We made it!
My father’s recent death was not beautiful, and neither were any of the other deaths I’ve witnessed of late. This has left me wondering about a better path. Death is not easy, to be sure, but these were made particularly painful by medical interventions—or perhaps I witnessed the confusion between saving a life and prolonging the process of dying.
So I threw a party. Or rather, I held my first Death Café, and it turned out to be a lively, invigorating affair.
In Europe, there’s a tradition of gathering to discuss important subjects—a café philo, for a philosophical café, or café scientifique, a scientific café, and now there are café mortel, or death cafés. A death café isn’t an actual place; it’s a temporary event in various locations, such as my home, complete with decorations and, in my case, a cake with “DEATH: THE FINAL FRONTIER” scrawled on top.
My gathering was comprised of spunky friends, all in our middle years, all of us healthy. As it turns out, this is the segment of population that most seems to care about shaping the end of a life. A Pew Research Center study found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22 percent of them had written down wishes for medical treatment. The same study, though, found a sharp increase in all adults putting something in writing (six of 10 of us), which indicates that percentage-wise, it’s the slightly younger folks who are preparing now for their inevitable deaths.
This does not surprise me. For the last 14 years, I’ve been one of the 28 million Americans currently helping someone die. Baby Boomers and Gen Xers are caught in an unprecedented tide of caretaking both children and parents (not to mention ourselves and our own aging bodies); we are the first generation to be caught in this particular kind of caregiving-and-slow-death crisis. With medical intervention and technological wizardry, we’re forced to make decisions about procedures and medicines and ethics as never before. And we find ourselves without much guidance in a culture that’s conflicted and confused about dying.
Which is why we’re willing to talk. At my Death Café, I encouraged us not to focus on the deaths we’d witnessed in the past, but rather to speak of the deaths we want for ourselves in the future. Various results emerged. Half were afraid of the suffering that can precede death; half were afraid of death itself. Few of us had practiced death (“pretend this next breath is your last; what does that feel like?”), but all of us were convinced that doing so would only intensify and enlarge our lives.
The zeitgeist of this new movement is just now gaining momentum, but I can feel its strength and power. An unprecedented 66 percent of Americans now think there are instances in which doctors should allow a patient to die instead of doing everything possible to save that patient’s life. People would like to die—sometimes would like others to die—and this doesn’t make us morbid or crazy or unethical or mean. No. We are merciful and kind. We are as moral as we are mortal. We just want to know how to gracefully do what is going to happen anyway.
What lies ahead is unexplored territory, much like death itself, really. California recently passed “Death with Dignity” legislation, and the state representative in my hometown is reintroducing a similar bill in Colorado. Don’t get me wrong: I am all for funding research, finding cures and offering respite to caregivers. But it’s also our ethical duty to try for a chin-up, heart-steady end.
My father contracted pneumonia after 14 years of suffering with Alzheimer’s. He was given antibiotics and I was not in a legal position to object, but I’d have asked for comfort care only—not because I didn’t love him, but because I loved him enough to want him to have as natural and relaxed a death as possible.
Instead, I saw him grimace in pain and fear. I saw tubes and syringes and the sores on his body. I saw the family he’d worked so hard to create break apart under the pressure. I saw his blue eyes fade, and they taught me well: This could happen to you, too.
Death is perhaps the greatest mystery we face and the actual act of dying is the last physical act of our lives. We can strive to do it our way and to do it well. If anything deserves preparation, or some renewed clarity, death might be it. Which is why I suggest throwing a lively party.
Laura Pritchett is a contributor to Writers on the Range, an opinion service of High Country News (hcn.org). She lives in rural Colorado and her novel, Stars Go Blue, is based on her experience with her father.
Complete Article HERE!
By Sarah Kaplan
The narrow, inscrutable zone between undeniably still here and unequivocally gone includes a range of states that look like life but may not be: a beating heart, a functioning digestive system, even moving fingers and toes. Death is less a moment then a process, a gradual drift out of existence as essential functions switch off, be it rapidly or one by one.
It was exactly midnight when Colleen Burns was wheeled into the operating room at St. Joseph’s Hospital Health Center in Syracuse, N.Y. She had been deep in a coma for several days after overdosing on a toxic cocktail of drugs. Scans of electrical activity in her brain were poor, and oxygen didn’t seem to be flowing. Burns was brain dead, her family was told; if they wanted to donate her organs, now was the time to do it.
But there, under the bright lights of the prep room in the OR, Burns opened her eyes. The 41-year-old wasn’t brain dead. She wasn’t even unconscious anymore. And doctors had been minutes away from cutting into her to remove her organs.
This is the nightmare scenario, the one that sends doctors and neurologists into cold sweats. It’s the reason that, in 2010, the American Academy of Neurology issued new guidelines for hospitals for determining brain death – the condition that legally demarcates life from whatever lies beyond. Those standards, according to Yale University neurologist David Greer, who worked on them, are meant to ensure that no patient is declared dead unless they really are beyond all hope of recovery.
“This is truly one of those matters of life and death, and we want to make sure this is done right every single time,” he told NPR.
But five years later, according to a study led by Greer that was published in the journal JAMA Neurology Monday, not all hospitals have adopted the guidelines.
Of the nearly 500 hospitals Greer and his colleagues surveyed over a three year period, most facilities did not require that someone with expertise in neurology or neurosurgery be present to determine brain death. At more than half of hospitals, the person who makes the call doesn’t even have to be the patient’s attending physician. A majority also didn’t require doctors to test for hypotension (abnormally low blood pressure) or hypothermia, both of which can suppress brain function which could mimic the appearance of brain death.
There were large improvements in standardization of brain death assessments across hospitals since the 2010 criteria were published. The survey also looked at standards, not practices.
But the lingering lapses are still worrying, Greer told NPR.
“There are very few things in medicine that should be black and white, but this is certainly one of them,” he said. “There really are no excuses at this point for hospitals not to be able to do this 100 percent of the time.”
Burns’s near-disastrous declaration of death happened in 2009, before the new guidelines were released, though a U.S. Department of Health and Human Services report on the incident found that St. Joseph’s had failed to meet previous standards for assessing death. Hospital staff missed several signs that Burns’s brain was still functioning the night she was due for organ donation surgery: her nostrils flared, her lips and tongue moved, she was breathing “above the ventilator” (meaning, taking breaths of her own accord). And when a nurse performed a reflex test, scraping a finger along the bottom of Burns’s foot, the woman’s toes curled inward, according to the Syracuse Post-Standard.
Doctors failed to order repeat CT scans and inexplicably and inaccurately said that she suffered from cardiac arrest when she hadn’t. Crucially, they also failed to measure whether the drugs she had taken still lingered in her system, preventing her from exhibiting even the most primitive reflexes expected of someone with brain activity.
This is a widespread problem, Greer’s report indicates: only about 32 percent of hospitals surveyed required drug tests to rule out toxic levels that can mimic the loss of primitive reflexes associated with brain death.
As soon as Burns opened her eyes, she was rushed back into the ICU and her doctors resumed treatment. She ultimately recovered from her overdose and was discharged two weeks later. But 16 months after the near-miss in the OR Burns committed suicide, her mother told the Post-Standard.
Burns’s mother, Lucille Kuss, said that depression, not what happened at the hospital, is what drove Burns to her death.
“She was so depressed that it really didn’t make any difference to her,” Kuss said of the incident.
Cases like Burns’s are increasingly rare, but they are emblematic of an anxiety at the root of all discussions about brain death. If death is a process, at what point in the process is the person no longer alive?
For most of history, this question was mostly moot. In the Victorian era, for example, doctors couldn’t keep blood pumping through a permanently unresponsive person’s body, even if they wanted to, and a person who lost brain function would surely quit breathing shortly after. Determining the exact point of death was less a medical necessity than a philosophical diversion: In the early 1900s, Boston doctor Duncan MacDougall recruited a number of terminally ill patients to lie down on a massive scale during their final moments. By measuring fluctuations in their weight at the moment they died, MacDougall claimed, he could determine the mass of the soul.
The advent of organ donation procedures in the 1960s changed that. That period of collapse as functions failed became not only a tragic inevitability, but a vital window when organs could be taken from a dead body and used to keep another alive. Yet defining that window is medically and ethically complicated. Open it too early, as Burns’s doctors almost did, and you risk sacrificing a patient who might have survived. Too late, and the organs will deteriorate along with the life they once sustained.
This is how we arrived at a definition of death as brain death, the complete and irreversible loss of brain function, including in the brain stem (which controls the heart and lungs). It comes largely from a 1968 definition written for the The Journal of the American Medical Association by an ad hoc Harvard Medical School committee, and then affirmed by a blue ribbon medical commission just over a decade later. A person can also be declared dead if they suffer an irreversible cessation of respiratory and circulatory functions – in other words, their heart and lungs permanently stop.
Some critics of brain death as a barometer for organ donation worry that it might encourage doctors to give up on their patients too soon.
Of course, the extraction of organs from a failing body is not the only reason to come up with a legal definition of death. It also helps hospitals to determine when and how to end life-saving interventions and remove a patient from life support.
The logic behind marking brain death as the end of life is that existence without a brain isn’t living.
“The brain is the person, the evolved person, not the machine person,” Cornell University neurologist Fred Plum said at a symposium on comas and death in 2000, according to the New Yorker. “. . . We are not one living cell. We are the evolution of a very large group of systems into the awareness of self and the environment.”
The brain is the person, the evolved person, not the machine person
But not everyone agrees. Cultural and legal definitions of life and death vary – in an interview with NPR, Georgetown University medical ethics professor Robert Veatch called defining death “the abortion question at the other end of life.”
Right now, the family of Jahi McMath, a California teenager who was declared brain dead two years ago but has been kept on life support, is suing to have her death certificate invalidated according to the Associated Press. The McMaths are devout Christians, their lawyer wrote in a brief, who believe that “as long as the heart is beating, Jahi is alive.”
McMath is currently on a ventilator in New Jersey, where state law allows hospitals to take a family’s religion into consideration when making decisions about end-of-life procedures.
Yet despite the legal, medical and moral complexities in determining brain death, there is no federally mandated procedure for doing so, according to the New York Times. There are only the guidelines issued by neurologists, and how hospitals choose to apply them.
That they do so inconsistently only exacerbates the anxieties people have about death and organ donation, Leslie Whetstine, a bioethicist at Walsh University in Ohio, told NPR.
“If one hospital is using a testing method that’s different from another hospital,” she said, “people might wonder: ‘Are they really dead?’”
Complete Article HERE!
By RACHAEL BEDARD
MY patient, a man in his 60s, whispered “Gracias, God bless” over and over as I moved his legs during an exam. Our palliative care team had been called in to help manage his pain after his liver cancer recurred. The cancer had already metastasized to his spine, creating pressure on his spinal cord that left him nearly paralyzed from the waist down. He seemed like a felled tree. We found him tearful and scared. But he wasn’t alone.
At his side were the corrections officers who had accompanied him from the prison where he was incarcerated on a conspiracy charge related to a drug arrest. They guarded his door day and night and screened all his visitors. As the doctors told him that his life would soon be over, his officers watched television, ate snacks, and read the newspaper. One day on my way out of his room, I asked an officer whether the patient would be told that he was being moved to a different prison once he left the hospital. He wasn’t entitled to know, said the officer flatly, because he was “property of the state.”
In our prison system, there are various programs called “compassionate release” or sometimes “medical parole,” whereby elderly or seriously ill prisoners may be released to the community before the end of their sentence. Since 1992, 371 people have been released through the medical parole program in New York State. (For the sake of comparison, about 100 inmates die from natural causes every year in the New York prison system.) Only 30 inmates filed applications for medical release in 2014, of whom 17 were released and six died before their review. In the federal prison system, the numbers are even more dismal; 101 federal inmates were approved for compassionate release in 2014 out of a total federal prison population of 214,000 people.
My patient’s sentence was short and he would have been eligible for parole within a year. He had a loving family desperate to have him home, where they could care for him. I called the prison to follow up and asked the doctor there if he intended to file a petition for medical parole. He told me he had, but warned that the process was cumbersome. Still, he was hopeful.
There are medical reasons, not just compassionate ones, for early release. Providing care to a patient with an illness this serious is complex and prone to error in the best of circumstances. He needed palliative care teams to do what they do well: develop advanced care plans, identify the patient’s goals of care, aggressively manage pain and other symptoms, and facilitate communication among different specialists.
While my patient was in the hospital, we could not provide him with any information about when he was leaving or when he would follow up with his doctors. After being discharged, he was sent to a different prison and was housed in its medical facility. Scared and alone, he began to decline quickly. Initially, his wife wasn’t allowed to visit. When she finally got permission, she was alarmed to find him so ill and she struggled with being apart from him.
Within a few weeks, he became acutely sick with an infection, and was admitted to a hospital near the prison. His wife traveled two hours each way to see him. His children had to get special permission to visit, and his daughters initially had trouble getting approved because they did not share his last name. His wife told me she sat at his bedside and sang him their private love song, over and over.
When his time came, she was in a car making the long drive home for the night, and a corrections officer was at his side. A date to review his application for release had been set for four weeks after the night that he died. His wife later lost her job for having spent so much time with him.
Our aging, ill prisoner population is both a humanitarian crisis and an economic challenge that demands the collaborative attention of physicians, corrections officials, legislators and advocates who can devise national guidelines for medical parole. Dr. Brie Williams, a palliative care physician at the University of California, San Francisco, who is an expert in correctional health, has called for a national commission to develop an evidence-based approach to address the compassionate release process, with an eye toward reducing the red tape that can tie up critical cases when every day matters.
It shouldn’t be acceptable that my patient, who posed no danger to the community and who had a family who loved him, should have died incarcerated. He deserved the chance to make peace at the end of his life, to be with family. If we value sparing other people this kind of death, we need a fairer, more functional and quicker system that makes compassionate release a real possibility.
Complete Article HERE!
MY LIFE AS as I knew it changed forever on the 10 August 2009. I was in Lourdes, France on a pilgrimage with my elderly mum, my sisters and other family members.
On that morning we were visiting a tiny village called Bartrès. After mass, we were strolling back towards the buses laughing and joking and in very high spirits, happy and content and carefree. What happened in the next few moments will haunt me forever.
My sister June answered her phone, and immediately I knew whoever was speaking to her had upset her. Not for one moment did I imagine the impact that phone call would have on my life. She looked straight at me and her words were, “Paul said Debbie is dead”.
I dropped to the ground. Every horrendous emotion ripped through me: devastation, heartbreak, sadness, the impact was unbelievable. I felt I couldn’t breathe, I thought I was going to die. My darling, beautiful, only daughter Debbie was gone and I never even got to say goodbye, or hold her one more time.
My beautiful daughter
No, I thought, it couldn’t be right. Someone got it all wrong. I tried to speak to my husband Paul but we were inconsolable. My two sisters and I travelled back to the hotel in a car. When we arrived I then had to tell my beloved mum that our Debbie had died. My mum adored her as she was their first granddaughter and they looked after her when I went back to work after she was born.
My mum was heartbroken, and as the realisation began to sink in all I wanted to do was get home. Debbie had taken my young niece Lauren for a mini-break to London, and they had arrived back to Cork the night before after having a great weekend away together.
They headed off to bed after texting me goodnight. The following morning Lauren woke to find Deb at the end of the bed. Having tried to revive her and gotten no response, Lauren went and got my son David.
Immediately, Dave knew she was gone. He telephoned his dad and the emergency services and then that life-changing call to tell me what no parent ever wants to hear.
Debbie died of Sudden Unexpected Death in Epilepsy – SUDEP. At 16, Debbie had her first epileptic fit and for ten years she was on medication and managed it very well. A few weeks previous to her death, her consultant started to wean her off her meds. She died one month later at the age of 26.
Realising she is gone
Today, six years on, my life is so much different and so much has changed because Debbie is gone. There isn’t an hour of any day that I don’t think of her or long to see and hold her, but yes, life must carry on and I too must go on living.
I have a loving husband and a great son and an amazing extended family and they too mourn and miss her so much. All the love I had for Deb is now for everyone else.
After Debbie died, I went looking for people who were also bereaved parents and found Anam Cara. It was perfect.
Paul and I went to our first meeting three months after Debbie passed. In Ireland every year 2,100 families experience the death of a son or daughter. For some families the death has been expected because of illness while for others it’s sudden through accidents, suicide or substance abuse.
At Anam Cara we focus on the similarities of our loss rather than the differences, and have found a level of support and understanding that others cannot offer. What unites us all is that we are all bereaved parents.
Anam Cara has also just produced a series of information videos in which bereaved parents speak on different themes such as ‘Sudden and Traumatic Death’ or ‘The Grieving Family’.
Complete Article HERE!
Adam Conover’s truTV show Adam Ruins Everything is airs the perfect episode this week: “Adam Ruins Death.” Among the death-related subjects Conover breaks down in the episode is how the American funeral industry takes advantage of grief for huge profits, and if Conover has his way, a whole lot of people will be making — or revising — their own funeral plans.
After Saint Nicholas’ bones were looted from his tomb in Turkey about 700 years after he died, cities in Italy and Ireland claimed to have stolen the bones. For centuries there was debate about which city is home to the grave of beloved Old Saint Nick. While the Basilica di San Nicola in Bari, Italy was widely accepted to be home to the relics of Saint Nicholas, there were two other cities that alleged to possess the grave of St. Nicholas: Venice, Italy and Newtown Jerpoint, Ireland.
Saint Nicholas was born around 270 AD to a wealthy family in the village of Patara in modern Turkey. He became well-known for his charitable nature because he gave away his fortune to help the sick and the poor. Nicholas was so famous for his kindness that he eventually became the basis for the Santa Claus legend. He was eventually elected Bishop of Myra, a Roman city in modern day Turkey, despite not being a priest at the time, possibly because his uncle previously held the position.
Nicholas died in 343 AD and his remains were eventually interred at St. Nicholas Church in Myra. After his death, Nicholas was recognized as a saint locally before the Roman Catholic Church had a formalized canonization process. Nicholas’ tomb became a popular pilgrimage site that produced a lot of money for the local economy, especially when monks discovered water in the tomb that could be harvested and sold. The monks believed that Nicholas’ bones produced this liquid, which they called manna, and claimed that it had healing powers.
In 1087, sailors from Bari, Italy traveled to Myra and visited the tomb of St. Nicholas with an ulterior motive-steal the relics and bring them back to Italy. Some believe the Christian sailors stole the skeletal remains to save them from the invading Muslim Seljuk Turks, while others think they were stolen to bring money from the lucrative pilgrimage industry to Bari.
When the bones arrived in Bari in May of 1087, the townspeople vowed to build a basilica to house the relics. Saint Nicholas’ crypt was completed in 1089 and Pope Urban II translated the relics and consecrated the shrine at the Basilica di San Nicola.
The bones continued to secrete the famous manna in the new tomb in Bari. Since 1980, the liquid isharvested from the bottom of the tomb on May 9th, the Feast of the Translation of S. Nicholas from Myra to Bari.
In 1957, Luigi Martino, an anatomy professor at the University of Bari, led a team that carefully examined and documented St. Nicholas’ bones in Bari. The skull was in pretty good condition but the rest of the bones were fragmented and fragile. Martino found that these remains belonged to an elderly manbetween 72 and 80 years old, which fit Nicholas’ age at death of about 75 years old.
But for centuries Venetians claimed that the church of San Nicolò al Lido also possessed the bones of St. Nicholas. They believed that when troops sailed from Venice to fight in the First Crusade in 1099 they stopped off in Myra. During this visit, these sailors visited St. Nicholas Church and robbed the saint’s tomb and stole an urn with an inscription, “Here lies the Great Bishop Nicholas, Glorious on Land and Sea.”
For centuries Bari and Venice had a heated dispute over who really had Nicholas’ bones. So Luigi Martino, the anatomist who examined the bones in Bari in 1957, was allowed to look at the Venetian bones in 1992 to settle the debate. He discovered that the Venetian bones were broken into “as many as 500” pieces that were brittle and delicate. The bone fragments in Venice were in the same poor condition as the bones in Bari.
Martino found that the skeletal remains in Bari and Venice are likely from the same man because the pieces of bone stored at San Nicoló al Lido were fragments of body parts missing from the body interred at Bari. It’s thought that the Venetian sailors stole the fragmented bones left behind after the Barian theft in 1087. The Venetian bones, however, reportedly don’t secrete manna.
But Irish historians allege that the body of Saint Nicholas is really buried in an abandoned medieval town in Ireland. Central to the Irish claims to St. Nicholas’ grave are the de Frainets, a French family who participated in the Crusades. In one tale, two knights named Den and de Frainet robbed the Nicholas’ relics from the Basilica in Bari on their way home from the Crusades and brought them to Ireland.
In another story, the de Frainets helped to steal Saint Nicholas’ relics from Myra and brought them to Bari, a time when the town was under the control of French Normans. When the Normans were pushed out of Bari, the de Frainets moved to Nice, France and took Saint Nicholas’ remains with them. The relics remained in France until the Normans lost power in the area.
Nicholas de Frainet brought the bones to Newtown Jerpoint, a medieval town where his family owned land. Nicholas de Frainet built a Cistercian Abbey at Jerpoint where St Nicholas’s remains were buried in 1200. Although Newtown Jerpoint is deserted, the abbey is stands.
While this theory seems to be a tactic to draw pilgrims to the area, there is a bit of credibility to the Irish claim. At Jerpoint Abbey there is a grave slab that seems to depict the body of St. Nicholas and carvings of the heads of two Knights, Den and de Frainet, who stole the relics from Bari.
The Turkish government seems to believe the Italian claims to possess the elderly bishop’s bones. Since 2009, the Turkish Ministry of Culture has repeatedly petitioned the Italian government and the Vatican for the return of Saint Nicholas’ bones because they were illegally obtained.
Complete Article HERE!