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?

 

 

Emergency Medicine Then & Now

cartwheels-sq

The author and sister Mimi, circa 1940

We were, I think, about six and eight. My sister Mimi and I came home from somewhere, hot and tired and thirsty. We leaned our bikes against the side porch and ran up to the French door – which was stuck tight, as often happened on muggy days. I gave the door a mighty wham. But I missed the wood frame I was aiming for and my hand crashed through the glass pane. I stood there saying “Oh my! Oh my!” until Mimi, who was wise beyond her years, reached through the hole, turned the knob and shoved the door open. I think I was still “Oh my!-ing” while Mimi lead me through the living room, hallway and dining room to the kitchen, splattering blood along the way. We grabbed dish towels, tied them around my arm, returned to our bikes and headed for the offices of our friend Dr. Enos Ray.

Like most small-town doctors’ offices in the 1940s, Dr. Ray’s office consisted of several rooms adjacent to his home – about 8 or 10 blocks from our house. He stitched up my wound, after listening to the story and rather cleverly asking if we had left a note of explanation for our mother. Oops, hadn’t thought of that. Mrs. Ray obligingly started calling around to see if she could find our mother before she encountered an unexplained bloody scene on coming home from somewhere Mimi and I didn’t remember. Dr. Ray probably sent our parents a bill for $5.

Scar

The scar survives

My memory of the entire  incident ends with the bike ride home, all beautifully bandaged and hoping we would see a lot of friends on the way. But the scar (now getting pretty dim amidst the blotches and mottles of seven+ decades) is a constant reminder of my days with the World’s Best Big Sister and a current reminder of the changes in healthcare over those decades.

 I was re-reminded recently. I am fond of remarking at the slightest opportunity that I still, in my golden octogenarian years, have all my original parts – give or take a few teeth. Two of those unoriginal teeth are in the form of very expensive crowns attached for the last 15 years to a far more expensive (not to mention painfully acquired) implant. Not long ago, they decided to swing slightly outward, without so much as a by-your-leave. After a moment of horror (and gratitude that this happened at breakfast with no one but a sympathetic husband at the table) I realized I could nudge them back to where they belonged. I took to chewing on the other side. I called my good friend, longtime neighbor and fine dentist Richard Leeds. He said I should make an appointment with his implant friend Dr. Chin. “You’ll really like Dr. Chin,” he said. “It’s kind of like going to see the mad scientist. But he’s the best.” So I waited until Dr.Chin returned from vacation. And indeed, despite the very proper and competent staff who welcomed me, there was something of a mad scientist to the good doctor. “Let me just peeeeeer around here,” he would say, reaching for strange radar-beam lights and x-ray machines, studying my jaw from every conceivable angle.

 Eventually, he said, “There’s good news and bad news. The bad news is that you’ll Grinprobably need an expensive new crown. The good news is that the implant is just fine so you don’t need surgery, so you don’t need me.” Whereupon he shook my hand, said it had been a pleasure, and no, there was no charge.

 Later, summoned back to Dr. Leeds’ office – and anticipating future appointments for expensive new crowns – I thanked him for sending me to the charming mad scientist. He said he had a few not-so-mad-scientist ideas of his own. Whereupon he gave me a crash course in types of crowns and types of implants now in use, and explained that he thought he could screw my errant teeth back to where they belonged. The explanation was accompanied by several rather vehement maneuvers, and followed by extensive fiddlings around, bite-checking, tooth-filing and what have you. And lo, I am back to where I started with the non-original teeth and their original compatriots. Dr. Leeds will send a bill for considerably more than $5, but probably thousands less than a new crown would have cost. I could not help remembering the days of the de riguer family doctor and family dentist.

Sadly, it should be noted here that Dr. Ray has long since gone to his rewards, and Dr. Leeds is no longer accepting new patients. But given the precarious state of healthcare in the U.S., I can only be grateful for the extraordinary emergency care (Kaiser Permanente included) this middle-class American has been blessed to receive.

Would that healthcare were such for everyone.

Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

Farewell to a Not-All-Bad Year

2016

Farewell to 2016? People all over the globe are saying good riddance.

There are those of us in the U.S. who believe that climate change is real, that the vast majority of Muslims are peace-loving and the vast majority of Mexicans are neither rapists nor murderers, that women deserve better than to be denied rights and casually groped. Even those who believe otherwise admit reason and decency suffered some killer blows in the past year.

Poor 2016. Throw in global goings-on with the Brexit vote and the tragedies in Syria, Venezuela and too many troubled spots to mention, and it would seem there’s not a lot good to be said for the year. But it actually wasn’t all bad.

For openers, there are the things that didn’t happen: Nobody let loose a nuclear missile that would have begun the destruction of the planet. The Mosul Dam didn’t fail. Northern California didn’t have the devastating earthquake for which it is overdue. Even the luxury tower set to zoom up and block this writer’s 7th-floor balcony view of the far-off San Bruno mountains didn’t materialize. (OK, we know it’s coming. New York developer has the right to build to 240 feet, but so far the city says he can’t have an exemption to go 200+ feet higher.) So from the frivolous – which a 7th floor view certainly is – to the horror scenario, 2016 could surely have been worse.

good-news

And as for the good news? Glancing back over the posts on this site over the old year is one way to find a lot of it. A random few:

Mutual support and understanding among different religions was alive and well in 2016, as it will continue to be in the new year – at least in much of the U.S. Several times I wrote about events sponsored in San Francisco by the S.F. Interfaith Council, such as the Thanksgiving Prayer Breakfast – at which an overflow crowd representing people of all faith communities reaffirmed their commitment to human rights, social justice and world peace before launching into a rousing chorus of Leonard Cohen’s “Hallelujah.”

Philanthropy is alive and well too. In May, a 3-year-old friend of ours decided to open his piggy bank and give the money ($32.60) to his two favorite charities: the local library and the hospital where he and his baby-sister-to-be were born. His philanthropy spurred several matching gifts. Who says you have to be a zillionaire to be a philanthropist and do good in the world?

More than once I wrote about one of my real life heroes, Dr. Willie Parker, an African American physician determined to keep abortion access available to those who are denied reproductive healthcare: most often poor women of color. Nothing will slow down Willie Parker.

justice

And speaking of heroes, In January I was fortunate to be part of a collaborative celebration of Martin Luther King Day, with a predominately white church and its predominantly black partner church, affirming King’s message that only light can drive out darkness, and only love can drive out hate. It’s only a small effort in one small part of the globe, but as members of the two communities work (and play and sing) together, light shines on racial injustice.

There have been other optimistic highlights, such as the Internet Archive celebrating its 20th anniversary. The IA is a mind-bending, increasingly successful effort to make All Knowledge Available to All, for free. Impossible? Believe. Another blog highlighted another impressive physician, Dr. Angelo Volandes, who was touring the country last year with his new book The Conversation. Volandes is on a campaign to end aggressive, unnecessary, unwanted and often cruel end-of-life treatment. What happens in emergency rooms and intensive care units during the last few days of life for millions of Americans is an expensive disgrace; Volandes’ efforts will help change that.

In August I was caught in the middle of Delta’s computer meltdown, and spent some interesting hours trying to get from Atlanta to San Francisco. What was worth writing about were the many acts of kindness among airport crowds. They reminded me of flying from San Francisco to Portland OR several days after 9/11, when it seemed everyone in America wanted only to be kind to everyone else.

That spirit is still here, somewhere; we just need to recover it after a bruising year.

world-peace-1

 

 

Talking Your Way into a Better Death

Angelo Volandes

Angelo Volandes

“If you do something to my body that I do not want,” says physician/author Angelo Volandes, “it is assault and battery. But if I do the same thing to you in (a medical situation,) it is standard of care.”

Volandes thinks this last is a bad idea. He is on a campaign to change the way American doctors and patients, and indeed the country at large, understand what is done to American bodies at life’s end. He spoke of this campaign, and his new book The Conversation that outlines it, at a recent Commonwealth Club event in San Francisco. When he’s not taking time out to promote the book and the campaign, Volandes practices internal medicine at Massachusetts General Hospital in Boston and is on the faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning Decisions, a non-profit foundation dedicated to improving patients’ quality of care.

“Ninety percent of people want to die at home,” Volandes says; “most die in hospitals. There is a misalignment between the type of medical care they want and what they get.” About this unwanted care? “If you’re in the hospital and get unwanted care you never bargained for, I still get paid for it.”

After watching too many patients endure end-of-life treatments he was sure they would not have chosen, Volandes started an unusual practice: taking every one of his patients to visit the intensive care unit, and some to visit the dialysis unit. Once they gained a better understanding of what some of the aggressive treatments – CPR, breathing machines, etc – actually looked like, the patients almost always moved away from “Do everything” to comfort care as their choice.

The basic change Volandes believes is needed begins with a conversation between physician and patient. Those conversations do happen, and there is now Medicare reimbursement, but few physicians find them easy, and few patients know how to inaugurate them or what to say. “Never did a senior physician have to certify that I could talk to a patient,” Volandes says. “The patient needs to know ‘What are the questions I need to ask? What are my options?’ Life’s final chapter needs to be written – but the problem is, I’m writing it (instead of the patient.)”

This writer has been advocating for individuals to write their own final chapters for over two decades. With others writing those chapters instead, the costs are monumental and unnecessary – and millions of Americans die after undergoing painful indignities they would never have chosen. Physician aid-in-dying – approved by a majority of doctors and 7 in 10 Americans and now legal in five states – is one key piece of the puzzle. But the elephant-size puzzle piece is how to get every one of us to make known, well before those “end-of-life” days arrive, what medical care we do or do not want.

Volandes’ conversations could put that piece in place. Every person alive who takes time for the conversation (and for writing it all down) will likely die a better death.

 

 

Vin Scully Leaves Us With a Smile

Vin Scully

Vin Scully

What’s not to love about Vin Scully?

Born and raised in the Bronx, where he delivered beer and mail, pushed garment racks, and cleaned silver in the basement of the Pennsylvania Hotel in New York City. Lost his first wife – of 15 years – to an accidental medical overdose. A year or so later, married Sandra, to whom he remains married 40+ years later. At the age of 8 – this would’ve been in 1935 – he decided he wanted to be a sports broadcaster. And in 67 seasons of broadcasting Dodgers baseball games he has accumulated a long list of awards – without ever being profane, boorish, self-serving or fodder for the scandal mills.

This writer cannot claim to be any reputable sort of baseball fan. But admirable public figures are in short enough supply that one has to be grateful for Vin Scully.

Giants fans loved having Scully wind up his illustrious career in San Francisco recently, in a stadium with more “Thank You Vin!” signs than orange rally flags. Several signs in the stands read “This Once We’ll Be Blue” – in honor of Scully’s beloved Dodgers. (The Giants went on to win the game.) But it was up to the New York Times to publish the entire transcript of his narration of the top of the ninth inning – his final words to the listening baseball public, headlined Vin Scully’s Final Call: I Have Said Enough for a Lifetime. Enough to include a few nuggets in between the calls (“And the strike . . .”)

“There was another great line that a great sportswriter wrote, oh, way back in the twenties,” Scully ruminated on air. “A. J. Liebling. And it said, ‘The world isn’t going backward, if you can just stay young enough to remember what it was like when you were really young.’ How about that one?

“Ground ball foul. 0 and 2 the count to Yasiel Puig . . .”  And later –

“That was awfully nice. The umpire just stood up and said goodbye, as I am saying goodbye. Seven runs, sixteen hits for the winning Giants, 1-4-1 for the Dodgers. …I have said enough for a lifetime, and for the last time, I wish you all a very pleasant good afternoon.”

It was an elegant departure for a good man, ending a long and distinguished career. But this writer’s favorite snippet, among all the short tales and one-liners that wound through the reportage, was this:

“I’ve always thought it was attributed to Dr. Seuss, but apparently not. It’s still a good line, and it’s one certainly I’ve been holding onto for, oh, I think most of the year. … ‘Don’t be sad that it’s over. Smile because it happened.’”

What a treat to have something – someone – to smile about on the national stage today.