Wisconsin is learning how to die

by Sarah Kliff

La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.

“One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests,” says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse’s two hospital networks. “It’s just become part of good care here.”

End-of-life care planning is not currently a routine part of medical care in the United States. Most surveys show that about a quarter of American adults have completed an advance directive, spelling out what type of treatment they would want in a medical crisis where they could no longer make their wishes known.

Making a plan is just like taking blood pressure or doing allergy tests. It’s just become part of good care here.”Americans don’t plan for death because health insurance plans don’t typically pay for that sort of planning, the way they cover blood tests or MRI scans. Medicare, which covers Americans over 65, certainly doesn’t pay for end-of-life care planning: when the Obama administration proposed such an idea during the 2009 health reform debate, it quickly spiraled into talks about “death panels” and “pulling the plug on Grandma.”

The dearth of end-of-life care planning in the United States often means that lives end in chaos, with families confused and overwhelmed trying to think through what their loved ones would want.

“It’s one of the most uncomfortable things,” says Donn Dexter, a neurologist in Eau Claire, Wisconsin, about a two-hour drive north of La Crosse. “The family can be so at odds, and the patient has not made clear what they want. I’ve seen families just torn apart by this, and their loved ones tortured with prolonged, futile treatment at the end of life.”

When La Crosse started talking about death in the mid-1980s, a few patients were annoyed. People who turned up at a physical and had a doctor ask about their end-of-life preferences were, understandably, confused.

“Patients were sometimes upset or anxious, like, ‘Why are you bringing this up? Is there something wrong with me?'” Hammes says. “There were lots of strong emotions and this sense that this was only for people at the end of life and dying. We had to work really hard to convince people we wanted every patient to have this discussion.”

But doctors kept asking, until patients got comfortable. And there were never any accusations of “death panels” or “rationing”: the program seemed to work because it was grassroots, rather than imposed by the government or some other large entity.

The story of La Crosse — and how its approach to end-of-life care is quickly, quietly spreading across the Midwest — gives some reason to be optimistic about the future of end-of-life care in America. It suggests that it is possible to move beyond death panels, and for doctors to have frank conversations with patients about how their life will end. The trick, it seems, is making these conversations feel like a natural part of the doctor-patient relationship, rather than a mandate imposed by a menacing bureaucracy. The only problem is this: for programs like La Crosse’s to work on a national level, the federal government is eventually going to have to get involved — and pay doctors for this type of service. Is that something America will ever be ready for?

“Situations where it wasn’t clear what was best”

wisconsin

La Crosse’s push to get its residents to talk about death began in the 1980s, when Hammes joined Gundersen to develop a curriculum for the moral quandaries that medical students would go on to face as doctors. He shadowed some students to get a sense of the issues they confront.

“What I witnessed with such frequency were situations where it wasn’t clear what was best, and the patient’s perspective would help resolve that question, but we couldn’t get that perspective,” he says.

Hospitals don’t know when patients will die. But they do know death will happen — and can plan for that.

As an outsider to the medical system, Hammes found this baffling. Some of these patients had been in the hospital’s care for decades. While it was impossible to predictwhen a patient would die, the hospital clearly knew, with great certainty, that all lives end. Yet there was no apparent planning for that moment.

Hammes suggested that the hospital start talking to patients about death. They started with a small group of 60 patients with kidney failure. They and their families talked about priorities in medical care and whether they would want to continue living if they lost awareness of who they were, or where they were.

“What we noticed is that as we had those conversations, the conflicts became less frequent,” he says. “The norm became the family saying, ‘We know what to do; we had a conversation.'”

The success of Hammes’s pilot encouraged Gundersen and the other hospital in town to expand the program to the entire city. They would work not just with patients who were facing imminent crisis, like the dialysis group, but with any adult in the system.

By 1995, 85 percent of La Crosse residents had an advance planning document on their record. In 2008, it hit 90 percent. These documents were effective: researchers foundthat among those who died, the care they wanted nearly universally aligned with the care they received.

All of this happened without political blowback. The movement to talk about death spread quietly, from doctor to doctor and patient to patient.

And, perhaps most surprisingly, the La Crosse conversations appeared to save money. The city has some of the lowest end-of-life spending in the country; people who die in La Crosse spend approximately 32 percent less than the average Medicare patient in their last six months of life, the Dartmouth Atlas of Health Care shows.

This suggests something broken about the way end-of-life care usually works: it is much more intense than patients desire. When patient preferences are known — as they almost universally are in La Crosse — people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it’s shown a meaningful reduction in health spending as a side effect of respecting patient wishes.

And that’s why there’s a now a movement to bring the La Crosse program to the entire state of Wisconsin.

“We want every adult to have the conversation,” says John Maycroft, who oversees policy at the Wisconsin Medical Society, a doctors’ advocacy group. “It’s about the conversation. And the document is of course important, but if everyone can have this conversation, we’d all be better for it. We could shift the culture in a big way.”

“Do you have thoughts about what you would want to happen?”

hospital bed

The name of the program La Crosse developed is called Respecting Choices. It’s essentially a script for having conversations about the end of life. The idea is to have patients talk about the type of care they would want if they could no longer speak on their own behalf, like after a serious car accident.

What makes Respecting Choices work is that it’s formulaic. It gives structure and steps to what is otherwise a difficult conversation — the type of conversation that medical school doesn’t prepare doctors to have. Those trained in the curriculum say having a script to follow is essential; they know exactly what information they need and how to get it. And they’re forced to practice, over and over again, until it feels like second nature.

I had Mia Morisette, an advance care planning coordinator for University of Wisconsin Hospital and Clinics, go through the script with me. In her distinctive Wisconsin accent, she started by asking me what I knew about advance directives — how they worked and why they were important. And she asked me to reflect on what I’d seen, in my own family, with the end-of-life experience going well or poorly.

A difficult conversation is guided by a script — making the interaction much less awkward

I told Morisette a bit about my grandmother who died in 2010. One of the things I remembered being stressful for family members was the notion of doing everythingpossible. There seemed to be a tremendous desire for everyone to walk away from the ICU thinking, “At least we did everything we could.” Sometimes that desire could override what was actually the best for my grandmother’s care. I didn’t want my family to have that type of burden, I told her.

Without knowing it, I had moved on to the next part of Morisette’s script: what I would want. Morisette had a very specific thing she wanted me to think about. I didn’t need to think about what I would do if I got a cancer diagnosis or found out I had a year to live. If that happened, we could revisit my options. Instead, she wanted me to think about a situation where I wouldn’t be able to make my care preferences known.

“Consider a situation where a serious car accident left you unable to communicate,” she said. “You’re receiving medical care to keep you alive, but there’s little chance you’ll ever recover the knowledge of who you are and who is around you. Do you have thoughts about what you would want to happen?”

I asked Morisette to define “little chance,” which she estimated to be around 5 percent.

Then I was stuck. I sat on the phone silent for a moment. Even as a reporter on these issues, I didn’t know what I wanted — generally, my hunch was to stop treatment with such long odds in my favor. But I also had a nagging voice wondering about that 5 percent chance.

Morisette told me this was all normal; this was the point of having the conversation in the first place — to have these thoughts, and to work through them. Most of her consultations usually take three or four visits to fully complete.

“It’s not all at once,” she told me about the process. “Sometimes it helps just to use the first conversation to get in the frame of mind.”

“We eventually want everyone to have this conversation”

hospital conversation

Maycroft of the Wisconsin Medical Society started working on bringing the La Crosse model statewide in March 2013. Minnesota had done the same thing a few years earlier, to generally positive results. Minnesotans, in 2014, showed higher rates of end-of-life planning than the national average.

The Wisconsin program started small, with six hospitals piloting La Crosse’s model elsewhere in the state. Over two years it’s grown steadily, up to 23 health-care systems. And the ultimate goal is to, in a decade or so, make Wisconsin look like La Crosse, with every resident having a plan for death.

“We eventually want everyone to have this conversation,” says Maycroft. “I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do. We’re here for Wisconsinites, but we also want to be a national model.”

I was surprised to see that Wisconsin had moved this program forward with little public protest, given the fierce fight over death panels that happened in Washington a few years ago. But even more than that, the thing I found most baffling about the La Crosse model’s growth was that hospitals earn no money from having these conversations.

“We got no reimbursement,” says Hammes of launching the program in La Crosse. “For the hospital, this would lose money.”

“I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do”

Whenever doctors do anything — whether it’s a blood test or brain surgery — they charge the patient’s health insurance plan a fee. Doctors, like lawyers, are constantly billing for the time they spend talking to or operating on patients. I’ve written on the health industry for six years now, and I’d never heard of a service that hospitals don’t charge for, like these end-of-life consultations.

Reimbursement would certainly help, Maycroft and others told me. But there’s also a risk that comes with formalizing the program: the vicious debates that happened when the Obama administration proposed paying doctors for this exact type of conversation.

“We haven’t asked for any legislation,” Maycroft says. “The state knows about us, but we’re not asking for any kind of money. We’ve avoided the death panel accusations.”

This makes it easier for programs like his to fly under the radar — but is also a limiting factor for expanding. Not all hospitals will want to do this type of work out of the goodness of their own hearts — and even hospitals that are on board have difficulty committing resources to a program that doesn’t pay.

“The biggest challenge for us is financial,” says Toni Kessler, the ethics manager at Community Care, a hospice provider participating in the Wisconsin program. “I spend a lot of time talking to our finance people, anyone I can get in front of. But it can be a tough case to make when we don’t get reimbursed.”

Minnesota, whose program began five years before Wisconsin’s, made its first request for state money last month, pushing for a bill that would fund the advance directive program.

“The day we introduced our legislation someone else dropped a bill relating to physician-assisted suicide,” says Sue Schettle, executive director of the Twin Cities Medical Society. “And I was thinking, ‘If there’s ever day where this issue would blow up, this was it. I was dreading reading the next day’s newspaper.'”

The explosion never happened. “Maybe it’s our Midwestern nature, that we’re just putting our heads down and getting to work,” Schettle mused to me.

Maycroft thinks the Wisconsin program can go forward for some time without any funding. So far, hospitals have paid his organization money to get trained in end-of-life care conversations, and that has kept the effort afloat.

At the same time, getting insurers and Medicare to reimburse for these conversations remains an important and challenging goal. Maycroft sent me a follow-up email on this point shortly after we talked.

“I’m not sure I expressed well just how much Medicare and insurer reimbursement would help us,” he wrote. “Our participants’ willingness to do this without reimbursement has been impressive, but (and feel free to quote me on this) Medicare reimbursement would make a huge difference. Our participants are doing everything they can, but sustainability of these programs will be a challenge without reimbursement.”

The lack of reimbursement for end-of-life planning suggests a limit to how far the La Crosse model can spread. It currently relies on the willingness of hospitals to donate their time, essentially having doctors volunteer time out of their already busy days.

Going national would almost certainly require Medicare to start paying for these conversations. And maybe, with programs like those in Minnesota and Wisconsin, Washington will begin to get ready.
Complete Article HERE!

A Special Focus On Caring For Vets At The End Of Their Lives

By Patricia Murphy

Caring for the nation’s veterans at the end of their lives can be a complex task. Service members — especially combat veterans — can struggle with guilt, abandonment and regret.

The Army and the Department of Veterans Affairs are working to help them. At one Army hospital in Seattle, its mission is to make those last days meaningful.

Col. Kenneth Trzepkowski, chief of palliative care at Madigan Army Medical Center, unfolds one of the handmade quilts donated to the hospital for the palliative care patients.

Mark Goodwin rode a Harley. He liked to barbecue. And he loved the Seattle Seahawks — the retired Army First Sergeant was a season ticket holder.

“He’s the kind of person that wanted to make sure that everyone else in his life was taken care of,” says his wife, Traci Goodwin. “I think that’s part of being a soldier, of being a leader. So he was used to looking after people.”

But when Mark was diagnosed with stage 4 colorectal cancer last year, she says it was Mark who needed someone to look after him.

He ended up at Madigan Army Medical Center in Tacoma, Wash. The Palliative Care Team there helped the couple manage everything from pain care to Mark’s veteran benefits.

“While we were focused on recovery and healing, they wanted to make sure that all of his documents were in order… to make sure that I wouldn’t be left with a pile of paperwork or unsure of what to do,” Traci says.

The end of life is an intimate journey. When confronted with it many are unprepared.

To help, Madigan has one of the Army’s most comprehensive and well-trained end-of-life teams. It includes physicians, nurses and social workers. Chaplain George Wallace works with the group full-time.

“Sometimes what emerges are issues of betrayal and guilt. We have these really, really high almost super human standards — we call it the warrior ethos: ‘I’ll never quit,’ that sort of thing and that’s great,” Wallace says. “But it often comes with baggage after the fact if you feel like you didn’t live up or ‘I Left a buddy behind that I couldn’t bring home.'”

There are other challenges: Some vets are alone at the end of life. They may be estranged from friends and family because of post-traumatic stress disorder or substance abuse issues.

It can be a terrifying place, but also ripe for transformation and forgiveness.

Wallace says he’s witnessed it many times.

A wall of tributes, prayer cards and notes of appreciation from families whose loved ones have been cared for at Madigan Army Medical Center.

“You begin to realize that you’re running out of time so that has a way of jarring and opening a space that can be very fruitful,” he says.

Mark and Traci Goodwin weren’t alone. But they still needed help.

They spent a year at the medical center — the doctors trying to save him. But the couple knew they were walking on a knife’s edge.

“When Mark finally realized that perhaps it wasn’t going to work out the way we had been praying for, he called them in along with his nursing team and wanted to talk to them and he actually asked me to leave the room so that he could speak to them in private,” Traci says.

She says she was stunned. They’d been married for two decades and told each other everything.

Marc Goodwin’s request to speak privately with his caregivers revealed the extraordinary relationship he’d built with them.

He entrusted them to deliver a message to his wife about his deepest fears during his final hours.

“They relayed to me that his concerns were me and how I would deal with it,” she says. “I went in after that to give him the peace of saying it’s ok. If you are ready then I can let you go.”

Mark passed away the next evening.

When a veteran or a service member dies at Madigan Army Medical Center or the VA, an American flag is placed over the body. As it’s wheeled from the room, hospital staff line the hallway.

Some salute, others stand at attention, to honor a veteran’s service and sacrifice.
Complete Article HERE!

This is what happens after you die

Most of us would rather not think about what happens to our bodies after death. But that breakdown gives birth to new life in unexpected ways, writes Moheb Costandi.

LifeAfterDeath_01_Death_crop

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“It might take a little bit of force to break this up,” says mortician Holly Williams, lifting John’s arm and gently bending it at the fingers, elbow and wrist. “Usually, the fresher a body is, the easier it is for me to work on.”

Williams speaks softly and has a happy-go-lucky demeanour that belies the nature of her work. Raised and now employed at a family-run funeral home in north Texas, she has seen and handled dead bodies on an almost daily basis since childhood. Now 28 years old, she estimates that she has worked on something like 1,000 bodies.

Her work involves collecting recently deceased bodies from the Dallas–Fort Worth area and preparing them for their funeral.

“Most of the people we pick up die in nursing homes,” says Williams, “but sometimes we get people who died of gunshot wounds or in a car wreck. We might get a call to pick up someone who died alone and wasn’t found for days or weeks, and they’ll already be decomposing, which makes my work much harder.”

John had been dead about four hours before his body was brought into the funeral home. He had been relatively healthy for most of his life. He had worked his whole life on the Texas oil fields, a job that kept him physically active and in pretty good shape. He had stopped smoking decades earlier and drank alcohol moderately. Then, one cold January morning, he suffered a massive heart attack at home (apparently triggered by other, unknown, complications), fell to the floor, and died almost immediately. He was just 57 years old.

Now, John lay on Williams’ metal table, his body wrapped in a white linen sheet, cold and stiff to the touch, his skin purplish-grey – telltale signs that the early stages of decomposition were well under way.

Self-digestion

Far from being ‘dead’, a rotting corpse is teeming with life. A growing number of scientists view a rotting corpse as the cornerstone of a vast and complex ecosystem, which emerges soon after death and flourishes and evolves as decomposition proceeds.

Decomposition begins several minutes after death with a process called autolysis, or self-digestion. Soon after the heart stops beating, cells become deprived of oxygen, and their acidity increases as the toxic by-products of chemical reactions begin to accumulate inside them. Enzymes start to digest cell membranes and then leak out as the cells break down. This usually begins in the liver, which is rich in enzymes, and in the brain, which has a high water content. Eventually, though, all other tissues and organs begin to break down in this way. Damaged blood cells begin to spill out of broken vessels and, aided by gravity, settle in the capillaries and small veins, discolouring the skin.

Body temperature also begins to drop, until it has acclimatised to its surroundings. Then, rigor mortis – “the stiffness of death” – sets in, starting in the eyelids, jaw and neck muscles, before working its way into the trunk and then the limbs. In life, muscle cells contract and relax due to the actions of two filamentous proteins (actin and myosin), which slide along each other. After death, the cells are depleted of their energy source and the protein filaments become locked in place. This causes the muscles to become rigid and locks the joints.

During these early stages, the cadaveric ecosystem consists mostly of the bacteria that live in and on the living human body. Our bodies host huge numbers of bacteria; every one of the body’s surfaces and corners provides a habitat for a specialised microbial community. By far the largest of these communities resides in the gut, which is home to trillions of bacteria of hundreds or perhaps thousands of different species.

The gut microbiome is one of the hottest research topics in biology; it’s been linked to roles in human health and a plethora of conditions and diseases, from autism and depression to irritable bowel syndrome and obesity. But we still know little about these microbial passengers. We know even less about what happens to them when we die.

In August 2014, forensic scientist Gulnaz Javan of Alabama State University in Montgomery and her colleagues published the very first study of what they have called the thanatomicrobiome (from thanatos, the Greek word for ‘death’).

“Many of our samples come from criminal cases,” says Javan. “Someone dies by suicide, homicide, drug overdose or traffic accident, and I collect tissue samples from the body. There are ethical issues [because] we need consent.”

Most internal organs are devoid of microbes when we are alive. Soon after death, however, the immune system stops working, leaving them to spread throughout the body freely. This usually begins in the gut, at the junction between the small and large intestines. Left unchecked, our gut bacteria begin to digest the intestines – and then the surrounding tissues – from the inside out, using the chemical cocktail that leaks out of damaged cells as a food source. Then they invade the capillaries of the digestive system and lymph nodes, spreading first to the liver and spleen, then into the heart and brain.

Javan and her team took samples of liver, spleen, brain, heart and blood from 11 cadavers, at between 20 and 240 hours after death. They used two different state-of-the-art DNA sequencing technologies, combined with bioinformatics, to analyse and compare the bacterial content of each sample.

The samples taken from different organs in the same cadaver were very similar to each other but very different from those taken from the same organs in the other bodies. This may be due partly to differences in the composition of the microbiome of each cadaver, or it might be caused by differences in the time elapsed since death. An earlier study of decomposing mice revealed that although the microbiome changes dramatically after death, it does so in a consistent and measurable way. The researchers were able to estimate time of death to within three days of a nearly two-month period.

Javan’s study suggests that this ‘microbial clock’ may be ticking within the decomposing human body, too. It showed that the bacteria reached the liver about 20 hours after death and that it took them at least 58 hours to spread to all the organs from which samples were taken. Thus, after we die, our bacteria may spread through the body in a systematic way, and the timing with which they infiltrate first one internal organ and then another may provide a new way of estimating the amount of time that has elapsed since death.

“Degree of decomposition varies not only from individual to individual but also differs in different body organs,” says Javan, “Spleen, intestine, stomach and pregnant uterus are earlier to decay, but on the other hand kidney, heart and bones are later in the process.” In 2014, Javan and her colleagues secured a US$200,000 grant from the National Science Foundation to investigate further. “We will do next-generation sequencing and bioinformatics to see which organ is best for estimating [time of death] – that’s still unclear,” she says.

One thing that does seem clear, however, is that a different composition of bacteria is associated with different stages of decomposition.

Putrefaction

Scattered among the pine trees in Huntsville, Texas, lie around half a dozen human cadavers in various stages of decay. The two most recently placed bodies are spread-eagled near the centre of the small enclosure with much of their loose, grey-blue mottled skin still intact, their ribcages and pelvic bones visible between slowly putrefying flesh. A few metres away lies another, fully skeletonised, with its black, hardened skin clinging to the bones, as if it were wearing a shiny latex suit and skullcap. Further still, beyond other skeletal remains scattered by vultures, lies a third body within a wood and wire cage. It is nearing the end of the death cycle, partly mummified. Several large, brown mushrooms grow from where an abdomen once was.

For most of us the sight of a rotting corpse is at best unsettling and at worst repulsive and frightening, the stuff of nightmares. But this is everyday for the folks at the Southeast Texas Applied Forensic Science Facility. Opened in 2009, the facility is located within a 247-acre area of National Forest owned by Sam Houston State University (SHSU). Within it, a nine-acre plot of densely wooded land has been sealed off from the wider area and further subdivided, by 10-foot-high green wire fences topped with barbed wire.

In late 2011, SHSU researchers Sibyl Bucheli and Aaron Lynne and their colleagues placed two fresh cadavers here, and left them to decay under natural conditions.

Once self-digestion is under way and bacteria have started to escape from the gastrointestinal tract, putrefaction begins. This is molecular death – the breakdown of soft tissues even further, into gases, liquids and salts. It is already under way at the earlier stages of decomposition but really gets going when anaerobic bacteria get in on the act.

Putrefaction is associated with a marked shift from aerobic bacterial species, which require oxygen to grow, to anaerobic ones, which do not. These then feed on the body’s tissues, fermenting the sugars in them to produce gaseous by-products such as methane, hydrogen sulphide and ammonia, which accumulate within the body, inflating (or ‘bloating’) the abdomen and sometimes other body parts.

This causes further discolouration of the body. As damaged blood cells continue to leak from disintegrating vessels, anaerobic bacteria convert haemoglobin molecules, which once carried oxygen around the body, into sulfhaemoglobin. The presence of this molecule in settled blood gives skin the marbled, greenish-black appearance characteristic of a body undergoing active decomposition.

As the gas pressure continues to build up inside the body, it causes blisters to appear all over the skin surface. This is followed by loosening, and then ‘slippage’, of large sheets of skin, which remain barely attached to the deteriorating frame underneath. Eventually, the gases and liquefied tissues purge from the body, usually leaking from the anus and other orifices and frequently also leaking from ripped skin in other parts of the body. Sometimes, the pressure is so great that the abdomen bursts open.

Bloating is often used as a marker for the transition between early and later stages of decomposition, and another recent study shows that this transition is characterised by a distinct shift in the composition of cadaveric bacteria.

Bucheli and Lynne took samples of bacteria from various parts of the bodies at the beginning and the end of the bloat stage. They then extracted bacterial DNA from the samples and sequenced it.

As an entomologist, Bucheli is mainly interested in the insects that colonise cadavers. She regards a cadaver as a specialised habitat for various necrophagous (or ‘dead-eating’) insect species, some of which see out their entire life cycle in, on and around the body.

Colonisation

When a decomposing body starts to purge, it becomes fully exposed to its surroundings. At this stage, the cadaveric ecosystem really comes into its own: a ‘hub’ for microbes, insects and scavengers.

Two species closely linked with decomposition are blowflies and flesh flies (and their larvae). Cadavers give off a foul, sickly-sweet odour, made up of a complex cocktail of volatile compounds that changes as decomposition progresses. Blowflies detect the smell using specialised receptors on their antennae, then land on the cadaver and lay their eggs in orifices and open wounds.

Each fly deposits around 250 eggs that hatch within 24 hours, giving rise to small first-stage maggots. These feed on the rotting flesh and then moult into larger maggots, which feed for several hours before moulting again. After feeding some more, these yet larger, and now fattened, maggots wriggle away from the body. They then pupate and transform into adult flies, and the cycle repeats until there’s nothing left for them to feed on.

Under the right conditions, an actively decaying body will have large numbers of stage-three maggots feeding on it. This ‘maggot mass’ generates a lot of heat, raising the inside temperature by more than 10°C. Like penguins huddling in the South Pole, individual maggots within the mass are constantly on the move. But whereas penguins huddle to keep warm, maggots in the mass move around to stay cool.

“It’s a double-edged sword,” Bucheli explains, surrounded by large toy insects and a collection of Monster High dolls in her SHSU office. “If you’re always at the edge, you might get eaten by a bird, and if you’re always in the centre, you might get cooked. So they’re constantly moving from the centre to the edges and back.”

The presence of flies attracts predators such as skin beetles, mites, ants, wasps and spiders, which then feed on or parasitise the flies’ eggs and larvae. Vultures and other scavengers, as well as other large meat-eating animals, may also descend upon the body.

In the absence of scavengers, though, the maggots are responsible for removal of the soft tissues. As Carl Linnaeus (who devised the system by which scientists name species) noted in 1767, “three flies could consume a horse cadaver as rapidly as a lion”. Third-stage maggots will move away from a cadaver in large numbers, often following the same route. Their activity is so rigorous that their migration paths may be seen after decomposition is finished, as deep furrows in the soil emanating from the cadaver.

Every species that visits a cadaver has a unique repertoire of gut microbes, and different types of soil are likely to harbour distinct bacterial communities – the composition of which is probably determined by factors such as temperature, moisture, and the soil type and texture.

All these microbes mingle and mix within the cadaveric ecosystem. Flies that land on the cadaver will not only deposit their eggs on it, but will also take up some of the bacteria they find there and leave some of their own. And the liquefied tissues seeping out of the body allow the exchange of bacteria between the cadaver and the soil beneath.

When they take samples from cadavers, Bucheli and Lynne detect bacteria originating from the skin on the body and from the flies and scavengers that visit it, as well as from soil. “When a body purges, the gut bacteria start to come out, and we see a greater proportion of them outside the body,” says Lynne.

Thus, every dead body is likely to have a unique microbiological signature, and this signature may change with time according to the exact conditions of the death scene. A better understanding of the composition of these bacterial communities, the relationships between them and how they influence each other as decomposition proceeds could one day help forensics teams learn more about where, when and how a person died.

For instance, detecting DNA sequences known to be unique to a particular organism or soil type in a cadaver could help crime scene investigators link the body of a murder victim to a particular geographical location or narrow down their search for clues even further, perhaps to a specific field within a given area.

“There have been several court cases where forensic entomology has really stood up and provided important pieces of the puzzle,” says Bucheli, adding that she hopes bacteria might provide additional information and could become another tool to refine time-of-death estimates. “I hope that in about five years we can start using bacterial data in trials,” she says.

To this end, researchers are busy cataloguing the bacterial species in and on the human body, and studying how bacterial populations differ between individuals. “I would love to have a dataset from life to death,” says Bucheli. “I would love to meet a donor who’d let me take bacterial samples while they’re alive, through their death process and while they decompose.”

Purging

“We’re looking at the purging fluid that comes out of decomposing bodies,” says Daniel Wescott, director of the Forensic Anthropology Center at Texas State University in San Marcos.

Wescott, an anthropologist specialising in skull structure, is using a micro-CT scanner to analyse the microscopic structure of the bones brought back from the body farm. He also collaborates with entomologists and microbiologists – including Javan, who has been busy analysing samples of cadaver soil collected from the San Marcos facility – as well as computer engineers and a pilot, who operate a drone that takes aerial photographs of the facility.

“I was reading an article about drones flying over crop fields, looking at which ones would be best to plant in,” he says. “They were looking at near-infrared, and organically rich soils were a darker colour than the others. I thought if they can do that, then maybe we can pick up these little circles.”

Those “little circles” are cadaver decomposition islands. A decomposing body significantly alters the chemistry of the soil beneath it, causing changes that may persist for years. Purging – the seeping of broken-down materials out of what’s left of the body – releases nutrients into the underlying soil, and maggot migration transfers much of the energy in a body to the wider environment. Eventually, the whole process creates a ‘cadaver decomposition island’, a highly concentrated area of organically rich soil. As well as releasing nutrients into the wider ecosystem, this attracts other organic materials, such as dead insects and faecal matter from larger animals.

According to one estimate, an average human body consists of 50–75 per cent water, and every kilogram of dry body mass eventually releases 32 g of nitrogen, 10 g of phosphorous, 4 g of potassium and 1 g of magnesium into the soil. Initially, it kills off some of the underlying and surrounding vegetation, possibly because of nitrogen toxicity or because of antibiotics found in the body, which are secreted by insect larvae as they feed on the flesh. Ultimately, though, decomposition is beneficial for the surrounding ecosystem.

The microbial biomass within the cadaver decomposition island is greater than in other nearby areas. Nematode worms, associated with decay and drawn to the seeping nutrients, become more abundant, and plant life becomes more diverse. Further research into how decomposing bodies alter the ecology of their surroundings may provide a new way of finding murder victims whose bodies have been buried in shallow graves.

Grave soil analysis may also provide another possible way of estimating time of death. A 2008 study of the biochemical changes that take place in a cadaver decomposition island showed that the soil concentration of lipid-phosphorous leaking from a cadaver peaks at around 40 days after death, whereas those of nitrogen and extractable phosphorous peak at 72 and 100 days, respectively. With a more detailed understanding of these processes, analyses of grave soil biochemistry could one day help forensic researchers to estimate how long ago a body was placed in a hidden grave.

Burial

In the relentless dry heat of a Texan summer, a body left to the elements will mummify rather than decompose fully. The skin will quickly lose all of its moisture, so that it remains clinging to the bones when the process is complete.

The speed of the chemical reactions involved doubles with every 10°C rise in temperature, so a cadaver will reach an advanced stage of decomposition after 16 days at an average daily temperature of 25°C. By then, most of the flesh has been removed from the body, and so the mass migration of maggots away from the carcass can begin.

The ancient Egyptians learned inadvertently how the environment affects decomposition. In the predynastic period, before they started building elaborate coffins and tombs, they wrapped their dead in linen and buried them directly in the sand. The heat inhibited the activity of microbes, while burial prevented insects from reaching the bodies, and so they were extremely well preserved. Later on, they began building elaborate tombs for the dead, in order to provide even better for their afterlife, but this had the opposite of the intended effect –separating the body from the sand actually hastened decomposition. And so they invented embalming and mummification.

Embalming involves treating the body with chemicals that slow down the decomposition process. The ancient Egyptian embalmer would first wash the body of the deceased with palm wine and Nile water, remove most of the internal organs through an incision made down the left-hand side, and pack it with natron (a naturally-occurring salt mixture found throughout the Nile Valley). He would use a long hook to pull the brain out through the nostrils, then cover the entire body with natron and leave it to dry for 40 days. Initially, the dried organs were placed into canopic jars that were buried alongside the body; later, they were wrapped in linen and returned to the body. Finally, the body itself was wrapped in multiple layers of linen, in preparation for burial. Morticians study the ancient Egyptian embalming method to this day.

Back at the funeral home, Holly Williams performs something similar so that family and friends can view their departed loved one at the funeral as they once were, rather than as they now are. For victims of trauma and violent deaths, this can involve extensive facial reconstruction.

Living in a small town, Williams has worked on many people she knew or grew up with – friends who overdosed, committed suicide or died texting at the wheel. When her mother died four years ago, Williams did some work on her, too, adding the final touches by making up her face: “I always did her hair and make-up when she was alive, so I knew how to do it just right.”

She transfers John to the prep table, removes his clothes and positions him, then takes several small bottles of embalming fluid from a wall cupboard. The fluid contains a mixture of formaldehyde, methanol and other solvents; it temporarily preserves the body’s tissues by linking cellular proteins to each other and ‘fixing’ them into place. The fluid kills bacteria and prevents them from breaking down the proteins and using them as a food source.

Williams pours the bottles’ contents into the embalming machine. The fluid comes in an array of colours, each matching a different skin tone. Williams wipes his body with a wet sponge and makes a diagonal incision just above his left collarbone. She ‘raises’ the carotid artery and subclavian vein from the neck, ties them off with pieces of string, then pushes a cannula (thin tube) into the artery and small tweezers into the vein to open up the vessels.

Next, she switches the machine on, pumping embalming fluid into the carotid artery and around John’s body. As the fluid goes in, blood pours out of the incision, flowing down along the guttered edges of the sloped metal table and into a large sink. Meanwhile, she picks up one of his limbs to massage it gently. “It takes about an hour to remove all the blood from an average-sized person and replace it with embalming fluid,” Williams says. “Blood clots can slow it down, so massaging breaks them up and helps the flow of the embalming fluid.”

Once all the blood has been replaced, she pushes an aspirator into John’s abdomen and sucks the fluids out of the body cavity, together with any urine and faeces that might still be in there. Finally, she sews up the incisions, wipes the body down a second time, sets the facial features and re-dresses it. John is now ready for his funeral.

Embalmed bodies do eventually decompose. Exactly when, and how long it takes, depends largely on how the embalming was done, the type of casket in which the body is placed and how it is buried. Bodies are, after all, merely forms of energy, trapped in lumps of matter waiting to be released into the wider universe.

According to the laws of thermodynamics, energy cannot be created or destroyed, only converted from one form to another. In other words: things fall apart, converting their mass to energy while doing so. Decomposition is one final, morbid reminder that all matter in the universe must follow these fundamental laws. It breaks us down, equilibrating our bodily matter with its surroundings, and recycling it so that other living things can put it to use.

Ashes to ashes, dust to dust.
Complete Article HERE!

Terminally Ill California Mom Speaks Out Against Assisted Suicide

By Stephanie O’Neill

Stephanie Packer

Stephanie and Brian Packer make lunch with their children, Brian, 11, Savannah, 5, Scarlett, 10, and Jacob, 8.

Stephanie Packer was 29 when she found out she had a terminal lung disease.

That’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Last fall, Maynard, of Northern California, opted to end her life with the help of a doctor in Oregon, where physician-assisted suicide is legal.

Maynard’s story continues to garner support for right-to-die legislation moving through legislatures in California and several other states. Now, Packer, another young California woman, is stepping up to share her story, but she wants people to draw a different conclusion.

On a recent spring afternoon, Packer, 32, is in her kitchen, preparing lunch with her four children.

“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.

“Yeah!” yells 5-year-old Savannah.

“I do!” says Jacob, who is 8.

Calmly managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying, but Packer cherishes these moments.

In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma. The autoimmune disease causes hardening of the skin and (in about one-third of cases) other organs. The doctor told Packer that it had settled in her lungs.

“And I said, ‘OK, what does this mean for me?’ ” she recalls. “And he said, ‘Well, with this condition you have about three years left to live.’ ”

Packer is on oxygen full time and she takes a slew of medications.

She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including lupus, gastroparesis, Raynaud’s phenomenon, interstitial cystitis and trigeminal neuralgia.

Packer’s various maladies have her in constant, sometimes excruciating pain, she says. She also can’t digest food properly and feels extremely fatigued almost all the time.

Some days, Packer says, are good. Others are marked by low energy and pain that only sleep can relieve.

“For my kids, I need to be able to control the pain because that’s what concerns them the most,” she says.

But Packer says physician-assisted suicide isn’t something she is considering.

“Wanting the pain to stop, wanting the humiliating side effects to go away — that’s absolutely natural,” Packer says. “I absolutely have been there and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”

She and husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.

Stephanie Packer 2

Stephanie Packer, 32, is terminally ill with the autoimmune disease scleroderma.

“We’re a faith-based family,” he says. “God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it.”

They also believe if California legislation called SB 128 passes, it would create the potential for abuse. Pressure to end one’s life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.

Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.

“Death can be beautiful and peaceful,” she says. “It’s a natural process that should be allowed to happen on its own.” Even, she says, when it poses uncomfortable challenges.

Brian has traded his full-time job at a lumber company for weekend handyman work so he can care for Stephanie and the children. The family downsized, moving into a two-bedroom apartment they share with their dog and two pet geckos.

Brian says life is good.

“I have four beautiful children. I get to spend so much more time with them than most head of households,” he says. “I get to spend more time with my wife than most husbands do.”

And it’s that kind of support — from family, friends and people in her community — that Stephanie says keeps her living in gratitude, even as she struggles with her terminal illness and the realization that she will not be there to see her children grow up.

“I know eventually that my lungs are going to give out, which will make my heart give out,” she says. “And I know that’s going to happen sooner than I would like — sooner than my family would like. But I’m not making that my focus. My focus is today.”

Stephanie says she is hoping for a double lung transplant, which could give her a few more years. In the meantime, this month marks three years since her doctor gave her three years to live. So every day, she says, is a blessing.
Complete Article HERE!

Saying goodbye: Photographer captures precious memories before pet’s passing

BY

They are a true member of the family– some wander into our lives by chance, others are specifically chosen to be brought into our homes.  Pets are loving, loyal and create memories to last a lifetime, but saying goodbye can be unbearable.008

To help brace for the time we must kiss them on their head one last time, a photographer in Minnesota is using her tremendous talent to help families heal and make a special memory before their pet’s death.

Photographer Eva Hagel, owner of Grape Soda Photography in Minnesota,  knows what the pain feels like. She said goodbye to her beloved boxer, Cleo nearly three years ago.  Hagel said on her website:

In the middle of the night I awoke to Cleo moaning in pain, her limbs were swollen and she was unable to walk. We rushed her to the emergency vet, here in Rochester. She was in the late stages of undiagnosed cancer of the lymph nodes. There was nothing that I could do beyond holding her during those last moments. She didn’t want to sit or lay down, she just stood, and then fell limp in my arms. My heart literally broke in two. I have no images, no pictures of us together. If I could change that I would.

 
After her pet’s passing, Hagel launched ‘Project Cleo’ to offer families Bliss Sessions when their pet’s life is nearing the end. The service is free and runs solely off donations.

When the difficult time comes to say goodbye,  Hagel wants to help you capture precious memories with your pet. She does pictures with dogs, cats, bird and reptiles.

For more information on ‘Project Cleo’ click here.
Complete Article HERE!

Check out a slideshow of some of Eva’s marvelous work below.

 

Too young to die: Even elderly put off talking about end of life

By  Ruth Gledhill

Less than a third of people have discussed what they want to happen at the end of life. Just four per cent have written advance care plans for when they are dying. Yet more than two thirds of people questioned say they are comfortable talking about death.

old-age

Even older people are unlikely to discuss what will happen at the end of their lives.

The NatCen survey of more than 1,300 people showed seven in ten want to die at home. This is at a time when six in ten people die in hospital.

The research, commissioned by Dying Matters Coalition, examines public attitudes to issues around death, dying and bereavement.

While people have strong views about the end of life, they are still unlikely to have discussed their own death. This was mainly because people felt death was a long way off or that they were too young to discuss it. Nearly one in ten of people aged 65 to 74 years old believed they were too young to discuss dying.

Three in ten people had never seen a dead body. Just one per cent of the sample said they would go to a minister, pastor or vicar for information about planning the end of life. Most people’s preferred choice for seeking information was a friend or family member, or their GP.

This was despite the fact that nearly seven in ten of the respondents described themselves as Christian. Nearly two in ten said they were atheist or had no religion.

Professor Mayur Lakhani, chair of Dying Matters, said: “As a practising GP, I know that many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps you to be in control, and it helps those we leave behind.”

One carer said: “It’s not easy to talk about end of life issues, but it’s important to do. Now that we’ve put our affairs in order and are talking about what we want, we can ‘put that in a box’ as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day.”

A bereaved widow said: “If you talk about dying, you can say everything you want or need to. There are no regrets.”
Complete Article HERE!

Heart of the Treasure Valley: Volunteers offer compassionate companionship for those who would die alone

BY KATHERINE JONES

Margaret Leahy sits quietly beside a hospital bed, holding the hand of a dying woman. She knows her name, but that’s about all and — it is enough. Margaret talks quietly to the woman, breathes a prayer, strokes her hair, dampens her lips.

Margaret Leahy, 75, is part of a group of volunteers committed to the belief that no one should die alone — that’s the name of their group. Working at Saint Alphonsus hospital, they sit with patients at the end of their life who have no one else who can be with them. “There are people who don’t (have anyone else) and they deserve to have somebody there,” says Margaret. “It’s just being a presence, really, just being there. … Sometimes it’s just holding their hand or stroking their head or taking care of their mouth that gets all dry.” Here Margaret, a member of Sacred Heart Catholic Church, sits in their memorial garden.

For whatever reason, the woman has no family or friends to be with her in the last hours of her life. But she has Margaret, along with a small group of hospital volunteers, who will take turns being by her side until she dies.

She says: “Compassionate companionship …

“These people are at the end of their lives, but they have a whole story and history behind them. And I may not know (the story), but they have a life that deserves respect.”

This person might be a transient, just passing through, or had an accident far from home. Or be someone alienated from family, or an elderly person with an elderly spouse who can’t be at the hospital. All of them perfect strangers.

“They’re not. They’re family. …

“You’re able to be with somebody in one of the most critical moments of their life. There’s birth and there’s death. And there’s usually a lot of people around the birth and not too many people around the death. …

“It’s one of the most rewarding things I’ve ever done.”

Margaret is part of an all-volunteer group called No One Dies Alone, a national organization with local chapters where people are moved to create them. The nucleus of this group is a partnership between Saint Alphonsus Hospital and members of Sacred Heart parish, begun 10 years ago by Mary Fran Brown.

When death is imminent for someone without family, usually 48 to 72 hours more or less, nurses will contact the chaplain who sets into motion a beeper and subsequent phone calls to the small pool of 20 or 25 volunteers who will come in four-hour shifts around the clock. Margaret is one of the relief coordinators.

“You’re not always the one there when they die (it is someone else who is) but all the volunteers feel the same way: It is a wonderful gift that we’ve been given to be able to do this.

“ … It’s a gift to me, but it’s also a gift I can give to them.”

Everyone volunteers for different reasons, and Margaret’s are many. She knew from a young age that she wanted to be a nurse, and over the years, there have been many people who have died while she was working.

“They have not been ignored, but you’re in with them, you walk out — and they die. Or you go care for someone else, come back half an hour later — and they die. So I’ve seen people that have had nobody with them.”

Among the deaths in her own family, Margaret has been able to care for one sister. But she wasn’t able to be with her parents, another sister, her brother or sister-in-law when they died. She had been with them and then had to come home; other people were with them at their deaths.

“So I think it’s kind of a way of giving back.”

On just her third day on the hospital floor as a young nursing student, Margaret went into the room of a heart patient.

“He starts, as I now know, having chest pains. The dear nuns were very sweet; they felt I was young, so they had me leave the room. So I wasn’t in the room. … I’ve often felt that’s another reason I’ve been drawn to this work: because I couldn’t be there for him.”

When it’s their turn, volunteers check in with the volunteer office and the nursing staff and then go to the room. Most of their people are unconscious or semi-conscious.

“They say hearing is the last to go and they hear voices, they feel touch. So we hold hands, we talk. …

“I read a great article years ago that struck me. It said, ‘Even when you’re dying, you’re living.’ It’s a much more positive aspect to look at that. (Death has) become something you don’t fear.”

Margaret might read out loud or read to herself; she might say rosaries out loud or silent prayers, depending on the person’s religious preference. When she was with her sister, she knitted.

“It’s being the presence there, letting them know they’re not alone. It’s a very sacred time to be there. It’s sacred because it’s so real.”

One time, Margaret was sitting by the bed, holding hands with a woman. A nurse, a friend of Margaret’s, came by to check on both of them and they were talking softly across the bed.

“We both … looked down and she had very quietly passed away. And I thought, you know, that’s not a bad way to go, with people right beside you, talking, so you know you’re not alone. … A feeling of connectedness.

“(A peaceful death) — that’s what we wish for everybody. It doesn’t always happen, but when it can … There’s so much un-peaceful death in the world, it’s nice to be able to see that somebody does have one.”

The services that No One Dies Alone provides are for people of any or no denomination, but Margaret’s volunteering comes from a place of deep faith.

“Visit the imprisoned, visit the sick. Care for the sick, feed the hungry, shelter the homeless; take care of those that are in need — and these are people who are in need.

“That’s where my faith is coming from, caring for another in whatever way you can. It’s so integral, it’s so hard to put into words. …

“There are a lot of volunteers who are doing it to simply be of service to another human being — another type of faith.”

Margaret is also on the Board of Directors for Friendship Clinic, a free medical clinic on Latah Street, and is one of the clinic managers. She also does home visits for St. Vincent de Paul and does faith-based community nursing at Sacred Heart. Her husband, Rick Leahy, is a volunteer at Corpus Christi House.

“It’s a need to give. …

“If you had asked me at 25 (years old) what I thought I’d be doing at 75, I think I would have said I would be happy to be alive. But … I often just seem to step into things and, it seems, I seem to fill a need and it seems to fill a need in me.

“Maybe it helps me become a little bit more complete, a little more whole, a little less egocentric. …

“I always wanted to be a nurse (and) I’m still a nurse. I thought the other day: This is ridiculous at my age. But I know a lot of nurses who are older than I am that are still going. Maybe that’s it. (Volunteering) keeps you involved in life. Or death. …”

Margaret realizes that the volunteering she does isn’t for everybody. One of her daughters, for instance, works in an office in Minneapolis. On a recent Thursday, the daughter gave blood; on Friday, she tutored refugees; on Saturday, she fed the homeless.

“Her skills (are not nursing) but she still feels the need to go out and help. I think a lot of people want to help and try a lot of different things before the thing that really fits them comes along. I think that’s OK. Everything (you do) gives you a different perspective.”

And age has little to do with anything. When she retired, Margaret joked to an older friend that now she was an elder.

“(My friend) said, ‘I’m an elder, Joe’s an elder, Ellen’s an elder. You are an elder-in-training.’ I thought, ‘I can do that.’ (When I retired) at 65, you tend to think, well, this is it — and it’s not. (Life) goes on and on and if you look at it as an elder-in-training, then you have a job. …

“It’s nice to know I can keep growing at my age. You don’t think about it, but you do (keep growing). Sometimes faster, I think, than when you were younger.”

Sometimes, Margaret will be with someone when they die.

“(I say), ‘Goodbye. You’re free to go.’ I usually say a prayer.

“The staff has procedures to follow (and) one time there was a nurse and a student nurse when this lady died. Or gentleman, I can’t remember. The nurse said (to the student), ‘You just stay here while I go do this.’ I could tell the poor girl was just really not comfortable.

“I finally said, ‘You know you really don’t have to stay here.’ I said, ‘I’m OK. I’m not afraid to be alone with them.’

“You don’t learn that young, you learn that as you grow, and it’s not (at all) fearful.”

Margaret will stay for a while longer in the hospital room.

“I guess I don’t think about it as they’re going to heaven. You want them to go to peace, to go wherever they want to go — back into the universe, whatever. At that point, it’s their individual destiny.

“For me, it’s just … being able to be there for somebody. So they’re not alone.

Complete Article HERE!

Hump Day Humor – 05/13/15

Humor takes the sting away; it humanizes us; it helps us keep our perspective. Humor enriches us; it educates us; it brings us joy. Humor doesn’t dissolve the pain or make our life any less poignant, but it does help make things more bearable. That’s my philosophy, and I’m happy to share it with you on a weekly basis. I hope that if you enjoy what you see, you will take the opportunity to share it with others.

african violet

cool

cooler death

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Right to die: Dr Rodney Syme hands patient Ray Godbold life-ending medication

By 

A small brown bottle of liquid sits on the table, positioned between the two men.

The glass has no label, but both the patient and the doctor know what it holds.

Cancer sufferer Ray Godbold, left, meets Dr Rodney Syme, of Dying with Dignity Victoria. Photo: Justin McManus

The sick man calls it “control” and the urologist calls it “medication”, but the non-prescription substance has another name.

Nembutal was once a common sedative but is now more often used by vets to put pets to sleep. It is also the drug of choice for those who believe in the “right to die” – when physical pain and emotional misery become too much to bear.

Ray Godbold, 59, wipes his runny nose and explains what has led him from his home in Inverloch to this Philip Island holiday shack, surrounded by chittering birds perched in coastal banksias.

He has come to meet with Dr Rodney Syme, 79, the controversial vice-president of Dying with Dignity Victoria, to discuss the final stage of his life and his control over how those minutes unfold.

They first met here 12 months ago. Godbold had stage four gastroesophageal cancer, which had spread to his liver and lymph nodes. They kept in touch as the disease progressed. Now they are back.

Reasons for concern have been mounting. The cancer is taking more of his metabolism away, along with his appetite and energy. His pain and discomfort are growing, with dizzy spells and a few falls.

“I can tell – in myself – that the cancer will eventually…” he pauses, stopping to gather his thoughts. “I’m not as well as I have been.”

Both men know how his disease will progress from here.

Catastrophic events such as a heart attack, pulmonary arrest, embolism or severe bleeding are a risk. Liver failure and jaundice are a concern and, as the cancer spreads, cachexia or “wasting”.

“If I was here in my underwear, you would see the ravages of the cancer on my body,” says Godbold. “If I took my clothes off, you would say I was already cachetic.”

Ray Godbold was once a palliative care nurse – he is now dying from gastroesophageal cancer.

Godbold talks the talk because he spent 34 years as a nurse. As a midwife, he has been in the delivery room for the arrival of so many newborns, and he has also been present in homes and hospices as countless others have died in his specialist palliative care.

Godbold knows what a bad death looks like, and he does not want that for himself or his loved ones. And so he wants that little brown bottle on the table. He wants control.

He does not want to meet any new doctors or nurses in his final days. He does not want a drip of morphine and Midazolam to send him into a coma.

He does not want strangers making decisions about his death while he is unconscious, while his family sits for hours, days or even weeks – waiting for his last breath.

He has been positive up until now, but new metastases have come up and there is a creeping “existential despair” about how the end will come.

“My thoughts are starting to get a little bit darker, about death approaching,” he says. “I have had a psychological change.”

Rodney Syme nods. He points out that doctors cannot measure pain, breathlessness or tiredness. They cannot quantify despair and therefore must accept that only the patient can judge when suffering becomes insufferable.

He has been helping people in this situation for 25 years, by doing what he is about to do.

He hands the bottle over.

“That’s medication for you – some Nembutal,” he says. “You need to take that by mouth, and you will have total control of that. It’s not my intention that you take it. I hope you don’t need to take it. But if you run into a brick wall, then that is what I sometimes call the key to the fire escape.”

If needed, this small bottle of Nembutal will be enough to end Ray Godbold’s life.

The two men shake hands and begin discussing the efficacy of what is, in effect, a black market substance. Nembutal is a “border controlled drug”, possession of which is a breach of law. Penalties range from imprisonment to fines of up to $825,000.

“If you take it,” says Dr Syme, “you will go to sleep relatively quickly and peacefully, and you will not wake up.”

If Godbold ingests the powerful barbiturate, he will be able to talk to his family for a few minutes, but the conversation will slow. He might yawn deeply, lying there in his bedroom. He will close his eyes at times, and drift into sleep.

In unconsciousness, the drug will slow his brain activity and nervous system. His heart rate will weaken. His breathing will become shallow. He will be dead in perhaps 20 minutes.

“Thank you,” he says. “It gives me great peace of mind to know that I’ve got it in my possession. I very much appreciate what you’re doing for me.”

What both men are doing is taking a stand. They are mounting a public challenge to current laws that deny people the right to take their own life with the help of a doctor, through medication that can assist their passing in a peaceful and reliable way.

Ray Godbold and Dr Rodney Syme are making a public stand on the “right to die” issue.

They expect a reaction. They want a debate – about what Dr Syme has already done for decades.

Paul Russell, director of HOPE, an organisation devoted to preventing euthanasia and assisted suicide, said it was “frustrating” that any doctor would supply patients with life-ending medication. “Euthanasia is never safe.”

One of his main arguments against “right to die” legislation is the inevitable “incremental extension” of those laws. In the Netherlands and Belgium, he says, people have been euthanised after psychiatric illnesses, botched sex change operations, or fear of going into a nursing home.

The story of Ray Godbold creates an “impetus for change”, he says, but equally there are other stories that should create “cause for pause or thought”.

In Victoria, it is a criminal offence to incite, aid or abet a suicide, with a maximum penalty of five years’ jail, yet no Victorian doctor has been charged with assisting suicide in the past 50 years.

Ray Godbold with his wife, Robyn. Both are nurses, and know what suffering looks like.

Dr Syme says he has been “frightened” to publicly reveal his work as it might get him into “deep trouble”, but says the time for hiding has passed.

State Parliament has rejected 16 euthanasia bills over the past 20 years, and although a new inquiry into end of life choices has been launched, Dr Syme feels the issue needs a push.

He is happy to make his actions known, and is even delivering an address on the subject to the annual conference of the Royal Australasian College of Physicians later this month.

Offering people this kind of control, he says, helps relieve angst and potentially extends life by removing anxiety about death. Then finally, as a last resort, medication can be a way out of a protracted and gruesome passing.

“I’ve set out to challenge whether what I am doing here publicly is a criminal offence,” he says. “I believe I can argue that it’s not – that it’s good palliative medicine.”

Ray Godbold at home in Inverloch, tending the garden in readiness for winter.

Ray Godbold is a believer in palliative care. He knows it may be enough for him, as it was for right to die campaigner Peter Short.

But he does not want to be forced to rely on their restrictive processes when the end of his “mortal cycle” is near – when he believes he should have a choice.

“When it comes to the end of my life,” Godbold says, “my trust is with myself.”

In the meantime, he is painting the house, bedding down the garden for winter, and making sure there are no odd jobs left behind when he is gone.

He wants to be ready for that moment, in every way.

“I want to gather my family around me and just say goodbye, and go my way – not your way,” he says. “Now’s the time.”
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Catawba students examine death and dying in honors class

Most college students arrive on campus expecting to live a long, long life and planning to take courses focusing on the ways that humans live and think, knowing, as Socrates says, “the unexamined life is not worth living.” It might come as a surprise, then, that this spring 19 honors students at Catawba College chose to take a course entitled “Joining the Choir Invisible: On Death and Dying.”

Student Savannah Miller looks at different grave stones. Julieanna Herriven/Catawba College

Team-taught by English professor Dr. Janice Fuller and psychology professor Dr. Erin Wood, this honors course was designed to explore the biological, psychological, religious, and sociological phenomena at work when humans die and prepare to die. The course also explored postmortem realities, including how various societies treat human remains and memorialize the dead.

The course was structured around texts and films from a variety of disciplines, ranging from “How We Die” by neurosurgeon Sherwin Nuland, “Final Gifts” by hospice nurses Maggie Callahan and Patricia Kelley, and journalistic works on cadavers and American ways of memorializing the dead. The class also analyzed films like “Harold and Maude” and “Afterlife” and the television series “Six Feet Under” as texts to help them examine and develop their attitudes toward death.

Yet it may have been through experiential learning that the students most directly encountered dying and death.

Hospice volunteer and poet Michael Gaspeny spoke to the class about his closeness with patients faced with end-of-life decisions. Gaspeny’s stories brought the reality of working with distinctive dying patients to life.

“Everyone is an individual until that person disappears from this earth,” Gaspeny began. To make his point, he shared a few of his award winning poems about his hospice patients.

“People die as they live,” Gaspeny said.

Students visited UNC Chapel Hill’s Exercise Science cadaver lab where they viewed two cadavers donated to the lab for the advancement of science. Despite the chilly room and chemical smell the students remained eager to have a hands-on experience with the cadavers.

“At one point I was able to hold the brain of one of the cadavers,” said Kala Byrd of North Wilkesboro.

The cadaver lab gave her an understanding of how simple yet complex the human body really is and what death takes away from the living person.

The visit to the cadaver lab prepared the students to read Marianne Boruch’s “Cadaver, Speak,” a 32-section poem written in the voice of a 99-year-old cadaver Boruch observed in Purdue University’s Gross Anatomy lab. After reading the poem, the students presented the poem through a theatrical reading that was open to the public.

The staging caused students to have vivid memories of the cadavers they had personally observed at the UNC lab and helped bring the poem’s 99-year-old cadaver to life. Sara Sellers of Salisbury commented that Boruch “presents this cadaver as a person who has a past and who has memories. The beauty in this is that the 99-year-old lived a full life before death. Death is better than not ever existing.”

On a chilly Saturday in March, the class took a field trip to local graveyards. These cemeteries gave the students insight into local traditions and values followed in honoring loved ones in distinctive ways.

“I was rather shocked by how much I loved the Salisbury National Cemetery. I am a staunch believer in individuality when it comes to after-death plans … (yet) I admired the uniformity of all of the headstones … These soldiers were a united force that fought for a common goal and that unity is still on display after death,” Michael Jones of Salisbury wrote.

For the final paper, students outlined the end-of-life plans that they might want to make, using Aging with Dignity’s document “Five Wishes.”

At the beginning of the class, many students expressed anxiety about the fact of death. Some admitted being unable to conceive of really dying – an idea that Jo Ann Beard expresses in her essay “Undertaker Please Drive Slow.”

“It is impossible to imagine not existing because in order to imagine you must exist,” Beard said.

And yet imagine and plan and enact death the Honors students did. Perhaps, after all, the unexamined death is not worth – well, dying.
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