Tag: Death And Dying

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How Americans’ refusal to talk about death hurts elderly people

by Sarah Kliff

In my family, we don’t really talk about death. But, every now and then, we joke about it.

For some reason, there is a running joke among my immediate family about how my parents will die. Specifically, my brother and I will come home for Thanksgiving one year and find them decomposing on the couch.

Yes, this is a bizarre thing to crack jokes about. But it’s also, in its own, ghoulish way, a bit of a fantasy — an affront to the way that Americans tend to die in the 21st century, with ticking machines and tubes and round-the-clock care. In this joke, my parents’ death is a simple, quiet, and uncomplicated death at home.

I joke about death because I am as terrified of having serious end-of-life conversations as the next person. Usually I don’t have to think much about dying: my job as a health-care reporter means writing about the massive part of our country devoted to saving lives — how the hospitals, doctors, and drugs that consume 18 percent of our economy all work together, every day, to patch up millions of bodies.

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But recently, the most interesting stories in health care have been about death: the situations where all the hospitals, doctors, and drugs in the world cannot halt the inevitable.

In September, Ezekiel Emanuel — an oncologist, bioethicist, and health-policy expert — wrote a powerful essay for The Atlantic about why he will no longer seek medical treatment after he’s 75. “Living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived,” he wrote. At 75, Emanuel says, he will become a conscientious objector to the health-care system’s life-extending work. “I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not ‘It will prolong your life.’ I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative — not curative — treatments if I am suffering pain or other disability.”

The following month, Atul Gawande, a surgeon, published his new book, Being Mortal: Medicine and What Matters In the End. He argues that his profession has done wonders for the living, but is failing the dying. “Scientific advances have turned the processes of aging and dying into medical experiences,” he writes. “And we in the medical world have proved alarmingly unprepared for it.”

After months of watching this debate unfold, I’ve realized something that feels, to me at least, like a revelation. This conversation isn’t about death at all. “Death” is the word that confuses the conversation, that makes people too afraid, and too angry, and too frantic to keep talking. This conversation is really about autonomy. It is about what makes life worth living, and if, in keeping people alive for so long, we are consigning them to a fate worse than death.

When death came quick and fast, there was no fight to remain autonomous. Two graphs near the beginning of Gawande’s book help make clear how recently this tension developed. There is this first graph, which shows what life used to be like a century ago: moving along, steadily, until some horrific event happened. Maybe it was a disease, maybe it was a car accident (or, even earlier, a horse and buggy accident). Whatever the event, death happened quickly.

(Metropolitan Books)

Modern medicine has done incredible things. A woman born in the United States in 1885 had an average life expectancy of just over 44 years. I was born in 1985 and, thanks to advances in technology and sanitation, my life expectancy is 82. But these improvements have also changed, and extended, how we die. “The curve of life becomes a long, slow fade,” Gawande writes.

(Metropolitan Books)

That slow, long fade means we get to live longer, but often at the cost of our autonomy, and, in the view of some, at the cost of our most essential self. Autonomy — the freedom to see the people we want, partake in the activities we enjoy, and wake up each morning to our own agenda — is a value that arguably all of us hold dear. Even as physical independence disappears, it is possible (albeit more challenging) for autonomy to remain and for the elderly to retain control of how they spend their days.

But aging makes the facilities, both mental and physical, that we need to maintain our autonomy, weaker. The activities we enjoy and the ones we find core to our identity become more difficult to pursue.

As we get older, we lose the mastery we once had over the world around us, the admiration we once inspired in those we loved. Simple tasks — driving to a family member’s home, grocery shopping, preparing meals — become harder. The things we want to do aren’t always things we can still decide to do. Emanuel writes about the plight of his father, who had a heart attack followed with a bypass surgery at age 77. It was more difficult to do the things that defined his existence:

Once the prototype of a hyperactive Emanuel, suddenly his walking, his talking, his humor got slower. Today he can swim, read the newspaper, needle his kids on the phone, and still live with my mother in their own house. But everything seems sluggish. Although he didn’t die from the heart attack, no one would say he is living a vibrant life.

Emanuel doesn’t see this as unique to his father. He thinks this is the norm — that we have fooled ourselves into believing we have prolonged life, when instead we have prolonged the process of death. He writes that half of people 80 and older have functional limitations, and a third of people 85 and older have Alzheimer’s. And as for the remainder, they, too, slow and stumble, in mind as well as body.

“Even if we aren’t demented, our mental functioning deteriorates as we grow older,” he says. “Age-associated declines in mental-processing speed, working and long-term memory, and problem-solving are well established. Conversely, distractibility increases. We cannot focus and stay with a project as well as we could when we were young. As we move slower with age, we also think slower.” We become necessarily capable of making the decisions that we used to. Our bodies and brains simply won’t allow it. This isn’t to say autonomy disappears, but that it takes more support and conscious effort to plan.

Emanuel’s argument is fundamentally pessimistic about the future that we all face: it suggests that, even as we learn more about extending life, we won’t be able to improve the quality of life that precedes death.

Gawande’s book acknowledges that the body will break down, too. The second chapter, “Things Fall Apart,” is devoted to the ways that our body — from the color in our hair to the joints of our thumbs — diminishes at the end of life.

There are sections from this chapter that haunt my nights. The brain shrinks an astonishing amount in the course of a normal lifetime, with the frontal sections that control memory and planning diminishing the fastest. “At the age of 30, the brain is a three-pound organ that barely fits inside the skull,” Gawande writes. “By our seventies, gray-matter loss leaves almost an inch of spare room.” This explains, by the way, why falls can be so damaging for the elderly: their brain has a spare inch of space to get jostled around.

“Living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”

Most of us look at nursing homes — with their scheduled meals, constant supervision, adult diapers, wheelchair-bound residents, and depressing bingo nights and we think: I do not want that. I do not want to give up control over my own life, my ability to see the people I want to see and do the things I want to do. I do not want to live a life where I can’t dress myself, where I’m not allowed to feed myself, where I’m barred from living any semblance of the life that I live right now.

(Shutterstock)

As Gawande points out, assisted living and nursing facilities sometimes rob residents of the autonomy they’d have elsewhere. A patient who is bedridden, for example, likely ends up eating on a schedule to fit into the nurse’s rounds — not whenever they feel like having a snack. Getting dressed can be handed over to staff because they can do it more efficiently.

“Unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls,” he writes. “Gradually, that’s how everything begins to go. The tasks come to matter more than the people.”

But somehow, millions of Americans end up with life: there are 1.5 million nursing-home residents in America right now. On average, those nursing-home residents live in these facilities for two years, three months, and 15 days.

Here, however, Gawande identifies an unexpected culprit: the young, not the old.

At one point in the book, Gawande speaks with Keren Wilson, the woman who opened the country’s first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can’t ever look at the issue in the same way again. “We want autonomy for ourselves and safety for those we love,” she says.

One reason that nursing homes are so soulless is that it’s often not the residents who made the decision about where they would live. Instead, it’s their caretakers — often adult children — who chose the home, and their end-of-life priorities are frequently different from their parents’. Namely, where their parents value autonomy, children value safety. Wilson continues:

Many of the things that we want for those we care about are the things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.

It’s the rare child who is able to think, “Is this place what Mom would want or like or need?” It’s more like they’re seeing it through their own lens. The child asks, “Is this a place I would be comfortable leaving Mom?”

Gawande argues that what’s wrong with how we die now is that the patient — the person facing the end of life — is not the decision-maker. The locus of power shifted away from the people who will actually experience living in a nursing home and into the hands of their full-grown children, who often pay much of the bill.

Gawande and Wilson don’t argue that children are acting maliciously, trying to thwart the life that their parents wish to lead. It’s just that grown children and their elderly parents often have conflicting views of what matters at the end of life. Children often want every precaution taken to prevent injuries and falls. The elderly often want to live as autonomous a life as they can, even if it entails more risk. There’s one 89-year-old woman Gawande talks to who makes this point especially clearly, echoing what the dozens of other elderly interviewees told him:

“I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days … it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

One of the more depressing anecdotes in Gawande’s book details how food has become a battleground in nursing homes; the “Hundred Years War,” as he describes it. The battles — with a diabetic who hoards cookies, the Alzheimer patient who wants to eat at non-standard meal times — exemplify the tensions between safety and autonomy that pervade the modern nursing-home experience.

“We make these choices all the time in our home and taking those away from people takes away really fundamental things about who they are, what makes a life worth living,” Gawandetold me in an interview. “The biggest complaints about patients in nursing homes — by the way you can get a report filed against you in a nursing home — are about violating food rules. So you’ll see Alzheimer’s patients hoarding cookies. Give them the damn cookie. They might choke on it, but what are we trying to keep them alive for? Let’s allow some risk, even in the Alzheimer’s patient.”

Section 1233 begins on page 425 of the House’s final draft of the Affordable Care Act. It’s a relatively tiny portion of the law, taking up nine of the bill’s 1,017 pages. It didn’t have much of anything to do with Obamacare’s main goals of expanding coverage or reducing health-care costs.

But Section 1233 became the most politically toxic section of a law rife with contested projects and programs. Section 1233 is where Sarah Palin initially found the so-called “death panels” that would be among the most memorable, and ugly, skirmishes in the Obamacare debate.

Patients, Palin wrote in an August 2009 Facebook post coining the term, “will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide … whether they are worthy of health care.” When asked where she found these death panels in the law, Palin’s spokesperson pointed to Section 1233.

But Section 1233 did nothing of the sort (PolitiFact ultimately named “death panels” its lie of the year in 2009). The provision simply allowed Medicare to reimburse doctors when they provided patients an explanation of “the continuum of end-of-life services … including palliative care and hospice.” This wasn’t a death panel. It was an end-of-life care consultation — a conversation where a doctor would tell a patient about his or her options. They could discuss important issues like would the patient prefer to die in the hospital or at home? If there is no treatment left, would they consider hospice care? What are the things they value at the end of life and how can those be achieved? The doctor would not make the decisions for the patient — the patient and family would make up their own minds about how to proceed.

The “death panel” rhetoric quickly became a popular cudgel conservatives used to bash the law. The Independent Payment Advisory Board, for instance, which would have unilateral power to cut Medicare reimbursement rates, became a “death panel.” (The board, meanwhile, has no power to change the type of benefits Medicare provides or which patients get them — it only has authority over what Medicare pays).

The 2009 Sarah Palin Facebook post that coined the term “death panel” (Facebook)

Death panels signs and slogans popped up at town-hall protests across the country; news stories mentioned the term 6,000 times in August and September, Politifact later found. By October, it still came up at least 150 times per week — and Section 1233 was doomed. Legislators saw the backlash and quickly relented. They left the end-of-life planning provision on the cutting-room floor.

The explosive death-panel debate, touched off by the smallest, weakest attempt to talk about the inevitable, shows just how impossible it is for America and the people we send to Washington to have this particular discussion.

Dying in America is expensive. The six percent of Medicare patients who die each year typically account for 27 to 30 percent of the program’s annual health-care spending. During the last six months of life, the Dartmouth Atlas has found that the average Medicare patient spends 9.9 days in the hospital and 3.9 days in intensive care. Forty-two percent see 10 or more doctors.

In Washington, something so costly typically forces constant conversations about cutbacks and trade-offs and balancing priorities. But with end-of-life care, the opposite tends to be true: we can’t talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death.

But that’s left, in its place, not a thoughtful approach towards end-of-life care, but a dumb default that pushes everyone — doctors, patients, and families — toward more tests, surgeries, and treatments, no matter the cost in pain and disability to the patient.

The fear at the heart of the death-panel debate was a fear about the loss of autonomy: that a group of anonymous bureaucrats would make the decisions that ought to be reserved for the terminally ill.

That’s a terrible system. No Democrat, Republican, nor any health-policy expert I’ve talked to sees that as the right approach for America.

But they also point out that our haphazard approach to death isn’t especially good at respecting the rights of the dying, either. We don’t like to think about death — and so we don’t. The death-panel debate affirmed that legislating end-of-life issues is terrible politics, so politicians simply avoid it. The result isn’t a more compassionate policy, but a vacuum of policy.

The dearth of debate and discussion doesn’t eliminate the difficult, heart-wrenching decisions that patients, doctors, and their families must make at the end of life. It arguably exacerbates them: not paying doctors to discuss end-of-life issues with Medicare patients, for example, likely means they know less about what patients want at the end of life. By the time the issue simply can’t be ignored, it’s often too late — the patient is already incapacitated or too delirious to articulate his or her priorities.

Much like nursing homes get to decide who eats what, and when, unarticulated end-of-life decisions get outsourced to family members and doctors who make their best guess at what a loved one would have wanted. Patients, in a way, end up living the exact scenario that the death-panel rhetoric made so fearsome: giving over decisions about their last moments of life to another party.

(Shutterstock)

There’s a beautiful story that Gawande tells in his book, about a man named Jack Block. At 74, he had to decide whether to undergo a surgery to remove a mass growing on his neck. The procedure ran a 20 percent chance of paralyzing him from the neck down — but without it, the growth would definitely leave him unable to move his legs or arms.

This is the moment, Gawande argues, that there has to be a discussion about what makes life worth living. Gawande interviews his daughter, Susan, who is a palliative-care specialist. And even though this is her line of work, she tells him that the conversation about this surgery was “really uncomfortable:”

We had this quite agonizing conversation where he said — and this totally shocked me — ‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’

Susan says this wasn’t the answer she expected; she didn’t even remember her father watching football. But just hearing what mattered — knowing what Jack would consider a life worth living — ended up guiding all further decisions. When Susan’s father developed spinal bleeding, she asked the surgeons: will he be able to watch football and eat ice cream? The answer was yes. They kept going with treatment, until the answer was no.

“Few people have these conversations, and there is good reason for anyone to dread them,” Gawande writes. “They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.”

But these conversations could be the starting point for a health-care system that cares just as well for patients who will heal as those who will not. They’re the place where autonomy gets defined for each patient: whether a life worth living means one where they are able to see friends, or drive their car, or eat chocolate ice cream, or the millions of other things they may hold dear. Those conversations don’t happen now. And as long as that’s the case, all of our autonomy, as we inevitably grow old and become more dependent, is at risk.
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Perspective on death from a dying man

Rev. Ted Dotts diagnosed with prostate, bone cancer in September

By Sarah Rafique
The Rev. Ted Dotts and his wife, Betty, make the same drive to Santa Fe, New Mexico, they’ve made dozens of times in the past.

The family stops on a country road. Ted stands outside, listening to the wind as he often enjoys during the road trips. He turns around to look at his children and grandchildren, but they’re already in the car driving away. He’s alone.

Ted wakes up.Ted Dotts

He rustles around and realizes it was a dream Still, it is the closest the 80-year-old Lubbock resident has ever been to fearing death.

Dotts fears becoming an ugly, grouchy old man when medication can’t alleviate his physical pain. But he doesn’t fear death.

He knows it’s inevitable.

He has known that ever since he was diagnosed with prostate and bone cancer in September — ever since he decided to opt against curative treatment for the crippling disease, refusing to put the burden of his health on taxpayers.

“My life — I’m richly happy, probably happier now than I’ve ever been, and that lasts through the day most of the time,” said Dotts, pastor emeritus of St. John’s United Methodist Church. “Death is a matter of releasing me from anything that’s less than God … and I get ushered into a new life and then I’m trusted to make whatever is to be made.”

Preparing for death

Two yellow folders are taped on a closet near the entryway of the Dottses’ home.

Betty’s folder is simple: An out-of-hospital “Do Not Resuscitate” order in case she dies at their apartment at the Carillon LifeCare Community in Lubbock.

Ted’s orders, written in all caps, are more detailed: No CPR. No hospital. No EMS-ambulance. No ER. No antibiotics. No tracheotomy. No breathing assistance devices.

While the doctor’s orders stop there, it’s followed by 12 phone numbers for Betty to call when her husband inevitably dies.

The couple has talked about death for years — not every day, but enough to understand each other’s end-of-life wishes. But after Ted’s cancer diagnosis, death became more imminent.

“(When I found out,) I had a feeling of the heart just sinking, like the bottom had dropped out,” Betty said. “But I also, in my thinking, knew ‘Alright, this is a time to prepare yourself.’ ”

She is not only preparing herself for the emotions that will surround the death of her husband, but the practicality of it.

Without Ted’s help, Betty will be completely alone in running their household, including finances that Ted manages online.

“I don’t like computers, so I’m learning about the computer,” Betty said. “He’s very careful with all our money and how it goes and where it goes to and so forth, so he’s teaching me.”

When a person maps out different scenarios for his death and decides what he’d like to do in each situation, it lifts a burden from any family who may be stressed out about what to do following a terminal diagnosis, said Charley Wasson, executive director and CEO of Hospice of Lubbock.

He said it also takes away second-guessing and allows families to make end-of-life decisions confidently instead of out of fear.

As Betty takes care of her husband during his illness, Ted knows she’s already suffering the grief of losing him.

Ted also experiences grief in not being able to take care of Betty when it’s her time to die.

“I’ll be gone and who will be that close to her? Children, of course, but they have their own lives,” Ted said. “You can hire doctors and nurses, but it won’t be anyone that close to her as she is to me. … That’s a loss that I have and every day I have to see her and know that she’ll have to go through much of this death by herself and won’t have me there to do what she does for me.”

Making the decision

The shots would cost $5,000.

It was too much.

Ted knew the treatment would be covered by Medicare. But, he already had his rules in place, including not using community resources to prolong his life for only a couple of months when he had already exceeded the life expectancy for the average American male.

After the cancer diagnosis, the doctor told him about the recommended treatment, including radiation, surgery and, of course, the shots.

“After you’re 80 years old, some studies show you’ll spend more on the last six months of your life then you spent your first 80 years of your life,” Dotts said. “Some of those expenses are extremely high.”

Created in 1965, Medicare was intended to answer growing reports of impoverished seniors languishing or dying because they lacked health insurance.

According to Centers for Medicare & Medicaid Services, more than 50 million seniors and nearly 3 million Texans are enrolled in the government program. Even though Medicare spending is trending down by nearly $1,200 per beneficiary, overall spending grew 3.4 percent to $585.7 billion in 2013, or 20 percent of the nation’s total health expenditures.

Dotts doesn’t want any part in it.

Instead of spending Medicare funds on prolonging his already fulfilling life, Dotts said he would rather those funds be available for his 18-year-old grandchild or 40-year-old child.

That’s one of the main reasons that outside of pain medication, Dotts isn’t taking anything to treat the cancer.

“I’ve known Ted for years and so he had a very thoughtful, long progression of thought. He’s held this standard that this is how he’s going to die: He’s not going to use community resources and he is going to utilize hospice for years,” Wasson said. “That’s not only a gift to himself but a gift to his family and the people around him. He’s very comfortable in that decision.”

Wasson said he agrees with Ted’s decision to focus on quality of life rather than prolonging it.

“If many people had the opportunity to talk to Ted and his rationale about why he made that decision many years ago, why he’s held true to that decision for many years, I think a lot of people would see wisdom in it,” Wasson said. “But I don’t think a lot of people get to because they don’t have the conversation.”

Ted and Betty moved to the Carillon LifeCare Community seven years ago, knowing they’re at the other spectrum of life.

Although Betty said Americans may be living longer, there’s still a responsibility to take care of future generations.

“It’s just not fair for our children and grandchildren, just because he could spend a lot of money (on cancer treatment) and Medicare would pay for it,” Betty said. “But somebody is paying for that and money is going to be taken from here to give to there and he said, ‘I do not want to take the community resources from others just so I could live a few more months.’ ”

Dealing with the pain

Betty imagines her husband falling to the floor as he’s walking up the stairs to their apartment. Other times she pictures him stumbling and pretending to faint. Betty knows it’s not real; they’re simply imagining for the inevitable.

“There’s so much involved. It’s a major event in life to die and we try to get through it without talking about it, but then all of a sudden you’ll be faced with it,” Ted said. “We get to share that and the rich depth of (imagining death). I thought we were pretty close but we’ve gotten closer than I ever dreamed now that death is next door.”

Although he hasn’t broken any bones yet, Ted’s pain varies on a daily basis. Eventually it was bad enough that he received a shot that doctors assured him was not for longevity, but rather to help alleviate the severe pain.

“They warned him the pain is going to get worse for two weeks and then it will drop, and so on a scale of 1 to 10 he got at least to a 7 and maybe higher,” Betty said. “You can’t sleep when you have that kind of pain, but then it did drop after two weeks and it’s gone down. … Many people live with pain and it’s learning to manage the pain. It’s not that he doesn’t feel it, but it’s where it doesn’t dominate him.”

Despite the pain Ted endures, Betty said she wasn’t surprised by her husband’s decision to receive palliative care rather than curative treatment.

“His personality is one in which he thinks things through and reasons things through, tries to see both sides and to see the larger picture. He does not just jump into something, knee-jerk,” Betty said. “Most mornings he will be studying for several hours and he studies not just the Bible or theology, but psychology or history and certainly death.”

Lasting legacy

By helping residents with paperwork for food stamps, the Dottses still connect with the community around them despite living in a retirement home. They know their pain will end soon and that it doesn’t compare to the suffering others endure daily.

Ted hosts local radio show “Faith Matters” but has contributed to the community in the past as a longtime clergyman and his work as former senior vice president of ethics and faith for the Covenant Health System.

The Dottses also started the first Parents, Families and Friends of Lesbians and Gays in Lubbock in 1993.

“We started the PFLAG and that was overshadowed with fear and anxiety of persecution or vandalism or maliciousness. I don’t think that’s near as possible now, plus you have gay marriage that has passed in several states so I think it’s a movement that’s thriving and flourishing and helping people care for each other,” Ted said. “I go to sleep at night, and Betty does too, very grateful that we got involved. … People who have same-sex love and they’re persecuted over it, it can make them mean and bitter but for the most part.”

And through panel discussions at churches around Lubbock, Dotts has also shared his end-of-life decision with the community, once again bringing to the forefront a topic that may be difficult for some people to face.

Wasson said he hopes Ted’s openness inspires residents to talk about end-of-life decisions and discuss at what point it becomes about quality of life, rather than treatment to add a few months or years of battling an illness.

“In America we are a death-averse society. We don’t like to talk about death, which is why Ted’s talk the other night was so special, because he was very honest and open about death and his journey,” Wasson said. “I think this is quintessential Ted. He is great at bringing people together and talking about the tough in life and doing it with a great amount of grace and eloquence.”

Accepting death

Ted doesn’t know if he has two months left to live, or two years. But, the couple’s faith puts them at ease.

“I don’t think God even notices whether we’re dead or alive,” Betty said. “It doesn’t matter that much; we are still loved by God whether we’re here or there, and what there is, we don’t know, we haven’t been there. But, it’s our faith and that trust (that) we’re going to be cared for and loved and it’s going to be alright. It’s going to be good so I don’t have to get all uptight (about dying).”

They do have their moments of grief, but the couple mostly laughs and teases one other.

They realize this time next year, Ted may be dead, but the talks about his death have brought them closer.

“It’s like being able to see into each other’s heart and to be right with them,” said Betty, who will turn 79 in a few weeks. “He kept saying he wanted to live longer so he could take care of me when I died, but he’s dying first.”
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Rural Doctor Launches Startup To Ease Pain Of Dying Patients

By April Dembosky

Dr. Michael Fratkin is getting a ride to work today from a friend.

“It’s an old plane. Her name’s ‘Thumper,’ ” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182.

Fratkin is an internist and specialist in palliative medicine. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis.

He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they’re willing — and not willing — to undergo.

In rural Humboldt County, in the far northern reaches of California, Fratkin is essentially the only doctor in a 120-mile stretch who does what he does.

“There’s very little sophisticated understanding of the kinds of skills that really matter for people at the very end,” he says.

It takes 30 minutes to fly from Eureka, Calif., to the Hoopa Valley Indian Reservation. On this trip, Fratkin is going to visit a man named Paul James, who is dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says.

The plane touches down on a narrow landing strip. A loose horse runs next to the plane as we taxi down the runway.

Fratkin is here to make a rare house call. He met Paul and his wife, Cessie Abbott, at the hospital in Eureka. But the two-hour drive is too far for them to make often, so Fratkin comes to them.

It’s a visit that Cessie, in particular, has been waiting for. She and her husband know he’s dying. But it’s hard for them to talk to each other about it.

“Dr. Fratkin has kind of been my angel,” she says. Fratkin gets her husband to open up, she says, and reveal things he might not otherwise, because Paul’s “trying to be strong for us, I think.”

Cessie tells Fratkin that the pain in Paul’s belly has been getting worse.

“He’s moaning in his sleep now,” she says.

“Have you ever taken morphine tablets?” Fratkin asks Paul. Cessie explains that those tablets didn’t work for her husband. “Have you ever taken methadone?” Fratkin asks him. “We’re going to add a medicine that is long-acting.”

Fratkin believes there should be a spiritual component of these discussions, too.

“Yeah, Paul, there’s more to you than this body of yours, isn’t there?” he says, a refrain he repeats with almost all his patients.

“Oh yeah,” Paul says, and then goes quiet for a bit. He’s a member of the Yurok tribe, and talks about how happy he is when he’s in the mountains, hunting with his grandsons.

Cessie says she can hear Paul praying when he’s alone in the bathroom. So Fratkin asks him to light some Indian root and say a prayer now.

“Great spirit, that created this earth …,” Paul begins, his eyes clenched shut.

By the time Fratkin leaves the Hoopa Valley, he’s spent half a day with one patient. This is something the hospital in Eureka just couldn’t afford to have him do.

Fratkin says he was under constant pressure to see patient after patient to meet the hospital’s billing quotas.

“It’s very hard for one doctor to manage the complexity of each individual patient and to crank it out in any way that generates productive revenue,” he says.

Fratkin decided he couldn’t, within the hospital system, easily provide the kind of palliative care he sees as his calling. So he decided to quit — and launch a startup.

“I had to sort out an out-of-the-box solution,” he says.

He calls his new company ResolutionCare. There’s no office, no clinic. Instead he wants to put the money for those resources into hiring a team of people who can travel and make house calls, so that very ill patients don’t have to get to the doctor’s office. When time is stretched, he plans to use video conferencing.

The key challenge is financing his big idea. Government programs like Medicare and Medicaid don’t pay for video sessions when the patient is at home. And they pay poorly for home visits.

So far, Fratkin has been cultivating private donors and is looking for foundation grants. He’s arranged an independent contract to sell his services back to the hospital he recently left. And he’s launched a crowdfunding campaign to back the training he’d like to do for other doctors of palliative medicine who practice in rural areas.

Down the line, Fratkin is even thinking of asking some of his more well-off patients to pay out-of-pocket for his services.

When he gets back to Eureka, after the visit with Paul James, Fratkin hops in his blue Prius and drives 30 minutes north to see Mary Maloney. She’s dying of esophageal cancer. She tried radiation and chemo for a while, but both made her feel awful. Fratkin was the one who told her it was OK to stop treatment.

“I mean, I love life,” Maloney says from the recliner in her home in Blue Lake. “I don’t want to let it go. But I don’t know if I’m willing enough to put myself through all the things I’d have to put myself through.”

Fratkin says he’s treated more than a thousand patients and, like other entrepreneurs with big ideas, thinks his startup could change the world. He knows he’s up against tough odds though — most startups don’t succeed.
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Pain management struggles in the 21st Century

By Tracy Woolrich

According to the American Pain Foundation, there are more than 50 million Americans living with chronic pain. What is unfortunate however is that chronic pain is often improperly treated – or not treated at all. Those with chronic pain will tell you that they feel that there is a war being waged against those who are truly in pain. The answer is to find treatments that work, empower yourself and educate those in the community.

pain-management

As a nurse with more than 30 years of experience I have witnessed more than my share of pain. During my student nurse days I remember the days of “Brompton’s Cocktail”. It originated in London’s Brompton Hospital and was a concoction made with morphine, cocaine, alcohol and chloroform water. It gained popularity in the 1970s through the Hospice movement with support of Elisabeth Kübler-Ross. However, with advancements during the 21st Century it no longer exists. I personally am glad, as from what I witnessed it did appear to reduce the patient’s pain however at a cost of the ability to have a level of awareness. The patient would be nearly in a coma from sedation. We have come a long way in the ability to control pain effectively. Obtaining and maintaining a proper dose however is another story.

In 2006, the American Pain Foundation surveyed their members and discovered that over 60 percent experienced breakthrough pain while taking routine pain medications. In addition, 75 percent also suffered from insomnia and depression. Activities of daily living were affected with over 25 percent indicating that even driving a car was too difficult to do.

chronic-painThat organization developed the Pain Care Bill of rights and encouraged patients to take an active position in their treatment plan. In my previous position working with chronic pain patients, I would frequently obtain guides and resource items from them to share with their healthcare providers.
In 2011, the Affordable Care Act required the Institute of Medicine to do a study about pain management. In that study it was reported that more than 100 million Americans are suffering from chronic pain. That is staggering and the highest numbers to date.

Despite the growing number of people that are in pain, the war on drugs rages on and in its path there is a tremendous amount of collateral damage. Patients that are truly in pain suffer, and organizations that become advocates and partners cannot sustain themselves. Regrettably in May 2012, the American Pain Foundation dissolved their organization due to lack of funding. They transferred a good deal of their education to other organizations and support groups in hopes of continuing their cause.

Their Pain Care Bill of Rights was a groundbreaking proposition in my opinion. It was an attempt to empower those in pain to take an active role in their care. One of the key concepts was the right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

Because of society’s drug addicted behavior, there have been more and more restrictions placed that are making it difficult for those in chronic pain to obtain relief. Misguided state and federal policies are restricting access to appropriate medical care for people in chronic pain. It is deterring even the most compassionate medical providers from treating anyone with pain conditions for fear of governmental scrutiny and penalties.

Better ways to manage pain are continually being developed. With relief as the goal, patients usually try various pain management techniques (often in conjunction) before they determine what works best for them. It is a very individual thing and may change over time.

Medications
There is a myriad of available medications that can be prescribed. From over the counter analgesics like NSAIDS (Motrin and Aleve) to Narcotics (Morphine, Hydrocodone, Codeine). While pain medications will assist in reducing the pain they do little to change the cause other than perhaps NSAIDS that may reduce swelling. As time goes on doses are often increased due to tolerance and often there are side effects such as constipation and stomach upset.chronic-pain-management

Exercise
Exercise can assist with pain relief in individuals with arthritis. Yoga, tai chi and water aerobics are all very helpful. Some with Fibro and chronic headaches may find the stretching portion helpful.

Massage
Massage can reduce pain, increase tissue circulation, relax tight muscles and reduce swelling. In addition it can reduce anxiety and depression and help promote a better night’s sleep. Patients with headaches, arthritis and traumatic injuries will find this helpful. Those with Fibro may find it too painful. Cranial-Sacral work or Reiki may be more appropriate.

Biofeedback
This uses a combination of combination of visualization, relaxation, visualization, and feedback from a machine that may help you to gain control of pain. Electrodes are attached to you and plugged into a machine that measures your muscle tension, blood pressure and heart rate. In time you are able to control your thoughts and tension and thus reduce pain and anxiety. It is very effective with headaches.

TENS Units
Transcutaneous electrical nerve stimulation uses low voltage electrical stimulation to block pain signals to the brain. This is accomplished through the placement of small electrode patches on the skin that is attached to a portable unit that emits a small electrical charge. It is used for pain in a localized area. Individuals with nerve pain such as diabetic neuropathy or trauma may find this useful.

Meditation / Relaxation
Through the use of guided imagery and meditation techniques, muscles can have reduced tension and general relaxation. Those with all forms of pain will find this helpful especially headaches and nec/back pain.

Deep breathing
Yoga type diaphragmatic deep breathing involved clearing your mind and focusing on slow deep breaths that are rhythmic. This method of breathing involves breathing in and out, slowly, deeply, and rhythmically. It is through its process of inhaling through the nose and exhaling through the mouth you can release tension and induce relaxation. All those in pain will find this helpful.

Water Therapy
Warm water baths or hot tubs can be soothing and relaxing for muscle and joint pain. Water aerobics is often easier on the joints and can increase range of motion. Patients with arthritis and fibromyalgia may find this helpful.

Heat
Hot showers or baths, hot packs, heating pads and paraffin wax baths to hands and feet are especially helpful with arthritic pain.

Cold
Cold therapy is a preferred treatment for some people as opposed to heat therapy. Most chiropractors will advice to use cold to reduce swelling and numb the pain to local injuries. Cold compresses or the simple act of wrapping a plastic bag filled with ice cubes, or frozen gel packs can be applied locally. Those with Reynaud’s should avoid the cold.

Pain Management Clinics
Pain clinics are for those who cannot be helped by medical and surgical treatment options by their primary doctors. It usually involves prescription drug management, physical therapy, nerve blocks and relaxation therapy. Often primary care doctors will refer you to such a clinic for pain management if you suffer from chronic pain. This is twofold. It may help to reduce your pain while allowing the attending doctor to eliminate having to explain his pain prescriptions to state and federal agencies!

Support Groups
Sometimes connecting with others that have similar circumstances can not only provide a wealth of information but inspiration to keep going. Only another person experiencing the same level of struggle can understand.

Take home message
Encourage your health-care provider to inform you about the possible causes of your pain, and possible treatments including alternative therapy. Request to have your pain be reassessed regularly and your treatment adjusted if your pain has not improved. Request a pain management referral if your pain does not subside.

Are there other methods you have used to reduce pain? Please leave a comment and explain your experience.
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‘Warehouses for dying people’: Are we prolonging life or prolonging death?

By Peter Whoriskey

The doctor floated through the intensive care unit, white lab coat flapping, moving from room to room, scanning one chart and then another, often frowning.criticalcare_4c1

Unlike TV dramas, where the victims of car crashes and gun shots populate the ICU, this one at Sentara Norfolk General, as in others in the United States, is more often filled with the wreckage of chronic disease and old age.

Of 10 patients Paul Marik saw that morning, five had end-stage kidney disease, three had chronic respiratory ailments, some had advanced dementia. Some were breathing by virtue of machines; others had feeding tubes; a couple were in wrist restraints to prevent them from pulling off the equipment.

For a man at a highly rated hospital surrounded by the technology of medical miracles, Marik sounded a note of striking skepticism: Patients too often suffer in vain attempts to prolong life, he said, because of the mandate to “do everything.” The urge to deploy every last aggressive medical technique, in other words, was hurting people.

“I think if someone from Mars came and saw some of these people, they would say, what have they done to deserve this punishment?” said Marik, gesturing to the surrounding rooms. “People might say we are prolonging life, but we end up prolonging death.”

aggressive end-of-life care3Critics of U.S. health care have long marshaled evidence against the overuse of aggressive end-of-life care, but the idea that many Americans are dying badly — subjected to desperate treatments in ways that are not only expensive but painful and medically futile — has gained currency of late.

This fall, a photogenic 29-year-old with brain cancer made the cover of People magazine with the decision to end her life on her own terms. About the same time, Medicare proposed that doctors be paid for discussing with patients their options for treatment — or not — at the end of life. And on the best-sellers lists is “Being Mortal,” a surgeon’s critique of the way the United States handles decline and death.

In it, author Atul Gawande warns, among other things, that “spending one’s final days in an ICU because of terminal illness is for most people a kind of failure.”

Marik’s long-standing argument, which is notable in part for coming from an ICU doctor, is this: The nation has double or triple as many ICU beds per capita as other Western nations, it spends inordinate amounts of money in the last months of life, and worst of all, this kind of care isn’t what patients want.

His doubts about end-of-life care appear to be widely shared among his ICU colleagues.

A 2013 survey conducted in one academic medical center, for example, found that critical care clinicians believed that 11 percent of their patients received care that was futile; another 9 percent received care that was probably futile, it said.

Marik blames, in part, people’s unwillingness to face up to the inevitable.aggressive end-of-life care2

“Americans not only don’t want to die, they are unwilling to accept the reality of death,” said Marik, who is also a professor at Eastern Virginia Medical School and chief of critical medicine at the school. “Unfortunately, old people get diseases and die.”

It pays to provide treatment

The remedy lies, in part, with hospices, which are hired to take care of patients after they opt out of aggressive end-of-life care.

Amid rapid growth, that industry has been marked by infrequent government inspections and, in places, lapses in quality. But when the service has been properly provided, families sometimes describe it as a godsend, and experts say hospices serve a critical role in the U.S. health system.

A number of factors, economic and personal, keep many patients from enrolling in hospice care, however.

For starters, it pays to keep dying patients undergoing more treatment, according to experts.

“Financial incentives built into the programs that most often serve people with advanced serious illnesses — Medicare and Medicaid — encourage providers to render more services and more intensive services than are necessary or beneficial,” according to Dying in America, a massive report issued in September by the Institute of Medicine.

But strains at a more personal level also keep patients in treatment.

Doctors are reluctant to disappoint a patient with the grim truth, and knowingly or not, keep false hopes alive. Families meanwhile sometimes overestimate the power of modern medicine.

aggressive end-of-life careTake, for example, the use of CPR, the technique that can restart a heart, but which, particularly in the elderly, can result in broken ribs, and even if successful in reviving a patient, may lead to a much-diminished quality of life.

“Have you ever seen it done on television?” Marik asks, rolling down a corridor with a class of students behind him. “They all wake up right away. But in real life, only about 5 to 10 percent of people — if they’re over 70 — leave the hospital alive.”

Indeed, a 1996 New England Journal of Medicine an analysis of popular shows like “ER,” showed that two-thirds treated by CPR survived until discharge.

“When CPR became widespread in the ’60s, it wasn’t considered ethical to perform it on people who are unlikely to recover,” Marik said. “Now it’s done all the time, regardless of the consequences.”

‘A warehouse for the dying’

Marik has been making his argument in published papers at least as far back as 2006, and his criticism echoes others in the field. An ICU doctor in Gawande’s book, for example, complains that she is running “a warehouse for the dying.”

“We’re kind of powerless to change the system — this is what society expects of us and what we are legally required to do,” Marik said. “But many clinicians are frustrated.”

Nurses, who interact with patients more, may be just as adamant about the issue. They see patients grimacing as they clean wounds around tubes into the lungs or stomach; they see confused patients trying to remove breathing equipment; they treat the bed sores of patients immobilized for long periods.

“There are cases where you honestly feel like you are just causing more harm or pain to the patient and you wonder if their family really understands what’s going on,” said Karen Richendollar, a nurse at the intensive care unit at Sentara Leigh Hospital here.

Surveys of intensive care nurses at 14 ICUs in Virginia, published in 2007 in the journal Critical Care Medicine, found that the leading cause of moral distress arises from the pressure to continue aggressive treatment in cases where the nurses do not think such treatment is warranted.

“The distress comes when there is no hope that whatever we are going to do will provide any different outcome,” said Becky Devlin, the supervisor in the ICU here. “The patient is going to die anyway, and we are just prolonging things. That’s where the distress comes in.”

For example, Devlin and Richendollar said, a woman then in their care was more than 90 years old, with blood pressure and severe kidney problems as well as severe dementia. She was being fed through a tube and had a urinary catheter.

Most imposingly, the woman was breathing via a ventilator, and to prevent her from removing the tube that had been inserted into her mouth and down her throat, restraints tied her hands to the sides of the bed.

“No one can be comfortable with all of that,” Devlin said. “Some of the family members are against further treatment, but there are others that make the decisions and they want to keep going.”

End-of-life planning key

One key way to avoid unwanted treatment, according to experts, is to solicit a person’s preferences for end-of-life care before a crisis arrives.

Toward that end, Sentara, which was ranked this year atop the “Best Hospitals in Virginia” by U.S. News & World Report, joined a coalition of hospitals and agencies on aging that in November launched a program to promote end-of-life planning in the Norfolk and Virginia Beach area. It has set up a Web site, asyouwishvirginia.org.End-of-life planning

The program hopes to inspire people to write down their wishes and appoint a health-care advocate to speak for them if they can no longer do so. Organizers will blanket the region’s religious group and elderly care organizations to encourage people to make end-of-life plans.

“Unfortunately when these situations [in the ICU] come up, families will say, ‘Doc, what should I do?’ But that’s not something that doctors can really answer,” said David Murray, director of the group, known as the Advance Care Planning Coalition of Eastern Virginia. “We need to hear from the patients or their representatives — earlier than we do now.”

Take, for example, one of Marik’s patients, a 72-year-old woman who’d come into the emergency room last month after her family found her confused.

Living at home, she’d long been beset by multiple health woes, mainly congestive heart failure and respiratory problems and bipolar disorder. Given her fragility, it would have been natural to have elicited her end-of-life wishes.

No one did, however, and at the hospital last month the hospital staff and the family spent several anguishing days discussing how best to proceed with her care.

Her labored breathing — her inability to draw in oxygen — was the central problem for the doctors. As she struggled for air, the carbon dioxide levels in her blood rose to dangerous levels. She grew anxious as a result, and this only worsened her breathing.

She was moved to the ICU.

The staff placed an oxygen mask called a biPAP around her head, fitting it snugly around her mouth and nose. The device forces oxygen from a hose into the nose and mouth, but it is often uncomfortable.

As a result, the patient was at risk of removing it. So in addition to being sedated, her hands were restrained — tied by cloth belts to the sides of her bed.

She could be heard that Monday calling out, at times, unintelligibly.

“Take me, Jesus,” she shouted at one point.

She wasn’t the only one bothered by the arrangement.

“The nurses and I were really uncomfortable — this poor little old lady,” Marik said. “She was an elderly demented lady with chronic end-stage lung disease. . . . We were subjecting her to a lot of pain and indignity with very little potential for gain. We shouldn’t be forced into that kind of situation, but we often are.”

By Wednesday, the hospital’s palliative medicine team met with family members, and in the coming days, the patient’s sister and daughter decided to forgo aggressive treatment and opt for measures meant primarily to keep her comfortable.

The uncomfortable mask and the wrist restraints came off. Her vitamins and cholesterol drugs were stopped. She was given medicine for her anxiety, which family members said had been a long-running source of trouble for the patient.

The patient was also prescribed morphine, a drug sometimes avoided until the end of life, but one that relieves pain and calms breathing. Nurses were instructed to give her morphine when her breaths exceeded 20 per minute.

Placed under hospice care, she was sent to a nursing home the next Monday.

There, the patient seemed to rally, regaining the ability to interact with family members. The color returned to her face. She even said she was enjoying music they brought in.

A few days later, after the family had the chance to call in distant relatives, she died.

Marissa C. Galicia-Castillo, a doctor in the hospital’s palliative medicine department, said it is common for patients to die in the ICU hooked up to machines.

“Fortunately . . . [this patient] was able to get out of the hospital into a more home-like environment, enjoy some familiar comforts, visiting and talking with loved ones before the natural end of her life,” she said.

But it wasn’t without the torment before the family decided that the aggressive measures may be introducing more pain than relief. Sometimes frail elderly patients languish weeks or months before family members opt for the comfort measures. Sometimes they die hooked up to multiple machines. In this sense, this patient constituted a success.

“We all knew she was dying, and that was the tragedy,” Marik said. “We knew we were just prolonging her death.”

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Chinese Funeral Etiquette

Traditional Chinese funeral is an elaborate ceremony that involves a number of rites and rituals. However, the etiquette that needs to be followed during these ceremonies is worth noting.

By Rave Uno

The funeral or death ceremony is one of the most important rites of passage that virtually every human being has to go through. Funeral rites differ from country to country and from culture to culture, but all of them are unanimously aimed at ensuring that the soul of the deceased enters the afterlife without any hurdle. People have been following various funeral customs and practices from time immemorial, and we indeed have ample archaeological evidence to prove that certain patches of land served as cemeteries and that certain platforms were used particularly to carry out last rites on a person. Even today, there are a plethora of funeral rites and etiquette that cultures across the world follow, and it is indeed interesting to know that some of these are ages old, owing to the antiquity of the culture itself.

China is, without doubt, one of the oldest surviving civilizations of the world. People of today’s China value their age-old customs and traditions as much as they value advancements in technology and modernization. For the Chinese, the funeral rites are an important part, not only of their religious lives, but also social lives.

Chinese Funeral: Protocol to be Followed

Funeral rites occupy a very important place in the traditional Chinese society, and all the set rules and etiquette need to be very strictly followed. It is believed that the one who fails to adhere to the rules and etiquette of the funeral invites bad luck to his/her family. Traditionally, the Chinese people are known to host lavish funeral ceremonies for their deceased near and dear ones because elaborateness of the funeral ceremony determines the status of the family in the society. This Buzzle write-up features some of the important etiquette to be followed during a traditional Chinese funeral.

Colors to Wear

► If you are attending a Chinese funeral as a guest, make sure that you dress yourself in sober and dark colors. While you can wear pale and muted shades, black is the safest color to opt for.775590-incense-burning-at-a-temple-during-chinese-new-year-celebrations-in-qingdao-china

► Avoid wearing bright and colorful clothing, as such hues may symbolize moods, contrary to the one of mourning. Do not wear red; in China, it is associated with happiness.

► You can dress up in white clothes, but make sure that they are absolutely plain, with no designs at all. In fact, the deceased is also dressed up in a white robe.

► If the deceased lived up to the age of 80 or above, guests can wear a white attire bearing shades of pink or red. The Chinese believe that if a person dies at 80 or above, he/she lived life to the fullest, and had no desires left to be fulfilled. Therefore, such a death (if it is natural), calls for a celebration, and shades symbolizing happiness are acceptable to a certain extent.

During the Funeral

► The Chinese funeral involves a lot of rites which have to be completed properly. Traditionally, the period called “wake” precedes the actual funeral. Held either in the family home or local temple, this period lasts for several days, wherein family members and close friends are expected to bring flowers for the deceased.

► White Iris is the traditional funeral flower in China, so make sure that you take an elaborate wreath made of these flowers, if you are visiting during the “wake”.buddist_funeral

► Though it is not customary, people generally also put banners with couplets about the deceased written on them, within the wreaths. Such a gesture shows that you are equally sad about the person’s death as his/her family.

► On the day of the funeral, all the guests are expected to give money in white envelopes (white is the color of mourning in Chinese culture) to the family members of the deceased. This can be directly handed over to one of the family members (or put into a donation box, if there is one), either on the day of the funeral or one day before.

► You can either write your name on the white envelope while you give the money or you can leave it blank; it is acceptable both ways.

► The amount that you may give varies, depending on the overall income of the family of the deceased, and also that of the guests. The amount of money also depends on the closeness of the grieving family with the guest.

► The minimum expected amount is 101 yuan (about $16), but there is no upper limit for the same. While enclosing money into the white envelope, ensure that you are donating in odd numbers.

► While the funeral is in progress, the members of the grieving family burn joss paper, also known as ghost money, to ensure safe passage of the deceased into the afterlife.

► Apart from joss paper, other miniature items such as houses, cars, televisions, utensils, etc., are also burned. It is believed that all these enter the afterlife with the deceased, so that he/she can lead a luxurious and a comfortable life, even after death.

After the Funeral

► Once all this is done and the guests are about to leave, the family of the deceased distributes red envelopes among them. Each of these envelopes contains a coin.tumblr_mavgpzp6FP1qa54c3o11_r2_1280

► Red, in Chinese culture, is the color of happiness. So, the distribution of red envelopes after funeral symbolizes the end of the period of mourning, and the beginning of a new start.

► As a marker of a fresh beginning, the guests are also made to consume a piece of sweet candy before leaving for their respective homes. Sometimes, the guests may also be presented with a handkerchief.

► It should be noted that the three items mentioned above viz., the envelope with a coin, the handkerchief, and the candy, should not be carried home by the guests. If done so, these items are believed to invite bad luck.

► It is also customary for the grieving families to present their guests with a red-colored thread, while they leave for their homes. This thread is believed to ward away evil spirits, and so, it should be taken home by the guests and tied to their doorknobs.

The Funeral Procession

► Once the elaborate funeral ceremony is over, a funeral procession to the final resting place of the deceased, the crematorium or the cemetery, is held.

► For this, a special band is hired and loud music is played until the place is reached. Traditional Chinese culture believes that evil spirits can be kept away by means of loud music.

► The family members of the deceased wear mourning clothes. The children and the sons/daughters-in-law of the deceased wear black and white colors, while the grandchildren wear a blue-colored attire.16832ifc04a1290b6fe2ecf091cd0e3d2a408b

► The other mourners are allowed to wear any shades, except the bright and bold ones, and it is also customary for them to wear a cloth band on their arms that signifies that they are mourning the death of their loved one.

► The arm on which the band is worn depends on the gender of the deceased. If the deceased is a woman, the band is worn on the right sleeve, and vice versa.

► More often than not, professional mourners are also hired; however, this is not mandatory, and depends largely on the financial status of the grieving family.

► The coffin, in which the corpse is laid, is kept in a hearse decorated with funerary wreaths and flowers.

► The children of the deceased walk in the front row of the procession, carrying a large portrait of their mother/father. They are followed by other family members and guests.

► Whether the deceased is cremated or buried, depends on the personal preference of the deceased himself/herself and/or his/her family. Both these practices prevail in the traditional Chinese culture, and both are equally acceptable.

It is worth noting that in Chinese culture, the funeral customs and rites vary from person to person, depending on the social status of the deceased and/or also his/her position in the family. They also depend on the age, marital status, and the manner in which the person died. So, while you prepare yourself to attend a traditional Chinese funeral ceremony, ensure that you have considered all these things so that you can follow the appropriate etiquette once you get there.
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The Hanging Coffin

First appearing during the Spring and Autumn Period (722-481BC), hanging coffin is a unique funeral and sacrifice custom of the minority groups in southern China. People put the bodies of their ancestors into wooden coffins that were later placed in caves of precipitous cliffsides.

Most coffins were made with one whole piece of wood into various shapes. It was said that the hanging coffins could prevent bodies from being taken by beasts and also bless the soul eternally.

  Famous Hanging Coffin Sites :

While hanging coffins can be found in many places in China, the strange thing is all of them only existed for a certain period in history. Those in Wuyi Mountain are the first appear in China, as early as in the Zhou Dynasty (1027-777BC) while those in Gongxian County of Southwest china’s Sichuan province are the most recent, which also marked the end of the hanging coffin custom.

Hanging Coffins of Bo People in Gongxian, Sichuan Provinve
Hanging Coffins of Guyue People in Dragon Tiger Mountain
Hanging Coffins of Guyue People in Wuyi Mountain

The mystery of hanging coffins

Why did the ancient people bury the dead in hanging coffins?

According to historical records, the Bo people believed “Coffins set high are considered auspicious. The higher they are the more propitious for the dead”. Also, after experiencing years of wars and natural disasters, the Bo people dreamed of going somewhere peaceful and quiet after their death. That is why they chose to rest their bodies on the precipices with the mountains and rivers around, all peaceful, beautiful and quiet. The Guyue people, on the other hand, held a high esteem for high mountains, and believed the higher the hanging coffin was placed; the better they could be protected.

How did the ancient people do it?

So how did the ancient people, including the Bo people and Guyue people, do it? This question once caused heated discussion among experts . Some believe the coffins were lowered down with ropes from the top of the mountain. Some ought the coffins were put in place with wooden stakes inserted into the cliff surface as artificial climbing aids. Others feel that earth ramps were the answer.

Cui Chen, a curator of the Yibin Museum, who examined the three different ways the coffins of the Bo people could have been put in place, has this to say:

“Earth ramps might have been used but experts discount this solution due to the amount of labor required, which would have been difficult in an underpopulated area. A timber scaffold supported on stakes in the cliff might have offered a plausible explanation but years of investigation have failed to find even a single stake hole. On balance the third option of lowering the coffins on ropes from above had always seemed feasible and now cultural specialists have found the telltale marks of the ropes which were used all these years ago. And so this part of the mystery of the hanging coffins has now been resolved.”
During the later years of the Ming Dynasty (1368-1644), the imperial army cruelly oppressed the ethnic minority peoples of Southwestern China Sichuan and Yunnan Provinces. In particular, the Duzhangman and Bo Peoples fell victims of massacre. To escape their oppression, the Bo migrated to new locations. They hid their real names and assimilated with other ethnic groups. Like their culture they have disappeared but their descendents are still here for they are a part of us.
How the Guyue people hung the coffins onto the Fairy-water Rocks of Longhushan (Dragon TigerMountain) remains a mystery, since the hanging coffins are so dangerously located. Over the years, it has taken on a mystic air. Some people say the coffins were hung up with the aid from the immortals in the heaven, while others say there are invaluable treasures within the caves. Longhushan Administration Bureau once offered a 300,000 yuan ($US 36298) reward for solving the mystery, but so far no one has won the reward.