The use of humor in Medicine

In a recent article in the Hastings Center Report, Katie Watson presents a discussion she calls “Gallows Humor in Medicine.”  The concept of laughter in the face of challenging situations is one we often face in Hospice work.  And we laugh and find humor in our work, often as a means of coping with the harsh realities of life.  Yet, her discussion tries to look at the subject through the eyes of whether it is ethically problematic to express humor in the face of other’s trauma.  The biggest insight I found in the entire article is that humor in the medical profession is actually decreasing.  She points out that residents don’t play as many tricks on fellow residents using cadavers, and as with other places, hazing is down as well.  For many, these trends are not positive, to which I would agree.  It is true that we shouldn’t laugh at all problems and traumas, but it is important to, at least internally, have some levity in the face of the sadness.  I have quoted for you the introduction and conclusions of her piece. 

It was 3:00 am and three tired emergency room residents were wondering why the pizza they’d ordered hadn’t come yet. A nurse interrupted their pizza complaints with a shout: “GSW Trauma One—no pulse, no blood pressure.”

The residents rushed to meet the gurney and immediately recognized the unconscious shooting victim: he was the teenage delivery boy from their favorite all-night restaurant, and he’d been mugged bringing their dinner.

That made them work even harder. A surgeon cracked the kid’s rib cage and exposed his heart, but the bullet had torn it open and they couldn’t even stabilize him for the OR. After forty minutes of resuscitation they called it: time of death, 4:00 a.m.

The young doctors shuffled into the temporarily empty waiting area. They sat in silence. Then David said what all three were thinking.

“What happened to our pizza?”

Joe found their pizza box where the delivery boy dropped it before he ran from his attackers. It was face up, a few steps away from the ER’s sliding doors. Joe set it on the table. They stared at it. Then one of the residents made a joke.

“How much you think we ought to tip him?”

The residents laughed. Then they ate the pizza.

 

David told me this story fifteen years after he finished his residency, but the urgency with which he told it made it seem like it happened last night. “You’re the ethicist,” he said. “Was it wrong to make a joke?”

Gallows humor is humor that treats serious, frightening, or painful subject matter in a light or satirical way. Joking about death fits the term most literally, but making fun of life-threatening, disastrous, or terrifying situations fits the category as well. There is a fair amount of literature on humor in medicine generally, most of which is focused on humor in clinician-patient interactions or humor’s benefit to patients.1 There is relatively little specifically addressing the topic of this article: gallows humor in medicine, which usually occurs in interactions between health care providers.

Gallows humor is not a feel-good, Patch Adams kind of humor, but it is not synonymous with all cruel humor, either. As one physician put it, the difference between gallows humor and derogatory humor is like “the difference between whistling as you go through the graveyard and kicking over the gravestones.”2 Many health care providers witness or participate in gallows humor at some point. After reviewing over forty medical memoirs, Suzanne Poirier reports that “Anger and gallows humor are generally accepted forms of expression among undergraduate and graduate medical students . . . but expressions of serious self-doubt or grief are usually kept private or shared with only a trusted few.”3

David’s question intrigued me as a bioethicist because it is about moral distress, power imbalances between doctors and patients, and good people making surprising choices. But it also piqued my interest as someone who enjoys joking around—when not teaching bioethics, I teach improv and sketch writing at Second City, where I’m an adjunct faculty member. But David didn’t ask me if the tip joke was funny. He asked about it in ethics’ normative terms of right and wrong.

In this article, I consider whether some joking between medical professionals is actually unethical. The claim that being a physician is so difficult that “anything goes” backstage misuses the concept of coping as cover for cruelty, or as an excuse for not addressing maladaptive responses to pain. However, blanket dismissals of gallows humor as unprofessional misunderstand or undervalue the psychological, social, cognitive, and linguistic ways that joking and laughing work. Physicians deserve a more nuanced analysis of intent and impact in discussions of when gallows humor should be discouraged or condemned in the medical workplace. They also deserve deeper consideration of physician health than the professionalism lens might provide. Surely we can advocate for the humanity of patients without denying the humanity of those who treat them…

One of medical training’s first requirements is the violation of strong cultural taboos around death and dead bodies. Dissecting corpses has generated “cadaver antics” that many older physicians recall fondly—making jokes, clowning around with body parts, and pulling pranks to scare labmates. Joking like this helps turn corpses into cadavers by framing bodies as objects. Until recently, cadaver antics were a rite of passage, initiation, and enculturation into an ethos that said a doctor is a tough person who can laugh at death. Not just not cry about death. Laugh. Today cadaver antics are rarely tolerated, and the modern approach frames cadavers as former people. Students are commonly asked to imagine lives lived before these bodies died, and to journal or discuss their emotional reactions in small groups.26 Many classes end with a memorial service students create to thank the people they have dissected for donating their bodies, and sometimes they even meet the donor’s family members.27 The concept of performativity is helpful here: how must a person change the way she or he looks, acts, and feels to both perform the social role of doctor and to be recognized as one? The modern approach to anatomy lab represents a dramatic shift away from a macho joke-about-death performance of the role of doctor, and toward compassion and connection as being performative elements that help define the role of doctor.

The medical workplace may be changing, too. I’ve heard older physicians lament that the workplace is not as funny as it used to be, that practicing physicians do not joke around together like they used to. If that’s true, perhaps one reason is that the easy in-group joking they remember was based not just on being physicians, but on the broader bond of being straight white male physicians. The increasing diversification of medicine narrows the meaning of “it’s just us” to what’s truly distinctive about providing health care, versus simple differences in physician and patient demographics. It’s also possible that the dramatic increase in women physicians has unique effects on gallows humor. It’s a generalization rife with individual exceptions, but if there are differences in stereotypically male and female forms of humor, it stands to reason that the increased presence of women might cause a cultural shift in when and how backstage gallows humor is used in the workplace. This gender shift may also have made coping mechanisms that substitute for joking about fear and sadness (like verbal expressions of these emotions) more acceptable in the medical workplace.

I applaud the cadaver lab changes, and I strongly support the backstage changes that make a diverse workforce welcome. I also support efforts to define what I think of as HOG talk (“House of God talk”) as unprofessional because shallow bullying and derogatory slang coarsen the moral enterprise of medicine and cut providers off from healthier means of coping.

Yet in some areas, perhaps the hand wringing has gone too far. Condemnation of gallows humor is sometimes premised on a category mistake (such as lumping it together with all making fun of patients28) or a double standard. For example, an article titled “Humor in the Physician-Patient Encounter” contrasts a short treatment of “Destructive Gallows Humor” between providers, which frames all gallows humor as “‘sick’ wit and hurtful humor used to separate providers from patients,” with a long treatment of “Therapeutic Humor” between providers and patients, which is “grounded on a recognition of the human condition that is shared by patient and provider.”29 What the article fails to acknowledge is the human condition that is shared by provider and provider. Critics of backstage gallows humor who are admirably concerned with empathy for patients sometimes seem curiously devoid of empathy for physicians. Medicine is an odd profession, in which we ask ordinary people to act as if feces and vomit do not smell, unusual bodies are not at all remarkable, and death is not frightening. Moments when health care providers suddenly see the enormous gulf they’re straddling between medical and lay culture are one source of gallows humor. Being off-balance can make us laugh, and sometimes laughing is what keeps us from falling over.

Empathy for clinicians does not mean anything goes; it means clinicians must be conceptualized as human beings rather than as robotic systems for care delivery. Laughing and caring for others are both sources of joy. Suggesting physicians can only enjoy one of these pleasures in certain circumstances costs them something, and therefore deserves thoughtful justification.

Should They Joke?

Insights from the humanities and social sciences supply the context required to fully analyze David’s ethics question: Was it wrong to make the tip joke? When is behind-the-scenes gallows humor okay, and when should it cause concern? Underlying all this, the ethics question may be, “When is joking a form of abuse?”—abuse of a patient, abuse of trust, or abuse of power.

To answer, I would first want to think about who is harmed by the joking.30

 

  • Within the text of the joke, who or what is the true target? Does close reading reveal it to be a defenseless patient? Or is the joke really aimed at a doctor who is defenseless against death, decay, and chronic illness?
  • Could the joke harm the way future care is delivered? By using the power of humor to frame the patient in a way the patient cannot challenge, could the backstage joke bias listeners’ future interactions with that particular patient? Does the repetition of stereotyping jokes about “patients like these” contribute to making the health care provider calloused toward a particular demographic?
  • Could the joke harm the profession by diverting anger caused by structural problems (like caseloads so high that patients feel like the enemy, or scheduling that results in chronic sleep deprivation) and releasing it on the easy punching bag of patients rather than using it to make productive changes?
  • Who is listening to the joke? Gallows humor that seems ethical backstage can become unethical in front of patients, families, or others because it has the potential to harm them directly.

 

Next, I would want to ask about the health care provider’s relationship to the joking.

 

  • What’s the clinician’s underlying intent in joking? Is gallows humor being used as a helpful defense mechanism when circumstances limit the options for processing something difficult? Is the intent to get through the day by trying to lighten an oppressive situation, or is the intent to be a jolly bully?
  • What impact might this joking have on the clinician? Is it the type of joking that helps clinicians open up to difficult experiences or frees them from intolerable burdens? Or is it the type of joking that cuts clinicians off from experiences or patients that healthy clinicians should be able to engage with?
  • How often does the health care provider joke like this? If a doctor is joking about patients and death constantly, then (even if each can be justified individually) does she need help expanding her range of coping mechanisms? Or is this joking part of an ongoing pattern (say, of objectifying vulnerable patients) that suggests deeper provider biases?

 

David and his colleagues scattered across the country after residency, but in the fifteen years that passed before he told me the tip joke, they talked about the night the delivery boy died several times. The whole thing made them sad for years, he said. “Wasn’t that terrible?” they’d ask each other on the phone. “How could we eat the food that poor kid dropped?”

In the process of trying to do good, did they become bad? I do not think so.

To me, the butt of the doctors’ tip joke is not the patient. It’s death. The residents fought death with all they had, and death won. Patient care was not harmed—the patient in this case had received the best medical care they could deliver, and he was dead. It’s hard to imagine the joke hardening these residents toward a type of patient he represents (delivery personnel?) in the future. The neighborhood’s staggering rates of crime and poverty might represent an external obstacle upsetting the residents, but residents are usually powerless to alter that type of structural factor.

I think the motivation for telling the joke was to integrate this terrible event and get through the shift. This teenager lost his life bringing these young doctors dinner. “How much you think we ought to tip him?” is a macabre summary of all that’s owed in this world and all that can never be repaid. And it looks forward—it’s a moving-on question. In a situation that horrific and absurd, a joke is the rock you throw after the bad guy’s already gone—an admission of loss, and a promise to fight again another day.

It’s important that the tip joke was told in an empty area with no family, friends, or other patients who could be harmed by overhearing. I’m usually a fan of sunshine tests and total disclosure, so I find the idea of secrecy as an ethical plus startling. But when a compassionate professional gets overwhelmed, gallows humor may be a psychic survival instinct, and that’s why it is not an abuse of patient trust when it’s done backstage and for the right reasons. Something that looks maleficent toward one patient may actually be an act of beneficence toward the patients who will come next. So yes—if the delivery boy were my son and I heard the joke, I would want to tear their eyes out. But if I was the person in the next ambulance, hurtling toward their emergency room after my car wreck, my heart attack, my rape, I’d be glad they made that joke. Because they needed to laugh before they could eat, and they needed to eat to be at their best when it was my turn.

David is a brilliant, compassionate physician who will serve patients his whole life, so I told him two things about the tip joke: I’m glad he did what he needed to do to treat every patient he’d see that night. And I’m glad it still bothers him. Because it’s good to carry that tension that tells you when you’re on thin ice. When a terrible joke is the only bridge between horror and necessity, gallows humor can be a show of respect for the work that lies ahead. So tell your jokes. Tell them somewhere I cannot hear. Then treat me well when we’re together.

For those interested, the article is free if you register with the website.  They have free limited access to certain articles.

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.

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.”

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)

The price of not talking about death

The most common myth about dying is that if we don’t talk about, it won’t happen to us.  We are all aware that everyone dies.  Nobody is immune from life.  As such, while we should not spend every waking moment waiting for death to arrive, we need to set aside time to consider how we want the end to look like, partially for our own spiritual practices, as well as the for the practical needs of one’s family.  The person dying often has less worries and fears than the surviving, especially the primary care providers, who feel that all their efforts are in vein.  The price of not talking about death describes the challenges that occur when people don’t talk about death. 

In the movies, people often die in some quick, dramatic way. There are bullets, train wrecks, serial killers, monsters, or, at least, exotic illnesses. If they die quietly, they almost always leave with a memorably pithy comment.

Many of us don’t know much more than that about death until it comes to live in our own house. Friends may lose family members, but they rarely talk about the uglier aspects of dying. We all conspire to protect one another – and perhaps our loved ones’ dignity – from the smells, sounds, and suffering that accompany the slow shutdown of vital organs. Why think about that until you absolutely have to?

But our reluctance to talk about the mechanics of decline and caregiving comes at a price. Ignorance can make first-time caregiving more frightening and disturbing.

“It would be a lot easier if we didn’t hide death, if we didn’t medicalize death, if there was a general acceptance and recognition of mortality,” said Lydia Dugdale, a Yale University doctor who wrote an essay on the “art of dying well” for The Hastings Center Report in December. She says bioethicists should “create a framework for teaching an aging population to prepare for death and to support one another through the dying process.” (I recommend reading her article for she presents a very eye opening look at the history of death, using the bubonic plague as a foil for the difference between our times and the rest of human history)

The rest of the article provides an overview of the dying process.  While everyone dies differently, there tend to be common signs.  If we become familiar with those signs before becoming caregivers, we will be better prepared for the randomness and feelings of lack of control that inevitably occur when someone we know is dying.

(crosspost at Stein Hospice blog)

Kenneth J. Doka, M.Div., Ph.D.: Helping Children Spiritually Cope with Dying and Death

Kenneth J. Doka, M.Div., Ph.D.: Helping Children Spiritually Cope with Dying and Death.

I recently had an opportunity to teach a Hebrew school class of 12 yr old children about death and Hospice.  I was amazed at how much these children knew about those two subjects.  Many of them had a grandparent or older relative cared for by a Hospice.  We discussed aspects of spirituality in relationship to death, including near death experiences and how the Bible looks at life and death.  In the piece I am linking to, Doka discusses how younger children can have a concept of death and how we should teach children about life.

As children encounter illness, loss and grief — whether their own or someone close to them — they seek to understand those events and to make sense of their experiences. This inevitably is a spiritual process as they turn to their beliefs, faith narratives, rituals and practices. They may not yet have the cognitive capacity to reach conclusions, yet they yearn for an explanation of events that are sometimes difficult, if not impossible, for even adults to answer. Their questions may show innocence and naiveté. For example, when her maternal grandmother died, my 3-year-old granddaughter took comfort from the belief that even though her grandmother was no longer physically present on earth, she would watch over her from heaven. However, this led to a very practical concern: Would her grandmother be able to see her on the toilet — a potent issue as she was becoming toilet trained? We reassured her that her Grandma would not look at her in these very private moments.

Children as young as 2 or 3 years old are trying to make sense of their world, and inevitably they are encountering their spirituality. Illness, grief and loss are often part of their worlds as well, so their spiritual development helps shape how they grapple with issues for which they want a concrete explanation. Often it is these questions — Why did grandma have to die? Why is there illness? What happens to you after you die? — that spur a child’s interest in spiritual questions and explanations…

Everyone has some set of spiritual beliefs even if they do not accept theism, or the practice of incorporating a belief in a higher power or God. It is important to share those spiritual beliefs with your child as well. For example, a parent might not believe in heaven, reincarnation or any form of afterlife, but that parent may still take comfort in the memories that he or she has of a person or find solace in a sense of pride based in the legacy of a deceased individual. Such memories and legacies can be remembered and celebrated.

It is also important to take care in presenting romantic explanations rooted in spirituality to a child, because children often interpret such stories literally. I once counseled a 7-year old boy who was acting out after the death of his friend — a death due to a car accident that this boy witnessed. He had been told that his friend was good and that God wanted him to be angel in heaven. This surviving child wanted to make it clear to the Deity that he would not be good material for any prospective angel. The romantic stories we may weave may do more harm than good. It is best to simply and honestly share your own spirituality with a questioning child.

Young children can have a concept of death, even if they don’t fully understand its permanence at such a young age.  We do a service to their intellectual and spiritual growth by not hiding this part of life from them.  Keep in mind that even if we don’t talk to kids, death is all around.  Between hearing about celebrity deaths and reading the stories in the Bible, which include death, it is something that can’t be avoided.  At the same time, we must learn how to be honest about death and dying in a way that doesn’t create falsities or situations as described in the last paragraph quoted above.  I find a good resource to be When Families Grieve, a video put out by Sesame Street.

(cross post at Stein Hospice blog)

Grief from a Mussar Perspective

In the March e-letter from the Mussar Institute, Alan Morinis writes about grief and despair.  I want to share some of his thoughts (Mussar Institute – Through a Mussar Lens).

As much as we may be tempted to do so, we’re not supposed to seek distraction during shiva because our task at that time is to grieve, and grieving requires that we open up to our sadness.

Shiva, as with all Jewish rituals, is also an opportunity for spiritual practice.  While this is a practice one should not seek to experience, the need to grieve and experience sadness is the crux of Shiva.  Shiva is a time of reflection, not just personally but also communally, and laughter and happiness can be experienced through the lense of sadness of loss.  If you will, the happiness of shiva is the happiness within sadness ala the sefirotic intermingling fo sefirot i.e. Hesed shel Gevurah… 

… A broken heart will not kill us. In fact, we’re taught that a broken heart is a valuable thing.“The sacrifices HaShem desires are a broken spirit; a heart broken and humbled, O HaShem, You will not despise” (Psalms 51:19).

That is not to say that God wants us to be broken-hearted, but that in our times of sadness, it is spiritually beneficial and desirable to allow the heart to break and the tears to flow. We are encouraged to do this from the depths of our hearts. Or, to put it another way, we are taught here that being stoical is not a positive spiritual value in Judaism. When it is time for the heart to break, it is meant to be broken.

Allowing the heart to break is a surrender of will and ego. We try so hard to control our lives and, indeed, in many situations that is ideal. But the process of grieving is not helped along by asserting will over feeling. Giving ourselves over to grief is an act of courage in the face of the strong emotions that arise from loss. Opening wide the gates of tears means not being intimidated by the strength of those feelings. It means recognizing that they are part of the fabric of life, dark threads perhaps, but not contrary to life itself…

When we surrender the heart to its grief, we are being true to love and life. There is a limit, though. Despair is an extreme form of grief that does not bring about healing. Rabbi Yitzchok Hutner (1906-1980, late Rosh Yeshiva of Yeshiva Chaim Berlin in Brooklyn and a student of Slabodka Mussar) clarified the difference between sadness and despair. “Despair,” he said, “is being tired of living.” It’s a hopeless state, and that can’t be an attitude we would be encouraged to embrace on a journey of ascent. Right in the Torah, God says, “I place before you life and death, blessing and curse. Choose life.” (Deuteronomy/Devarim 30:15). To accept despair is to make the opposite choice. No matter how grim a situation that comes upon us in life, the spiritual challenge is to believe in life, to make that choice, and to hope, even as we cry.

 Grieving is a process of letting go of self and allowing one to be overwhelmed by sadness.  Yet, as a process, on some level Judaism makes it time bound to the periods of mourning as prescribed.  This does not prevent from experiencing grief outside the shiva or sheloshim, etc. but it does give one a potential formula for the process of grieving.  The use of this time for the spiritual practice of being broken-hearted and sad must be time bound as a means of framing the periods for practice.  A practice unchecked could be more dangerous than good. 

Here we come to a couple of Mussar practices that show us ways to sow seeds of life even while experiencing the deep pain of a broken heart.

The story is told about the mother of Rav Simcha Zissel Ziv, the Alter of Kelm. The Alter’s mother was renowned for her piety and scholarship. One of her practices was to pass among the crowd at a funeral to collect charity for poor people. When her own small daughter died, she did not change her custom and circled among the assembled during the funeral with her tzedakah box, saying, “Just because I myself am mourning, do the poor of the town have to suffer?”

The custom of giving charity while mourning is well established. The Talmud tells us (Bava Batra 10a) that tzedakah is stronger than death itself and, in that sense, overcomes the loss of death. Non-monetary giving can fit the same bill, if mourners contribute time and effort to helpful causes.

Giving for the sake of others is a “sowing of seeds” that lifts a person out of their sense of isolation and personal loss, bridging the gap from isolated self to another. It’s perhaps with a similar thought in mind that a mourner is not permitted to say kaddish alone, but only with a minyan of at least ten.

Another practice was given to me by my Mussar teacher, Rabbi Yechiel Yitzchok Perr. He once told me that at funerals, he thinks about the person who has passed away and reviews that person’s qualities, seeking to identify a trait in which that person was stronger than he is. Perhaps he sees that the person was more committed to performing chesed (loving-kindness) or patience or generosity stronger than him. It could be anything like that, and surely everyone has at least one such admirable quality. Rabbi Perr then commits to practicing that middah in order to strengthen it in himself. In that way, he honors the memory of the departed in a very concrete way that actually keeps that quality alive in the world. You could say that a part of the person has not died but lives on, now embodied in the person who has undertaken to honor him or her in that way.

Rabbi Eliyahu de Vidas writes in Reshit Chochmah that love is the merger of two nefesh-souls. Loss, then, is a tearing apart of that merged soul, and so the pain is very real. Grief is healing. So, too, are constructive actions taken to connect self to other, even amid the tears. 

The primary lesson from here is that grieving and sadness is a sign of living and experiencing.  While the practices might be challenging when one is a mourner, it is nevertheless of benefit.  The key here is that we should practice before we ourselves face the tragedy that is loss for if we become accustomed to an action, we might find a sense of nechama in that same action when we are grieving.  Grieving is not a time to shut the world out but it is a time to feel the pain and to begin reframing that now broken heart into one’s life.

crossposted at http://steinhospice.blogspot.com/