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.

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.

jury-selection-1

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.

When Cure Is Not An Option

“Has anybody asked the patient?”

Jessica Nutik Zitter raised her hand to pose that question some years ago, at a “Morbidity and Mortality” conference wherein a room full of physicians were discussing treatment options for a dying patient. The doctors continued to talk about surgery A or drastic measure B. Zitter raised her hand again to say, “Has anybody asked the patient?”

Zitter is now a highly regarded critical care/palliative care physician who speaks and writes often on end-of-life issues. A solitary voice at that “M&M” conference, today she is one of the leading voices for medical care that asks the patient first. It is the care most of us would choose.

Zitter spoke recently at San Francisco’s Commonwealth Club, an event titled “Avoiding the End-of-Life Medical Conveyor Belt.” Her horror stories explain the conveyor belt metaphor, and confirm the immensity of the end-of-life care problem facing us all. The problem is not just with our cultural inclination to ignore death altogether, as has often been written about in this space, or with physicians’ inclination to continue treatment as if death were not an option. It’s both.

Fran & Jessica Zitter 6.9.15
Jessica Nutik Zitter with Fran Johns

Jessica Nutik Zitter’s stories (a book is forthcoming from Penguin Random House) starkly highlight the death-is-not-an-option attitude unfortunately still common in the medical profession – and the pain and anguish endured by patients who wind up on the conveyor belt as a result.

People will often say, “Take a chance! Maybe God will work a miracle…” Zitter comments, but “the odds are high for (that person’s) being committed to a great deal of suffering and a grisly death.”

Thus the conveyor belt: a patient who is dying and could use a little peace instead winds up undergoing a cruel series of events – resuscitations that mean broken ribs, restored breathing that means a tube thrust down the throat, futile interventions that add to – and prolong – pain and suffering.

Zitter tells of a patient who was essentially “a body,” shrunken and yellowed, being given emergency resuscitation that one nurse likened to torture; and of a man repeatedly taken from the nursing home to the ICU, because he had hand-written a note saying he wanted his life prolonged ‘at all costs.’ “We don’t give people graphic visuals of what those costs may be,” she says.

Asked why doctors don’t practice patient-centered care, Zitter cites two factors – in addition to the imbedded tradition of always providing treatment, and more treatment. One is the need for physicians to get paid for time spent on end-of-life discussion, something that seems perfectly rational but tends to get shouted down in the politicized healthcare arena. The second is equally simple: “If you don’t offer care, someone else will.”medical symbol

Asked by an audience member about what constitutes good care when cure is not an option, Zitter recommended that decision making in such cases should be made early on. “The possibility to cure gets me up in the morning,” she said, “but helping a dying person achieve a good death is equally satisfying.” While advance directives are useful, she points out, they are not enough. It’s important to talk extensively with friends and loved ones, and to create documents with the help of legal and/or healthcare professionals if possible. (A growing number of individuals and organizations are offering such services.) “But decisions have to start with the patient,” Zitter says. “The patient saying ‘do this’ or ‘don’t do that.'”

Otherwise, it’s onto the conveyor belt.

 

Dying in the Fix-It Society

Buddhist teacher/lecturer Frank Ostaseski spoke recently to the Bay Area Network of End-of-Life Care on the subject of compassion – something Ostaseski preaches, teaches and practices himself. Co-founder, in 1987, of the Zen Hospice Project, the first Buddhist hospice in the U.S., Ostaseski currently heads the Metta Institute, created to provide education and training on spirituality in dying.Buddha

Buddhism, Ostaseski said, holds that life is supported by two wings, compassion and wisdom, and neither is at its best without the other. His audience, made up of physicians, hospice workers and others involved with end-of-life care, was in interested agreement with the renowned speaker as he expanded on the theme. But this writer, also in agreement, found one side remark particularly pertinent to today’s end-of-life issues.

Ostaseski spoke of a severe heart attack he suffered not long ago, and of the wisdom gained from that experience. It was insight on critical illness “from the other side of the sheets.” During his hospitalization most visitors, even longtime friends with credentials in compassion, said the wrong things. “They were always saying, ‘It’ll be better tomorrow, Frank,’ when I wanted to talk about what was going on that very moment.” Additionally, Ostaseski found that nurses and doctors “interacted with monitors far more than with the patient.” What could well have been an end-of-life situation was, in short, lacking in compassion and wisdom both.

“Hospitals are fix-it places,” Ostaseski remarked.

We may have gotten fixated on being a fix-it society. Whatever the problem, a chemical or technological answer, in the fix-it society, is instantly sought. We fix brain injuries, once-fatal diseases, missing limbs, and more. But can we let someone who is terminally ill quietly die? Seldom. More often than not we keep trying to fix her with extended interventions, futile and expensive treatments or hospital stays that make dying a horror.

Ostaseski and others are working hard to help people find meaning in their final days, focusing on palliative care. Some, including this writer, are working hard to make medical aid in dying a legal option available across the U.S. ALL of us want a peaceful and compassionate death.

The_flame_of_wisdom
The flame of wisdom

 

The personal bottom line, yours and mine, is this: eventually we die. If the focus can be shifted away from constantly trying to extend our days, we can fix the final days that lead, one way or another, to the mysterious, inevitable, unpredictable, un-fixable but quite natural end. All it takes is a little compassion, and a lot of wisdom.

Thanks, Brittany

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Brittany Maynard, 1984-2014

No one was surprised by the news of Brittany Maynard’s death on November 1, as she had planned. The news arrived in my Inbox late Sunday night, November 2, in an email from Compassion & Choices, an organization I have supported — as a volunteer, Northern California board chair and in all other ways — for well over 15 years,

What Brittany did for Compassion & Choices, and for you and me, though, far exceeds what any one person might ordinarily have done. Hers was an extraordinary demonstration of how to live, and die.

More of how she lived will continue to be in the news. But it’s how she died, with generosity and grace, that is worth noticing right now. Just to touch on a few things:

Brittany, in making her own choice, showed us how to make our own choices. Demand the right to control your destiny, she was saying. Fight for legalized aid in dying. Complete your own advance directives and make sure EVERYONE in your family and circle of friends knows what your own wishes are. Death with dignity was Brittany’s choice, and she wanted it to be yours — if you choose.

“The freedom is in the choice,” Brittany said.  “If the option of Death With Dignity is unappealing to anyone for any reason, they can simply choose not to avail themselves of it.”

Brittany was irate over insinuations that she had been “manipulated” by anyone. She was a strong, educated, independent, intelligent woman who led a joy-filled life and confronted its abbreviated end with remarkable courage. The reality was simply that she took control of her own final months, weeks, days, by moving to Oregon where aid in dying is legal. The reality is that she wanted her life — and death — to have meaning for all of us. She hoped that by sharing her story all of us might benefit.

It’s about freedom. Brittany, thankfully, is now free of the terrible pain her illness was bringing, a pain that was certain only to increase. Her family will mourn for a long time, but they are free of the pain and anguish that comes from watching someone you love suffer.

You and I are free to choose. We can continue to let those who hold differing views deprive us of our right to control our final weeks and days. Or we can fight to legalize our right to choose a compassionate death. Eventually, that right will prevail.

Thanks, Brittany.