Meditation – RECONSTRUCTING THE CHANGING FACE OF DEATH, Part 2

RECONSTRUCTING THE CHANGING FACE OF DEATH, Part 2
— Charles Corr

Humans strive to influence or control nature and the natural patterns of events around them.

Another prominent chance in our mortality patterns has to do with the location or place of death. By 1949 approximately 50% of the deaths in the United States took place in an institution. By 1958 institutionalized deaths had risen to just over 60%. Now, 70-80 percent of deaths in our society occur in an institutional setting.

Locating death in institutions is a major social change from those times when death ordinarily occurred at home. It means that death is removed in one more way from the midst of our lives. This tend to segregate death from the rest of society. As a result, individuals in our society are now much more likely to die alone, in unfamiliar surroundings, or amongst strangers than they are to die at home in the company of those they love.

This has important and often negative implications for the way dying will be experienced, for survivors, and for the institutions into which death is increasingly thrust, especially if many of those institutions view themselves as “health centers”. In such institutions dying is very likely to be regarded as an unhealthy or undesirable thing to do.

Whereas death has become less erratic and mysterious, more predictable and understandable at the objective level, it is also increasingly an experience that has grown apart from the mainstream of every day life.

Death has become less natural and familiar to us and thus increasingly appears to be less appropriate as a part of a person’s lot in life.

The more the natural death of human beings becomes a less familiar part of our lives, death achieves a startling prominence as an insubstantial fantasy in the mass media and popular culture. Death is staple fare of popular entertainment fantasies. A perverse feature of the cowboy, police, medical and adventure stories depicted on television and in the movies.

We are bombarded with images of death that are apart from and inconsistent with the realities of life. This leads to an even more distorted image of death.

“Tamed death” Life and death were close companions. Death was both familiar and near, a customary fact of human destiny. Tame death was often sad and painful, but it did not appear to threaten the regular order of life’s events as death often does at present.

“Decent Interval” of dying gave the individual and opportunity to assemble family, set important affairs in order, dispose of property, and “prepare to meet the Maker”. The cult of the ars moriendi the “art of dying” encouraged calmness, solemnity, and a sense of awe. Death could be a high point of life. Death is a culmination in which the individual is a full and often dominant participant, and it results in a loss that is not without its consolations for one’s survivors.

“Break with life” or rapture frightening yet obsessive. What was once ordinary or even banal turned into an object of morbid attention.

“Forbidden Death” shameful and prohibited. A pair of misconceived ingredient: depriving the individual of the truth about death’s imminence and the misplacing of the burden on someone other than the dying. All dependent upon an increasingly negative attitude toward death and its implications.

We know in a abstract intellectual way that death is a general fact of life, but the specific event becomes so unusual that it is regarded as quite unreal.

Socialization process mirrors attitudes. death becomes less and less frequent part of our life. False sense of security grows in its fading presence. Death not really a legitimate part of life, regarded as unfortunate, undesirable, and even improper. Increasing distance coupled with decreasing frequency

Responsibility for the sick, elderly, dying and the dead given to select set of institutions and professional functionaries.

Like all disgusting subjects, death can only be introduced into polite conversation obliquely or euphemistically.

A dying person become a “patient” a revealing label– passively enduring, waiting calmly and undergoing care, receiving treatment from another.

the mobilization of a wide range of equipment technical skills and other resources to combat illness and death.

A narrow range of attitudes dictate the perspective of how individuals ought feel, behave and what society will tolerate.

Part 1 HERE!

What waiting for death has taught me

By — Bill Tammeus

I’ve been here in soft, green New England learning patience and waiting for death.

Not my death, but that of my wife’s sister, who early this year entered her fourth year of living with the dark and vicious stranger called ovarian cancer. It is cellular evil, a parasitic wanderer that will invade more than 22,000 women this year, while killing more than 15,000 previously diagnosed women, including Leslie. Worse, the American Cancer Society reports that the mortality rate for ovarian cancer has not improved in 40 years.

No one expected Leslie to last this long after — several weeks ago — her excellent oncologist abandoned the idea of dreaming up exotic defenses and sent her home to await the inevitable.

But three weeks after my wife flew up here to be with her and most of a week after I joined her, Leslie continues to be in a hospital bed in her home and to be tended to by family, by visiting nurses and by hospice workers.

When her eyes are open, I can see in them resignation, then her usual mirth and then what sometimes looks to me like terror. I don’t really know if it is terror, however. Leslie hardly speaks any more, and when she did speak, I heard no terror in her tone or words. So maybe I’m simply imagining it. Maybe the terror is in me as I look at her frail, jaundiced body.

What I am not imagining, however — what, in fact, is brutally clear to me — is that death arrives not on our schedule, but on its own. It will not be hurried, this thief, and yet neither will it be delayed by our hopes, our longings, all our spoken and unspoken prayers and dreams and demands tossed at God.

Death came for my nephew in a luminous flash of vindictive explosiveness the morning of Sept. 11, 2001, as he occupied seat 20-J of American Airlines Flight 11 from Boston to Los Angeles, with a permanent detour to the World Trade Center in New York.

No one was prepared for that. No one wanted death then.

No one was prepared for the death of Leslie’s own mother when Janet was just 47, either. But a cerebral hemorrhage brought her down in a matter of a few blindingly astonishing hours. So when Leslie turned 47, she could hardly wait to be 48 and not repeat her mother’s terrible fate.

Now, by contrast, every member of Leslie’s big family has become accommodated to death’s impending arrival. So we simply wait by her bedside or feed ourselves or work in the yard or tend to Leslie’s two infant grandchildren, Evie and Jack, or read or take walks or check our email or pray or hug each other.

And yet death keeps its own stealthy schedule, so the homily I’ve prepared at Leslie’s request to give at her funeral remains unspoken.

And our lives tread water.

But who are we to imagine that we are in charge of the large questions of life? Suicide or murder aside, we have no say in when death arrives just as we have no say in who will love us or when it will rain.

It is only our foolish arrogance that lets us think otherwise.

So, in the end, we have a choice. We can continue to pretend we control life’s major turnings or we can trust, with Julian of Norwich, that in the end, “all shall be well, and all shall be well and all manner of things shall be well,” because we trust in a God who wants the best for us.

My head knows all that. But my heart rebels, wanting what I imagine is best for Leslie to happen now and not later.

* * *

Author’s note: Leslie died the evening of July 9. And we are impoverished by her absence.

Complete Article HERE!

A DNR Tattoo? Really? Great Teaching Image for Geriatrics or Palliative Care

by: Alex Smith

Perhaps you have said, or heard someone declare, “I want DNR tattooed across my chest!”

Well, someone actually had it done. See this image in JGIM of the tattoo and the unusual story behind it. In this case, the DNR tattoo was the result of a lost bet in a drinking game – bad idea jeans – the patient actually wanted to be full code!

In an accompanying editorial, Bernie Lo and I describe the problem with actually tattooing DNR across your chest. As we say, the idea is intuitively appealing, but flawed as policy.

This could be used a teaching image about respecting individuals’ rights to avoid resuscitation. The idea is to provoke a thoughtful discussion. Questions for trainees could include:

  • What is behind the idea of the DNR tattoo? Why would someone say that, or do it?
  • Imagine you are seeing a new patient who arrests in front of you. Preparing to do CPR you see a DNR tattoo on the chest. How do you respond? Why? Should DNR tattoos be respected?
  • What can we do to protect the interests of people who really do not want to be resuscitated?
  • Should we as a society put greater ironclad protections in place for people to irrevocably fix their code status at DNR? What are the risks? What if someone codes from anaphylaxis? Chokes on some food in front of you?
  • What do you think about allowing leeway or flexibility in decision making? In all cases? Giving the surrogate leeway? The clinician? Do the advance directive forms or POLSTs you use allow for leeway? Should they?
  • What do you think about Ulysses contracts? (Then Ulysses said, “Eurylochus, come quickly! Tie me to the mast, for I shall hear the Sirens song and live!”). Caringadvocates offers such documents (run by frequent GeriPal commenter Stan Turman). Example: do not give me food or water when I have advanced dementia, no matter what I say or do.

Feel free to share your teaching experiences in the comments. I think the geriatrics and palliative care communities really appreciated the discussion about how to use this video from a previous post as a teaching tool.

Complete Article HERE!

Mediation – Death vs Dying

— Nancy Meredith, November 1987

Death vs Dying
It’s not as if they are the same thing. Dying is still warm, still connected to life as we know it. Death is cold. Dying is letting go. Death is being gone. Death is something I don’t know anything about, except that embalmed bodies are poor representations of the people who once animated them. Neither is anything I like to think about. So I figure they are probably topics I should give some attention to, to try to write some of the feelings they engender.

If I Should Die Before I Wake
It was only recently that I realized how early I had lay me down to sleep. I began very late in life the struggle to wake up from the soft comfort of my habits and routines. It’s hard getting up out of a warm bed when you don’t know what the weather’s like outside.

Coming to Terms with Mortality
Thinking about my own death feels different from thinking about someone else’s, but both feel lonely. Both bring on a panicky “No! Not yet!” When I’m confronted with the death of someone who has touched my life, the feeling is that I should have done more, that there is unfinished business here. Guilt confused with feeling that we don’t always get dealt a fair hand.It’s easier to die symbolically than to be symbolically dead. I can imagine ways I mightdie, my reluctance to leave tempered with the need to comfort those I leave behind. There’s a bit of poignancy about it, bittersweet and loving. And I am still (somewhat) in control.But I have trouble going beyond dying to death. I am responsible for so much and so many right now. Who will do the work I’ll have left undone? Who will take care of the people I love and all the little things in my life to which I attach so much importance? Who will feed my cat? If I try this exercise long enough I sometimes experience a moment of clarity and a fresh perspective on what’s really important to do today, right now. But it’s never long before I tighten up with a renewed sense of urgency to do more, faster. When I notice reminders of my own mortality—a bleeding mole, tightness in my chest, recurring asthma—I inevitably resist. “No, not yet! I have too much to do!”

I don’t think I want to live forever. When I hear people speak of the immortality of the physical body as a viable option, I feel somewhat embarrassed, as I am by the part of the

Apostles’ Creed that avows belief in the resurrection of the body. My resistance to my own death seems to be not so much a reluctance to leave my body as an unwillingness to relinquish control. To trust that the people I love can get along without me very well.

Just Moving On
Dying must be a lot like moving from one place to another. I’ve said goodbye many times in my life. Life goes on—for me and for those I leave behind. But it feels lonely, especially at first, and the nostalgia for past lives never completely disappears.

A Taste of Humility
Raymond Kaiser observed that the bottom line about death is that sooner or later people are going to say “So what?” No matter how important you are in their lives right now, no matter how wonderful you are, they’re going to come to a place where they accept your


Mini-Deaths
absence and proceed with business as usual. Trying to experience how that feels is an exercise in humility. It defeats arrogance and renews trust in others and faith in the continuity of life.

Whenever I think of death—particularly my own—I feel lonely. On the other hand, all the dark, lonely times I create for myself are deaths of a kind. Whenever I allow myself to feel alone, detached from those around me, I am already, for a time, dead. I am saying No to life and embracing Not Life. Lately I’ve tried to bring the light of consciousness to these times, to experience them as mini-deaths, with the benefit of then being able to embrace life more fully. I emerge from the dark more sensitive to my connection with others in my life, more aware of their feelings, more caring about their needs. I am more present. Perhaps the value in practicing death is not so much to be able to die better, but to be able to live better.

Judgment
I don’t like death, and I cannot embrace it as “moving on to a better place.” I don’t like acknowledging its inevitability. I tremble before it. It constitutes, after all, a fall into the unknown. I recently signed up to be a Hospice volunteer. Maybe by helping others deal with imminent death—their own or that of someone they love—I can learn to look at death squarely and say, “So what?” but I don’t think I’ll ever like it.

Meditation — RECONSTRUCTING THE CHANGING FACE OF DEATH

RECONSTRUCTING THE CHANGING FACE OF DEATH
— Charles Corr

A large number of people are filled with great anxiety or discomfort at the mere mention of the term death. And yet death is, after all, one of the few common denominators that we all share.

Others report that they do not know what to think or feel about death, and that this perplexity makes them unsure about taking part in inquiries related to death.

Exceptions to these prohibitions against the study of death are sometimes granted to theologians or philosophers on the ground that their work focuses on the spiritual dimensions of death.

These conflicting viewpoints remind us of the limitations of our own experience and draw attention to the important role our own attitudes and personal concerns play in determining whether and how we will deal with projects concerning death.

Death is not a single, monolithic entity; it is a complex and many sided dimension of human experience.

I think it is helpful to start out, not with large-scale philosophical or religious theories of the ultimate meaning of death, but with a more proximate and prosaic examination of those experiences and attitudes that are related to death and encountered in our daily lives.

Death is present in the cycles of growth and decay that we witness in nature, in the pets and other animals we bury as children, in the cemeteries and funeral homes that we drive past, and in numerous aspects of our daily experience. Yet we lack a direct contact with natural human death. We are the first “death-free” society.”

People in our society are increasingly likely to be born, grow to maturity, have children of their own without ever witnessing the natural death of a close relative or friend. This situation is unique in contrast with the experiences of other peoples and or other times in the history of our country.

One more point to acknowledge explicitly is that the face of death, as we perceive it, is composed both of cognitive and affective elements.

Advance Directives are the beginning of care, not the end

Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

Complete Article HERE!

Talking with teens about death

Study finds that seriously ill young people want to discuss their care, wishes — Barbara Brotman

It is the hardest conversation a parent can imagine: talking to a critically ill child about the possibility of death.

But Deb Fuller, of Woodstock, wishes she had done it sooner.

By the time she and her husband broached the subject with their nearly 13-year-old daughter, Hope, her brain cancer was so advanced that she could barely speak.

Fuller asked Hope if she was afraid; if she was worried about how her parents and brother would cope when she was gone; if she was ready to go anyway.

Hope answered by squeezing her mother’s hand: Yes. Yes. And yes.

“That ended up being one of the best nights we had,” Fuller said. “We all sat around together to the wee hours of the morning and talked.

“But I waited too long. I thought we had more time,” she said.

Hope died within days.

“I wish she could have spoken to me,” she said. “I hate the thought that perhaps she laid there … and worried about it, unable to talk to me about it.”

End-of-life experts say that children should have the opportunity to discuss death in a developmentally appropriate way with a parent or a knowledgeable adult, though such conversations should not be forced.

And a recent study shows that many seriously ill children want to have that talk, and that both they and their parents are relieved afterward.

But parents often don’t know how to begin an end-of-life conversation with their children, said Maureen Lyon, associate research professor in pediatrics at Children’s National Medical Center in Washington and principal investigator at its Children’s Research Institute.

They are often afraid that talking about death will be harmful to the child, Lyon said. And by the time teenagers enter hospice or palliative care programs, which are adept at such conversations, the youths may be too ill to be able to talk or not want to at all.

But it can be a crucial conversation, Lyon said. Important decisions may have to be made, like whether to discontinue aggressive medical treatment or whether they would want to die at home or in a hospital.

Too often, no one — not even doctors — asks these questions of seriously ill teenagers themselves, she said. Without knowing their children’s wishes, families can be torn apart by conflict. And though youths under 18 have no legal standing to direct their medical care, Lyon said, their opinions should be heard.

She and Linda Briggs, associate director of the Respecting Choices program at Gunderson Health System in La Crosse, Wis., designed a way they can be.

They conducted a study in which they used facilitators to guide seriously ill young people and their families through conversations about end-of-life care — the same kind of conversations Respecting Choices offers to adults. At the end, the teens filled out advance directives outlining their wishes.

The study, which Lyon and Briggs presented at the annual conference of the International Society of Advance Care Planning and End of Life Care held recently in Rosemont, found that the youths wanted to be consulted, parents wanted to know their children’s thoughts and both teenagers and their families found the experience worthwhile.

Moreover, the conversations did not cause harm. The young people — who were between 14 and 21 and had either HIV or cancer — were no more anxious and depressed after they talked.

“The assumption is that these conversations will take away hope and raise anxiety. The reality is the opposite,” Briggs said.

Not that the conversations were entirely pain-free.

“The study was much harder on the teens with cancer,” Lyon said. A small percentage of those youths said they had found the talks hurtful. However, they also found them worthwhile. Lyon hypothesized that because they were more ill than the HIV-positive youths, the possibility of death was more real.

But Jessica Gaines, 22, who participated in the study as an 18-year-old who had been treated for Hodgkin lymphoma, said she was glad to be finally asked her opinion.

“When I was going through treatment, I was never asked, ‘Well, what happens if you don’t make it through?'” said Gaines, who lives outside Washington.

Parents were appreciative of the talks too. “I feel like a load was lifted,” one commented in a survey.

Some teens and families declined to participate. Hospices, too, find that not everyone wants to have such talks.

Jeremy Campus, 13, of the Northwest Side, is battling cancer that has recurred a third time. A patient at Hospice and Palliative Care of Northeastern Illinois, Jeremy is well aware of the gravity of his condition. His mother, Annmarie, has let him know that she is available to talk about anything, and his palliative care team is similarly open.

But when it comes to addressing the worst possibility, the quiet-voiced boy sitting at his family’s dining room table is clear.

“I don’t want to talk about it,” he said.

Some parents don’t want their children to talk about it.

“I was against, until the last breath of my son, for anybody to even to mention the word death to him,” said Alla Lyubyezny, of Buffalo Grove, whose son, Max Stine, died of brain cancer five years ago. He was 17 and a patient at Horizon Hospice and Palliative Care.

She didn’t want Max to lose hope, and considered it her duty to protect him from the pain of confronting death.

“Nobody needs to have this information, and to live their last, the month of time that is left to them, with that,” she said. “There are some subjects that are best left alone.”

But children generally know how sick they are, said Jennifer Misasi, head of Horizon’s pediatric program. They sometimes avoid talking about it to protect their parents, she said.

And there is no evidence that talking about impending death in a sensitive and appropriate way takes away children’s or parents’ hope or leaves them devastated, said Dr. David Steinhorn, medical director of the palliative care program at Chicago’s Lurie Children’s Hospital.

“Parents who have the opportunity to have frank conversations in a supportive, open way actually do much better and have fewer regrets when their child is dead than parents who do not talk about it,” he said.

“We’re not saying this should be imposed on anybody,” Lyon said. “But for those teens that want to have a voice, this works.”

“This isn’t about ‘Do you want CPR, yes or no,'” Briggs said. “It’s having them express their goals and values.

“How would you want your mom to make decisions for you? What would you want your mom to know about what kind of life makes sense to you, and what kind of life doesn’t make sense to you?”

Complete Article HERE!