Death and the Meaning of Life

 

“Each day, we wake slightly altered, and the person we were yesterday is dead. So why, one could say, be afraid of death, when death comes all the time?”      ~  John Updike

“To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.”  ~ Sherwin Nuland

 

the meaning of deathAs I delve more and more into the medical and ethical issues of aging, I find repeated references to the tendency in modern society—and particularly America—to avoid the subject of death. I plan, over the next few months, to explore some of the social and cultural reasons for this pattern, but today’s blog is a personal muse on why death—the very fact of death—gives added and richer meaning to life and to the opportunities that await us.

Long-time readers of my blog (or readers of Sailing Down the Moonbeam) will know that a watershed event in my life occurred on a 35-foot sailboat in the middle of the Pacific Ocean. After a week of sunny days with calm seas and a cloudless sky, a companion sailboat, aptly named Pacific, missed the scheduled meet-up on ham radio. Initially, no one seemed worried, as the yacht’s absence was easily explained by battery troubles or a broken radio antenna, either of which might take a day to fix.  No one saw any reason to call for help.

I did not view their absence with such equanimity.  What if it wasn’t a mechanical problem? What if Pacific had collided with a whale or a submerged container that fallen off a freighter, and the crew was drifting in a lifeboat? We were well outside the shipping lanes.  The odds of finding a small lifeboat floating in an unknown direction from an unknown starting point were almost nil.

When Pacific did not reappear on the second day—and still no one suggested calling for help—panic struck. From the beginning of our sailing voyage, I assumed that if we had a major problem, someone would come to our rescue, much as I had always assumed that an ambulance would appear if I had an accident on a New York highway.  Suddenly, I came face to face with the imminence of death, with the very real possibility that my life could come to an abrupt end on sunny day in a calm sea.

The watershed moment did not occur that day. Rather it came several days later, when I realized that imminent death had always been a possibility—that my faith in the appearance of the ambulance on the highway was as illusory as my belief in help at sea.

Once I accepted that the fact that my being was out of my control, I wanted to use my time and energy for things that mattered to me … to seize every opportunity …. to make sure I used every moment of my existence as if it were my last.

I wish I could say that I have always been true to this philosophy. What I can say is that the awareness of the fragility of life has been a constant reminder that I should not fall prey to what society thinks is important.  Since every moment could be my last—I could die before I even finish this sentence—every new moment is a new opportunity to live my life better and more wisely.

This muse was prompted, in part, by my interest in the subject of aging and death.  It was also prompted by a recent philosophy class in which we studied the often-controversial German philosopher Martin Heidegger.  At the risk of oversimplification, Heidegger sees much of our everyday existence as “falling prey” to the social, religious and cultural mores imposed by those around us, as well as the generations that have lived before us. Even those who see themselves as rebels or revolutionaries or free-thinkers are doing little more than re-arranging the ideas and concepts handed out by others.

For Heidegger, the only escape from this “inauthentic” existence is death … not the actual death that terminates human life, but the possibility of imminent death. For Heidegger, the ever-present possibility that this moment will be my last also offers a perpetually renewing opportunity to live in a way that is meaningful to me.

Does the possibility of death add meaning—and opportunity—to your life?

A Nurse’s Reflection on End-of-Life Care

 

Much of my blog this year will be devoted to health care and aging … an increasingly hot topic as the baby boomers age.  I hope to offer some provocative perspectives that will help readers thread their way through the complications of aging parents and/or their own inexorable march toward death. As is my wont, I will pose many questions and offer few answers.

Today’s blog, by Kathleen Pooler, looks at end-of-life care from the perspective of a nurse practitioner dealing with her own health issues as well as those of her patients.  

 

 

end-of-life careEnd-of-Life care “refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.”

We’re all going to die. Doesn’t it make sense to come to terms with our inevitable death, to prepare ourselves and our loved ones so that our lives can be fully lived until we die?

As a nurse, I have been present to dying patients of all ages and their families. As a family member, I have grieved at the bedside of loved ones. As a cancer patient, I have faced my own mortality and been fortunate enough to get a reprieve from end-of-life issues, at least for the time being.

How can we best prepare for death and ensure that end-of-life care is delivered in a compassionate way that incorporates the wishes of the dying person?

I will explore these issues from a nursing perspective.

Look How Far We’ve Come…

I remember feeling overwhelmed as a new graduate nurse in 1967 working in an Intensive Care Unit. Patients clung to life as monitoring devices signaled minute changes and ventilators and IVs provided life-saving oxygen and medications. The dings, pings, swishing sounds and constant alarms of all this technology seemed to interfere with the notion of delivering compassionate, patient-centered nursing care. It took a conscious effort to remain focused on the fact that underneath all those buzzing machines and multiple wires was a wife, mother, sister, brother; a human being with fears and dreams. I felt as if I had to fight my way through the maze of technology to “see” my patient.

I still feel that way. Technological advances, both in access to care and in the type of care available, enable people to live well into their 90s and even 100s. These advances have created steadily rising expectations among both health care professionals and patients that a wide range of ailments can and should be cured. With so many options for treatment, health care providers are faced with increasing challenges to deliver the best quality of care while considering the patient’s unique circumstances and personal wishes.

I am not talking so much about a patient with a good chance for survival and a will to fight for life. Rather, I am talking about a person who, because of age or circumstance, does not have a reasonable chance to return to an acceptable level of functioning.

For example, as a nurse practitioner in a family practice, I recently saw a mammogram report for an 84 year-old patient whose late-stage Alzheimer’s had left her incoherent and unable to function. The report showed a suspicious lesion and recommended additional views but the family refused. After discussing the risks of possible cancer and subsequent death from untreated cancer, the patient’s husband concluded that a lengthy and painful course of testing and treatment would not be in her best interest.

I saw my responsibility as helping the family to understand the risks and to make an informed decision based on the best interests of the patient. The fact that the patient had an advanced directive in place facilitated this process.

How do we ease this transition?

A Nurse’s Perspective…

The answers to this question depend on a wide variety of factors including one’s religious /spiritual beliefs. I can only offer my perspective as a health care provider and a recipient of health care:

1. We all have responsibility for our own health. Although my nursing education charges me to promote wellness and treat illness, I prefer to do this as a partner of the person seeking health care. Therefore, I see my responsibility as ensuring that each person understands their options and is given the opportunity to state their end-of-life wishes.

If a person’s wishes are not known, it is the health care provider’s responsibility to institute lifesaving measures. In such situations, the family is a key component in the decision-making process. In other words, we not only minister to the patient, we minister to the family of the patient.

2. Options are available: Advanced care directives—also known as living wills or personal directives—are legal documents that support wishes regarding end-of-life care. A growing focus on hospice and palliative care programs within hospitals has helped to promote death with dignity, although compliance with health care directives can vary from state-to-state.

Consumers of health care need to be aware that they are available … and follow up to ensure that they are observed. We have a long way to go as a society in putting these protocols into action, but it is a start.

Five Wishes, a “living will with a heart and soul,” is an advanced directive created by Aging with Dignity.  I find it particularly helpful for people who are not sophisticated about medical technology and treatment, as it includes:

• Wish 1: The Person I Want to Make Care Decisions for Me When I Can’t

• Wish 2: The Kind of Medical Treatment I Want or Don’t Want

• Wish 3:  How Comfortable I Want to Be

• Wish 4:  How I Want People to Treat Me

• Wish 5: What I Want My Loved Ones to Know

3. In her book, No One Has to Die Alone: Preparing for a Meaningful Death, Dr. Lani Leary promotes involving the dying patient in decisions related to their death. She cites that “most dying patients fear the isolation and loneliness of dying more than the pain or finality of death.” (page xiii, from the Preface)

Let’s talk…

While we have the legal mechanisms available to ensure that anyone in the terminal stage of illness will have the option of deciding the kind of death they want, we all know of cases where a court order had to be obtained because the patient’s wishes were not known and/or the family disagreed. Many hospitals have ethics committees to review cases where there may be a conflict related to end-of-life care or if the patient’s wishes are not stated or documented.

We’re all going to die someday. Why not have your wishes known ahead of time so when the time comes your transition will be a time of peace and healing?

I have seen it work both ways—with and without advanced directives. The difference is striking. When my beloved father died in 2010, his wishes were known and honored. The grief was there but the sense of peace and solace in knowing his wishes were honored carried us all through and remains a source of comfort to this day.

We all have the right to have our final wishes honored and to die on our own terms surrounded by those we love. Do you have an advanced directive?  Have you talked to your loved ones about the kind of death you want?

Maybe it’s time to start this conversation.

I’d love to hear your thoughts on this ~

 

 

KathyPoolerBrighterKathleen Pooler is an author and a retired Family Nurse Practitioner.  Her memoir, Ever Faithful to His Lead: My Journey Away From Emotional Abuse, published in July, relays how the power of hope through her faith in God helped her to transcend life’s obstacles and disappointments: domestic abuse, divorce, single parenting, loving and letting go of an alcoholic son, cancer and heart failure.

Her work-in-progress sequel, Hope Matters: A Memoir explores how her faith helped to live a life of joy and contentment.  Kathy has also been published in several anthologies, including The Woman I’ve Become and My Gutsy Story Anthology.

She lives with her husband Wayne in eastern New York.

She blogs weekly at her Memoir Writer’s Journey: http://krpooler.com

 

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A Christmas Tale

 

As a special treat, I am reprinting a recent blog by my Irish friend David Lawlor, who offers an historian’s perspective on the Christmas tradition.

 

Santa—the Good, the Bad and the Downright Ugly

                  He was dressed all in fur, from his head to his foot,                                                           And his clothes were all tarnished with ashes and soot.                                                     A bundle of toys he had flung on his back,                                                                   And he looked like a peddler, just opening his pack.        
His eyes—how they twinkled! His dimples how merry!                                     His cheeks were like roses, his nose like a cherry!                        His droll little mouth was drawn up like a bow,                             And the beard of his chin was white as the snow.

(A Visit From St Nicholas)

Ah yes, we’re gearing up for that time when children all over the world await the arrival of the big man with the beard and the red suit – and that’s all that need be said to know of whom we speak. All I have to do is recall the movie Miracle on 34th Street and a warm fuzzy glow warms my tummy. However, it’s worth noting that a few steps had to be taken in Santa’s evolution before we reached that point.

In Germany, St Nicholas actually comes on the night of December 5-6 when little boots are filled with all manner of goodies and left beside children’s beds. We follow this tradition in our own house as my son was born on December 6 and his mum is German. So far, thankfully, our four young ones have not interrogated us too severely as to why other children in the neighbourhood miss out on this early visit from St Nick.

Of course the real St Nicholas would probably scratch his head in puzzlement at the whole Santa tradition. I refer, of course, to St Nicholas of Myra. Born in Petara (in modern Turkey), he had a habit of putting coins in people’s shoes as a gift and it’s from this practice that Father Christmas originated. St Nick is also the patron saint of pawnbrokers (some say bankers, too), which takes a bit of the gloss off his story, but we can’t blame him for that.

The book One Night Stands with American History claims that it was 17th century Dutch settlers who brought Father Christmas to America. Based on the Dutch winter figure of Sinterklaas, he was  “tall, slender and very dignified” and without even a bristle to be found on his chin.

Incidentally, the Dutch Sinterklaas is said to be accompanied by his servant Zwarte Piet (Black Pete) carrying a big bag of goodies for all the boys and girls. Some songs suggest that the bag is also useful or bundling naughty children into and hauling them away.

220px-MerryOldSantaLittle did he know it, but Santa was in for a major makeover. Cartoonist Thomas Nast set the ball rolling when he added the beard and the rotund figure in the pages of Harper’s Weekly towards the end of the 19th century.

The story goes that Santa got his popular colour combination due to an advertising campaign for Coca Cola. It’s certainly true that the company helped popularise Santa amongst the general public. In 1931 Coca Cola commissioned illustrator Haddon Sundblom to develop advertising images using Santa Claus — they were so successful they ran right up to 1964.

For inspiration, Sundblom read Clement Clark Moore’s 1822 poem A Visit From St. Nicholas in which Moore describes Father Christmas as being warm, friendly and pleasantly plump. However, Santa appeared in a red coat long before Sundblom put brush to canvas.

Washington Irving (1783-1859), author of The Legend of Sleepy Hollow, wrote a Christmas story about giving and generosity in which he described Santa as a large man in a red suit smoking a pipe.

Jolly old Santa is now so popular that in America 20,000 rent-a-Santa’s are trained every year to maintain that happy demeanour (no matter what the provocation). They are also given such practical tips as to avoid eating garlic and, er, beans prior to visiting their young clients – the last thing one would want would be for Santa to leave more than one present behind…

But there was a darker side to St Nick. Early illustrations depict him as a bit of a tough cookie. He seen as stern, commanding, and bearing a birch rod, with which he would punish naughty children. This description ties in with that of the Viking god Odin, who is somewhat of a precursor to the modern Santa. According to myth, Odin rode his eight-legged flying horse, Sleipnir in winter and gave out both gifts and punishments. Children would fill boots or stockings with treats for Sleipnir to feast on.

Neither of the above are very appealing forms of Santa (although I do have a soft spot for Billy Bob Thornton as the leering, booze-fuelled armed robber Father Christmas in the movie Bad Santa, which is absolutely hilarious).

If the notion of a bad, vengeful Father Christmas dishing out punishment to unsuspecting children is a little disconcerting then you’d better brace yourself…

krampusIn parts of Austria, Germany, Hungary, and some neighboring countries, a hairy, evil beast called Krampus replete with horns, hooves, a long tongue, and sharp claws is said to terrify children at Christmas. Since the 17th century he has accompanied Santa on his annual gift-giving trip.

Naughty boys and girls beware – Krampus’s job is to dish out punishment to them. He carries a large wicker basket on his back and kidnaps misbehaving children and brings them to Hell.

Never have the lines: ‘You better not shout, you better not cry, you better not pout, I’m telling you why’ been more apt.

Give me Billy Bob’s Santa any day. Happy Christmas.

 

I wish you all the best of this holiday season.

See you again in January.

Living in Free Fall

 

Free Fall A recurrent theme in my life is that you grow the most when you step outside your comfort zone. It is a heady feeling to realize that a painful experience that had you in free fall for a time has made you stronger and wiser … to realize that, using Bradbury’s metaphor, you have indeed grown new wings.

What’s easy to forget, once those new wings have grown and set, is just how rough it is when you are in free fall … when you don’t know where you’re trying to get to … when you don’t trust your own judgment … when you have no idea quite what to do next.

It’s all the harder when you are in free fall off a cliff you didn’t even see coming.

To put this in perspective, I will take you back to 2008. Depending on how you count, I had changed careers half a dozen times over the previous 38 years, including several times when I dropped off the corporate ladder for a period of years. Some transitions were harder than others, some more successful than others, but there seemed to be a consistent pattern, one in which my skills in one arena provided a temporary branch to hang on to while I grew new wings in another.

When I decided to give up finance to be a creative writer, I expected this transition would go smoothly. After all, I was an experienced business writer. I’d taken university-level courses on creative writing. I’d published a memoir about sailing around the world at age 40.

Friday, I was a financial consultant.  Monday, I would be a writer.  How hard could it be?

Pretty hard, as it turned out.

What I overlooked, as I launched myself into the writerly world, was the common thread that stitched my earlier transitions into a satisfying quilt … the opportunity to work with smart people who were big thinkers. My success lay, to a very large extent, in my ability to carry out complex projects that these big thinkers—whether mentor, client or husband—believed were important.

In 2008, however, there was no client or mentor or husband. I had lots of ideas, but no way to set priorities or assess whether they were worth pursuing.

And then, one morning, as I waited for the first edition of Sailing Down the Moonbeam to be delivered, I recalled one of those wing-growing experiences as we sailed across the Pacific Ocean. Most of the time, my husband and I were vulnerable to unpredictable winds and currents. Setting goals was an exercise in frustration, since we could not control our progress on any given day. The best we could do was set a course that took us in the right general direction. All too often, we revised our course several times. More than once, we had to change our destination.

The metaphor seemed obvious.  If I wanted to I be a writer, I needed to write and hope my words would cumulate to a writer’s persona. Write something. A blog. A book review.  An essay.  Anything. Now, today.

It was a eureka moment.

I’d like to be able to tell you that I grew my writer’s wings that day.  I didn’t. Those simple goals got me out of bed every morning, but it was months before I did so with any enthusiasm.  It was several long and painful months before my wings started to grow.

Now, six years later, I have a writer’s wings. A novel and a memoir. A regular blog. A steady stream of freelance work. Invitations to speak to book clubs, libraries and community groups.

But once again, I seem to be in free fall. How can I be a writer if I don’t have a meaningful story I feel compelled to tell, or an idea I feel compelled to write about? Having just turned 70, I’m intrigued by the personal and societal challenges as the boomer cohort ages.  But how much of my thinking is unique enough to be worth writing about?

Once again, I seem to be grasping frantically for a branch to retard my free fall … give me a few extra moments to develop the wings I’ll need for my next act?  But what’s that next act? A writer in her 70’s with temporary writer’s block. Or a humanist for whom aging IS the next act, whether you write about it or not? Or maybe something else I haven’t even thought about?

What do you think? Can we still sprout wings at 70??

The Ineffability of Aging

 

IMG_9068No so long ago, I viewed 70 as the beginning of “old age.”

Trouble is that today—my 70th birthday—I don’t feel old.  Yes, I have grey hair, along with wrinkles in some places I would never mention in polite society. I do get annoying muscle cramps more often than I would like.  But I can climb six flights of stairs several times a day, and the body that I see in the mirror looks a whole lot better than it did when I was 18. I have fewer aches and pains today than I did at age 50, a combination of eating better and getting more exercise. And good genes certainly don’t hurt.

Statistics tell me that I could live another 10-15 years; given my health and genes, it could be easily be another 30 (my mother lived to 90; I have countless friends with parents approaching 100).  I’ve been encouraged by several articles I read of late, including a recent editorial in the New York Times by David Brooks, that report on the “U-Curve,”–the pattern of changing levels of emotional satisfaction over the course of life.  Statistics on the U-curve suggest that happiness/ contentment declines from childhood to about age 50, and then trends upward more or less steadily. Given my own emotional pattern over the decades, I should be bordering on ecstasy by 100.

But do I really want to live another 30 years?

An interesting approach to the question of aging comes from physician, academician and bio-ethicist Ezekiel Emmanuel. In a recent article in the Atlantic Monthly, he coined the term “American immortal”—what he calls the obsession “with exercising, doing mental puzzles, consuming various juice and protein concoctions, sticking to strict diets, and popping vitamins and supplements, all in a valiant effort to cheat death and prolong life as long as possible.”  You can add to his list, of course, all of the various medical interventions—mechanical, surgical and pharmaceutical—that we use to mask the reality of our inevitable aging and mortality.

Emmanuel has concluded that he would prefer to die at age 75. In his view, that is plenty long enough to have lived a full and rich life with a satisfying career, a good marriage and a thriving family, including grandchildren.

It seems at first, to be a curious position for someone who opposes suicide, assisted or otherwise. But his argument is not that he refuses to live beyond 75.  Rather, he has decided that as he approaches 75, he will cease taking pro-active steps to retard aging or prolong his life. No flu shots, vitamins, or anti-biotics. No screening exams. No surgical or mechanical (e.g., a pacemaker) interventions. No chemotherapy.  No drugs (e.g., statins or blood pressure meds) to keep his bodily functions performing as if he was still young.

The only medical treatment he will consider is palliative care, if he needs it to keep him comfortable toward the end. In his words, “I will die when whatever comes first takes me.” This is, of course, what mankind has done for thousands of years … until medical technology took over the management of aging and death in the mid-1900’s.

I find his argument compelling, although I’m not sure 75 is the age I’d choose.  Perhaps 80 or 85.

And I also find myself pondering the boundaries of palliative care. Shouldn’t it include the repair—surgical, pharmaceutical or mechanical— of traumatic events that diminish the quality of life but will not kill you? A broken arm or leg?  A case of poison ivy. A hernia. And what about diet and exercise? Eating properly is its own reward, just in how you feel, regardless of its long-term benefits for your health.  Similarly, exercise stimulates brain chemicals that make you feel better, mentally and physically. Should I stop doing it simply because it has the age defying-ability to preserve muscle tone and bone density?

What would you do?

P.S. Emmanuel explicitly reserves the right to change his mind at any point along the way!

Respect – My Lai in Black and White

 

respectThe worst moment for me, in a string of horrible moments, was the sight of Lesley McSpadden standing out on the street on in front of the Municipal Court in Ferguson.  Like most of America, she was waiting to hear the result of the Grand Jury investigation.

But Lesley McSpadden wasn’t most of America. Lesley McSpadden was the mother of an unarmed young black man shot to death by the white policeman who was the subject of the Grand Jury investigation.

How is it that no one in authority in Ferguson had the decency to invite her into the Municipal Court where it was warm, to provide her with a place where she could sit down when she heard the news?

This is not so preposterous a thought.  Had Wilson’s guilt or innocence been determined through a public trial, McSpadden would have had a seat in the courtroom. She would have had been able to observe the faces of Wilson, McCullough and the jury when the verdict was delivered. Wilson, McCullough, and the jury would have had to observe her grief and shock. McSpadden would have been a participant in our (however flawed) democratic and judicial system.

But that Monday night, standing in the street, she was outside the democratic and judicial system.  She was an anonymous woman of no relevance to the stage show being performed by Robert McCullough inside the courthouse.

This small act—or non-act—of disrespect was not the first in the months since Michael Brown’s death. McSpadden was not allowed to approach him as he lay in blazing sunshine in a public street for four hours. Once his body was removed from the street, she was not allowed to see it for two weeks. Based on comments in a recent CBS interview with McSpadden, no one in Ferguson officialdom has yet found the time—or the empathy—to offer “personal condolences” to her or her family.

To all intents and purposes, the mother of Michael Brown—an unarmed teenager killed by a white policeman—was not seen by the authorities in Ferguson as a human being worthy of respect or empathy.

And that most un-human response–small gestures that would have be so easy for a compassionate person to do—reinforces my fear that Ferguson’s officialdom, in the secret dark recesses of their minds and souls, think that Officer Wilson did exactly what he was trained to do. The fact that Michael Brown was an unarmed teenager who appeared to be wounded is an incidental. What counted was that he had been behaving aggressively towards a white policeman.

The scene in Ferguson brings to mind My Lai, the 1968 tragedy in which the members of Charlie Company, an American infantry group, murdered hundreds of women and children in a small Vietnamese hamlet named Son My. While there are many differences between Son My and Ferguson, the soldiers—like Wilson—were trained to respond to potential threats. Told that the village was under control of the Vietcong, the Charlie Company responded to the threat by killing everyone in the village.

Years later, when the Son My investigation was completed, we learned that no one in the village ever fired a shot at anyone in Charlie Company.

Decades later, we know that Michael Brown did not fire a shot at Darren Wilson.

Who is guilty here?  Is it Darren Wilson? Or is it a system that trains a white police officer in a black community, when confronted by what appears to be an angry or aggressive black man, to shoot first and ask questions later?

Or is it those of us who sit by comfortably, with our evening glass of wine and our holiday reunions, as the Ferguson authorities sanction “official” violence based on old tropes about race … as those same authorities are allowed to be rude and disrespectful to a grieving mother because of the color of her skin?

What we should do?  What would you do?

Legacy: What Will Your Verse Be?

 

In keeping with my recent focus on issues of aging, my blog this week comes from change management consultant, Jann Freed, whose most recent book looks at aging with wisdom, or “sage-ing.”

 

legacyWe often think of a legacy as something that emerges at the end—the end of our lives, the end of a job, the end of a career.  But in reality, we leave our legacy daily with what we say, how we say it, and what we do.

I like to ask:  Are we living our lives in ways we want to be remembered?

After the death of Robin Williams, people reflected on his many movies.  While I loved Good Will Hunting, my favorite movie was Dead Poet’s Society.  As someone whose first career of 30 years was that of a college professor, I was enamored by the way in which his character, John Keating, engaged the students in learning.  Here is one of my favorite lines from that movie:

“We read and write poetry because we are members of the human race and the human race is filled with passion. Medicine, law, business, engineering, these are noble pursuits and necessary to sustain life but poetry, beauty, romance, love, these are what we stay alive for. To quote from Whitman, ‘O me! O life!… of the questions of these recurring; of the endless trains of the faithless… of cities filled with the foolish; what good amid these, O me, O life?’ Answer: that you are here; that life exists, that the powerful play goes on and you may contribute a verse. What will your verse be?”

 

What is your verse now?  

We often think of legacies as positive—people who have made a positive difference.  But legacies can also be negative and it can happen fast, as we witnessed with Coach Joe Paterno and even more recently with Bill Cosby, whose legacy went from great to bad almost overnight.

Yet, legacy thinking is forward thinking.  When we are intentional about our words and actions, we are anticipating how we affect others.  Many of us do not have the money and influence to have our name on a building, an endowment, or a stadium named after us.  But are we leaving the world a better place?

When talking about legacy, I advocate writing an ethical will, which is more than a legal document that describes how we want to allocate our financial and physical assets.  An ethical will (www.ethicalwill.com) is a document that communicates our values, beliefs, and other stories that we want to pass onto others.  Sometimes this document is referred to as a legacy letter, but the intent is the same—to share with others what matters most to us.  An excellent book on ethical wills is titled So the Tree Grows—Creating an Ethical Will—The Legacy of Your Beliefs and Values, Life Lessons, and Hopes for the Future by Jo Kline Cebuhar.

Since many families are scattered and most of us are not sitting around the kitchen table every week sharing stories, being intentional about what you want people to know is important.  When I realized that my sons kept the notes, letters, and cards I sent them at camp, during college, and beyond, I have started writing them “legacy letters” on their birthdays.  While I don’t call them that, I write the letter with the mindset that I am sharing what I want them to know and remember right now.  As they have gotten older and grown in maturity, the subject matter changes.  This has been a nice tradition—whether they realize what I am doing or not.

As Barry Baines, the founder of “EthicalWill.com” says:  “We all want to be remembered and everyone leaves something behind.”  It is the little things that can make a big difference.  Being intentional and thoughtful helps give purpose, meaning, and direction to our life.

So rather than drift with the wind, I challenge you to think about how you want to be remembered.

What will your verse be?  

 

Jann Head ShotIn Jann’s first career as a college professor of business management, she held the Mark and Kay De Cook Endowed chair in leadership and character development at Central College in Pella, Iowa.  She retired in 2011 as professor emerita and is now a leadership development and change management consultant with The Genysys Group.  She calls herself “The Transitionist” because her focus is on helping organizations and individuals get from where they are to where they want to be.

She is the author of five books and the latest is titled Leading with Wisdom:  Sage Advice from 100 Experts. If you want to explore how some of our great leaders have created a legacy, you might enjoy Chapter 9, which is titled “Leaders Live Their Legacy.”

Thoughts on the “End of Life”

 

What is your definition of death? Is it the same as “the end of life”?

End of LifeBased on survey responses from the participants in my seminars on the Bio-Ethics of Aging, the answer depends on whom you ask. What stands out, from their responses, is that discussions of end-of-life issues are fraught with potential for misunderstanding, as the same words mean different things to different people.

For example, most participants defined death in terms that pointed to the cessation of lung and heart function.  A few defined it as the cessation of brain function. Both are accepted medical criteria, but they can result in very different conclusions in different circumstances. Moreover, under current medical practice, policies and procedures to establish the time and fact of death may vary from state to state and from hospital to hospital within each state.

What counts, when you are facing the actual or imminent death of a family member is not your definition of death, but the opinions of your doctor and/or the policies of your hospital. Do you know what they are?

By contrast, the respondents offered definitions for “end of life” that covered a much broader spectrum.  A few individuals defined it in medical terms, often based on religious beliefs.  What I had not expected was that so many participants would define it in terms of the ability to engage in everyday activities—and that there were almost as many definitions as there were respondents to the questionnaire.

For example, some defined it in terms of the end of “useful life”—the inability to contribute in some way, be it financial, emotional, or simply helping with the grandkids. Others defined it in terms of loss of dignity, e.g., the point at which you can no longer take care of yourself. Some defined it in terms of the mental or physical capacity to participate in everyday activities at some—for the most part, undefined—level.

What was clear, from these responses, was that not being dead was not the same as being alive. But these definitions left many questions unanswered, and offered little guidance for someone having to make a decision about a medical treatment that would prevent biological death, but would not return your parent or spouse to the kind of life they wanted.

The issue matters.  I know from painful, personal experience that it is so easy, when you’re struggling to cope with a traumatic situation, to let your physician make all the decisions. When my mother fell and broke her hip, her Alzheimers had already advanced to the point where she could not reliably dress, bathe or get herself to the bathroom. She was not dead, but neither was she alive by her definition; her wish to be dead in that situation was very clear.

Even so, she was sent automatically to the hospital, where I seemed to have no choice but to authorize surgery to repair her hip, an operation from which she never recovered enough to even use a walker. She was even less alive than before the surgery.

The incident prompted my brother and I to research our options in the event of additional trauma.  Our decision, with which many may disagree, was that we’d keep her comfortable but would not authorize any treatment that required hospitalization or would delay the death she so clearly wanted.

When my mother’s physician disagreed, we found a new physician who shared our point of view.  To this day, however, I cringe to think of how it difficult it would have been for my brother and me if the first we learned of our doctor’s definition of “end of life” was when my mother was a candidate for treatment of cancer or a urinary infection … and when we did not yet know what our legal and medical options were.

If you’ve never talked about this with your family or your physician, maybe it’s time.  What most of us want, when an end-of-life occasion arises, is the ability to deal with an already difficult situation with love, compassion and the certainty that you are doing the “right thing.”  Are you prepared?

The Right to Decide

 

medical_heartMuch of the focus of the seminar I teach on the Bio-Ethics of Aging relates to the distribution of health care in a world of finite resources.  An equally important issue, based on the responses of the participants during the three sessions, is the nature and scope of one’s right to decide how to die.

In this context, I would note that the initial impetus for my interest in bio-ethics was the prolonged and painful process of dying suffered by both of my parents.  My father, a devout Catholic, was bedridden and in pain at age 54 with the gruesome complications of diabetes. While his faith made it impossible for him to “hasten” his death, he repeatedly expressed the desire to be allowed to die. The last and most tragic chapter of his illness was that four of the five times his heart failed, his doctor took extraordinary measures to get it pumping again.  When resuscitation failed the fifth time, I mourned loss of his life, but celebrated his death. Legally, he had the right to decide to die a year earlier, but he did not have the stamina to overcome his doctor’s refusal to let nature take its course.

The situation was quite different with my mother who hung in there until a week before her 90th birthday. A talented, capable, vibrant woman who romped through eight decades with élan, she made her end-of-life wishes known when she was 70 and still outrageously sound of mind.  She handed my brother and me each a packet containing detailed instructions from the Hemlock Society, a guidebook for “hastening” her death if she was terminally ill and could not manage for herself.

Her wishes were excruciatingly clear. But in 1985, who knew about Alzheimers?  Her advance directive did not include brain plaques as a “terminal” disease that would trigger her living will.  And even if it had, the laws of the U.S. made it impossible for us to honor her wishes and preserve her dignity during her last decade. No longer of sound mind and increasingly unable to take care of herself—the essence of what she wanted to avoid—she did not meet the requirements of those few states that provide for physician-assisted suicide. The tragedy of her illness was that her occasional flashes of coherence—when she begged to have us end it for her—were far too fleeting to meet the legal requirements in even the most compassionate of states.

And so, a decade after my mother’s death, I’m doing my small bit to prevent others from having to endure the painful and prolonged process of dying that my parents went through. In theory, each one of us has the legal right to decide whether to accept or reject health care. Unfortunately, many do not realize that this legally enshrined principle of “patient autonomy” gets short shrift in far too many cases.

One of the prime offenders of patient autonomy, as I saw with my father, is the medical profession. As Atul Gawande observed in his recently released and not-to-be-missed book, Being Mortal, “the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.”  But death is an inevitable part of life.  Medical advances can make our lives longer, but they cannot “fix” the fact of our mortality. What is to be hoped is that more and more members of the medical profession will learn to help us live a good life and then die a good death.

State laws also conflict with the concept of patient autonomy and the ostensibly legal standing of an advance directive. The five states that allow “physician-assisted” suicide do so only for patients who have the mental capacity to articulate their desire to die in the presence of two separate physicians, as well as the physical capacity to self-administer the medicine of choice. The mental capacity without the physical ability is not sufficient. An advance directive that explicitly documents the desire for death in the case of mental incapacity is not sufficient.

As I contemplate my next novel, I know that end-of-life issues will be a key plot thread, and the source of a broad range of conflicts between my characters.  Over the next year, I anticipate doing a series of blogs on health care issues, blogs that raise critical questions for which there are, at present, not very many answers.

I hope you will find the questions helpful in finding your own answers, in exercising your own right to decide.

 

Modern Medicine-A Curse or a Cure

 

Bio-Ethics of AgingFor the second time in two months, I am teaching a three-week class on the Bio-Ethics of Aging. For the second time in two months, I am struck by how little thought otherwise knowledgeable and well-read people have given to the health care and end-of-life issues the baby boomers have to come to grips with as they age.

One of the key questions that we deal with is whether end-of-life decisions should be made by you or by the medical community.

I was thrilled when my one of my favorite bloggers and writers, Joan Z. Rough, asked me to do a guest blog for her on aging and end-of-life issues. The timing of my blog for coincided with the very public death of Brittany Maynard, the very public discussion of end-of-life issues for a young Iowa woman suffering from brain cancer, and the rather more private but intentional death of an older woman I have admired for years.

It is a blog I would have put here if I had not already committed to publishing it on her site.  I hope that you will visit Joan’s website to read my comments.

Here is an excerpt from that blog to tempt you …

As recently as 200 years ago, if you stopped breathing, you were considered to have died, whatever the cause. There were few scientifically based options to prevent or delay death.

A watershed moment in the history of medicine came with the invention of the stethoscope in 1816 and the ability to register a heartbeat. But there were still no science-based treatment protocols.  For the next century, death continued to be, as it had been for much of the history of mankind, a part of “God’s plan” or—if you were of the atheistic or pagan persuasion—a matter of fate.

Until 1928, that is, when Alexander Fleming discovered penicillin. Suddenly, man no longer had to rely on God or fate to determine the outcome of an injury or an infection. Over the last 90 years, our ability to triumph over illness has expanded exponentially.  Today, we can prevent most infectious diseases (Ebola being a notable exception), repair a faulty heart, excise a malignant tumor, or replace a failing kidney.

For much of the 20th century, these medical advances focused on preventing “premature” death from infection, disease or trauma. But these often seemingly miraculous discoveries had a number of unintended consequences.  For one, the medical advances that keep young and middle aged Americans healthy have played a major role in the explosion of health care costs for the elderly. By preventing or curing acute illness, we have expanded the population vulnerable to chronic illnesses such as diabetes or COPD, many of which cannot be cured at all and are treated at great cost.

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