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.

 

Dust to Dust — to save the planet

Tree

Why is this not a good idea? Wherever you stand on the “ashes to ashes, dust to dust” business, doesn’t it make sense to quit burying tons of toxic materials in the ground along with our dust and ashes?

Recently an idea for better handling of our dust evolved into the Urban Death Project, a nonprofit that caught this writer’s eye with a Kickstarter campaign some months ago. The campaign having surpassed its designated goal, my “Future Tree” tee shirt is now on its way; and the good idea seems worth sharing.

Urban Death Project founder Katrina Spade is not the first to come up with an alternative to the seriously harmful burial practices of recent centuries – practices that dump unimaginable amounts of contaminating formaldehyde, non-biodegradable metal and concrete into the ground, as if the planet had limitless ground to contaminate.

Natural burial, or “green burial” has been around for at least as long as civilization. The writers of Genesis saw fit to include that “unto dust you shall return” line, and most people found ways to make that happen fairly effectively, with exceptions made for the pharaohs. But somehow, embalming and vaults and caskets crept in, and staving off decay became both profitable and popular. Jessica Mitford’s 1963 The American Way of Death exposed abuses of the funeral home industry – Mitford herself had an inexpensive but memorable ceremony in San Francisco this writer recalls with fondness, and her ashes were scattered at sea. Her wildly popular book, though targeting funeral homes, may also have helped kickstart the search for better alternatives to what had become traditional burial practices in the U.S.

CemeteryJerrigrace Lyons was among the natural burial movement’s pioneers, with the founding of Final Passages in 1995. Lyons sought to “reawaken a choice that our ancestors once held sacred.” Final Passages is “dedicated to the reclaiming of traditional funeral and burial practices,” including green burial. One 65-year-old whose will specifies a green burial puts the issue in plainer terms, declaring he wants “to be part of a tree, part of a flower, go back to being part of the earth.”

Urban Death Project takes green burial to a new level. A three-story cone will form the space into which bodies are gently laid to rest, following a cycles-of-nature ceremony for loved ones. Also within the cone are high-carbon materials which – with the help of “aerobic decomposition and microbial activity” – decompose everything fully into a rich compost

All of which makes perfectly good sense.

It is not easy, however, to give up long-held ideas about dealing with one’s remains after one has presumably gone on to a better place. Family burial plots, oak-shaded cemeteries, columbaria and the scattering of ashes in special places all have great attraction. This writer has long cherished the notion of her children and grandchildren having a couple of lovely parties while they toss her ashes into the Chesapeake and San Francisco bays. This despite knowing that cremation takes high amounts of energy and sends carbon dioxide, mercury vapors and other pollutants into the atmosphere.

EarthBut here is the irrefutable bottom line: the total land surface area of planet earth is 57,308,738 square miles, including 33% desert and 24% mountains to divvy up among more than 7 billion people – all of whom will eventually die.

Turning us into trees to shade the next 7 billion? The Urban Death Project could be onto something.

Fighting off dementia

DementiaAlzheimer’s – already afflicting well over 5 million Americans – is expected to claim more than 16 million of us by 2050 if a cure isn’t found. Today it is at the top of the Bad News list of potential diagnoses for almost anyone over 50. Justifiably so, since the Centers for Disease Control and Prevention reports than one in three seniors now die with Alzheimer’s or other dementia.

That’s the bad news.

The good news, explained recently by Patricia Spilman, M.S. at a sold-out Commonwealth Club event in San Francisco, is that there are things one can to do lower the risk, and perhaps slow the progress of the disease. Spilman, who is Staff Scientist at the Buck Institute’s Bredesen Lab, should know. She has spent more than two decades researching neurodegenerative disease, and has written and spoken extensively on Alzheimer’s and related diseases.

“Forgetting,” Spilman says, by way of reassurance, “is normal. You don’t need to remember where you put the car keys last week, or a doctor’s appointment last month.” And studies – including one by Buck Institute founding President and CEO Dale Bredesen M.D. that is fascinating even for a lay reader – suggest that cognitive decline can be slowed, or in some cases reversed.

Spilman’s prepared remarks consisted largely of useful, realistic advice about how to delay the cognitive decline most of us will experience at some point. The audience, ranging from 20-somethings to more than a few senior citizens, was furiously note-taking throughout (or furiously jotting down questions for the Q&A session to follow.)

Exercise – particularly activities that combine movement and navigation such as tennis or golf – is at the top of the list. “It’s easier if you have a partner,” Spilman suggests, “because this adds the important element of socialization. Walking, plus climbing, is particularly good if you try new routes.” More than a few audience members nodded knowingly when Spilman noted the increasing, widespread dependence on mindless GPS. “Take the opportunity to look at a map,” she said.

Cognitive decline can also be offset by paying attention to the critical need for plenty of sleep. To help with a good night’s sleep, Spilman advises allowing at least several hours between eating and going to bed, and having a dark room. Chronic stress is relieved by a combination of exercise and sleep, along with those other preservatives of gray matter, yoga and mindfulness meditation.

Also good for the brain: almost any sensory stimulation. Music, smells, touch. Spilman cites Oliver Sacks’ Musicophilia: Tales of Music and the Brain, and Norman Cousins’ Anatomy of an Illness, in which Cousins treated himself with comedy as useful reading.

“Do something new every week,” Spilman suggests; “every day. Have goals in later life. Take classes, volunteer, build intergenerational relationships, pursue spirituality, encourage others to change and to grow.”

Computer games can improve cognition also. Spilman did not mention any specific sites, but this writer has enjoyed BrainHQ, and other brainy items from Posit Science’s Karen Merzenich, as well as introductory games on the Lumosity site. Most fascinating of all is the University of California San Francisco (UCSF)’s Brain Health Registry, in which anyone can participate; it’s free, and your brain might wind up helping someone else’s brain one day.

The Q&A segment following Spilman’s talk was fast and full of both personal stories and pertinent questions: “What’s normal decline?” (The difference between not remembering the movie star’s name and not being able to do a job well. You might keep a diary of cognitive function.) “What about genetics – the father-daughter-son factors?” (Yet unproven.) “How about overexposure to electromagnetic fields? (Don’t have unnecessary radiation.) And enough other issues raised for two or three more hours.

No one’s brain, in any event, was idle. Which indicates that everyone in Spilman’s audience was lowering his or her risk of Alzheimer’s.

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.

 

Choosing a better death

Could dying be better?

By now most people acknowledge that there are “good” deaths: peaceful, with minimal pain, at home surrounded by loved ones – and “bad”: pain-filled and prolonged, often for months or years and more often than not in a hospital or other institutional setting. The movement toward “good” death – legalized medical aid in dying – has been growing for decades in the U.S., but has been gaining momentum and attention in recent months.

Liner.2Robert Liner MD, a retired obstetrician/gynecologist, gave an informative update on the movement at a recent University of California San Francisco grand rounds. Liner is one of four patient plaintiffs in a California lawsuit which would make that state the sixth to legalize physician aid in dying, and a longtime supporter of leading end-of-life organization Compassion & Choices. The suit is also joined by three physician plaintiffs.

Liner, whose cancer is in remission, said he would personally prefer to avoid death altogether. “But along with birth, dying is a universal experience. It’s what we all do.” And equally universal, he noted, is the wish to make that experience a little more compassionate, a little closer to what most of us would choose.

Liner outlined the current status of California SB-128, the End of Life Options Act, now working its way through the senate. While granting terminally ill, mentally competent adults the right to ask their physicians for life-ending medication, the bill would also establish safeguards such as requiring assessments by multiple physicians and repeat requests for the medication made at least 15 days apart. A similar law in Oregon has proven valuable in many aspects over the 18 years in which it has now been in place, Liner said. Death W Dignity newspaper

He cited a study published in the New England Journal of Medicine at the end of the Oregon law’s first decade which found that since passage of the law Oregon has seen improved training for physicians in end-of-life care, an increase in individuals’ completing advance directives, improved pain management and rates of referral to hospice and an increase in number of people dying at home.

Putting the better-death movement in historical context, Liner referenced a significant case several decades ago that sometimes goes unnoticed. In 1991, he explained, New York physician Timothy Quill published an article in the New England Journal of Medicine describing how he had prescribed barbiturates to a dying patient when her leukemia reached a point at which she no longer wanted to live. A grand jury subsequently declined to prosecute. Quill later became one of the plaintiffs in a case that wound up reaching the U.S. Supreme Court. And in 1997 the Court let stand a New York law prohibiting what was then called physician-assisted suicide, ruling that there is no federal constitutional right to die – effectively turning the issue back to the states.

Five states – Oregon, Washington, Vermont, Montana and New Mexico now allow physician aid in dying, Liner explained. California’s efforts to become the sixth include a campaign launched last year by Compassion & Choices and the lawsuit filed early this year.

Scales of justiceLiner distributed copies of the April edition of San Francisco Medicine, the journal of the San Francisco Medical Society, in which he and two of the other physicians involved in the lawsuit explain their support for legalized aid in dying. “Collectively, we represent almost a century of medical practice, teaching and research…(and) probably most relevant is our extensive experience caring for dying patients,” write lawsuit plaintiffs Liner, Donald Abrams, MD and Marcus Conant, MD in San Francisco Medicine.

The lawsuit is backed by national disability rights advocacy group Disability Rights Legal Center, Liner explained, and cites a number of reasons why aid in dying should now be legalized. While some arguments – such as privacy and liberty interests – are complex, one seems fairly straightforward: California penal code section #401, which makes it a crime to aid or encourage someone to commit suicide (a very different situation from a dying person’s wish to shorten his suffering), was written more than a century ago. Before dying shifted from being commonly a home event overseen by the familiar family physician to hospitals or other institutions where the large majority of Americans now spend their final days and weeks. Before medical technology made it possible to prolong life, often far past any “life” many would choose.

Liner, and millions of other Americans, believe choice in dying should rest with those who are dying themselves.

 

 

Life: a sexually transmitted, fatal condition

sunset

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande
Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

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.

A new fight for good death

Kathryn Tucker
Kathryn Tucker

Christie White and Dan Swangard are fighting to live – and also fighting for their right to die: peacefully, at home, surrounded by those they love.

Kathryn Tucker and Nico van Aelstyn are now taking that fight to the Superior Court of the State of California; and it will be a fight worth watching.

Tucker, a distinguished attorney now serving as the executive director of the Disability Rights Legal Center, has already led a number of such battles for peace at life’s end, including defense of the Oregon Death With Dignity Act several times in the early years of that now 18-year-long success story. van Aelstyn has a similarly notable record and an award-winning history of pro bono work on end-of-life issues. Many supporters of end-of-life choice, including this writer, are optimistic about the potential outcome.

But court battles aren’t settled overnight, and White and Swangard know they may not have a lot of time left.

Christie White
Christie White

“My mother will tell you,” White remarked during the press conference announcing the lawsuit, “that from the time I took my first steps I wanted to be in control. I want to be in control. I am adamant about not wanting to die in a hospital, but at home, surrounded by my family. I want to be able to gather my loved ones and meet my death with some dignity and peace of mind.”

Since first diagnosed with non-Hodgkin’s lymphoma and then acute myeloid leukemia or AML Leukemia more than five years ago, White has undergone chemotherapies, radiation therapy and a bone marrow transplant. Because of those prior interventions, her medical options would be severely limited should her leukemia recur.

Dan Swangard, MD was diagnosed with tumor of the pancreas, with metastatic disease to the liver, and had major surgery in 2013. “Not to state the obvious,” he told the press, “but dying is something we all do. It can be loud, quiet, filled with anxiety, pain and suffering, at home or on the road. It can also be peaceful, filled with connections to people we love the most – if planned.”

Swangard has practiced medicine for 22 years. He has also served as a volunteer with Zen Hospice and at Laguna Honda Hospital in San Francisco, experiences that add to his own understanding of what a good death can be.

This lawsuit is about the possibility of a good death for everyone in California. Christie White and Dan Swangard are two good Californians who deserve such an option.

 

1 3 4 5 6 7