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.

 

A little food for upbeat thought

“There is nothing wrong with America,” Rep. Adam Schiff said in a recent Commonwealth Club address, “that cannot be cured with what is right in America.” He was quoting former president Bill Clinton, surely a line worth quoting. Schiff’s overall message was so upbeat, at this particularly downbeat time in U.S. history, that this writer/listener came away hopeful.

Adam Schiff at CClub 2.20.18

Adam Schiff with Ellen Tauscher

Schiff doesn’t want us to be dismayed and overwhelmed. Worried about pollution? Climate change? Immigration? Reproductive justice? Gun control? Environmental destruction? Dreamers? Pick one, he advises. You can make a difference; pick one.

 
This seems such a welcome diversion from the ongoing national malaise that this space today is dedicated to additional pearls of wisdom and crumbs of food for thought from the same evening. All of these were gleaned from Commonwealth Club events and flashed on the screen while the sold-out audience waited for Schiff and his conversation partner, former Rep. Ellen Tauscher. Enjoy.

“Hope is the active conviction that despair will never have the last word” – Sen. Cory Booker

“Sometimes I wonder if our grace is taken for granted” – Van JonesGrace

“Good and evil exist in all races and all types of people no matter where they come from” – Kareem Abdul Jabbar

“The Republican party is my vehicle, not my master – I have the right to define the Republican party too” – Governor John Kasich

“Fame is a completely separate category from being an actor” – Frances McDormand

“The question is not big government or small government; the question is who government is for” – Robert Reich

“Humans crack under pressure; machines do not. But humans can dream; machines cannot.” – Garry Kasparov

Clouds stock image1
We try to avoid being overly political in this space. But we hope you enjoy pondering these gems – which happen to begin with a comment from an American politician and end with an astute observation from a Russian chess player.

In Sickness, Health & Clutter

Some weeks ago – I have lost all track of time – I embarked upon an adventure with this year’s Not-the-Flu. Whatever it is. A bug you don’t want to mess with, that much I can tell you. One marker I do have: exactly two weeks and four days ago my good doctor – who assured me it was Not The Flu – estimated I was over the worst of it. Oh, well.Cold

The Not-the-Flu means you skip the chills and aches and fevers of the Real Flu (count your blessings) and you probably won’t die. But you still have the existential horrids and wearies, a little cough, snuffles, sore throat, and mostly you want to pull the covers up over your head and feel very sorry for yourself. This is not easy to do if you’re a fulltime caregiver, as I am, which in my opinion entitles me to feel REALLY sorry for myself. The caregivee, for his part, has spent the past weeks saying – every time I saw a potential opportunity to go back to bed and pull the covers over my head – “Why don’t you do that?”

In between, since the Not-the-Flu saps your energy but leaves your brain functional, you are left with the question of what to do with yourself. Leaving the house is not an option except for utter necessities, because staying away from humankind is #1 on the recovery-plan list. That leaves you to read the newspapers – which can definitely make you sicker – and drink liquids and take vitamins. Boring. OR! You can dig out past, present and future writing projects and finish them all. Then what?Clutter-desk

For me, the obvious answer is to de-clutter. A cleaned-out drawer is far more curative to this writer than a super-size bottle of mega-vitamins. So in an effort to keep myself from going totally stir crazy, I have now plowed through three formerly messy drawers, the box of Christmas cards – – – and my desk. This is not to say that orderliness, a virtue!, is an ongoing trait I can claim. Put stuff in drawers, close the drawer, most of the time I’m fine. But actually going through messes, throwing stuff away and neatening up – as we used to say in the old country – this is balm for my soul. And therefore, cure for whatever ails.Clutter-piles

Not so the caregivee. My excellent spouse thrives on piles. Piles of clippings, notes, magazines, letters, papers, God only knows what is at the bottom of some of his piles. They are everywhere he regularly inhabits, a comfort and balm to his soul. So ever since I undertook to clear out a few piles (and okay, filing cabinets too) in the small formerly-office room into which we plan to install a day bed, it has been acutely painful for him.

The Not-the-Flu presented a tipping point. A few hours sleep, say, between 3 and 7 AM when the caregivee is not always quiet and still as a churchmouse, made the day bed (it’s on order) ever more attractive; confinement to the house increased my neatening-up urges about 300%. Clutter-cornerToday emerged a pristine corner, utterly cabinet/clutter free.

In retaliation, the caregivee did what probably any respectable partner so threatened would do: he came down with the Not-the-Flu. Oh, me.

Hearts - 2

 

Kindness for the New Year – Why not?

About that cup of kindness – –

Let’s take a cup for a few of the auld lang synes of 2017, in the highest hopes for this brand new year.

Planet earthA cup for the planet. Despite the best efforts of the Environmental Destruction Agency to foul the air and water, and similar efforts to open up our lands for desecration and private development, this fragile globe survives. You can Google “Good news for the planet” to boost your spirits. Here’s a toast to everyone who switches to solar, picks up litter, and pays attention to ways we can protect our grandchildren’s heritage.

A cup for women! Beginning with the inspirational Women’s March and marching through to the #MeToo movement, women have earned more than a little kindness yet. They won’t get much of it in the reproductive justice realm. You cannot confer rights on a fetus without denying rights of the woman carrying it.march - crowd Anti-abortion forces sneaked wording about rights of “the unborn” into the harsh new tax bill, so chalk one up for regression into the dark ages of womankind. But here’s a cup o’ kindness toast to every #MeToo, as well as to heroes like Willie Parker out there fighting to protect all women.

A cup for people of all faiths working together. There may be constant headlines, not to mention tweets, designed to set us against each other, but interfaith groups across the country are determined to keep respect and mutual support alive. Google “Interfaith work” in your city or state and find how many kindnesses are underway.

A cup for the hopeless. Remember those huddled masses yearning to breathe free? They’re still out there, in force: refugees and asylum-seekers, people mired in poverty or joblessness, sick children without healthcare, undocumented immigrants in families being torn apart. ENDURING FREEDOMBut if our government is turning its back on them, a multitude of individuals and organizations are working around the clock to get the lamp lifted again. Google “Help undocumented immigrants,” or “Fighting poverty in my community” for starters. Cups of kindness abound.

And a cup of kindness for kindness’ sake. A group of people with vastly diverse backgrounds and philosophies met just after New Year’s Day to talk about how to retain optimism – hope, at least – on all of the above in the face of current divisiveness and a mentally unbalanced president. Said one member of the group: “It helps to commit conscious acts of kindness throughout the day. Might be just a tiny thing, but it makes you feel better, and kindness can be contagious.” Pope Francis thinks so. In his New Year’s Eve homily he expressed optimism about ordinary people going about their lives doing ordinary acts of kindness. The “artisans of the common good,” he called them. So here’s a toast to every artisan of the common good. May we all join their ranks this year.

Footprints of kindness

A New Year’s wish: Human Rights for all

UN emblemBelated Human Rights Day greetings to all. In case you missed it, Human Rights Day was celebrated around the globe on December 10. It was the 69th anniversary of the proclamation of the Universal Declaration of Human Rights by the United Nations General Assembly in Paris, 1948.

Admittedly, some of us have done a little better than others with this. But before we Americans get to feeling righteous, it’s worth noting that the U.S. is among a handful of countries (Russia, Palau . . .) which have not ratified the Convention on the Elimination of all forms of Discrimination Against Women (CEDAW.) We’re okay with the Convention Against Torture, but not with the Convention on the Rights of the Child. It’s complicated.

Are women’s rights human rights? What about immigrant rights? Or the rights of workers (tech geniuses, janitors, whomever) to good working conditions? Or the rights of Yemeni refugees to food and shelter?

Fran & Ally McKinney 12.10.17

The author with Ally Timm

One person who believes human rights apply to all of us is Allyson McKinney Timm. Timm spoke recently at Calvary Presbyterian Church, trying to explain the UDHR (and a lot of complicated UN acronyms) and why human rights are basic to Christianity – as well as other religions. “Human rights,” she explains, “are inherent, apply to every individual based solely on the fact of being human. The only requirement is being a member of the human race.”

In the Preamble to the Universal Declaration of Human Rights (a document worth reading) “Member States…pledged themselves to achieve, in cooperation with the United Nations, the promotion of universal respect for and observance of human rights and fundamental freedoms,”

We wish.

Ally McKinney Timm was a successful attorney with a high-powered San Francisco law firm, advocating for justice in the juvenile prison system, when she left that comfortable life to move to Uganda and establish a field office of the International Justice Mission, defending widows and children there. She previously worked with the Rwandan genocide trials. Eventually she returned to Yale, first teaching human rights in the law school and then earning a Master of Divinity degree. All of those credentials and experiences led Timm to found Justice Revival, which she now serves as Director. Having witnessed the worst of what happens when human rights are denied, she has a determined passion for Justice Revival and its mission: to inspire, educate, and mobilize Christian communities to defend human rights for all. (Some conservative Christian organizations have been at the forefront of successful efforts to keep the U.S. from ratifying CEDAW, which is designed to eliminate discrimination against women.)

Eleanor Roosevelt UN monumentAnother woman with a passion for human rights was Eleanor Roosevelt. Wife of Depression-era President Franklin D. Roosevelt, the country’s longest-serving first lady was among many other things, the first U.S. representative to the U.N. Commission on Human Rights. Her pivotal work on creating – and securing near-unanimous support for – the Universal Declaration of Human Rights won Mrs. Roosevelt an accolade never seen before, or since: a standing ovation for one of its members by the entire United Nations Assembly.

About that Declaration, and what it proclaims? Just a few of the basic rights to which every human on the planet is entitled include:

Life, liberty, security and equality

Freedom from discrimination

Freedom from torture and cruel or degrading punishment

Privacy: freedom from interference with home, family

Freedom of religion, conscience, belief

We wish.

You can read the entire document here. If there were ever a better roadmap to peace on earth, it would be hard to find.

Happy New Year, wherever on earth you may be. And God bless us every one.