05/31/16

Why GPs need better end of life training

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By Matt Bowskill

Many GPs lack confidence when it comes to end of life care. Thinking back to my own family’s experiences, I explore the support available for doctors.

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It was cold even for February and my headlights lit up sheets of rain as I pulled into our parking space. I was surprised to see my wife running towards me in the rear view mirror.

“I think you should come inside and sit down,” she said gently. I remember her stood there in her dressing gown and slippers. She was getting completely drenched. But that might be the kind of detail you misremember when your brain is sent into a sudden spin.

“…there’s been some bad news, your Mum rang, your Dad…..his oesophagus, cancer, blah blah blah………they don’t know, they don’t know, they don’t know. You need to call your mum…”

That “they don’t know” turned into more “they don’t know”. For 5–6 weeks, through endless appointments with specialists, scans, and doctor’s appointments. Eventually they did know. A consultant talked Dad and Mum through end of life care options.

But it was his GP who initially referred him after he’d had problems swallowing (he’d been a little sceptical that there was a problem). It was his GP who acted as a day-to-day source of contact in the days, weeks and months ahead.

And it was the same GP who Mum and Dad would visit between hospital appointments — to check in with, for prescriptions to help with pain or sleeping and, more than anything, for someone to talk to.

Challenging conversations

“It can feel overwhelming that the needs and trust of the patient and their carers are solely placed on you. Particularly when you’re working in an out-of-hours setting, or on-call within the practice. You can feel very isolated,” says Dr Elise Long, a salaried GP working in Cardiff.

“I’ve personally felt like I need to further my clinical knowledge of symptom management and my communication skills.”

Elise isn’t alone.

Many GPs find it difficult to discuss death and dying with patients. Research shows that doctors sometimes don’t initiate end of life care conversations and many say they find it more comfortable when the subject is brought up by patients. Clearly, it is a distressing topic.

“There’s bound to be a lack of confidence in some quarters,” says Marie Curie Medical Director, Professor Bill Noble. “It’s never straightforward. So much depends on your experience and training background.”

Some patients say they don’t want further information from GPs. But many want a clear idea about the future in order to start planning ahead. So how do GPs go about assessing these different needs? And how do they effectively approach these very difficult conversations?

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Developing relationships

Zoe Hutchinson qualified as a GP three years ago and now works in Littleport, Cambridgeshire. It’s a remote location, where she says many patients can feel isolated — particularly after being diagnosed with a terminal illness.

She says her undergraduate medical training inspired a passion for palliative care: “It’s an important issue. All our patients face the prospect of needing end of life care at some point”.

Dr Hutchinson embraces her position as the central point of contact for her rural patients. She talks about the time she spends liaising with district nurses and others involved in end of life care, visiting remote patients, identifying the need for ‘just in case’ medicines, and establishing the needs and wishes of the patient and their family.

“But really, having an open conversation with the patient and their family is the most important thing. To do that you need to be able to understand when a patient is ready to have conversations about end of life care. It’s hard. One of my patients suffers from anxiety. I can tell they don’t want to talk about death and dying yet. It’s about really getting to know them,” she says.

I ask several other GPs about what they think makes for good end of life care. They all agree: communication. Specifically: communication based on developing genuine human relationships with patients.

A recent video collaboration between the GMC and National Council for Palliative Care explores the same issue (see it here). Patients and family members talk about the difference it makes to be treated like individuals. GPs talk about the need for us all to talk about death more openly. But when distressing conversations need to be had, it’s important they happen in a planned way, at the right time, in private, and with relevant family members or carers present.

Clarity and communication

After Dad’s diagnosis, I’d call my parents on a daily basis when I couldn’t visit. We were all grasping at that stage: for information, for certainty, for hope. I could sense their frustration as they tried to remember what they’d been told by the consultant or GP.
Often the details seemed jumbled or confused. It seemed to me like things hadn’t always been explained particularly well. When I mentioned this to Mum recently, she said the GP had been very good, but it seemed he was hearing updates about Dad’s condition for the first time from them.

When you feel all at sea, clear communication is like a lifebelt. Asking patients to repeat information to make sure they’ve understood it is one technique GPs use. But there’s another question: has information about the patient been shared as effectively as possible between people involved in caring for the patient?

It’s a problem that’s being tackled through electronic tools like EPaCCs(electronic palliative care coordination systems), with which healthcare professionals involved in palliative care can share information more effectively.

This gives everyone involved access to timely information. It also helps identify those patients who are approaching the end of their life, so important conversations can take place and the wishes of patients and families considered. And it ensures patients can be referred to services at the right time.

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Gold plating end of life care

But what else can be done to improve the quality of support GPs can offer? Everyone I spoke to talked about the need for more training with a palliative care focus.

In 2013, the Royal College of General Practitioners and Marie Curie formed a partnership to improve the end of life care offered by GPs. Since 2015, the partnership has produced a series of one-day end of life masterclasses for GPs, run by experts across the UK. More classes are planned for later in 2016.

“When you ask GPs what they need to know about palliative care they say they need: confidence about communication, knowledge about symptom control and good relationships with local nursing service,” says Professor Noble. The masterclasses there cover the issues GPs themselves have identified as things they need to know more about. Also covered are medical-legal issues and general changes to policy and practice.

“GP training gives you a good base to start from. The problem is you need to know something about everything,” says Dr Michael Brookes, an RCGP/Marie Curie Clinical Fellow who helped run several of the sessions. “It’s impossible to train for every eventuality. We need to give people the skills to deal with end of life effectively. That also means fostering a hunger for self-improvement.”

Another outcome of the partnership has been the Palliative Care End of Life Toolkit, which supports patients and GPs at the end of life. “End of life care is one of the biggest things you can do to make a difference. You can see the effect being able to support a ‘good death’ has on everyone,” says Dr Brookes.

Both Dr Long and Dr Hutchinson attended our masterclasses. “It was an amazing opportunity to meet and hear from palliative care leaders. And amazingly, given the calibre of speakers, it was completely free,” says Long.

“I’d always been interested in end of life care during my GP training,” says Dr Hutchinson. “I’m already putting tips on prescribing ‘just in case’ medicines into practice, and the advice on difficult ‘bad news’ conversations was invaluable. Training has improved. But the masterclasses help to gold plate it.”

What next?

When I ask Professor Noble what he thinks needs to be our next focus, his answer is immediate: 24/7 end of life care. More needs to be done to make sure high-quality 24/7 end of life care is available to patients within communities. GPs are a central point of contact for patients who’ve been affected by terminal illness, and their families. They play a crucial role in delivering this service effectively.

“At the moment GPs very rarely provide out-of-hours care to their own patients. It’s sometimes handed over to emergency call systems. And that’s problematic,” says Professor Noble. “Continuity matters more in end of life than in any other area. Patients shouldn’t have to go over the same ground again and again.”

Six months after his initial diagnosis, Dad was rushed into hospital for what would be the final time. Mum remembers the GP being limited in his ability to do all that much during the previous six months. He was more a point of contact — someone to talk to when things got tough. But Dad liked him. That was important

After Dad died, the GP rang my mum to offer his condolences. “Any time you want to come in and talk, we’re here for you,” she remembers him saying. It meant a lot. It still does.

To find out more about how Marie Curie provide care and support at the end of life, visit their website.

Complete Article HERE!

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05/30/16

Death Talk Is Cool At This Festival

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A chalkboard "bucket list" stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.

A chalkboard “bucket list” stirred imaginations and got people talking at an Indianapolis festival designed to help make conversations about death easier.

In a sunny patch of grass in the middle of Indianapolis’ Crown Hill Cemetery, 45 people recently gathered around a large blackboard. The words “Before I Die, I Want To …” were stenciled on the board in bold white letters.

Sixty-two-year-old Tom Davis led us through the thousands of gravestones scattered across the cemetery. He’d been thinking about his life and death a lot in the previous few weeks, he told us. On March 22, he’d had a heart attack.

Davis said he originally planned to jot, “I want to believe people care about me.” But after his heart attack, he found he had something new to write: “I want to see my grandkids grow up.”

Others at the event grabbed a piece of chalk to write down their dreams, too, including some whimsical ones: Hold a sloth. Visit an active volcano. Finally see Star Wars.

The cemetery tour was part of the city’s Before I Die Festival, held in mid-April — the first festival of its kind in the U.S. The original one was held in Cardiff, Wales, in 2013, and the idea has since spread to the U.K., and now to Indianapolis.

The purpose of each gathering is to get people thinking ahead — about topics like what they want to accomplish in their remaining days, end-of-life care, funeral arrangements, wills, organ donation, good deaths and bad — and to spark conversations.

“This is an opportunity to begin to change the culture, to make it possible for people to think about and talk about death so it’s not a mystery,” said the festival’s organizer Lucia Wocial, a nurse ethicist at the Fairbanks Center for Medical Ethics in Indianapolis.

The festival included films, book discussions and death-related art. One exhibit at the Kurt Vonnegut Memorial Library had on display 61 pairs of boots, representing the fallen soldiers from Indiana who died at age 21 or younger.

These festivals grew out of a larger movement that includes Death Cafes, salon-like discussions of death that are held in dozens of cities around the country, and Before I Die walls — chalked lists of aspirational reflections that have now gone up in more than 1,000 neighborhoods around the world.

“Death has changed,” Wocial said. “Years ago people just died. Now death, in many cases, is an orchestrated event.”

Medicine has brought new ways to extend life, she says, forcing patients and families to make a lot of end-of-life decisions about things people may not have thought of in advance.

“You’re probably not just going to drop dead one day,” she said. “You or a family member will be faced with a decision: ‘I could have that surgery or this treatment.’ Who knew dying was so complicated?”

With that in mind, the festival organizers held a workshop on advance care planning, including how to write an advance directive, the document that tells physicians and hospitals what interventions, if any, you want them to make on your behalf if you’re terminally ill and can’t communicate your wishes. The document might also list a family member or friend you’ve designated to make decisions for you if you become incapacitated.

“If you have thought about it when you’re not in the midst of a crisis, the crisis will be better,” Wocial said. “Guaranteed.”

About a quarter of Medicare spending in the U.S. goes to end-of-life care. Bills that insurance doesn’t cover are usually left to the patients and their families to pay.

Jason Eberl, a medical ethicist from Marian University who spoke at the festival, said advance directives can address these financial issues, too. “People themselves, in their advance directive will say, ‘Look, I don’t want to drain my kids college savings or my wife’s retirement account, to go through one round of chemo when there’s only a 15 percent chance of remission. I’m not going to do that to them.’ ”

The festival also included tour of a cremation facility in downtown Indianapolis. There are a lot of options for disposing of human ashes, it turns out. You can place them in a biodegradable urn, for example, have them blown into glass — even, for a price, turn them into a diamond.

“It’s not inexpensive,” Eddie Beagles, vice president of Flanner and Buchanan, a chain of funeral homes in the Indianapolis area, told our tour group. “The last time I looked into it for a family, “it was about $10,000.”

A crematorium tour was part of the festival, too. Metal balls, pins, sockets and screws survive the fire of cremation.

A crematorium tour was part of the festival, too. Metal balls, pins, sockets and screws survive the fire of cremation.

“Really, when it comes to cremation, there’s always somebody coming up with a million dollar idea,” Beagles added. “If you can think of it, they can do it.”

Beagles showed us a pile of detritus from cremated human remains. He picked up a hip replacement — a hollow metal ball — then dropped it back into the ashes.

I’m a health reporter, so I know a fair amount about the things that could kill me, or are already killing me. But watching this piece of metal that used to be inside a human be tossed back onto the heap gave me pause. I’m thinking about what I might write on a “Before I Die” wall. I still don’t know — there are many things to do before I go. But I’m thinking about it a lot harder now.

Complete Article HERE!

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05/29/16

Ancient Story, Modern Message: The Cracked Pot

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An elderly Chinese woman had two large pots. Each pot hung on the ends of a pole, which she carried across her shoulders. Every day, she used this device to carry water to her home.

One of the pots was perfect and always delivered a full portion of water. The other had a deep crack in it and leaked. At the end of the long walk from the stream to the house, the cracked pot arrived only half full.

For a full two years this situation occurred daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, the cracked pot spoke to the woman one day by the stream, saying, “I am ashamed of myself because this crack in my side causes water to leak out all the way back to your house.”

The old woman smiled and replied, “Did you notice that there are flowers on your side of the path, but not on the other pot’s side? I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walked back home you watered them and made them grow. For two years, I have been able to pick these beautiful flowers to decorate the table and give to my friends and neighbors. Without you being just the way you are, there would not have been this special beauty to grace our homes and lives.”

Sometimes, it’s the “cracks,” or what we perceive as imperfections, in this reality that create something unexpected and beautiful. These “cracks” allow something to change and ultimately make the whole much richer and more interesting. Every thing and every being has its own unique purpose and destiny to fulfill. This is one of the great beauties of the Tao. 

Complete Article HERE!

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05/28/16

On Death and Dying: Opening the door to discussion

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by Tara Baysol, Living with Cancer

After I was diagnosed with brain cancer, I developed a desire to have really tough conversations about death and dying with my family so that I could share my thoughts with them and feel less alone on this journey that’s been full of uncertainty. At first, this was quite challenging for me and my family, but one of the things that has really helped us to be able to have these tough conversations was my realization that this topic was not something unique and exclusive to me and people like me, but rather a conversation we all should be having regardless of age, health, and condition.

TaraBaysolNobody lives forever and even though some people may seem to have better odds than others, tomorrow is not guaranteed to anyone. Unfortunately, our society makes death and dying very frightening because the only time people get asked about their wishes and end of life care is when death seems to be looming directly over them. This prevents us from developing any level of familiarity, comfort, and acceptance with this topic.

In an effort to confront this problem and try to combat this societal barrier, I began advocating for my entire family to have these conversations and revisit them regularly so that when the time comes we are each able to revisit this topic as a familiar concept opposed to completely foreign and devastatingly unbelievable circumstances.

While there are very real emotional and social challenges associated with addressing this topic, I’ve become incredibly empowered by the idea that there are still things out there that I have a choice over. This has been a very rewarding and welcomed realization after struggling to manage the overwhelming feelings of uncertainty and loss of control that formed after my diagnosis.

My intention is not to instill paranoia about death or dying, but rather begin to open a door for each of you to have those tough conversations about your future wishes regarding being comforted, supported, treated, and remembered when the time arises. At no point are you giving up hope by talking about this topic. You are simply ensuring that your wishes regarding the eventually inevitable circumstance that everyone will face are communicated and respected.

 

Complete Article HERE!

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05/27/16

NYU: We Didn’t Know That Donated Bodies Were Winding Up In Mass Graves

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NYU

 
New York University has apologized for allowing bodies donated for use as cadavers by medical students to wind up in mass graves for paupers.

The New York Times found (http://nyti.ms/1Ua2cO5 ) that the remains of donors who had signed forms that promised cremation and the disposal of their ashes “in an appropriate and dignified manner” were instead sent to Hart Island, a potter’s field where unclaimed bodies are buried at public expense.

“As an institution, we weren’t aware that this was happening,” Lisa Greiner, a spokeswoman for NYU Langone Medical Center, told the Times.

Mel Rosenfeld, the senior associate dean for medical education at NYU, said the practice ended in 2013 when the medical school instituted “major changes to our disposition practices for donor remains.” Now, all donated cadavers are cremated, with the ashes returned to families or scattered in a crematory’s memorial garden.

The bodies buried on Hart Island included those of well-off and prominent New Yorkers such as the reproductive rights advocate Ruth Proskauer Smith, who died in 2010 at the Dakota, one of New York City’s most fabled apartment buildings.

Her son, Anthony R. Smith, said in a letter to the Times that his mother would have been outraged by the way her remains were handled “not because she would have cared where she was ‘disposed of’ but because this hugely wealthy institution used this device to cheat the city by having taxpayers pay for burial.”

Marie Muscarnera was buried in a mass grave in 2008 even though she had left $691,700 to the NYU medical school in her will.

The Times says that Muscarnera grew up in Brooklyn in dire poverty but amassed a nest egg of more than $1.3 million through her dressmaking talent and shrewd investments.

Muscarnera left all her money to charity and donated her body to the medical school for use as a cadaver, signing the form saying she wished her remains to be cremated.

Instead, the medical school used her body as a cadaver for three years and then paid a funeral home $225 to transport it to a city morgue in the Bronx. Muscarnera’s body was boxed in pine and ferried to Hart Island, where the city pays inmates 50 cents an hour to do the burying.

Complete Article HERE!

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05/27/16

To Be Happier, Start Thinking More About Your Death

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WANT a better 2016? Try thinking more about your impending demise.

Years ago on a visit to Thailand, I was surprised to learn that Buddhist monks often contemplate the photos of corpses in various stages of decay. The Buddha himself recommended corpse meditation. “This body, too,” students were taught to say about their own bodies, “such is its nature, such is its future, such its unavoidable fate.”

Paradoxically, this meditation on death is intended as a key to better living. It makes disciples aware of the transitory nature of their own physical lives and stimulates a realignment between momentary desires and existential goals. In other words, it makes one ask, “Am I making the right use of my scarce and precious life?”

In fact, most people suffer grave misalignment. In a 2004 article in the journal Science, a team of scholars, including the Nobel Prize winner Daniel Kahneman, surveyed a group of women to compare how much satisfaction they derived from their daily activities. Among voluntary activities, we might expect that choices would roughly align with satisfaction. Not so. The women reported deriving more satisfaction from prayer, worship and meditation than from watching television. Yet the average respondent spent more than five times as long watching TV as engaging in spiritual activities.

If anything, this study understates the misalignment problem. The American Time Use Survey from the Bureau of Labor Statistics shows that, in 2014, the average American adult spent four times longer watching television than “socializing and communicating,” and 20 times longer on TV than on “religious and spiritual activities.” The survey did not ask about hours surfing the web, but we can imagine a similar disparity.

This misalignment leads to ennui and regret. I’m reminded of a friend who was hopelessly addicted to British crossword puzzles (the ones with clues that seem inscrutable to Americans, such as, “The portly gentleman ate his cat, backwards”). A harmless pastime, right? My friend didn’t think so — he was so racked with guilt after wasting hours that he consulted a psychotherapist about how to quit. (The advice: Schedule a reasonable amount of time for crosswords and stop feeling guilty.)

While few people share my friend’s interest, many share his anxiety. Millions have resolved to waste less time in 2016 and have already failed. I imagine some readers of this article are filled with self-loathing because they just wasted 10 minutes on a listicle titled “Celebrities With Terrible Skin.”

Some might say that this reveals our true preferences for TV and clickbait over loved ones and God. But I believe it is an error in decision making. Our days tend to be an exercise in distraction. We think about the past and future more than the present; we are mentally in one place and physically in another. Without consciousness, we mindlessly blow the present moment on low-value activities.

The secret is not simply a resolution to stop wasting time, however. It is to find a systematic way to raise the scarcity of time to our consciousness.

Even if contemplating a corpse is a bit too much, you can still practice some of the Buddha’s wisdom resolving to live as if 2016 were your last year. Then remorselessly root out activities, small and large, that don’t pass the “last-year test.”

There are many creative ways to practice this test. For example, if you plan a summer vacation, consider what would you do for a week or two if this were your last opportunity. With whom would you reconnect and spend some time? Would you settle your soul on a silent retreat, or instead spend the time drunk in Cancún, Mexico?

If this year were your last, would you spend the next hour mindlessly checking your social media, or would you read something that uplifts you instead? Would you compose a snarky comment on this article, or use the time to call a friend to see how she is doing? Hey, I’m not judging here.

Some might think that the last-year test is impractical. As an acquaintance of mine joked, “If I had one year to live, I’d run up my credit cards.” In truth, he probably wouldn’t. In a new paper in the science journal PLOS One, two psychologists looked at the present value of money when people contemplated death. One might assume that when reminded of death, people would greatly value current spending over future spending. But that’s not how it turned out. Considering death actually made respondentsless likely to want to blow money now than other scenarios did.

Will cultivating awareness of the scarcity of your time make you grim and serious? Not at all. In fact, there is some evidence that contemplating death makes you funnier. Two scholars in 2013 published an academic paperdetailing research in which they subliminally primed people to think about either death or pain, and then asked them to caption cartoons. Outside raters found the death-primed participants’ captions to be funnier.

There’s still time to rethink your resolutions. Forget losing weight and saving money. Those are New Year’s resolutions for amateurs. This year, improve your alignment, and maybe get funnier in the process: Be fully alive now by meditating on your demise. Happy 2016!

Complete Article HERE!

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05/27/16

Pets Get Send-Off Wit A Very Human Touch

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By Yves Herman and Meredith McGrath

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Pets are getting a high-class send-off at Animatrans, a funeral home that claims to be the first in Belgium to cater exclusively for pets.

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Chantal Detimmerman weeps at the funeral parlour as she spends a last few moments with her beloved Chico who has been prepared for cremation and laid out in a dog basket.

That is no disrespect for Chico.

Curled up as if asleep, with a garland of flowers around one paw, the Chihuahua is getting a high-class send-off at Animatrans.

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“I loved him so much that I decided to keep his ashes, to always have Chico next to me,” Detimmerman said.

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Other customers choose to turn their dead pets into an even more tangible reminder.

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“Arthur was a special duck,” said Myrian Waeles, who nuzzles her nose against the mallard’s green head as she poses for photographs at her home in nearby Lennik, a town west of Brussels.

Arthur stares ahead with the same expression he has had for the last eight years, since he died and Waeles took him to Animatrans to be stuffed. The company also makes death masks, casting an impression of an animal’s face in long-lasting resin.

“Having Arthur, stuffed next to me, comforts me.”

“He was always waiting for me at the door when I came home, walking next to me in the living room,” Waeles said of her duck.

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Patrick Pendville set up the funeral service after seeing first-hand what animal disposal often looks, and smells, like.

Dropping a dead dog off at an animal rendering plant, a guard instructed him to unpack the carcass, remove its collar, and throw the body into a two-metre-high (7-foot) container swarming with flies, among other animal remains.

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Pendville says his company – which charges between 35 and 350 euros for a cremation – provides a humane way for people to say goodbye to animals they feel were part of the family. But by law it is classified as a processor of hazardous waste.

“I totally refuse (that) name,” he said. “I eagerly wait for when a pet is considered to be sentient and not an expired common commodity when it dies.”

Complete Article HERE!

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