75.Runner A bout with breast cancer intervened to mess up my training, but I got back on track at least enough to finish the half, feeling absolutely confident I could’ve kept right on going. (Although probably not for another 11 or 12 miles.) And then. One day in Paris, having inched past 80 with no further temptations into distance running, the ominous stairs challenge sneaked up on me. I had only recently moved, at the time, out of a 4-story house in which I was constantly zipping from laundry (ground level) to studio (4th floor) with nary a care. Thinking it would be fun to trip up the circular staircase to the top of Notre Dame right before closing time, I got about 30 steps and decided to let the rest of the group go ahead. More slowly, I climbed another 20 or 30 steps before my little heart said, “I don’t think so.” This would’ve been less embarrassing were not the Notre Dame lookout designed as one way Up, straight across, and one way Down the other side. Luckily for me the concessionaires were just closing up shop and let me follow them down the Up staircase, which is why I did not have to spend the night locked inside the cold stone walls of Notre Dame.Nob_hill_view

Ever since, I have begun to notice limitations on previously-negotiable San Francisco hills. If the heart doesn’t send out alerts, the lungs huff and puff their indignation. This happens a few times to my intense consternation, and I make an appointment with my doctor. I complain a lot. She orders tests that proclaim everything is just fine and dandy. She speaks briefly of the really sick people under her care, mentioning a few of their ages and afflictions. “You’re 84 years old,” she observes; get over it.”

How am I going to complain when I hit 85?

 

 

On Living the High Life

This all started when my #1 son-in-law Paul said, “Oh, that’s too far for Gran to be flying coach . . .” As if he hadn’t already made enough points by cutting short a trip to Belize so my daughter Sandy could do a quick turn-around and come meet me in Portugal.Clouds stock image1 I have, therefore, been happily anticipating a Business Class flight from San Francisco to Boston, and thence to Lisbon for an end-of-life conference where I recently presented a paper. (I try to drop that phrase wherever possible: “presenting a paper at a conference in Lisbon.” More on that extraordinary conference soon.)

Lisbon TAP dessert

I will skip right past the San Francisco to Boston leg of the journey (which was indeed spiffy) and cut to the Boston-Lisbon leg. If you’re a Business/First Class person, you may want to skip this blog post entirely. It would be the polite thing to do, similar to looking the other way when you notice tourists staring up at giant skyscrapers. You will already be familiar with scenes like this one below, of my mini-apartment complete with its own shelves, tabletops/pull-down table, overhead and reading lights and seat that goes from upright to reclining to bed with way more space (thanks to the little tunnel in the seat in front of it) than my 5’2” self could possibly need.

Lisbon TAP seat

Including the Intl NYTimes!

But if you’re not, and you’re curious about how the other 1% lives, this is a peek into the (sort-of) secret alternative to the grit-your-teeth-&-curl-up-in-your-window-seat version with which most of us are familiar. Once you learn the operational secrets, it is definitely the way to do intercontinental travel.

Along that line, I will back up and make one observation about the SF-Boston leg. Had it not been for the charming young Orthodox man in the seat next to me, who clearly flies this way a lot, I would never have figured out how to get the tray down, identify the power plug, turn the reading light on, etc, etc. When the hot towels came around, he leaned over and said, “Be careful, these towels are very hot.” And as we de-planed, after I told him his mother had raised him well to be kind & helpful to little old ladies and I appreciated that, he thanked me and said, “Good luck!” I suspect he thought I’d need it.

While the coach dwellers were still rearranging their several cubic feet of Stuff into their allocated several cubic inches the canapes arrived at my apartment, quickly followed by the soup and salad, followed by the entree and rather fancy dessert.Lisbon TAP canapes Meanwhile, my apartment seat/bed was negotiable into a dinner-table accommodation, recliner or bed with the push of a button I now understood (thank you, SF-Boston seatmate.) It’s tempting to meditate on ways the airlines might share just a teeny bit of these blessings with your traditional coach family. But definitely easier to postpone all egalitarian impulses, sit back (or lie down) and enjoy the adventure. Which I did.