By Tammy Worth
A woman with ovarian cancer who came to see internist Leslie Blackhall was very upset. The woman’s oncologist had told her it was time to discontinue treatment — that it was doing more harm than good. Blackhall knew that the effects of more chemotherapy would be intense and would compromise this patient’s immune system while buying her only a bit more time. So she asked the woman, who was in her 60s, what she would do with more time. The response: Have more chemo, on the chance it might let her live longer.
Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life.
Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves.
“People don’t have a good way to think about end of life,” said Blackhall, an associate professor of internal medicine at the University of Virginia Health System in Charlottesville. “If we tell people, ‘Chemo isn’t going to help you,’ they still want it. We [all] want a peaceful, comfortable, dignified death . . . but not yet,” she said.
So what has research found about commonly used end-of-life interventions? Which ones can be useful and which are not, and when should they be administered?
CPR is just one of the treatments offered in hospitals and other medical settings with the purpose of keeping people alive so an underlying health condition can be treated. For instance, a young and healthy person who has a major allergic reaction to a drug can be given CPR to bring them back and treat the reaction.
But CPR is frequently used even when there is no intervention that can prolong life. For a person with metastatic cancer or late-stage dementia whose heart stops beating, the odds are quite low that resuscitation will be lifesaving, said Blackhall, who began studying this issue in the late 1980s.
Numerous studies have borne this out, one of the most recent being a2009 analysis in the New England Journal of Medicine that looked at more than 400,000 people older than 65 who received in-hospital CPR. Researchers found that only 18 percent survived long enough to be discharged. The survival rate dropped at higher ages, with only 12 percent of those 90 and older recovering enough to leave the hospital.
“It is less likely to work when the cause of heart stopping is something you can’t fix to begin with,” such as terminal cancer, Blackhall said. “They are dying, and if they survive that 15 minutes, [the process of CPR] often breaks their ribs. They will end up in the ICU with a catheter, a tube down their throat and another one to feed them.”
When dialysis, which removes waste from the blood, was introduced in the 1940s, its purpose was to keep young people with acute renal failure alive until their kidneys began to properly function again.
Today, an estimated 650,000 people have end-stage renal disease, more than 70 percent of whom are on dialysis. The typical patient on dialysis is 65 years old, and the fastest-growing group is individuals who are older than 75. The treatment is used in approximately 90 percent of elderly people with end-stage renal disease, according to 2013 research in the journal Aging Health. Acute failure, particularly in young people, can be reversed, allowing them to live long, healthy lives. Dialysis, however, doesn’t cure end-stage renal disease.
Sharon Kaufman, author of “Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line,” said this is another area where the default treatment may not be the best option for older patients.
“People aren’t ‘choosing’ dialysis — they are being directed toward what is available, and what is available is more,” said Kaufman, who chairs the department of anthropology, history and social medicine at the University of California at San Francisco. “Patients are not getting better; they are just hoping not to get worse.”
In many cases, dialysis does not lengthen the lives of older, frail patients. And even when it does, that extra time can be problematic. Researchers from the Johns Hopkins University School of Medicine found that frail, elderly dialysis patients had a 40 percent mortality rate after three years compared with a 16 percent rate for healthier patients receiving the treatment. This is, in part, due to the toll dialysis can take on the body.
A New England Journal of Medicine article from 2009 looked at more than 3,500 patients with end-stage renal disease starting dialysis in U.S. nursing homes. Researchers found that 39 percent retained kidney function three months after initiating treatment; but at 12 months, only 13 percent maintained it and more than half had died. The study authors concluded that dialysis in this patient population is associated with a “substantial and sustained decline in functional status.”
Patients do have a choice about undertaking dialysis, but Kaufman contends that the medical system makes it extremely hard to say no.
People are directed toward dialysis because of health care’s love of technology, its fee-for-service system and the specter of litigation hanging over hospitals that do not use all their resources to extend life, Kaufman said. Also, terminally ill patients often have a strong will to live, and they feel as though they are “choosing death” if they opt out.
Kaufman recounted the case of a physician friend with end-stage renal disease who opted out of dialysis, concluding that the hours attached to a machine and the treatment’s side effects — including fatigue, low blood pressure, blood poisoning and muscle pain — were not worth it. “Because he was a physician, he knew,” Kaufman said. “Doctors don’t want for themselves what they do for their patients, and that’s what patients need to know.”
Joseph Gallo, a professor at the Johns Hopkins Bloomberg School of Public Health, surveyed aging physicians about their thoughts on end-of-life treatments. When asked if they would want dialysis (given the scenario that they had a brain injury rather than a terminal illness), nearly 85 percent said they would turn down the treatment.
As dementia advances, people tend to be less interested in food. They become more likely to fight someone trying to feed them, choke when swallowing food or keep it balled up in their cheek instead of swallowing.
Feeding tubes are often used to bypass these issues. The idea is that the tubes provide nourishment to prolong life while avoiding aspiration pneumonia (where food goes into the lungs rather than the stomach) and decreasing the risk of pressure ulcers, a breakdown of the skin from something rubbing against it.
Nearly a third of the people in U.S. nursing homes with cognitive impairment at some point are given feeding tubes, according to a 2010 article in JAMA. But a recent study in the Archives of Internal Medicine found that feeding tubes didn’t reduce the chances of pressure ulcers among nursing home residents, and doctors say aspiration pneumonia still occurs when stomach contents back up into the esophagus and then into the lungs.
“It turns out that, at the point in time when people develop problems with chewing and swallowing and eating, their dementia is quite advanced and they don’t have a lot of time left anyway,” said Muriel Gillick, director of the program in aging at the Harvard Pilgrim Health Care Institute.But, she said, “it is hard to say to a family, ‘Your mom has trouble swallowing, so we are just not going to give her anything to eat anymore.’ Families want it because feeding someone we love is our way of nurturing and showing we care.”
Feeding tubes, like dialysis and CPR, are often provided in many health-care settings because patients and families aren’t offered alternatives that seem acceptable as the end approaches.
“What matters most is a person is comfortable . . . and I think generally we have ways to achieve this that don’t involve sticking tubes in people,” Gillick said. Ice chips can be offered to assuage thirst, and reading to people, holding their hands, keeping them warm and dry are all sustaining activities that improve quality of life. These things shouldn’t be thought of as “trivial or fluff,” she said.
“All of us are going to die,” Blackhall said. “The question should be how do we want to live — what do we actually want to do with that time? Let’s make sure that whatever time you have, you can do those things.”
Complete Article HERE!
I DON’T know where my first husband is buried. That might sound odd — especially as I attended the funeral in a cemetery somewhere in Dublin — but I have total amnesia when it comes to the exact location, and most of the service.
I remember I wore a white dress I bought at a charity shop; I remember it was cloudy and the cemetery was next to a school soccer pitch where a match was playing.
I’m sure it was a beautiful funeral and I’m grateful to my late husband’s family for arranging it at a time when I was incapable of even brushing my teeth. But I felt no connection to the occasion, even though I was the widow.
During the traditional service, I tuned out and focused on the sounds of the soccer match and the ecstatic cheers of the children as they scored goals against each other. To me, their enthusiastic celebrations were more representative of my husband than a cold, grey cemetery. And I’m not the only mourner to feel this way.
Traditionally, how we commemorate death is dictated by dogma — you must wear black, look sombre and serve curled-up sandwiches. Increasingly, however, modern mourners want a more personalised service that reflects their loved one’s true character — even if it goes against social and religious etiquette.
It used to only be celebrities who had flamboyant farewells (the funeral wishes of Joan Rivers included a wind machine near her casket so that her hair was “blowing just like Beyoncé’s”).
But these days, “fun-erals” aren’t just for performers with deep pockets.
The National Funeral Directors Association has highlighted a rise in personalised ceremonies, including a heightened interest in eco-friendly options.
In Australia, you can order a casket made from handwoven willow, be laid to rest in a coffin made from 100 per cent biodegradable cardboard, or even have your ashes buried in an “organic eco pod” which sprouts into a tree.
Another survey by funeral services company The Co-operative Funeralcare in the UK found 54 per cent of people would prefer their funeral be a “celebration of life”, and 48 per cent would like to incorporate their favourite “hobby, colour, football team or music”.
We want choices — even in death — rather than a cookie-cutter approach to commiseration. And now an Australian funeral home, set to launch this month, is taking “imaginative mourning” one step further.
The House, a Sydney-based service founded by friends Morna Seres, Kylee Stevens and Christian Willis, will offer “memory services” as opposed to traditional funerals.
What’s the difference? First of all, location. Instead of churches, chapels or other traditional places, services will be held at unique venues around the city, including dance studios and art galleries, who have agreed to hold private events — with a casket as part of the decor.
Unusually, the three entrepreneurs have no previous experience of funeral care, instead coming from careers in art, fashion and styling. But they believe the funeral industry needs an injection of creativity. “I was stimulated [to start the business] by my own father’s funeral,” says Seres. “He wasn’t religious, so we didn’t want it to be in a church or chapel. The only other option we were offered was a graveside burial. It was a rainy day and the sound system didn’t work in the open. It just didn’t feel like a true reflection of who he was.”
The idea was further encouraged by the funeral of a mutual friend, where Seres and Stevens were both struck by the impersonal experience.
“From the service to the sensory elements surrounding the day, it just didn’t feel relevant to my friend or their family,” says Stevens. “Coming from a background in the fashion industry, I started thinking about how the design process could be applied to how we say goodbye.”
Funerals can feel like bleak occasions — for obvious reasons — but do they really need to be? The House believes a funeral should be a “transitional experience” for attendees, using art, design and “sensory experiences” to help with the grieving process.
This could include setting up an art exhibition or photos and videos. Instead of sitting on rows of chairs like a conference, they encourage mourners to move around the coffin, chatting freely instead of feeling confined by tradition.
They may be onto something.
A survey by the not-for-profit organisation Include a Charity found that Australians would prefer their funeral to be a “more casual send-off”. When questioned about their ideal ceremony, 71 per cent said they’d like their loved ones to wear bright colours and 98 per cent said laughing at a funeral was an appropriate way to remember someone.
We’re also breaking out of the mindset that a funeral has to be uncomfortable for attendees — and it’s all about the small touches. Some people even said they’d like “a barista to serve good coffee” at their service.
Instead of traditional hymns, people are also opting for modern music (Green Day’sTime Of Your Life is a popular choice, apparently). I have a friend who, when his 22-year-old brother died, organised a silent disco by the graveside — imagine spotting a crowd of mourners with headphones on, dancing in silence.
Then there’s the debate around digital documentation. Many funeral parlours now offer webcams so that overseas relatives can tune into a service.
When 13-year-old YouTube star Caleb Logan Bratayley died last October, more than 47,000 people tuned into watch a live-stream of his funeral on Periscope. On YouTube there is a GoPro video of a Buddhist funeral shot from a drone flying above it. Insensitive? That’s just a matter of opinion.
“Many ceremonies, like weddings and birthdays, have evolved from a traditional style of celebration to a reflection of an individual’s personality,” says psychologist Barbara Jensen. “This is now also true of funerals, although the change has happened at a slower rate because death is still very much taboo in our society. The important thing to remember here is that there is no right or wrong way to do things, and this is important if a funeral is going to be healing for the attendees.”
This type of healing, however, costs. How much will a multi-sensory, personalised funeral reduce a next-of-kin’s inheritance? The House says it can match the average cost of a funeral in Australia (from $4000 for a basic cremation, according to government finance website moneysmart.gov.au).
“Our cost does vary on the requirements of the individual,” says Seres. “But it is important to us that, if someone walks through our door and doesn’t have a lot of money, we’re still able to service them.”
Final costs can also be reduced by enlisting family and friends to help with certain elements.
The danger is that personalised funerals could go the same way as children’s birthday parties, becoming just another pressure. A decade ago, kids were content with jelly, ice-cream and pass-the-parcel, but now a parent feels like a failure if they don’t hire a full petting zoo and the cast of a Disney musical.
Ceremonies that honour a loved one’s memory, though, as well as providing friends and family with closure, are a wonderful farewell.
Complete Article HERE!
Brighton Beach Lightning Strike Felt By Thousands, Kills Six – July 30, 1905
When walking through Woodlawn Cemetery in the Bronx, you can come across fancy mausoleums and simple grave markers of the famous and infamous. F.W. Woolworth, Fiorello LaGuardia, Duke Ellington, Bat Masterson and Herman Melville are among the half million souls interred in this historic place.
Then out of the blue you may stumble across the lives of ordinary New Yorker’s memorialized in an extraordinary way. Such is the Demmerle monument.
Unlike many other tombstones which record a name and birth and death years with a short epitaph, the Demmerle memorial is an ornate series of carved monuments which tells and shows the story of one family’s tragedy.
Sunday July 30, 1905 started out as a beautiful, sun-filled, hot day and an estimated 250,000 New Yorker’s sought out the seashore of Coney Island for pleasure and a refuge from the heat. Charles Demmerle age 51, his wife Emilie age 49 and their two sons, Frank C. age 23, and Charles R. age 22 all residing at 372 East 16th Street Flatbush, spent the day with their cousin Robert T. Wasch age 16 at Brighton Beach.
After a day of swimming the weather started changing. At 4 pm the sky darkened and swimmers left the water as rain began to fall, coming down heavier and heavier as the minutes passed. Many took refuge near the Parkway Baths on the beach at Ocean Parkway.
As the rain fell, thunder and lightning approached the beach, a large flagpole topped by an eagle on the Boardwalk near the Parkway Baths became a gathering spot for thousands of beach goers seeking shelter. They congregated around the pole, on the boardwalk and under the boardwalk which covered the beach.
There were a few vivid flashes accompanied by thunder cracks before the big one came.
John Manzer, a witness standing on the boardwalk and looking up described what happened next. “A ball of fire seemed to start right up at the eagle’s beak and travel downward around and around the pole. Right at the crosstrees it spread out and seemed to drop into the earth with a noise I will never forget.”
The flagpole was split in half. Everyone on or under the wet conductive boardwalk and sand beneath it was given a jolt and those nearest the flagpole were literally thrown to the ground. Thousands of people felt the electrical shock. After the screaming subsided, it was noticed that five people were blue from head to toe and stone dead. Frank and Charles Demmerle, their cousin Robert and two others, all near the base of the flagpole were killed instantly. At least nine others suffered serious burns. Simultaneously, a sixth man standing under a tree in nearby Gravesend was killed by what was believed by some to be the same bolt that had struck in Brighton Beach.
The dead were taken to a nearby room when Mrs. Demmerle came by looking for her missing boys.
The New York Times reported that she took one look at the bodies stretched out on the floor and fell forward crying “Oh, my boys! The dear boys to whose future I had looked forward with so much pride. I warned them not to go into the water when the storm came up. I feared even then that some evil was about to befall”
The Demmerle’s put up this poignant monument to commemorate their loss. The large memorial stone has three bronze reliefs showing the young men. The monument also has set into the stone in bronze relief the depiction of the lightning bolt striking the flagpole and the boardwalk.
The words on the front of the monument read simply “Our Fondest Hopes Lie Buried Here!” with the names and ages of the three young men. Beneath that it says “TAKEN SUDDENLY IN AN HOUR OF HAPPINESS. STRUCK BY A BOLT OF LIGHTNING.” The rear of the monument contains a long anguished poem.
Parents, Emilie and Charles’ Demmerle’s monument to the left of their sons and nephew depicts a life size statue of mother Emilie, sitting on a tree stump, offering flowers, her head cast down in mourning, with a broken tree limb above her.
It is truly a magnificent work of funereal art and it certainly calls attention today to the fact that this family’s anguish is worthy of remembrance and a retelling.
Complete Article HERE!
By Ariell Marsh
Virginia Wingate discovered the best form of therapy after her husband’s death from a stroke just over a year ago.
The 68-year-old widow worked through her grief by turning a longtime hobby into a ministry. She now crochets mats that are made from plastic grocery bags for homeless men and women on the streets of Daytona Beach. She’s made 30 of the 6-foot-long lightweight, waterproof mats so far.
“Crocheting has become an important part of my life since my husband’s death because it keeps me busy and happy knowing that I’m helping someone else,” says Wingate. “It’s therapy for me because it helps me mentally so that I don’t have a breakdown.”
Wingate has been crocheting since she was 15. She became interested in the art when she took a visit to her grandmother’s house and saw some of the doilies she had lying around.
“I saw the most beautiful doilies that had the most gorgeous waves,” says Wingate. “Nobody in my family knew how to crochet, but I wanted to learn so badly.”
Wingate taught herself how to create crocheted patterns from a learn-how-to book. Soon after, she learned more about the art from four crocheters whom she knew.
“I’m just a country girl who loves to create her own things,” says Wingate.
Before her husband died, Wingate mostly crocheted things like dresses, doilies, and blankets.
In January 2015, she started making the plastic bag mats. She turned to her church, First Christian Church Daytona (Disciples of Christ), for a worthwhile cause to occupy her after husband’s death. Billie Lynch, chairwoman of the congregation’s outreach committee, had heard about the plastic bag mats. Knowing Wingate was an avid crocheter, Lynch asked her if she would be interested in making them for homeless people. With eagerness, Wingate got started on making these unique works of art. She took a pattern that had been used by others and made it her own by creating a different design and a “strap” for the homeless to easily transport the rolled-up mat.
The sleeping mats are made of grocery store plastic bags cut into strips that are tied together to become “plarn” — plastic yarn. Wingate uses any plastic shopping bags, except the ones that are too big or too small, that she receives from shopping or from neighbors. The mats are usually about six feet long. Between 500 to 700 bags are needed to make each mat. They take about two weeks for Wingate to complete and are waterproof and bug-free.
According to Lynch, putting together those strips of plastic bags is a challenge because when you stack plastic it tends to slide, but she says that Wingate does an amazing job making them.
“Her work looks like it was done by a machine as opposed to handmade,” says Lynch.
Once Wingate is done making them, she takes them to First Christian Church Daytona and from there Pastor Dave Troxler takes them to Halifax Urban Ministries to be distributed to the homeless.
Lynch says she knows a few local churches make the mats as a group ministry, but that Wingate’s individual efforts are impressive.
“This is one talented woman who has found her way to serve God … quietly and unassumingly,” Lynch says.
Complete Article HERE!
The baby who would soon die arrived at 34 weeks, eyes shut, squawking. Her father cut the umbilical cord with a pair of silver scissors. A priest in blue scrubs sprinkled Holy Water on her forehead. A photographer circled the delivery room, capturing her last moments.
And Cathleen Warner quietly marveled: My baby is crying.
The doctor had said the infant’s lungs could never fill with air. Prenatal testing five months earlier had revealed a chromosomal abnormality called Trisomy 18. “Incompatible with life,” the physician told her on the Saturday phone call. Warner had dropped to her knees in the kitchen.
Now the baby’s heartbeat was fading. But she was still breathing. Perhaps they’d have at least five minutes together, Warner thought. She kissed the newborn’s cheeks, just like she’d envisioned, and prepared to say goodbye.
This is perinatal hospice, a birth plan that revolves around death. Thanks to increasingly sophisticated diagnostics, families today can confront tragedy with advance notice — and a decision: Should they terminate a pregnancy that cannot sustain life? Or deliver a baby who won’t survive long outside the womb?
This dilemma is steadily creeping into America’s abortion debate, with some Republican lawmakers using perinatal hospice as a political tool. Over the last decade, antiabortion activists have worked with legislators to push the care model into mainstream consciousness, promoting bills they hope will steer women away from a procedure they consider murder.
Last month, Indiana became the sixth state to require doctors to counsel women who have received fatal fetal diagnoses about perinatal hospice before they terminate a pregnancy.
The care model is a bundle of services, untethered to a hospital or medical center. Hospice nurses and social workers help families prepare for loss, coaching parents on what to say to siblings and co-workers. They take calls at 2 a.m. They recommend family therapists for couples whose relationships strain under grief. They teach mothers how to deliver painkillers to a dying infant, should the baby live long enough to go home.
Perinatal hospice, however, isn’t connected to religion, said Tammy Ruiz Ziegler, a Virginia nurse who started Mary Washington Hospital’s program in Fredericksburg, Va., in 2006.
Ruiz Ziegler has met parents from both sides of the ideological aisle who have decided to continue nonviable pregnancies. Some feel it helps them grieve, she said. Some want to know they’ve done everything they could.
“Eleven years ago, when I first brought this idea up to physicians, they stared back at me like there was something genuinely wrong with me,” Ruiz Ziegler said. “Today those same doctors are my staunchest supporters.”
They’re acknowledging a demand for an alternative to abortion for women carrying nonviable fetuses, a need that previously received little attention, she said.
Before technology offered families any warning, doctors who delivered terminally ill or stillborn babies would often take them away from their mothers to die. In the 1970s, as genetic testing gained prominence, parents moved toward expressing their own preferences. Mothers and fathers requested to hold their babies, if only for a minute.
A children’s hospital in Denver became the first in the U.S. nation to develop hospice care for terminally ill infants in 1980, according to the Catholic Health Association of the United States. The program started as a separate room for grieving families in the neonatal intensive care unit. Psychiatrists instructed nurses on how to talk to parents in moments of stress.
Perinatal hospice grew as more parents connected online and learned about what has since become a flourishing community, Ruiz Ziegler said. Most hospitals will accommodate a parent’s end-of-life wishes, if they ask. But hospice care creates an especially gentle environment with professionals trained to handle despair.
By 2006, when Ruiz Ziegler started, about 40 medical centers in the United States had some type of formal perinatal hospice program, according to PerinatalHospice.org, a website that tracks formal programs. Today, there are 202.
“After a diagnosis, I ask the parents, ‘What would you like to see happen?’ ” Ruiz Ziegler said. “We tailor the experience entirely to them.”
Families can invite a religious leader into the delivery room. They mold their infant’s footprints in clay. They sing lullabies, and prepare bubble baths and hire a photographer.
Ruiz Ziegler stays nearby to provide emotional support or pain medication for a baby who appears uncomfortable. A child can live for minutes, she said, or weeks.
In recent months, perinatal hospice has emerged at the center of the debate over when life starts and how it should end.
Indiana’s law, which takes effect July 1, requires the state health department to create brochures about the service. Gov. Mike Pence (R) called it “a comprehensive pro-life measure that affirms the value of all human life.”
The mandate’s authors borrowed a strategy from national antiabortion groups such as Americans United for Life and National Right to Life, which provide model language about abortion alternatives to state lawmakers.
Mary Spaulding Balch, director of state legislation for National Right to Life, started working on perinatal hospice laws about 10 years ago, she said, when Minnesota became the first state to require doctors to tell women about the care model before they end a pregnancy.
“Since that time, we’ve seen programs popping up all over the country,” Balch said. “They acknowledge the humanity of the child.”
The 2006 amendment to a state abortion restriction mandated “comprehensive support to the female and her family” through the diagnosis, birth and death of an infant.
Steven Calvin, medical director of the Minnesota Birth Center, a free-standing maternity complex in Minneapolis, said he saw an opportunity to raise awareness about perinatal hospice in 2003 after Minnesota passed the Women’s Woman’s Right to Know Act — a mandate compelling physicians to show patients photos of fetuses at each stage of gestational development 24 hours before they get an abortion, among other things.
Calvin, who is against abortion, felt said forcing women who had received fatal fetal diagnoses to look at images depicting healthy fetuses was inappropriate. He contacted lawmakers and suggested an amendment: Why not add information about perinatal hospice?
“These women badly wanted to have their babies,” he said, “and often, all they hear from a doctor in these scenarios is, ‘You should get an abortion.’ They should know there’s another option.”
Arizona, Kansas, Mississippi and Oklahoma have followed Minnesota’s lead, adding mandates that women considering an abortion must first receive information about perinatal hospice. Like in Minnesota, the provisions appeared in laws antiabortion groups call “informed consent” measures. Critics said the policies insert the government in private conversations and present an unnecessary obstacle between a woman and a legal medical procedure.
The Indiana measure inspired a bigger wave of swift backlash from women who interpreted it as a way to further stigmatize abortion — and parents who don’t want their most intimate choices politicized. A MoveOn.org petition to stop the law, created by a group called Indy Feminists, raised concern the state-mandated counseling would pressure grieving parents toward a particular course.
“Patients are getting a message about what is the ‘correct choice’ in the eyes of the state,” said Harmony Glenn, 29, a member of the group who works at an Indiana medical center.
“The doctor is no longer an unbiased source of medical information.”
The American College of Obstetricians and Gynecologists, a national group of roughly 30,000 physicians, meanwhile, released a statement condemning the move, urging Pence to keep medical discussions between patient and doctor.
Lisa Hollier, a Texas obstetrician-gynecologist who has cared for mothers who have faced a terminal diagnosis, said she walks parents through each option, without pressure.
The Indiana law “causes counseling to be more directive,” said Hollier, who focuses on maternal fetal medicine. “And when it’s directive, I’m concerned that you, as the patient, are going to ultimately lose confidence that I have your best interests at heart.”
Warner sensed something was wrong before any test could tell her. When she was 10 weeks pregnant, the doctor confirmed her fears.
Erin, as the baby was to be named, would not fully develop her lungs and heart. She would either die in the womb or shortly after birth. Warner said she was a “pro-choice Catholic.” But for weeks she could not decide whether she wanted to have an abortion. She declined when a nurse offered her a recording of the fetus’s heartbeat. Then she changed her mind and put the device inside a teddy bear.
She and her husband consulted two priests. One implied abortion could send her to hell; the other told her to pray. Her indecision held until the baby she carried reached a gestational age of 19 weeks.
Her husband, who is also Catholic, wasn’t comfortable making the call, either. She figured that was a sign. “Somehow,” she said, “I knew abortion just wasn’t the right choice for me.”
So, Warner went to support groups and routine checkups. She found a photographer, invited her extended family to the hospital on her due date and arranged for a grave site in Quantico, Va.
When the fetus’s heartbeat started to slow at 34 weeks, Warner’s doctor suggested a Caesarean section. That would give them the best chance to meet her.
Erin died in her dad’s arms. She was 27 minutes old.
Eight years later, Warner, now 46, cherishes the memory of her birth. She remembers it as joyful, as though the first wave of grief prepared her for the baby’s last minutes in the delivery room.
She placed Erin’s portrait on her mantle mantel. She wants other expectant mothers to know, though: There is no best way to handle a fatal diagnosis.
“I would not want someone telling me that, because Erin was going to die, I should have an abortion,” Warner said, “and I don’t want someone telling me, you know what, you should have the baby.”
When Natalie Wilson was 21 weeks pregnant, she learned her baby’s heart would fail.
The doctor offered three choices: She could try a risky surgery, have an abortion or deliver an infant who would soon die.
Wilson, a neonatal nurse in Minnesota, did not want her boy’s life to end on an operating table. She didn’t feel comfortable with abortion, either. So, she found a pediatrician who would prescribe morphine for a terminally ill newborn.
Because she’d worked with sick babies for most of her career, she knew that, as a parent, she could influence how, exactly, her newborn’s life would end. She wanted it to be gentle — a death surrounded by loved ones. She has since become a perinatal hospice nurse.
She hoped to carry Liam, as the baby was to be named, for a full nine months. His breath, she decided, would slow in her husband’s arms.
Wilson recalls slipping into a mental fog on Dec. 22, 2011 — the day Liam was diagnosed with hypoplastic left heart syndrome. She’d been excited to have another child, picturing a younger brother to play soccer with her 4-year-old son, Gavin. Suddenly, grief settled over everything. Wilson can’t remember much about that Christmas.
“We didn’t see how life would ever be good again,” she said. “All we could see was this impending death. How do you even smile again? How do you laugh knowing your child is dying?”
For the last half of her pregnancy, Wilson fought to stay present. If Liam kicked, she tried to enjoy it. She posed for maternity photos in a cropped purple top. She pressed her pug, Pixie, against her belly. She didn’t tell her co-workers — all nurses — that Liam was both growing and dying. She wanted them to treat her like a “normal” pregnant woman.
He was born that April crying, with fingers spread open. His extended family gathered at the hospital, passing him around.
The next day, unsure of how long Liam’s heart would keep beating, Wilson wrapped him in a blue-striped blanket and took him home. She stayed up all night with her husband, Alan, taking turns rocking the baby. She listened through a stethoscope to his heart.
Just 49-and-a-half hours after Liam’s birth, the beat started to slow. Wilson called Gavin into the bedroom. She handed the baby to Alan, who cradled Liam in his outstretched forearms. The infant’s feet touched his dad’s stomach. They all huddled close on a king-sized bed, rubbing his arms and legs and belly, saying, “We love you. We love you.”
Liam seemed to look at his family — each of them, individually, Wilson recalls. Then he shut his eyes.
Complete Article HERE!
By Naomi Shulman
“Stella? Where are you?”
I was looking for my 11-year-old daughter, who had abruptly left a dinner party with our closest friends. Her friend sat alone in the living room, abandoned. I was going to talk to Stella about proper host behavior when I discovered her in her darkened bedroom, curled up in the bottom bunk of her bed.
“Stella?” I asked, my tone softening as I sat next to her. Her head down, she opened her palm and showed me the bit of broken glass. And then she leaned wordlessly in toward me, burying her face in my lap.
Last year, our children lost three of their grandparents in four months. Their Grandma Eadie, my husband Chris’s mother, died in early August after a year-long bout with colon cancer. Their Grandpa Chuck, Chris’s father, died seven weeks later, essentially of a broken heart. Then their Baba, my mother, died in early November, of multiple myeloma.
And through it all, my younger daughter, Stella, did not cry.
This surprised all of us, Stella perhaps the most. When we had told the girls that Eadie had cancer, it had been Stella who had burst into tears, then barraged us with questions: Would she definitely die? But when would she die? Was there any way a doctor could cure her? Meanwhile her older sister Lila sat motionless across the table, silently ashen. When Stella paused for breath, I turned to her sister. “Lila? You’re awfully quiet.”
Lila blinked at me slowly. “Well, I don’t like it,” she announced irritably. And that was that.
But at Eadie’s funeral, Lila sobbed openly, her body shaking, her face wet. When I stood at the podium to speak, I glanced down at my girls and found that I could not look at Lila; her tears would prompt my own and I would lose my composure. I turned instead to Stella, who sat still in her seat, eyes dry, mouth shut in a straight line, and I let her be my rock as I made my way through the eulogy I’d written for my mother-in-law, the woman who for two decades had been a second mother to me.
The same at Chuck’s funeral. And my mother’s shiva service. Lila: tears. Stella: blank expression.
“Why am I not crying?” Stella asked me at one point.
“Don’t worry,” I said, “everyone grieves in their own way, at their own pace.”
But watching Stella’s stony affect, I found myself asking the same question. Why wasn’t she crying? And should I be doing something about it?
She certainly wasn’t taking a cue from me. I had started weeping the day Eadie was diagnosed, too, and the ensuing year felt like a long descent into a bottomless grief — the anticipation of it, the inevitable arrival of it, and its long, tenacious aftermath.
My worst episode was the day after my mother died; the moment I awoke, before I even opened my eyes, I felt the swelling tide overtake me and I wailed. Chris reached over to hold me as I had held him in the front seat of our car three months earlier, after our last visit with his mother, who had confusedly been trying to crawl out of her own skin to escape her relentless, unavoidable pain.
I was rocking, wailing, keening. I recognized in myself what I’d seen him, and what I’d seen in Lila in the front row at the funeral: head-between-the-knees gasping grief. We’d all been in the throes of it except Stella, the smallest and youngest of us, who watched quietly, her face unreadable.
“Don’t make her feel broken,” my therapist gently warned me. My initial response to her — you’re normal — had been spot on, my therapist confirmed. “Young children process grief differently. You can’t expect it to look the same as yours.”
Months passed. We navigated the ache of the holidays, hollow and empty, missing so many grandparents who had been there the year before. I noticed the length of time between each cathartic cry grew longer and longer. A bit of music here, a reminder of a joke there, and grief snuck back in like a ninja, overtaking me for a moment, but I could put my head in my hands for a moment, then come back up for air and keep moving forward.
A few weeks ago, Chris and his brother felt it was time to deal with their parents’ belongings. Some items were being donated, some sold. Finally came a sort of backwards moving day; rather than heading into a new adventure, my in-laws’ things were retrieved, their adventures having come to a close. Chris hauled a trailer filled with furniture and artwork from his parents’ condo, and one by one we found places in our home to integrate each item.
Nearly as an afterthought, he picked up some of the tchotchkes lining his parents’ shelves. A tiny figurine of two koalas clutching each other — I’d always found it hokey, but now it felt precious. A small turquoise bowl, always empty, waiting for something to fill it. And several pieces of Venetian glass fashioned to look like wrapped candies, forever waiting for someone to unwrap them and enjoy.
Here in her dark bedroom, in Stella’s moist, open palm, was a piece of that Venetian glass candy, broken in two. Stella had always been simultaneously drawn to them and slightly frustrated by them — they looked so delicious, but they were just a tease. Chris had handed one of these glass candies to Stella after we finished bringing in the bulk of his parents’ things — it was the only one of her grandparents’ belongings that had been offered to her and her alone.
She’d carried it with her the rest of the day, a treasure and talisman, and was showing it to our guests when she tripped and dropped it. It was the sort of thing that I warned her about all the time. Be careful, take care of your things, you’ll lose them. But now was not the time for any of that. And anyway, taking care only goes so far. Everything breaks. Everything gets lost. Stella had learned that as well as anyone, earlier than many.
“Can we glue it back?” she asked as her sobs began to subside.
“Maybe,” I said, but I knew it would never be the same. It would never fool anyone into thinking it was real ever again. We’d be able to see the fissure immediately, proof of its vulnerability. “We can try.” We didn’t, though. It sits on a top shelf of her bedroom in two pieces, a sharp reminder.
We stopped talking. I rocked back and forth on her bed, holding her close, reverting to the keening motion every human leans into when things get thatbad. It was the same way I held my husband in August and again in September, and the same way he reached for me in November, the wordless soothing rhythm of a parent and child.
Our guests would be okay downstairs. We sat together in the dark. And I let her cry, and cry, and cry. Broken open, edges jagged, ready to grieve.
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