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.

On Being a Blessing

There was an invisible pall hanging over the banquet hall.

An annual feel-good celebration of a cherished cause, the room was filled with friends and supporters of the San Francisco Free Clinic. The Clinic offers medical care for the uninsured; the pall had to do with the new President-Elect’s pledge to increase the ranks of those uninsured by unknown millions by immediately repealing the Affordable Healthcare Act.

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For 23 years, SFFC supporters have filled the same banquet hall. The annual event, initiated by the late San Francisco investor/philanthropist Warren Hellman and his wife Chris, generates the entire budget for SFFC’s operation. Not coincidentally, the San Francisco Free Clinic was founded 23 years ago by the Hellmans’ daughter and son-in-law, Tricia and Richard Gibbs, two young physicians who decided to throw over the prospects of their lucrative medical practices in favor of starting a free clinic for the growing ranks of uninsured in need of quality medical care.

(Full proud disclosure, this writer and her husband have been supporters of the Free Clinic since its opening day.)

A highlight of the annual event has always been brief closing remarks from the host, and after Hellman’s death, this task fell to the Drs. Gibbs. This year, Richard Gibbs said a few words and then turned the podium over to his wife.piggy-bank-w-stethoscope

“One thing I have now learned,” she said, “is never to write a speech the day before an election.” She went on to explain how the Free Clinic has made incremental progress in its mission every year since its founding, and she had prepared remarks about that narrative with the expectation that this would continue. With the election of Donald Trump, though, comes the realization that the story of ongoing progress – Clinic staff not only provide care, they regularly guide clients into finding affordable insurance – will encounter a speedbump. Acknowledging that many in the room probably voted for Mr. Trump, and that politics would be inappropriate to the event, Gibbs said she still had wanted to find a way her remarks could be relative and upbeat.

So she turned to the story of Abraham. Gibbs is a serious student of the Torah, and would not have had to spend extra time on recalling that story. She noted that Abraham’s narrative was not incrementally always upward, but had its own speedbumps.be-a-blessing

“God told Abraham to be a blessing,” she said. “And I realize that’s what we can do. You are all a blessing to (the Free Clinic.) We can all go out and be a blessing.”

For election week in California, it was a reassuring thought.

 

Loss, Love and Loyalty

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Several decades ago a close friend of mine lost her only son in a senseless, tragic accident. He was in his late teens, on his motorcycle, on his way to work at a part-time Christmas season job. All of which added to the unspeakable sadness: a promising life cut short amidst the merriment of a season of joy.

Her friends gathered around to do what we could. We brought food, made lists of callers, tried to keep track of daily needs. My friend’s daughter, a best friend of my own daughter, suddenly found herself the middle child of three girls, all bereft of the one brother they had so loved.

In the large, shifting, changing, sorrowing group of those who came to the house  were a number of young men also in their late teens who had been friends of the one now gone from their midst. They said to the bereaved parents, “We’ll always be here for you. We’ll always remember Mark, and represent him in your lives.” The kind of thing people often say at such times.

These were teenagers. Ordinary kids starting out in life – who had been in their own share of ordinary teenage mischief. In the ensuing years they had their own share of ups and downs. But as it turned out, they were true to their word. They were there for Mark’s parents at Christmas and New Year’s, graduations he would have shared, special times he would have been a part of.

Time passed, Mark’s friends matured as his parents (and this writer) aged.

Recently, Mark’s father died. I happened to be back in town at the time – though like many of those young people I had gone on to life elsewhere – and was happy to be able to be with my old friend and her daughters at his memorial service. It was a bittersweet time: he had lived a full and honorable life; old friends had come to celebrate that life and talk of the good times we had shared. My daughter, still best friends with Mark’s sister although they live on opposite coasts, was there with me.

As I looked around the gathering after the service I slowly began to recognize middle-aged men I had known all those years ago. Several had married women I recognized — also from all those years ago. They were now telling stories of their own children who are starting college or launching their own new lives. They were Mark’s representatives. The stand-ins for their long-ago friend whose memory they would not let die, whose presence they would certify to the mother who lost him so long ago.clouds-stock-image

How to make sense of it all, young life cut short, long life come full circle? How, indeed, to make sense of life and death and loss and continuity?

Mark’s friends, I think, help answer those questions. Out of loss and tragedy come love and loyalty. Out of singular death comes communal life. Out of anguished sadness comes humanity. We all come and go, but we’re all in it together. For a few years or a few decades – but together.

 

Caregiving and the fight-flight-freeze response

Judy Long

Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

 

Looking Globally at Death – & Life

Buda-conf.5In Japan the shift from Buddhism to secularism is complicating life and death. Ireland has launched a nationwide effort to encourage end-of-life planning. A Celtic Storyteller now based in Canada draws on her training as a nurse in helping people through illness and grieving. And at the University for the Creative Arts in Farnham, UK, one researcher/textile artist explores the intricate usefulness of cloth in the mourning process.

These were a few of the insights into end-of-life issues around the world shared at a recent Inter-Disciplinary.Net global conference in Budapest, Care, Loss and the End of Life. The conference provided a perfect excuse – once the abstract for my own paper was accepted – for this writer to take off several weeks for a memorable trip to Paris, Cologne and (eventually!) Budapest. The latter two ancient and wonder-filled cities I had never visited. More on travels later. This essay is a severely abbreviated commentary on a remarkable event, and explanation of the absence of any other commentary in this space over recent weeks. (The digital world does seem to have kept right on turning without my assistance.)

Inter-Disciplinary.Net was founded in the late 1990s by Dr. Rob Fisher, who gave up a tenured position at Oxford (not something many people would be inclined to do) to devote his entire and considerable energies to bolstering the “interaction of ideas, research and points of view that bear on a wide range of issues of concern and interest in the contemporary world.” The recent conference was the second global Inter-Disciplinary.Net event this writer has been privileged to attend, and they seem just to get better. As with more than a decade of conferences on end-of-life (and several other) issues, Care, Loss & the End of Life was organized and run by Nate Hinerman, PhD, Dean of Undergraduate Programs at Golden Gate University in San Francisco.  The following brief glimpses into end-of-life matters in other countries are summarized from three out of nearly two dozen presentations.

ancestor altar

Tomofumi Oka of Sophia University in Tokyo spoke on “Making Peace with Grief Through Indigenous Wisdom: A Case Study of Japanese Family Survivors of Suicide.” Oka illustrated his presentation with clips from Japanese films (thankfully with English subtitles) showing several Buddhist altars to departed relatives. The tradition of ancestor worship that has for generations been part of Japanese culture, Oka maintains, was helpful both in confronting death and in dealing with grief. As the country has become increasingly secular, though, the business of helping survivors through the grieving process has been turned over to nonprofits that are largely funded by the government – and Oka is dismissive of their usefulness. “You join a group of other survivors, talk about your loved ones for a while until you are ‘graduated’ into another course in which you’re supposed to get on with your life,” he told me. “The nonprofits don’t know what they’re doing, and the system just doesn’t work.” Japanese Buddhists seem to have it better.

One of the most moving presentations was titled “The Materialisation of Loss in Cloth,” given by Beverly Ayling-Smith. An award-winning textile artist and researcher, Ayling-Smith illustrated her presentation with images of burial cloths and related textiles, including some elegantly ethereal images of shrouds. “Cloth has its own language as curator Julia Curtis has written,” she comments, “‘. . . fold, drape, stretch, stain and tear – it signifies an emotional range from intimacy, comfort and protection, to more disquieting states of restriction fragility, loss and impermanence.’ It is this range that allows cloth to be used as a holder of memories of events, experiences and people.”

This storyteller bonded early in the conference with Celtic Storyteller Mary Gavan, whose mastery of the oral form is both challenge and inspiration to a practitioner of the written form. Gavan grew up “as a Celtic storyteller tramp,” delighting in the ancient tradition as she heard it from grandparents and friends across Scotland and Ireland. Her presentation was told as story from her two personal perspectives: community palliative care nurse and Celtic Storyteller. It served as a vivid demonstration of how effective the well-told story can be in communicating and understanding the complex emotions brought to bear at the end of life.

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There were many more: perspectives on loss and grief offered by participants from Turkey, Spain, Norway, Slovakia and elsewhere, and one mesmerizing – if not for the squeamish – illustrated discussion of an anonymous 15th century Middle English debate, “A Disputation Between the Body and the Worms.” On that latter, presenter Martin Blum of the University of British Columbia Okanagan read the ancient text “not only as a contemplation of the transitory nature of life, but also as an affirmation of life.”

Which was, in effect, what this conference managed to achieve: pulling together diverse global perspectives on death to create a giant affirmation of life.

 

 

 

Dying On Your Own Terms

Mileva Lewis with the author

Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

Jury Duty: the Good Citizen job

Jury summons

The dreaded envelope arrived. Superior Court of California, County of San Francisco:

You are summoned for JURY SERVICE (capitalization theirs) during the week, and at the place indicated below. Please read the entire summons entirely…

Who has not received – usually with a little dread – that windowed envelope? Because it means a day, or a week, or a month or more of your life has just been appropriated for Citizenship Duty. That is, after all, what Jury Duty is all about: being the Good Citizen. Doing what you can for the greater good of your fellow citizens.

Actually, I have always loved jury duty. Over the years, my jury duty experiences have ranged from the sublime to the ridiculous.

There was the sweet young thing who scammed a few dozen friends and relations out of a few thousand dollars each, and wanted us to believe she really meant just to make everyone rich and didn’t understand why anybody was mad at her. The unanimous vote to convict came by about the time we got seated and organized.

There were times we deliberated to the point of exhaustion, and times I wondered if a better lawyer would have had us voting differently. There were plenty of times I spent a day or two and wasn’t chosen for duty; usually with a great sense of relief.

There was the time, in a jury pool for a domestic violence case, when the defense attorney introduced his spiffed-up client, and addressed the pool: “There could be implications about Mr. Smith… that he had a few glasses of wine…” The attorney smiled knowingly at us, wanting to be sure we’re all grown-ups and what’s a few glasses of wine after all? I was tempted to say, “Man, don’t give me that bull. You don’t want me on this jury, I will so fry your client.” But I asked to be excused, saying I felt personal bias would make it difficult for me to remain open-minded.

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The only other time I asked to be excused was when the case involved two corporate entities and some sort of asbestos issue. The judge told us at the beginning that it could run six months. Six months? A couple of corporations wanted 12 citizens (plus alternates) to give up six months of their lives to settle something they should lock their lawyers into a small room to work out? I was beyond irate. The judge invited anyone who felt jury service would be a hardship to come to an adjacent room; virtually the entire pool rose. Uncertain what exactly I would say I began, “My brother-in-law is a chest physician…” and that was as far as I got. “Excused,” said the judge, without looking up. I wasn’t actually very sure where I was going with that explanation, but apparently the judge just wanted to get it over with. I felt sorry for him.

But that’s the way the system works. Good people go to law school, get to be judges and have to sit through all this. More good people give up their time to try to find justice for other good people and perhaps a little justice for the bad guys while they’re at it.

For now, though, I’m opting out. This presents a problem, since apparently you never age out of jury duty and there is no excuse box for Overwhelmed.

One can opt out if under 18, not a citizen, or if one has been convicted of a felony or malfeasance in office. Or if one has a physical or mental disability. None of the above quite worked for me.

At the bottom of the opting-out section, though, I discovered one can be excused if one has a full-time, non-professional obligation to provide care for a related disabled person and alternative arrangements are not possible during court hours. (California Rules of Court, rule 2.1008.)

At last. A reward for the caregiving business. Does caregiving equate to good citizenship? One hopes.