How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18

The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

John McCain & Death with Dignity

McCain, John-012309-18421- 0004

Official portrait (Wikipedia)

John McCain did it right. Not just carefully constructing the last word in his acrimonious exchange with Mr. Trump, or in the countless ways he demonstrated patriotism, dignity & courage and pointed out how democracy is now being threatened. I disagreed with his political positions more than I agreed with them, but in the last few years I’ve sent him more than one thank-you letter. The thumbs-down elicited my most enthusiastic note. But here’s what else he did right:

John McCain kept control of his dying – which is to say, the last piece of his living. In so doing, he left one more gift to America: some suggestions about how to die.

We spend untold energies, and untold billions of dollars, on the national obsession with avoiding death. In exremis we go to the Emergency Room – where tests and procedures are undergone, suffering is often prolonged and increased, and costs skyrocket.

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Talking about dignified death with Kathryn Tucker

Here is some food for thought from a recent Arcadia Healthcare study: Just looking at the costs (forget the pain & suffering) of the final months of care according to where that final month took place – for the 42% who died at home, $4,760. Another 40% died in the hospital: $32,379. Dying in a nursing facility came in second from the top at $21,221.

I have no idea where John McCain was when he died, but I’d be willing to bet he was at home. Home is where 99% of us say we want to die – but we don’t work very hard at making that happen. Instead, we put off making plans, writing advance directives, talking to friends and family about what we want, planning our funerals. Seriously now, do you have anything written down about what you’d like for your memorial service? Senator McCain reportedly spent eight months at the end of his life lining up eulogizers, specifying music, contacting speakers, saving his family that often burdensome task.

Kathryn Tucker 9.20.18

Kathryn Tucker

But it’s the business of dying – living as one chooses right up until the time of death – that McCain seemed to do so well. Not many of us pay such attention. He apparently didn’t need to hasten his dying, but we would all do well to know about hastening, whether we choose it or not. Even in states where medical aid in dying is legal, dying patients put off making their own decisions, or find out too late that their physician will not participate. Fortunately for us all, there are people like Kathryn Tucker, Executive Director of the End of Life Liberty Project, fighting to protect and build the movement toward death with dignity. (I was privileged to host an event for the distinguished Ms. Tucker recently, hence the photos.)

So maybe you’re not as strong-willed as John McCain. Maybe you don’t have access to the Navy Band for your memorial service. But you can acknowledge that dying is something we humans do and write down what you want (or don’t want, like painful, expensive last-minute heroic measures) for yourself as you’re doing it. You can TALK to family and friends. You can send a contribution to ELLP. Or Death with Dignity or any on the other organizations working to make death with dignity possible.

 

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.

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?

 

 

Emergency Medicine Then & Now

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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.