Why We Need to Talk Openly About Death
By Wendy Uhlmann
Newsweek
http://www.newsweek.com/id/
It happens to everyone, yet we rarely discuss it. Even before we experience it ourselves, relatives and close friends will. Gender, race, religion, sexual orientation, political preferences, profession, income are irrelevant. Bottom line: we all die. And yet, we have a hard time talking about death and dying. And when we do, there is discomfort and difficulty speaking about this topic. We are a death-denying culture and by not being open about death and dying, we leave ourselves unprepared to face other deaths and, ultimately, our own.
Just as we teach children to say "please" and "thank you," we should teach words of comfort to acknowledge death. Simply recognizing that a death has occurred and saying the words "my condolences" or "I'm sorry or sad about your loss," would be a start. For me, just hearing these simple words felt comforting and supportive. In my work as a genetic counselor, I'm accustomed to using these words when speaking not only about deaths, but other losses, as well, including miscarriages, stillbirths and loss of physical abilities. Someone who has experienced a loss will not be "fine" for a while, and it's important to repeat these comforting words over time. We should recognize that grief does not end, but begins, with the funeral or memorial service.
As adults we have the ultimate homework assignment, one that we must complete before an unwavering deadline (emphasis on "dead"). Our assignment is to talk openly about death and put together a folder with our wishes in terms of health care at the end of life, who to notify after death, instructions for what should happen with our body, bibliographical information for the obituary, desired charities, finances, where important information can be found, and thoughts on a memorial service or funeral.
This information is a gift you can give to the people who will have to grieve and cope with loss while sorting through complicated logistical details in a short time frame. Often, after a death, there's no one to ask for key pieces of information, leaving relatives to search through files or old address books. Having frank discussions about both the physical process of dying, and the logistical arrangements will make death more a natural part of life. Becoming a death-acknowledging culture, rather than remaining a death-denying culture, may make that ultimate life lesson less difficult.
The Long Goodbye
By Meghan O’Rourke
Slate
http://www.slate.com/id/
Grief is common, as Hamlet's mother Gertrude brusquely reminds him. We know it exists in our midst. But I am suddenly aware of how difficult it is for us to confront it. And to the degree that we do want to confront it, we do so in the form of self-help: We want to heal our grief. We want to achieve an emotional recovery. We want our grief to be teleological, and we've assigned it five tidy stages: denial, anger, bargaining, depression, and acceptance. Yet as we've come to frame grief as a psychological process, we've also made it more private. Many Americans don't mourn in public anymore—we don't wear black, we don't beat our chests and wail. We may—I have done it—weep and rail privately, in the middle of the night. But we don't have the rituals of public mourning around which the individual experience of grief were once constellated.
Hamlet is the best description of grief I've read because it dramatizes grief rather than merely describing it. Grief, Shakespeare understands, is a social experience. It's not just that Hamlet is sad; it's that everyone around him is unnerved by his grief. And Shakespeare doesn't flinch from that truth. He captures the way that people act as if sadness is bizarre when it is all too explainable.
believe in the importance of individuality, but in the midst of grief I also find myself wanting connection—wanting to be reminded that the sadness I feel is not just mine but ours.
I also want to find a way not to resent my suffering (though I do). It is hard to know what that way is, outside of the ethical framework of religion. Last fall, I copied out a passage from an interview with author Marilynne Robinson in an issue of the Paris Review. She is one of my favorite novelists; she is also Christian. The interviewer recalled Robinson once observing that Americans tend to avoid contemplating "larger issues." (Many mourners would agree.) Here is what Robinson said in response:
The ancients are right: the dear old human experience is a singular, difficult, shadowed, brilliant experience that does not resolve into being comfortable in the world. The valley of the shadow is part of that, and you are depriving yourself if you do not experience what humankind has experienced, including doubt and sorrow. We experience pain and difficulty as failure instead of saying, I will pass through this, everyone I have ever admired has passed through this, music has come out of it, literature has come out of it. We should think of our humanity as a privilege.
Overcoming grief takes work, forum told
By Dalson Chen
The Windsor Star
http://www2.canada.com/
[Dr. Alan Wolfelt] criticized North American culture as "a mourning-avoidant culture," with some of the world's shortest societal norms for dealing with grief. "We give people three days off work."
If I Die series (This piece is heartbreaking and beautifully written. I read it when it published in 2004 and I think it’s up there with “Mrs. Kelly’s Monster” by Jon Franklin in terms of phenomenal narrative journalism. There’s some excellent stuff in here that I think is relevant to what we’re proposing.)
By Diana Sugg
The Baltimore Sun
http://www.baltimoresun.com/
And in the frantic push for life, few parents or caregivers can bring themselves to think or talk about death until it's too late for a child to say he is afraid, or that he wants to die at home, in his bottom bunk.
Afterward, the families and the caregivers must try to live on. They carry not only the loss of the child, but also the trauma of the decision-making, the illness and the death. Those aftershocks warp lives.
Four or five generations ago, nearly every family, every doctor, every minister had to bury a child. Today, relatively few people know this anguish, and the dilemma of the dying child is a taboo.
But even in the 21st century, the unthinkable still happens. Thousands and thousands of children are living with life-threatening illnesses. And every year, roughly 35,000 children die from complicated conditions like cancer, cystic fibrosis and heart problems.
But he had been thinking about his death, and it became apparent the night his mother and doctor told him that the cancer had spread to his lungs. In late May, R.J.'s pediatric oncologist, Dr. Meghan A. Higman, looked at Michele and said flat out, "He deserves to know the truth."
Together, they walked to R.J.'s bed. His mother began. "They don't think the chemo is working."
R.J. cut her off. "It isn't," he said, matter-of-factly. "I don't want it anymore. I'm done."
"You know if we do nothing," his mother responded, "you're going to die."
The boy blurted out that he wasn't scared. He told them he was going to heaven. He asked to be buried next to his Great-uncle Wayne.
Then to the surprise of Michele and Dr. Higman, he began to write down other things he wanted. No more oral chemotherapy, nothing that would cause him bad stomach upset or diarrhea, and nothing that would hurt his heart, a side effect of some of his medicines. He cried a little.
Children often stay silent, too, on their own mortality.
That has been the experience of Dr. Ken Cohen, a pediatric oncologist at Hopkins who cares only for children with brain tumors. "The kid says, 'I know I'm dying, but I'm not supposed to say anything.'"
When children don't express their thoughts directly, there are ways to get at their feelings. "The children say a lot without saying things," said Barbara M. Sourkes, a psychologist at Lucile Packard Children's Hospital in Palo Alto, Calif..
Children may hint about their own prospects, according to the national Institute of Medicine's landmark 2002 report, When Children Die. Asked what he was going to be when he grew up, one sick child responded, "A ghost." Another boy, discovered by his mother lying stiffly on his back, explained he was practicing for his coffin.
"How taboo is this, and how lonely for parents and kids. It's our culture, and nobody should be faulted for it," said Dr. Joanne Hilden, a pediatric oncologist at the Cleveland Clinic and an advocate of improving end-of-life care for children. "But silence is way, way too intolerable."
People want to believe that youth protects dying children, that they don't grow anxious or have thoughts related to the end. But those who work closely with children say those ideas are misconceptions.
Even as the adults around R.J. were trying to catch up, he had been quietly working out specifics of his death, and beyond. In the spring, he asked for his own autopsy, befuddling his mother, who couldn't believe that it would come to that. When he described the funeral he wanted, the level of detail surprised even his oncologist. He asked to be buried on Deal Island, next to his Great-uncle Wayne. For his funeral, he preferred stuffed animals. Flowers, he said, were for girls.
He wondered what heaven was like, and whether his dogs, Greedy and Muffin, who had both died, would be with him. When the time had been right, in May, during his last short stay at home in Pocomoke City, he asked the one person he knew would tell him.
"Grandmom," he said, cuddling against her while watching The Flintstones in Viva Rock Vegas, "what do you think?"
Carol Wisnom had sweated out a hard 61 years, but she'd never seen anything like the cancer that had attacked her grandson. She told him what she thought, that animals and people have different heavens, but that if he asked real nice, God might let him bring the dogs.
In medicine, for all the scientific protocols that have been mapped - plans of treatment that doctors follow for heart attacks, even for strep throat - there is no plan for handling the death of a child. Almost all the research and attention is poured into saving lives.
Later, after their child dies, many parents say they didn't realize how close it was. For months, often years, they'd pushed for treatments. They'd seen their children live longer than anyone once thought they could. Now, they were shocked that no one could tell them what would happen next.
"Has no child died before?" one mother asked.
The children are uncertain, too, but it is often worse for them. Because of their age, they often have incomplete or inaccurate ideas about death. Doctors say many believe they did something to deserve it. Many want to know if it will hurt. And just as anyone would, these children often feel anxious, angry and lonely. But, sensing these questions would upset their parents and others, kids often won't say anything.
Barbara M. Sourkes, a psychologist at Lucile Packard Children's Hospital at Stanford University in Palo Alto, Calif., who specializes in children at the end of life, reported on an 8-year-old boy, who, a few months before his death, finally called out from his bedroom to his parents, "Am I dying?"
Just as their parents worry about them, the children are concerned about their parents. To protect them, the children often do not talk to their parents directly about their fears and doubts, said Myra Bluebond-Langner, a Rutgers University anthropologist who has studied chronically and terminally ill children and their families for more than 30 years. Hopkins staff members tell of a 9-year-old girl who, near death, called her younger siblings into her hospital room to tell them to take care of their mother.
During the last week of her life, one Howard County teenager, Kelly Petrlik, created a photo album of herself to leave behind for her family. She worked on it from her hospital bed at Hopkins after getting her sisters to sneak in pictures from home. The 16-year-old also left behind a journal for each of her parents, instructions for her gift for a sister's far-off wedding, and a request that at every family celebration they buy a special candle for her.
Nurses have long made white plaster molds of the children's hands as a keepsake for parents, but that used to be done after the child had died. During R.J.'s time in the hospital, with impetus from the palliative care staff, molds were made earlier. R.J. was able to help mix up the plaster from the kit and press his hand into it. He made one for his mother and signed the back. Later, Michele could put her hand in those cool spaces, and feel him.
In his own way, R.J. was getting ready. He designated certain belongings for his sister and cousins. Some children even write wills. Later, R.J. asked his mother for a pen and paper and laboriously scrawled out a thank-you note to his doctors, nurses, his mother and family. It was the morning after he'd first called out to his mother, "The angels are coming."
"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"
The nurses, doctors and others who had been mostly working in scattered ways met the day after the report was published in July 2002. Energized, they formed a coalition, the National Alliance for Children with Life-Threatening Conditions. They've set up an online database with resources for families and caregivers, and they've been bombarded by requests for help. In recent months, the care of critically ill children has been the focus of national conferences and showcased in leading medical journals.
At a conference two weeks ago at the National Institutes of Health, researchers from around the world gathered to assess what they know about the end of life. They concluded that much of it is poorly defined and not understood. The panel called for research to figure out what kind of care works and what doesn't, particularly for groups such as children.
No one knows yet what is best to do, but increasingly, scientists believe that helping the parents realize that the child is dying and prepare for it, as well as being there afterward with support - and acknowledging their pain - are crucial. Research backs up what Hopkins staff have learned through surveys and informal conversations: that rather than trying to steer a grieving person away from talking about their loved one, people should let parents remember.
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