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.

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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.

Loss, Love and Loyalty

broken-heart

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.

Buda-conf.3

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.

Holding Silvan: A tale of loss and love

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

 Monica Wesolowska
Monica Wesolowska

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

Holding Silvan coverThere were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.