At the End of Life, a Way to Go Gentle

By

[W]hile confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!

Death and the Irish: A miscellany

 Do we ‘do’ death best?

Collection features 75 perspectives on death in Ireland and whets appetite for further study

“The Humours of an Irish Wake as celebrated at St Giles London.” Original artwork: engraving by Thornton, published by Johnson c 1750.

By Bridget English

[T]he Irish wake is nearly as celebrated and stereotypical an Irish export as Guinness, leprechauns or shamrock. Its reputation as a raucous, drunken party that celebrates the life of the deceased is now regarded internationally as a desirable way to mark the end of one’s life, even for those who claim little or no Irish heritage.

It is conceivable, then, given the famous link between Ireland and death, that the Irish “do death well”. Where does this association come from? Do the Irish really “do” death better than anyone else? These are some of the questions behind a new collection of essays, Death and the Irish: A miscellany, edited by Salvador Ryan, a professor of ecclesiastical history at St Patrick’s College Maynooth.

The collection is part of a recent surge of academic interest in death and dying, as is evidenced by the publication of edited collections such as Grave Matters, Death and Dying in Dublin, 1500 to the Present (2016), edited by Lisa Marie Griffith and Ciarán Wallace, and Death and Dying in Ireland, Britain and Europe: Historical Perspectives (2013), edited by James Kelly and Mary Ann Lyons, both of which explore these themes from a historical perspective.

>Subtitled “a miscellany”, Death and the Irish is different from these publications because it features a medley of 75 perspectives on death and the Irish from historians, hospice workers, geographers, sociologists, anthropologists, theologians, priests, librarians, musicologists, and funeral directors, to name a few. It also covers a vast time span, taking readers from the fifth century to the present day.

Entertainment

The brevity of the essays (around three to four pages, including footnotes) and their pithiness, though a departure from the extended discussions commonly found in academic anthologies, is true to the form of the miscellany, which was originally intended for the entertainment of contemporary audiences.

Death and the Irish will interest readers looking for interesting tidbits of information on death and provides ample fuel for those searching for inspiration for further research.

Some tantalising morsels from the miscellany include: the tale of a young woman buried with her horse sometime between 381 and 536 AD; the variety of terms for death in the Irish language; social media’s role in keeping memories of the dead alive; an analysis of Stuart-era funerary monuments and what they reveal about women’s role in society; the 18th-century Dublin practice of laying executed corpses at the prosecutor’s door; a quirky account of the discovery of James McNally’s death by elephant in Glasnevin cemetery’s burial registers; and the story of a young cabin boy’s death by cannibalism.

Given the number of entries included in the volume, it is not possible to provide a detailed account of each, but a few entries are worth mentioning. Clodagh Tait’s Graveyard folklore and Jenny Butler’s The ritual and social use of tobacco in the context of the wake are particularly thought-provoking accounts of folk practices and the material cultures surrounding death. Tait’s gruesome description of the pieces of human remains that were collected for charms and the dead man’s hand that “could be used to make churning butter less onerous” provides readers with images that they are unlikely to soon forget.

One downside of Death and the Irish is that the experience of reading such short essays can be frustrating for anyone (particularly students) coming to the collection looking for an extended discussion of death practices in a particular era. Organising the entries by time period or by theme (burial, folklore, historical figures or events, etc) might make for more streamlined reading, but to do so would also destroy one of the collection’s main strengths, which is to bring disparate approaches together, taking interdisciplinarity to an extreme, provoking new ideas through a multilayered view of death in Ireland.

Under-represented

Despite the inclusiveness of Ryan’s miscellany, certain disciplines, such as history and theology, seem to dominate, while others are absent or under-represented. Philosophers have certainly shaped the ways that modern secular society conceives of death, yet there are no entries on the relationship between Ireland and philosophy.

Irish film, literature and drama feature some of the most insightful and humorous portrayals of death and dying in western culture, yet there are only three entries on literature, and these are limited to poetry (Irish language poetry, bardic poetry and 18th-century elegies).

These are minor criticisms and on the whole, Death and the Irish: A miscellany is commendable for its inclusion of marginalised groups such as Travellers, and for the links made between Irish practices and Jewish and Muslim beliefs. The Irish may not necessarily “do” death better than anyone else, but as this volume makes clear, the history and rituals surrounding death offer a rich and complex area of study, one that has much to tell us about Irish attitudes towards mortality and treatment of the dead.

Complete Article HERE!

Longfellow And The Deep Hidden Woods Review

To celebrate the 2nd anniversary of the publication of Longfellow And The Deep Hidden Woods I thought I’d share with you a touching review just published on Amazon.

 
 

myste lynMyste Lyn from Bittersweet Blessing shares her thoughts after reading the Longfellow book

bittersweetblessing

 

5.0 out of 5 stars  Much more than a book on loss…

 

A sweet, simple and soft book… more than a book on loss, it’s a book that reminds us of what is important in life.

I was surprised by the quiet beauty that gently touched my heartstrings singing songs reminiscent of old times on my grampa’s farm…

The illustrations are equally touching and I’ve included a screenshot of one of my favorites.This one’s a keeper.

 

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Thank you, Myste!

For those of you unfamiliar with Longfellow, allow me to introduce you.

Longfellow, the bravest and noblest weiner dog in the world… As our story begins, Longfellow is a puppy learning how to be a good friend to his human companions, Old Henry and Henry’s nurse Miss O’weeza Tuffy. By the end, he has grown old himself, but is still ready for one final adventure. What happens in between is an unforgettable and heartwarming tale that throws a tender light on the difficult truths of loss and longing as well as on our greatest hopes.

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Book Review — The Amateur’s Guide to Death and Dying: Enhancing the End of Life

I am delighted to share with you a very thoughtful and reflective review of my book. This review appears in The Natural Transitions Magazine, which is available in both hard copy and E-version. To get your copy visit HERE!

 

 

By Lee Webster

What does it mean to die a good death? Sure, we all have a fair idea of the self-explanatory concept, but have we really thought out the nuts and bolts of it? Have we taken the time or made the effort in a clear, compassionate, and all-encompassing way to envision our own end or the end of a loved one?

The Amateur’s Guide to Death and Dying: Enhancing the End of Life is not a book for a good night’s read, cozying up to the fire. In fact, it’s not exactly a book at all in the conventional sense. Wagner begins by introducing the reader to ten characters who make up an imaginary death and dying support group. Each has his or her own baggage, concerns, fears, and life experiences.AGDD_front cover

In ten weeks—ten chapters—each expresses valuable and, at times, uncomfortable thoughts and feelings to the group, while exploring the issues of death and dying. Wagner then invites the reader to participate in the virtual group, to write in an included workbook, and do check-ins, exercises, and homework that have been designed to stimulate the reader’s personal thoughts and observations while sharing in the struggles and epiphanies expressed by characters in the book.

For many of us, the prospect of facing our own mortality and that of those we love within a real group setting would be excruciating. The Amateur’s Guide makes a fictitious group event into a supported solitary pursuit, allowing the reader to wade through difficult emotional waters at his or her own pace, and to linger with thoughts and insights while simultaneously “observing” the reactions of other participants in the group—all on paper. It’s a unique approach to self-exploration within community.

“All of this,” Wagner writes, “is designed to help make the end of life less of an intimidating process and more of a rich, poignant transition.”

Written in an engaging, deeply human style, the characters come to life through both burdens and revelations. They remind us of the vastly different roles our families play in forming our outlook and capacity for internalizing and coping with our own deaths. They remind us that our historical and cultural context has formed our attitudes towards death and that a renegotiation is required if we are not comfortable with the prevailing messages.

They remind us that as much as we say we live in a death-defying culture, we spend an awful lot of time flirting with death. And that love becomes the intrinsic focus of the death experience—whether love is or was present becomes paramount in defining our relationship to death, both personally and universally.

There is no limit to the reminders provided in this book that will potentially bring readers into sharper consciousness regarding mortality and, more importantly, help integrate a deeper understanding of death into our waking lives through faithful participation in this valuable process.

The many practical (telling someone where to find the keys) and spiritual (are you in a right relationship with yourself, friends, family, God?) topics are presented to help center the reader on what is important in the moment to mindfully prepare for death. The exercises Wagner offers are worth the time and effort. After all, what other resource is likely to provide an opportunity to write your own obituary?

 

Lee Webster writes from her home in the White Mountains of New Hampshire. She is a frequent public speaker on the benefits of home funerals and green burial, a freelance writer, conservationist, gardener, quilt maker, and hospice volunteer.

Contact Lee at
turningleafhomefunerals@gmail.com

Be sure to visit our colleagues at Natural Transitions and support their work.

Live As If You Are Dying

I’m delighted to share with you a new review of The Amateur’s Guide To Death And Dying. It appears on the blog of Licensed Mental Health Counselor, Mandy Traut.

Mandy Traut

Just like the famous Tim McGraw song, I good friend of mine recently reminded me to “live like I was dying.” Many of you know that I was a recent guest on Dr. Dick’s Sex Advice: Sex Advice with an Edge (Sex Wisdom Show). Well, my association with “Dr. Dick” (AKA Dr. Richard Wagner) developed into a good friendship. I see him as a role model and mentor. So, I was quite privileged when he asked me to review his new book, “The Amateur’s Guide to Death & Dying: Enhancing the End of Life.”

Richard is, not only a renowned sexologist – Board Certified by the American College of Sexologists, The American Board of Sexology, and The American Association of Sex Educators, Counselors and Therapists, he is the founder and former Executive Director of the nonprofit organization, PARADIGM; “Enhancing Life Near Death — an outreach and resource for terminally ill, chronically ill, elder and dying people.”AGDD_front cover

His book, “The Amateur’s Guide to Death & Dying: Enhancing the End of Life,” is developed to be a workbook for terminally ill patients going through the process of dying. But, the reader realizes early on that one need not be terminally ill to follow the exercises. As Richard reminds us, we all die at some point. Richard introduces the concept of “proactive dying,” referring to an attitude whereby one addresses one’s mortality head-on. Richard illustrates how honest discussions, education and preparation, and support from family and friends, can really benefit all of us. Rather than present a typical workbook with a sequence of exercises, Richard has adapted his own workshop, associated with PARADIGM INC, into written form! You, the reader, become a participant in his workshop as you explore questions of mortality, loss, sickness, and isolation. Eventually, you and your fellow participants come to see death as a part of life.

Whether going through the group process of exploring various issues, listening to presentations on preparing Estates and Advanced Directives, or discussing the stigma of talking about death and dying in the first place, the reader gets to reflect on his/her own thoughts and feelings about death and learns how to be prepared for end-of-life concerns. Richard normalizes death in the most compassionate, authentic, and empathic way. I appreciated that he, as a facilitator, found a balance between professionalism and disclosing his own personal stories, fears, hopes, and dreams to the group. Additionally, reading his book, I, not only reflected on my own fears related to death, but I strangely began to relate and befriend the other participants in the group. I felt as if I were walking the journey with them. It was humbling and moving, as well as educational and informative.

As the group workshop was coming to an end one of the participants read a poem with the theme of “live as if you are dying.” As I read (imagining myself in the room with everyone else), tears welled up in my eyes. By now, I knew the group members pretty well. I empathized with their fears, their anger, and their sense of loss. Then, I thought of my own life and relationships. Inwardly, I thought, “How often do we go through life on automatic?” It is true: Like sleep-walkers, we miss the little moments that make life precious. It takes a terminal illness or a traumatic event to wake most of us up!

In the end, I completed “The Amateur’s Guide to Dying” with several take-aways: To my readers and clients alike, I hope that you can ponder these ideas and see how they fit in your own lives.

1) It is smart to explore your end-of-life wishes while you are healthy and can make these important decisions.

2) Live as if you are dying – do not take one breath – one hug – one smile – for granted. After all, sometimes death comes when we least expect it.

3) Honor and cultivate your relationships – our relationships are at the core of a meaningful, worthwhile life.

One last word: Thank you, Richard for sharing such a fresh, revolutionary perspective with the rest of us. This is not an easy subject for most of us to swallow.

Complete Article HERE!

Mitch Carmody’s Review

I’m honored to share with you a remarkable new review of my book by an equally remarkable man, Mitch Carmody, CGSP. He is the author of Letters to My Son, turning loss to legacy.

The Amateur’s Guide to Death and Dying: Enhancing the End of Life
By Richard Wagner, Ph.D., ACS

I found Dr. Wagner’s book to be an incredible expose’ on the processes and mythologies of death and dying in a modern world. It was wonderful, refreshing, educational and enlightening, as well as entertaining.AGDD_front cover

The colorful cast of round table characters that he created from a compilation of real life people is quite remarkable; by the end of the book I had my favorite personas that I could not wait to hear from. The book engages you right from the get go and maintains that momentum throughout its pages. It made me laugh, it made me cry; it validated and put into simple words so may ideologies that I subscribe to in processes grief and facing one owns mortality.

This book is perfect for those individuals that may not like to attend or who are unable to attend a support group. For people faced with their own impeding death, this book is a brilliant concept. It allows for group interaction without actually being present.

This book is not only great for the dying and terminally ill but for caregiver, family and clergy who serve their needs. I highly endorse it and would recommend it to anyone seeking theological enlightenment. We are all amateurs when it comes to death and dying, for ourselves or those whom we love. Reading this book gives one encouragement to step outside the box of accepted social mores about death and dying and I believe can truly enhance the end of life for those faced with their own death. A great read for anyone; not one of us will escape from the eventual reality of our own death or those whom we love. This book can prepare us.

Mitch Carmody, CGSP
Author of Letters to My Son, turning loss to legacy
Creator of Proactive Grieving ©
www.heartlightstudios.com
www.proactivegrieving.org

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