Joy and Fear during the holidays

I recently published this piece in a couple of local newspapers.  I did already share this on Facebook but I thought pre-Yom Kippur, it would be good to reflect once again on this idea.

Joy and Fear during the holidays:

The Rosh Hashanah liturgy describes the Jewish New Year as a day consisting of two diametrically opposed images:  “Today is the birth of the world.  Today all creatures of the world stand in judgment – whether as children [of God] or as servants.  If as children, be merciful with us as the mercy of a father for children.  If as servants, our eyes [look toward and] depend upon You, until You be gracious to us and release our verdict as light, O Awesome and Holy One.”  How can a person simultaneously grasp these two images of a day of birth, a day filled with joy and expectations, and a Day of Judgment, a day filled with fear and trembling?   

As part of the preparation for the Jewish holidays of Rosh Hashanah, Yom Kippur and Sukkot, there is a tradition to recite Psalm 27 at the conclusion of the daily morning services  as well as either the daily afternoon or evening services.  The recitation of Psalm 27 commences at the start of the Jewish month of Elul, the month preceding the holidays, and continues through the end of Sukkot.  The words of Psalm 27 were King David’s prayer to G-d that he should merit dwelling in G-d’s midst, even when feeling abandoned and orphaned in the world.

In times of joy, it is fairly easy to find comfort and peace in life.  Most people feel a sense of elation and independence.  When in crisis, however, people often turn to those who have always provided strength and security for them in life.  For most, parents represent that security.  Yet, many of the crises faced occur when parents are no longer able to help.  I have heard many caregivers of a dying loved one express the wish that one or the other parent were still alive to be a rock during troubled times.  In the pre-holiday tradition of reciting Psalm 27, one of the verses recited reflects on the need for security during crisis.  King David said, “While my father and mother have forsaken me, G-d will gather me in (27:9).” 

The liturgy highlighted above focuses on the crisis moment of the holidays.  The image of standing in judgment is an acute reminder that every year, as time moves forward, we face the inevitable truth that for some, the past year was not meant to be completed.  As such, survivors are struck by a sense of loss during the liturgical points reminding them of the essence of Rosh Hashanah and Yom Kippur, namely the renewal for another year for some people while the conclusion for others.  And yet, hope remains, that when we feel forsaken, there is still something to protect us.     

Loss changes the fabric of one’s life.  It removes the sense of invincibility and security.  Yet, while reflecting on Judgment Day, one is also reminded that there will always be a security blanket.  The security blanket, G-d, can be cherished or can be discarded.  Either way, the blanket remains, accepting however one feels and reacts to happiness and sadness, joy and fear. 

Dignity Therapy: For The Dying, A Chance To Rewrite Life : NPR

Dignity Therapy: For The Dying, A Chance To Rewrite Life : NPR.

One of the important pieces of working with the dying is to give them or their families an opportunity to rethink and relay their lives to others.  We are afraid that we will not have a legacy, and as such, some of our fear of death could potentially be alleviated through reflection and story telling.  There is a formal methodology for this, which is called dignity therapy.  Unfortunately, for many, reflection comes too late because of other concerns getting in the way, such as the fear of telling the person the truth because if someone knows he is dying, the person will get very depressed.  Instead, dignity therapy is a means of working through the depression to find a place of meaning that will outlast one’s life. 

For several decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that can help people cope with the reality of their death. One of these therapies asks the dying to tell the story of their life.

This end-of-life treatment, called dignity therapy, was created by a man named Harvey Chochinov. When Chochinov was a young psychiatrist working with the dying, he had a powerful experience with one of the patients he was trying to counsel — a man with an inoperable brain tumor.

“One of the last times that I went into his room to meet with him, on his bedside table was a photograph of him when he had indeed been young and healthy and a bodybuilder, and it was this incredible juxtaposition of these two images,” says Chochinov.

So in the bed there’s his patient — this skeleton of a man — very pale and weak. On the bedside table, there’s this portrait of a glistening, muscled giant. And Chochinov says that sitting there, it was very clear to him that by placing this photograph in such a prominent position, the man was sending a message: This was how he needed to be seen.

As Chochinov continued his work with the dying, he confronted this again and again — this need people have to assert themselves in the face of death. And he started to wonder about it…

“When you face death, it’s like facing a wall, and it forces you to turn around and look at the life that you’ve lived,” says William Breitbart, a psychiatrist at Sloan-Kettering Cancer Center in New York. He’s been trying to develop new psychotherapies for the dying. He says that many people have the wrong idea about the dying process.

“The prevailing mythology is that you die the way you live, and you can’t change yourself in any way,” says Breitbart. “The fact is that the last few months of life — because of the awareness of death — create an urgency that facilitates growth and change.”

This, he says, is why something like dignity therapy can be good. Though there’s no evidence that it relieves depression or anxiety, he thinks it can help us change in the very last moment of our lives. After all, he says, we’ve all lived imperfect lives.

“All of us fail, and the process, the task of dying, is to relieve ourselves of this guilt, whether it’s forgiving yourself or asking others to forgive you,” says Breitbart. “Or to remember your life slightly differently. But that’s the task of dying.”

As for Frego, she says she’s developed a strange relationship to the document her mother put together. Since her mother’s death, Frego says she’s actually carried the document around with her. She has the story of her mother’s life, always at her side, knocking around in the bottom of her bag.

My Worst Enemy’s Shiva

I found this today and felt it was quite important to share as a whole.  People have enough trouble paying a shiva visit in general.  How much more so when we think we need to visit someone we are in conflict with.  I am somewhat concerned by the Q and A here.  While I agree with the author’s response and strategies for visiting and how to visit, I would have started with a simpler question;  why do you feel the need to visit in the first place?  Is it out a sense of reconciliation, or a sense that the fighting was a mistake to begin with?  Or do you merely feel the need to fulfill the commandment of comforting the bereaved?  Nevertheless, consider the answer Hammerman offers for it does provide us a real sense of the appropriate timing and means of visiting while limiting the potential for fighting. 

Q. The mother of my worst enemy just died and I’m not sure whether to visit during Shiva. In truth, I sincerely see this as a chance to reconcile (we haven’t spoken in about five years but have a lot of friends in common). My only concern is that he would misinterpret the reason for the visit and kick me out of the house. I really don’t want to cause him any discomfort. What should I do?

A. Do you think this would be the first time that two people at a shiva had unresolved issues?  It happens all the time, usually involving people from the deceased’s family who are barely on speaking terms. I’ve seen amazing moments of reconciliation happen during the period of grieving. When someone says “over my dead body,” sometimes that’s precisely the most likely location for enemies to reunite, as happened to  Isaac and Ishmael when they buried Abraham.

So go.

But I add this disclaimer: If you poisoned his Akita or stole his birthright, I might hold off until the time is right. Jacob’s journey back to Esau was paved with gifts and trepidation. It took decades before each party was ready. In any event, if you do go to the Shiva, I’d avoid visiting during peak periods, when the mourner might feel you are simply making an appearance for show. If the guy shows signs of being uncomfortable with your presence, or worse, begins to make a scene, I’d make a hasty exit and not take it personally.  The rabbis explained that the second Temple was destroyed because of the resentment of a person humiliated in public by his worst enemy. Don’t let that happen to you. It’s also OK to wait until after shiva, when you might call and meet for coffee in a quite spot. Or maybe the best strategy would be to write a heartfelt letter.

I believe that all conflicts have an expiration date. Even the Hatfields and McCoys signed a truce just a few years ago. If you could reconcile with your worst enemy and become a true pursuer of peace, echoing the words of Psalm 34:15, you will make the world a better place. And an enormous weight will be taken off your shoulders.

The Good Short Life With A.L.S.

The Good Short Life With A.L.S. – NYTimes.com.

This piece is the kind of first hand account of dying that causes me to pause and reflect on the conflict we all face between wanting to keep living and yet not wanting to become a burden to others.  The author seems to say that he would rather allow nature to takes its course than to begin the various artificial means of prolonging life. 

As a Jewish chaplain who has tremendous problems with the idea of euthanasia/assisted suicide, I am challenged with a story like this.  If he were Jewish, would he be forced to have a tracheotomy because of the idea that every second matters?  Or would we accept that he does have a choice if that choice is coming from a desire to avoid further suffering?  I certainly empathize with the author, but am left with one additional question:  In the discussion of assisted suicide, one of the pieces often overlooked is post-death grief.  While the author is not saying he will avail himself of such a way out, it is still important to wonder about how the survivors will process the death when no means are taken to extend his life.  To me, I tend to believe that assisted suicide often leaves families scarred in ways that we tend to ignore in the face of the ill person’s suffering.  If we are intertwined, then both elements should be taken into account when decisions are made. 

I HAVE wonderful friends. In this last year, one took me to Istanbul. One gave me a box of hand-crafted chocolates. Fifteen of them held two rousing, pre-posthumous wakes for me. Several wrote large checks. Two sent me a boxed set of all the Bach sacred cantatas. And one, from Texas, put a hand on my thinning shoulder, and appeared to study the ground where we were standing. He had flown in to see me.

“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with.

“Yes, Sweet Thing,” I said, with a smile. “We do.”

I loved him for that.

I love them all. I am acutely lucky in my family and friends, and in my daughter, my work and my life. But I have amyotrophic lateral sclerosis, or A.L.S., more kindly known as Lou Gehrig’s disease, for the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38.

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But it is not a kind disease. The nerves and muscles pulse and twitch, and progressively, they die. From the outside, it looks like the ripple of piano keys in the muscles under my skin. From the inside, it feels like anxious butterflies, trying to get out. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar, and that’s the way it is with me. We don’t live as long, because it affects our ability to breathe early on, and it just gets worse.

At the moment, for 66, I look pretty good. I’ve lost 20 pounds. My face is thinner. I even get some “Hey, there, Big Boy,” looks, which I like. I think of it as my cosmetic phase. But it’s hard to smile, and chew. I’m short of breath. I choke a lot. I sound like a wheezy, lisping drunk. For a recovering alcoholic, it’s really annoying.

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.

I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

And that’s the point. This is not about one particular disease or even about Death. It’s about Life, when you know there’s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It’s liberating.

I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.

It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.

The next morning, I realized I did have a way of life. For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn’t just about me. They taught me how to be a father. And perhaps most important, they taught me that I can do anything, one day at a time.

Including this.

I am, in fact, prepared. This is not as hard for me as it is for others. Not nearly as hard as it is for Whitney, my 30-year-old daughter, and for my family and friends. I know. I have experience.

I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.

I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end.

I have found the way. Not a gun. A way that’s quiet and calm.

Knowing that comforts me. I don’t worry about fatty foods anymore. I don’t worry about having enough money to grow old. I’m not going to grow old.

I’m having a wonderful time.

I have a bright, beautiful, talented daughter who lives close by, the gift of my life. I don’t know if she approves. But she understands. Leaving her is the one thing I hate. But all I can do is to give her a daddy who was vital to the end, and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in Baltimore. I want to take the sting out of it, to make it easier to talk about death. I am terribly behind in my notes, but people are incredibly patient and nice. And inviting. I have invitations galore.

Last month, an old friend brought me a recording of the greatest concert he’d ever heard, Leonard Cohen, live, in London, three years ago. It’s powerful, haunting music, by a poet, composer and singer whose life has been as tough and sinewy and loving as an old tree.

The song that transfixed me, words and music, was “Dance Me to the End of Love.” That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.

It’s time to be gone.

Dudley Clendinen is a former national correspondent and editorial writer for The Times, and author of “A Place Called Canterbury.”

What Would You Do If You Did Not Fear Death?

Death awareness, recognizing that death comes for everyone, is an area humanity struggles with, especially in this day and age.  As the following post describes, those who have deeply ingrained spiritual practices will often have a more fundamental approach to the idea of death as a part of life.  If we know we will die one day, then we might strive to live life more fully.  The reality is that most people, even though death is not something hidden away, still find a way to deny the inevitable.  Part of the reason for this denial is the basic human need to live.  My soul, my ego, cannot fathom an existence that doesn’t include me in it.  I have used this in practice, having challenged people to think about the concept of not being alive, and for most, the thought is something one has struggle to keep in one’s mind for more than a few seconds.  Even those in health care, including hospice, while exposed to illness and death all the time, don’t always believe in his/her mortality, and thus lives life like it won’t end.  I offer this piece a thought piece, with the title being the question to ask, because if we ask that question, then the other question, what do I want my life to have been about, will be a valuable tool to enhance our lives. 

Many spiritual traditions advise that we keep the end in mind throughout life. But in this culture, contemplating death is seen as “heavy,” a downer. We’re less like Hamlet holding the skull of his family’s court jester, Yorick, and more like Scarlett O’Hara. We plan to think about death not today, but tomorrow or the next day. As a result, when the bell of mortality strikes, we’re totally unprepared.

“Shrinking away from death is something unhealthy and abnormal which robs the second half of life of its purpose,” said Marianne Williamson quoting Carl Jung. She was speaking at the recent Art of Dying conference jointly sponsored by the New York Open Center and Tibet House, and held at Menla Mountain Retreat Center. http://www.tibethouse.us with Williamson, and preeminent Buddhist scholar, Robert Thurman, Ph.D., who offered plenary talks and workshops, the conference featured a number of experienced leaders in spiritual hospice work.

Practitioners and healers who regularly bring presence, caring and spiritual contemplation to people in the transition between life-in-embodiment and death, see vital spiritual lessons for all of us in this inevitable passage. A recurring message throughout the three days, was that we are missing out on an precious opportunity for spiritual growth, when we avoid confronting and contemplating what we call death.

“Who do I need to be to be a trustworthy presence and compassionate person?” asked Frank Ostaseski. A co-founder of the Zen Hospice Project, the first Buddhist hospice in America, and founder of the Metta Institute‘s End-of-Life Care Practitioner Program. Ostaseski shared the inner contemplation that living daily with the dying had awakened in him.

Therese Schroeder-Sheker advises a daily practice of metanoia — contemplating and dying every day to the aspects of ourselves that don’t serve. Schroeder-Sheker has played the harp, and sung at the bedsides of those in transition for over three decades. She founded the palliative medical field of music — thanatology and the Chalice of Repose Project, which trains teachers in palliative music vigils with the dying.

A transparent joy exudes from those who attend the dying. Apparently, the active awareness of death can prompt us to live life with greater integrity, authenticity and purpose, knowing that our actions, thoughts and intentions count.

In our “materialist culture, people think that after death they go to the great Halliburton nothingness — and they are out of all consequences … ” said Robert Thurman, the author of “Why the Dalai Lama Matters.” He warned that “You are not getting out of the consequences of your actions by dying. Everything you do in life matters because it has an infinite resonance in the universe. [Facing up to death] gives us the power to be incredibly caring at even the tiniest level — it’s what guides our practical steps.”

When it comes to being with a loved one who is dying, Frank Ostaseski reminded participants that “We each have the capacity to embrace another’s suffering as our own. We’ve been doing it for thousands of years. You know how to do this — it’s in your bones.”

But he asked, “How did we turn this intimate act of caring for each other into an obligation, duty or profession? Dying is not a medical event — it’s about relationship with the self. We’ve forgotten this, and so we’ve become frightened. Too many people are dying in fear.”

The fear arises because “We see so much pain and suffering. We see genocides, holocausts and Hiroshimas,” says Robert Thurman, but he counsels, “They are real — but not really real. Bodies are incinerated — but souls are not.”

“On some level, we know that,” says Marianne Williamson, who pointed out that we sometimes turn away from death out of denial. Yet we also, on some level, know that the core of who we are does not die.

Fearfully avoiding the reality of death increases suffering at the approach of this inevitable life passage. And, paradoxically, so does the belief that we are nothing but a body.

“We’re born and we die,” Ostaseski noted, inviting us to “sit down with death and have a cup of tea.”

Williamson posed a question for that tete-a-tete:

“What would you do right now if you did not fear death?”

End Of Life Spiritual Care: A Pathway to Growth and Peace

In the following online post, Rev. Dr. Walter J. Smith presents a general overview as to the power and need for spiritual care for the dying.  As he describes, spiritual care can potentially be provided by any visitor.  This concept is one that transcends time.  It is a derivative of the famous rabbinic idea that a person improves by 1/60th after being visited.  As you will notice in reading his words, the questions being asked in the three vignettes all reflect the personal crisis that we go through when we are vulnerable.  The questions are not always asked to be answered, though there are times when a person is really looking to reflect on the specific questions relating to one’s relationship with G-d.  As you read, reflect on how these stories resonate in your own life’s narrative.   

Doug, 81, recently learned that he has end-stage cancer and probably only a few months to live. He’s devastated, frightened and feels alone. His wife died two years ago, and he has missed her greatly. He has outlived his siblings and closest friends. His only daughter lives 2,500 miles away; his three adult grandchildren are scattered around the country as well.

Doug finds himself thinking a lot about what he calls “The Big Questions”: “What’s the meaning of my life? When you add up them up, do my good memories outnumber the failed opportunities and disappointments? What’s going to happens after I die? Is there a God? How will I be judged? How will I be remembered by my daughter and grandchildren?”

Larry is 42 and a Wall Street analyst. Work is his life; it’s how he defines himself. Everything else has taken a back seat to his career: marriage, family, social relationships. Larry has just learned that he has prostate cancer, and question upon question swirl unanswered in his head. “Is cancer going to cut short or radically alter my life? Will I survive this? Will it destroy my career? I went to Harvard. I’ve been killing myself on Wall Street for the past 20 years. And for what, to be facing a radical prostatectomy?”

Doug has not been a religious person. Unlike people who are rooted in a faith tradition and community, he feels adrift. He can’t turn to and rely upon prayers and rituals, clergy and fellow congregants, all of which might help him find comfort and meaning. And he does not have much of a support network either, apart from some of his Wall Street co-workers.

Samantha is a 38 year old African-American single mother of two who has been diagnosed with Mitral valve prolapse, a heart valve disease that will require surgery. She has been treated for high blood pressure for several years, and suffers from shortness of breath and dizziness. She has chronic swelling in her ankles and has gained a considerable amount of weight since the birth of her second child. Although Samantha’s doctors are optimistic about the valve repair and her long-term prognosis, Samantha is pessimistic, believing in a very fundamentalist way that her condition is God’s punishment for her free-wheeling lifestyle, which she believes contributed to her first pregnancy that resulted in a still birth. “Am I a good mother? Did I smoke and drink too much when I was younger? Will God forgive me? How will my children get along if I’m no longer here?”

Although each of these people are worlds apart in terms of their life experiences and diagnoses, what’s common to them is that a serious or life-altering illness has triggered inner questioning and a search to make sense of life. “Who am I? What’s the purpose of my life? Why was I put on this earth?” At their root, each of their questions is spiritual in nature. Spirituality touches the essence of who we are, regardless of whether or not we embrace religious faith or practice.

Spirituality, according to the 2009 consensus conference sponsored by the Archstone Foundation, is “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature and to the significant or sacred.”

Being unable to grapple successfully with these basic questions of existence can contribute to what may be called spiritual distress. Too often, health care professionals — appropriately focused on the diagnosis and proposed treatment plans — pay insufficient attention to the spiritual questions that arise and need to be addressed. People need “spiritual care” as much as they need “medical care.”

When our bodies are under assault from disease or illness and our minds are reeling from the threat of disability or death, our spirit is there to hold it all together. And many people can play the role of a spiritual care provider. Spiritual care might come from a spouse, a doctor or nurse, a priest, minister, rabbi or imam, a trusted friend or co-worker. What is required is presence, an ability to listen and understand, and an honest attempt to help a person find meaning — real meaning — in their life circumstances.

A person in spiritual distress is usually looking for meaning. A spiritual companion, whoever that may be, must understand this universal need to find meaning and commit to accompanying a patient to find and affirm their own answers from within their own life and experience.

That is what a good spiritual companion does. He or she commits to the journey and becomes a mirror held up to their friend’s life, inviting them to look in it deeply and to express truthfully what they see. They encourage their friends to reminisce about events and relationships that have occurred throughout their life and to rediscover legacies, meaning and spiritual strength.

Astute, sensitive spiritual care helps create gentle pathways through which a person might achieve inner growth and peace during critical steps along life’s journey until it is finally completed.

If you know a Doug or a Larry or a Samantha, don’t be afraid to reach out to them in a gentle way. Recognize that people cope with health crises and grief in their own way and at their own pace. Most importantly, offer to be there for them. Listen to what they say and what they don’t say. If your friend is in a hospital, ask if they’d like for a chaplain to visit. I’ve learned from many years of observation that professional chaplains are particularly able to help people — regardless of faith or beliefs — to find meaning and comfort.

Meaning and comfort is what we all need and what we all desire.

You Don’t Have to Believe in Heaven to Find Life after Death

When people first think about what will happen after one dies, it is usually in relationship to the afterlife.  Is there an afterlife and what does it look like?  While this is a deeply spiritual question that much ink has been spilled over, when it comes to this search among those who are dying, it is often times more about an immediate fear.  Before a person dies, they often worry about the legacy left behind and missing the major life events in the family.  In order to combat this particular fear, professionals will suggest some form of written or graphic form of leaving a legacy.  As you can see below, I have included a recent posting about leaving behind some keepsake for the survivors. 

Legacy can refer to the totality of a person’s life, or to the impact or influence of our lives in the world. For those near the end of life — and for their loved ones — legacy building offers powerful comfort at the end of life. It provides a way to ensure a continuing presence in this world and to leave something meaningful behind.

Psychologist Erik Erikson hypothesized that a late stage of personal development is generativity: the need to create a positive legacy that lives on after death — to leave a part of the self to future generations to help guide their lives.

Legacy building provides a way to address fundamental spiritual questions: “How have I made a difference in the world?” “What is the value of my life?” “What is my place and purpose in the universe?

Typically, life after death implies going to heaven. A 2005 ABC News poll indicated that most Christians in the United States envision continued existence in a heavenly, other-worldly place after death.

However, the practice of legacy-building expands the way we think about afterlife.

For those whose spiritual worldview may not envision or emphasize a supernatural afterlife, legacy building can diminish existential anxiety about death. Legacy building provides “this-worldly” possibilities of eternal life through the indelible impact that we make on those around us. It provides hope of continuing existence through everlasting bonds or ongoing influence in the world.

In recent years, the practice of writing an ethical will has become a popular and useful tool to assure continued presence and influence after death. Ethical wills are documents prepared before death that contain reflections, blessings, instructions, personal histories, or values to be passed on to others.

Also, “living eulogies” can provide great comfort to those facing the end of life. Messages, emails and videos can be sent to people who are seriously ill. Friends and family members can share stories and reminisce about meaningful times. These testimonies of enduring connections and contributions are powerful affirmations of life and legacy.

Counselors dealing with end of life issues increasingly rely on therapies that involve legacy building. In reminiscence therapy, the counselor encourages a patient to recall and share memories and past experiences.

Dignity therapy involves life-affirmation and legacy-building. It is more directive and structured than reminiscence, as a “generativity document” is produced after sessions of recalling and discussing life experiences.

Life review therapy is deeper and more evaluative. Patients reflect on the meaning of their lives, and come to terms with difficult aspects of their past. Typically, this process involves reframing the past in order to more gracefully confront death and more effectively cope with the end of life.

Life after death is often conceived as mysterious and other-worldly, but it is not necessarily so. We create an enduring legacy through day-to-day existence — in who we are, in what we do, and in the totality of our lives. You don’t have to believe in heaven to find life after death.

(cross posted here)

What’s More Important to You, Quality or Quantity of Life?

Rev. Dr. Martha R. Jacobs: What’s More Important to You, Quality or Quantity of Life?.

I have been following with interest the story of Desmond Watson, an 87-year-old who has advanced dementia and has been in the hospital in Canada for 14 months. He was admitted to the hospital in January 2010 with pneumonia. His wife of 69 years told doctors that he would want to keep living as long as possible. As a Roman Catholic, she says that he “would have wanted to be given every chance at life despite any suffering he may be enduring.”

“Desmond is suffering without any prospect of long-term improvement,” said one of Mr. Watson’s doctors. This doctor is quoted as saying: “Prolonging life and living are two totally different things … being kept alive in this way, I can’t imagine anybody would wish this … Mrs. Watson is entitled to her opinion but we need to be satisfied for ourselves that we’re doing the right thing … (We’re) not satisfied.”

In Ontario, they have a Consent and Capacity Board (CCB) that reviews cases like Mr. Watson’s. (“The CCB’s mission is the fair and accessible adjudication of consent and capacity issues, balancing the rights of vulnerable individuals with public safety.”) The CCB ruled that because Mrs. Watson (and her two daughters) expressed what she said were her husband’s beliefs, the hospital is required to continue treatment. Unfortunately, none of those caring for Mr. Watson ever asked him what his beliefs and values were even though the Consent and Capacity Board weighs the patients’ beliefs and values in their decisions.

Some of the questions that families have struggled with in situations such as this are: What is “living”? And is this a quality of life that would be acceptable to the patient? As the hospital’s doctor said, “prolonging life and living are two totally different things.”

I mentioned in my last posting that we need to determine for ourselves what our “bottom line” is. The question becomes: When is enough, enough?

And while money should not play a part in the decisions people make, we should at least be aware of the costs to our health system. For example, “Medicare, the health insurance program for the elderly, spends nearly 30 percent of its budget on beneficiaries in their final year of life. Slightly more than half of Medicare dollars are spent on patients who die within two months. Forty percent of Medicare dollars cover care for people in the last month.” This is amazing considering that when asked, most people say that they would prefer to die at home and not in a hospital. And yet, 56 percent die in a hospital and 19 percent in nursing homes. (Read more.)

What is more important to you: quality of life or quantity of life? And where do your religious beliefs come into this consideration?

I am presenting the entire post above so nobody will accuse me of bias by only quoting what I agree with.  Rev. Jacobs presents a story about a religious Catholic family that has a deep belief which is being questioned by the medical establishment, thus setting up an argument about whether their belief is antithetical to good medical care.  Unfortunately, we live in a society today which is beginning to downgrade patient autonomy, even with the increased advocacy for advanced directives and living wills.

If we examine the story closely, we will also see something else which is ethically challenging.  The doctor seems to be weighing his sense of non-maleficence, his desire not to do harm, to be greater than the autonomy of the husband and his health care advocate, his wife.  This is challenging because we want our doctors to act in our best interests as we perceive them to be (which is influenced by our culture, ethnicity and religious beliefs).  A doctor should be comfortable enough to know when the right thing to do is to step away when morally and ethically opposed to a form of treatment or non-treatment, but the doctor must also recognize the patient’s autonomy.

As a chaplain, the role in such a situation would begin by investigating with the family the source of their wishes.  Often, this might entail speaking with their clergy in addition to the health care proxy.  By ascertaining the specifics of their wishes and what is driving their wishes, a chaplain will be better able to provide clarity for all those involved, as in the patient/family and the doctor.  I have often found that many requests start of a place of emotional denial rather than from a place of religious and moral conviction.  This is not to say a person can’t be both in denial and yet feel very strongly about their spiritual and religious beliefs.  Rather, often times the family is struggling with the fundamental challenge of losing a loved one and are looking for something to grasp onto.

To deal with Rev. Jacob’s question of quality vs. quantity and how religious beliefs would play a role in that discussion, I would say both are important ideally. The question of quality vs. quantity of life is completely predicated on religious belief.  If we believe the human being to be a sacred being, both in mind and in body, then we encounter a true paradox.  For most of us, the thought of living without being able to interact as we do during our formative years is frightening.  Yet, even for those who believe in life after death, there is a base fear of life ending prematurely, no matter how old one gets.  Every religion struggles with this question.  There is no right answer to this question, and again, one’s beliefs will be influenced by one’s cultural, spiritual and ethnic background.

(crosspost here)

God Will Not Desert Us: Difficult End Of Life Conversations

Rev. Dr. Martha R. Jacobs: God Will Not Desert Us: Difficult End Of Life Conversations.

In her second installment, Rev. Jacobs discusses her advocacy for families to discuss end of life wishes and issues that might arise.  As we see below, while she stresses the need to be open, she doesn’t present a good how-to guide at this point.  I hope as her series continues she does address some practical aspects of this sensitive subject matter.  I want to stress again that while she is clearly writing to a Christian audience that has a specific theological view of the world, her primary theses are adaptable to other religions as well (though as I have been following her posts, it seems clear that Huffington Post could use someone to provide other cultural perspectives on death and dying.  Stay tuned for my response to a comment she makes about this issue in a subsequent post).

When there have not been conversations about what someone’s wishes are, it is more painful for everyone. It seems especially tension-filled for adult children when a parent is dying. Sibling rivalry rears its ugly head when children have to try to figure out what their dying parent might have wanted … and each sibling has their own, different take on this. These situations, unfortunately, engender arguments and fights at the very time the family should be there to support and comfort each other and their dying parent. Letting your family know your wishes mitigates much of this pain and tension.

Now, let me point out that I did say “wishes” — because that is what one can hope for — that their wishes be followed. That doesn’t always happen for a number of reasons, including loved ones not being able to let go of the person (most people don’t want their loved one to die), and medical personnel not always following what a person has requested in an advance directive. But, if you don’t have an advance directive and/or told those who love you what your wishes are, they can’t be followed!

As she makes clear, the goal of communication doesn’t guarantee that what a person wants will be fulfilled.  The real purpose is to have a base line to work.  Having said that, even the communication of wishes doesn’t always create a “good” death situation.  Sibling rivalry and arguments over interpretation can still happen frequently, especially when the person being affected physically by the wish is no longer capable of making decisions.  This is a place were having hospice care can be valuable, for now the hospice psychosocial staff can be a resource for the family and support the family in a way to hopefully find the common ground. 

So, the first step in this process is beginning to have “those” conversations with the people you love and are closest to you. I am not talking about “death panel” conversations; I am talking about honest conversations about how you want your body treated as you near death. You have the right to have everything done in order to stay alive as long as possible. You also have the right to not have everything done; to choose quality of life over quantity of life. But you need to let people know which one of those (or another scenario) you want.

As I wrote in my first posting, the greatest gift you can give to those you love is to let them know what your wishes are as to how you want your body treated as you near the end of life. It is also important to let them know what your bottom line is in terms of what you would want or need to be able to do in order for your life to have meaning for you. The bottom line will be different for each person and depending on your age, it may change. For example, I completed my first advance directive in 1991. I was in my early 30’s and at the time thought that if I could not do everything by and for myself and be able to resume all of the activities I had done prior to something happening to me, I didn’t want to live. Well, I am now 57 and my priorities have changed.

In this part of her post, Rev. Jacobs reveals the secret behind advanced planning.  Our thoughts change over time, and as I mentioned in my previous post, this is why families must confront these issues every so often.  It is not enough to have one conversation and be done with it.  Recognizing that, the idea of advanced planning becomes that much more challenging. 

As Christians we have a responsibility to ensure that our bodies are taken care of and we know that we do not have infinite life in our physical bodies, which are meant to break down (“from dust you have come and to dust you shall return” — Eccl 3:20). Adam and Eve did not eat from the tree of life, but from the tree of the knowledge of good and evil. (Genesis 3:22) So, we will one day die. And for us, as Christians, that is not the worst thing that can happen to us! We worship one who died and know that there is something greater awaiting us beyond this life. And that is where faith comes into the picture. Faith in God that God will not desert us as we are dying. As St. Paul wrote, whether we live or whether we die we belong to God. (Romans 14:8) Death is not the absence of God’s love, it is the fullness of God’s love. Jesus is with us in our dying and in our living. God’s love will never die, even as our human bodies fade away.

For patients and families of other religions, especially Judaism and Islam, the first part of this last paragraph is very poignant.  We all will die one day as a result of the sin in the Garden of Eden.  If we can grapple with that idea and accept that idea, then we can begin to focus on what it means to die. 

For Christians, additional belief in resurrection learned from the life of Jesus has its own sense of comfort as well as teaching.  This doesn’t mean that Rev. Jacob’s idea of death being another means of G-d showing love is unique to Christian thinking.  Rather, for Christians, the idea of love is recognized through Jesus. 

In general, religion has much to say about death and dying, though one doesn’t always encounter that in day to day religious life.  If we reflect on the general theme of our mortality, we should then be able to be freer in our conversing about it.  Until then, advocating for advanced planning of any sort, regardless of the politics, is almost mute. 

(crossposted at the Stein Hospice blog).

Confronting End of Life Issues

There is a new series of blogposts at the Huffington Post Religion page about issues in end of life care written by Rev. Dr. Martha R. Jacobs.  As they come to light, I will make remarks regarding them.  The first post is a general outline regarding facing the notion of our mortality.  As you will see, while she is writing as a Christian minister and will often reference Christian sources, the ideas and topics can resonate for all of us in some form.

Abraham Verghese, M.D., recently wrote an op-ed piece in The New York Times entitled, “Treat the Patient, Not the CT Scan.” Dr. Verghese pointed out that doctors are literally losing touch with their patients because they are looking at test results instead of at the patient him or herself. In effect, the patient becomes an “ipatient,” while the “real patient feels neglected.” The patient is looked at from the perspective of their disease or ailment or symptoms and not as being fully human…

The basic premise behind much of spiritual care is the idea that we are a composite of our bodies, minds and souls.  We are not just a body being treated for a physical ailment, but all physical ailments have corresponding spiritual and emotional ailments as well.  When we get sick, we become depressed, fearful, introspective, etc. 

As western thought shifted away from seeing the person as this composite, medicine did the same.  Doctors before the modern era were often spiritual healers as well.  While there is not a groundswell of thought to return to such a model, for it was flawed and lacked the precision of knowledge we have today, there is a general push in society that wants doctors to provide holistic care. 

We also need to look at ourselves as being fully human because a part of being human is the recognition that we will one day die. There is a 100 percent death rate in our world. And yet, there is silence on the issues that surround people as they near death. We need to accept ourselves as unique human beings who have fears and concerns about living and about dying. And we need to begin to have conversations about our mortality while we are still healthy…

Human beings both affirm and deny their mortality in the same breath.  In most religions, the daily liturgy contains references to death, often in relationship to resurrection in some future time.  While we say these words, we do not heed what the message is behind those words.  In a talk I gave to clergy about end of life care advocacy, I noted that as clergy, we are challenged with teaching people about our liturgy and what it means.  The problem is, if we ourselves don’t accept the inevitability of death, how can we possibly teach it to others. 

Their is much literature regarding the denial of death being something ingrained in each of us.  It can take years of meditative and contemplative practice to be able to sustain the thought of our own demise for more than mere seconds. 

I believe that the greatest gift we can give to our loved ones is letting them know what our wishes are as to how we want our bodies treated as we near the end of our life. Each person’s wishes are unique, so we need to tell those who love and care about us what our wishes are while we are still healthy. Conversations need to happen before we are wheeled into the ER, when it is too late to have “those” conversations.

Keep in mind that a conversation like this is not something that can be done randomly.  I do think that good communication within one’s family would be quite helpful, but while we often say things on the spur of the moment, it is important that families carve aside time once in a while to not only discuss end of life wishes, but to also make certain that those wishes haven’t changed (which they often do when a person or his/her loved one is in the moment as opposed to when they were talking in a more abstract context).  This is true regardless of one’s cultural and religious dictates regarding medical ethics, for in most families, there is not a single system of thought that runs throughout.  Families are diverse and as such, a religious child might not be comfortable with the wishes of a parent who is not religious.  Or parent and child have different rabbis or religious leaders who advise differently.  All of these situations should be discussed openly and honestly.  We are challenged with this task because death could come at any time and we must always make sure our families are prepared. 

She concludes with the aims for her column:

I will be using this column to educate people so that we can have end of life discussions while we are still healthy. I will include theological and sociological as well as biblical ways to look at and talk about sickness and end of life issues. I will also include various “hot button issues” such as the use or withdrawal of artificial nutrition and hydration, euthanasia and physician aid in dying. Further, I will write about the dying process, “do not resuscitate” orders, use of pain medications, reasons to have a completed health care proxy form and other topics that will hopefully spur you to confront your own fears and concerns about dying and death, so that you will feel more comfortable talking about these issues. My hope is that after you read my posting, you will be able to use it to open the door to conversations with your loved ones about what you would want done with your body as you approach the end of your life.

I look forward to your comments on my postings and hope that we can engage in a meaningful dialogue around our own “denial of death.”

(cross posted here)