11/15/17

What It’s Like to Learn You’re Going to Die

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Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

Nessa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisisWhether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

Complete Article HERE!

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07/24/17

‘Are you saying I’m dying?’ Training doctors to speak frankly about death

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Two employees from Alive Hospice take on acting roles as a terminally ill patient and a family member as part of a training simulation to help a doctor learn to speak openly about end-of-life care.

By Max Blau

The doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn’t need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six months to live, at most. But her doctor is unable to find the right words.

“My cancer’s not gone? I thought it was getting better,” the patient says, bewildered.

“That’s the tough part …” the doctor replies.

“So, no further treatment?”

“I think we need to focus on quality [of life] over quantity.”

“Are you saying I’m dying?”

From the other side of a two-way mirror, Anna-Gene O’Neal listens closely. She’s set up this simulation — the prognosis is part of a script; the patient is an actor; the physician is being recorded — to improve the way he broaches the topic of death with real patients. O’Neal hears the mock patient all but pleading with the doctor to give her a direct answer. He struggles to do so. After a few minutes, she opens the door to end the simulation.

O’Neal, who runs Alive Hospice here in Tennessee, launched the SHARE simulation lab last year. Participants run through four scenarios. The actors playing patients reply with all the emotions — confusion, denial, anger, grief — that doctors might encounter in real exam rooms. Afterwards, O’Neal sits with the doctors as they watch tape of these interactions on a big-screen TV.

Faced with the uncomfortable task of discussing death, doctors often avoid the topic. Only 17 percent of Medicare patients surveyed in a 2015 Kaiser Family Foundation study said they had discussed end-of-life care — though most wanted to do so. Since that study, Medicare has begun reimbursing providers for having these conversations. Yet still, just a fraction of Medicare recipients at the end of life have those talks with their doctors.

In response, advocates for improving end-of-life care have launched training sessions for doctors around the country.

In California, Stanford’s palliative medicine department has trained dozens of hospice nurses using exercises similar to those carried out here by Alive. In New York, oncologists at the University of Rochester Medical Center observe their peers having conversations with real patients facing terminal illness. In Arizona, the administrators of Phoenix-based Hospice of the West hold regular training sessions, complete with small group discussions, at staff meetings.

Simulators with live actors have intuitive appeal, especially since doctors rarely get hands-on experience with these tough conversations in medical school. But Dr. Scott Halpern, director of the University of Pennsylvania’s Palliative and Advanced Illness Research Center, said there’s little evidence that simulators are any more effective than any other clinical training to improve end-of-life counseling. They show a “tremendous amount of face validity,” he said, but they must be held “to a standard of showing benefits for patients, not a standard of an appealing anecdote.”

O’Neal, 50, agrees more evidence is needed. But she’s also so gung-ho about her simulator that she’s pushing to expand it across the country. Four health organizations — including faith-based Ascension Health — have agreed to let Alive train their clinicians. Later this year, O’Neal plans to work with medical students at one school in Tennessee. Down the road, she hopes to get some independent practice associations to require their members to undergo her training.

“It’s about doing the right thing,” O’Neal said. “I feel strongly that if you do the right thing by people, they’re going to make different decisions.” That shift could lead to more of what she calls “good deaths,” with patients fully aware of their prognosis and able to choose whether they want aggressive, long-shot treatments or would prefer to simply have their pain managed while they spend their final days with friends and family.

Alive Hospice CEO Anna-Gene O’Neal chats with a doctor who went through a simulated scenario about how he can improve his communication with patients.

The little things that can make a big difference

Two of O’Neal’s closest friends died young from breast cancer. Seeing their hospice nurses bring light to the darkness of death prompted O’Neal to think back on her own professional experiences caring for babies as a neonatal nurse and for the elderly as a health care executive. What stood out: the power of clear, concise communication between clinician and patient.

O’Neal came to believe health providers in all specialties should be trained to have such direct conversations. In 2012, she was hired as CEO of Alive Hospice, a nonprofit chain of hospice care facilities serving more than 3,500 patients and families a year in central Tennessee. She soon realized that many Americans lived in “a crisis of denial of our own mortality,” in part because “medical institutions encourage us to never give up.”

So she launched the SHARE simulator. Clinicians pay to participate — $350 to work through four scenarios and then watch the videos and get feedback from O’Neal or her staffers. (To give doctors more privacy, Alive deletes the footage after each session, handing them the only copy so they can review it later if they’d like.)

The work unfolds in a low-slung brick building near Nashville’s Music Row, in a room that looks like a typical hospice or hospital room, set up with a bed, a couch, a box of tissues, and a stack of travel magazines. Tiny microphones dangle from the ceiling to record audio without intruding on the intimacy of conversations. Video cameras shaped like domes are mounted on the walls.

So far, O’Neal has trained 12 doctors and 65 other clinicians, including nurses and social workers. O’Neal said some have already tweaked their communication style: Maybe they’re more comfortable with long pauses after breaking hard news to patients, or more aware of body language that may come off as too stern.

“Watching yourself, you get a feel for your posture, whether you’re using specific phrases, looking a person in the eye, or keeping focus on them,” said pulmonologist Dr. Richard Fremont. “It was helpful seeing what I thought I was doing.”

Dr. Robert Taylor, a nephrologist based in Nashville, initially found the cameras in the training room unnerving. But the actors quickly pulled him into the scenario.

“It’s awkward to see yourself,” he said, describing the experience of watching the footage later. But he noticed little things, like his posture and the inflection in his voice. When he saw the mock patients’ reactions, he realized that little shifts in his own approach could change their perception of the conversation.

Taylor said he’s been committed to frank discussions with patients ever since he recognized, early in his career, that dialysis patients rarely got a full picture of their options. Their doctors were often focused on keeping them alive. But the disease and the treatments often make them “so fatigued that it’s not the quality of life they desire,” he said. Ever since, Taylor said he’s taken pains to better communicate all options to his patients; he wanted to go through the simulator to hone that delicate art. “It can alter what you do,” he said, “but also confirm your answers.”

O’Neal said the simulator challenged other doctors’ views that a patient’s death must inevitably be viewed as a failure.

“Once you get doctors into the training, you create an opportunity for them to be vulnerable and see themselves differently,” O’Neal said. “Whether they admit to change or not, they will change.”

A political divide over end-of-life conversations

When the idea of paying doctors to talk about dying was first debated – during the early, bitter fights over the Affordable Care Act in 2009 – conservatives warned that such conversations could be a pretext for pushing the frail and elderly to give up on treatment. Former Alaska Gov. Sarah Palin said funding of end-of-life counseling amounted to a “death panel.” Iowa Sen. Chuck Grassley said it could enable “pulling the plug on grandma.”

The debate still rages: Earlier this year Iowa Rep. Steve King introduced the Protecting Life Until Natural Death Act, which would end federal reimbursements for end-of-life discussions. King has described such conversations as “intolerable to those who respect the dignity of human life.”

But despite such efforts, O’Neal sees growing support for her approach on Capitol Hill. Last month, a bipartisan group of lawmakers — including Democratic Sen. Mark Warner of Virginia and Republican Sen. Johnny Isakson of Georgia — filed a bill that would provide $50 million to fund access, education, and training related to end-of-life treatment for terminally ill patients.

“Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes,” Tennessee Congressman Phil Roe, one of the bill’s sponsors, said in a statement.

O’Neal concurs: Such conversations, she said, empower patients to embrace death on their own terms — and can make those final days “the most meaningful part of the human experience.”

“If somebody’s faith is such that as long as there’s a beating heart, you keep doing everything, we’re 100 percent behind that,” she said. “But if someone says, ‘if I can’t walk to play 18 holes of golf, I’m done,’ we have to respect that as well.”

A doctor, sitting inside Alive’s training room, watches footage of his interaction with a patient and her daughter.

A second chance

O’Neal asks one of her staffers to turn on the big-screen TV in the simulator room so the doctor can review his performance with the 74-year-old patient. As the footage rolls, the doctor grips one of the arms of his chair, bearing a slight grin of discomfort as he watches his fumbling attempts to tell the mock patient she’s dying. Soon, he’s critiquing himself:

“I think I would have been much less polite if I wasn’t on camera …”

“I would’ve been more blunt …”

“That could’ve been done faster …”

After he’s finished, she chimes with nuggets of advice: Don’t let her chase answers. Communicate like it’s a conversation. Honesty is a form of compassion.

“It’s intimidating,” O’Neal reassures him.

The second scenario goes far better. In it, the same patient returns two weeks later with a slew of strange treatment suggestions a relative found on the internet, including a raw beet diet and blood transfusion at a clinic in Juarez, Mexico. The doctor listens intently, careful to let her finish, mindful of his body language.

After she’s done, he leans forward and steers the conversation in another direction. He makes eye contact.

Then, he says in a calm empathetic tone: “We need to start thinking ahead.”

Complete Article HERE!

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06/27/17

The Symptoms of Dying

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You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect.

The Death Rattle

“The graves are full of ruined bones, of speechless death-rattles” (Pablo Neruda)

We suspected the patient wouldn’t survive off the ventilator. A blood clot had crawled up one of the vessels in the back of his brain, blocking blood flow to the area that controlled alertness. He would die from not being awake enough to cough.

The beat of the death rattle began when the breathing tube was removed and continued until life was done. It was a gurgling, crackling sound, like blowing air through a straw at the bottom of a cup of water. The average time between the onset of death rattles to death itself is 16 hours. For him, it was six.

The death rattle is a symptom of swallowing dysfunction. Normally, our tongue rises to the top of the mouth and propels saliva, liquid or food backward. The epiglottis, a flap in the throat, flops forward to protect the swallowed substance from entering the airway.

In the dying process, the symphony of swallowing becomes a cacophony of weak and mistimed movements. Sometimes the tongue propels saliva backward before the epiglottis has time to cover the airway. Other times, the tongue fails to push at all and saliva trickles down the airway to the lungs in a steady stream. The death rattle is the lungs’ attempt to breathe through a layer of saliva.

Despite the sound’s alarming roughness, it’s unlikely that the death rattle is painful. The presence of a death rattle doesn’t correlate with signs of respiratory distress.

As often happens in medicine, we treat based on intuition. To lessen the volume of the death rattle, we give medications that decrease saliva production. Sometimes, we are successful in silencing the rattle. More of the time, we placate our instinctive concern for a noise that probably sounds worse than it feels. Without hurting our patients, we treat the witnesses who will go on living.

Air Hunger

“You villain touch! What are you doing? My breath is tight in its throat” (Walt Whitman)

The patient was a wiry woman in her 80s who had smoked for seven decades. Cigarettes turned her lungs from a spongelike texture to billowing plastic bags that collapsed on themselves when she exhaled. It was like trying to scrunch all the air out of a shopping bag. Air got trapped.

Air hunger — the uncomfortable feeling of breathing difficulty — is one of the most common end-of-life symptoms that doctors work to ease.

The treatment? Opiates, usually morphine.

People sometimes ask why the treatment for painful breathing is a medication that can depress breathing. You’d guess that opiates would worsen air hunger.

The answer hinges on defining why air hunger is uncomfortable in the first place.

Some researchers think the discomfort of air hunger is from the mismatch between the breathing our brain wants and our lungs’ ability to inflate and deflate. Opiates provide relief because they tune our brain’s appetite for air to what our body can provide. They take the “hunger” out of “air hunger.”

Others believe that the amount of morphine needed to relieve air hunger may have little effect on our ability to breathe. Since air hunger and pain activate similar parts of the brain, opiates may simply work by muting the brain’s pain signals.

The patient traded her cigarettes for a breathing mask when she came to the hospital. She quit smoking for the umpteenth time and made plans to go home and live independently again. A few days later, her thin frame tired. She died in hospice.

Terminal Agitation

“Do not go gentle into that good night” (Dylan Thomas)

My grandfather screamed two days before he died. “Open that door and let me out! Right now! It’s a travesty! Open that door!”

It was the scream of a lost child. My grandfather’s eyebrows, which had been lost over the years from the outside inward so that only a centimeter of long gray hairs near the middle remained, tilted toward each other.

Until then, we were preparing for missing and absence. Not for an agitated delirium. Not for rage.

A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens.

Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.

There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual.

People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

Complete Article HERE!

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06/12/17

Dying at home: What I learned from my husband’s death

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Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.

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The night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.

I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.

According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.

The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.

But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.

Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.

When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.

How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.

In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.

I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.

Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.

There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.

After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.

I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.

Complete Article HERE!

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06/3/17

The dying process: What to expect when someone is close to death

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There’s evidence that even unconscious people can hear conversations and words spoken to them

By Bianca Nogrady

Hollywood has a lot to answer for when it comes to our ideas of what death looks like.

The majority of deaths on screen are violent, bloody, traumatic affairs, with few realistic portrayals of what a death from illness or so-called “natural causes” actually looks like.

Little wonder we have such a fear of death, and especially of being in the presence of it.

It’s still a terrifying notion, because most of us have no idea what we will see.

My own curiosity about death led me to write a book on the topic.

In bringing together medical research and personal stories from those who’ve undergone near-death experiences, I learned a lot.

Dying can be calm and peaceful; it can be awful, shocking, traumatic. Most of the time, it’s a little bit of both.

 

The expected

There are some fairly common things that happen when someone is approaching death.

They will often eat less and less, and — as things get closer — even stop drinking fluids.

They will also sleep more and more, and in many cases start to slip in and out of consciousness.

The final stages of dying also tend to involve some distinctive, and sometimes distressing, changes in breathing.

Breathing rhythms

One of the breathing rhythm changes is called Cheyne-Stokes breathing; a cycle of anywhere from 30 seconds to two minutes where the dying person’s breathing deepens and speeds up, then gets shallower and shallower until it stops.

Then there is a pause, which can sometimes stretch on so long that you think the person has stopped breathing altogether … before the cycle resumes.

Another is the awfully-named ‘death rattle’, caused by a build-up of saliva or secretions at the back of the throat.

 
This happens because the dying person is not clearing their throat or swallowing.

It can also sound like there is congestion in the dying person’s lungs.

Unfortunately, not much can be done about either of these signs, but perhaps some comfort can be taken from the fact that there is little evidence either of them is a sign of distress or discomfort.

Can you hear me?

As people near death, their limbs, hands and feet may get cold, and the colour of their skin may change from a healthy pink to a sallow, grey or mauve tinge. Sometimes their skin can be clammy and their hair plastered down with sweat.

While the dying person may be unresponsive, there is growing evidence that even in this unconscious state, people are aware of what is going on around them and can hear conversations and words spoken to them, although it may feel to them like they are in a dream state.

There is also evidence that people in this state are hypersensitive to touch, so soft, gentle physical contact is best.

The unexpected

What should you expect in the final stages of dying?

Sometimes death can deliver one last gift to loved ones who have been long denied meaningful interactions because of disease such as Alzheimer’s disease, dementia or brain tumours.

Terminal lucidity, or ‘lightening up’ was first described in the medical literature as early as 1833.

It refers to a period of awareness or consciousness, sometimes a complete return to form and personality in someone who may have been gone — to all intents and purposes — for many years.

They may recognise close family members for the first time in a very long period. They may also crack a joke, smile and interact as if they had never left.

It can be a silver lining, but a brief one.

It heralds that death is imminent, but can offer people a last precious glimpse of the person they love.

Final conversations

Many people and studies have also reported the dying apparently being visited by and having animated conversations with unseen people in the room.

Sometimes they appear to be talking to a loved one who has long since died — a parent, partner, or sibling. Sometimes it’s a religious figure.

But studies of this suggest that it is almost always a positive experience for the person who is dying; they begin to talk of journeying and being welcomed.

Restless death

Perhaps less welcome — and equally as uncommon, occurring in around 1 to 2 per cent of deaths — is pre-terminal agitation.

This could be as minor as someone plucking at the bed sheets, restlessness and fidgeting, but it can be as dramatic as someone who might be hours away from death running down a hospital corridor yelling and screaming.

These are generally expected signs that death is near.

Death, when it comes, can sometimes be as simple as one last long exhalation with nothing following. The pulse stops, the skin may suddenly take on a waxy hue, and in the majority of situations, this is the moment when we begin to grieve.

But sometimes the unexpected can happen.

The shocking

Death can be shocking enough. But imagine if you had said your final goodbye, the last breath has come and gone, then the person who you thought was dead suddenly draws a gasp and twitches.

Agonal breathing or agonal gasps are the last reflexes of the dying brain.

They are generally viewed as a sign of death, and can happen after the heart has stopped beating.

Another strange and disturbing reflex that has been observed after death is called the Lazarus reflex.

People who have been declared brain dead and have had artificial ventilation turned off have been seen to raise their arms and lower them slowly, sometimes crossed across the chest, sometimes by their side.

Brain death may also be accompanied by other reflexes that are no more a sign of life than the jerk of your knee when it is tapped with a hammer.

These include repetitive facial twitches, slow toe twitches and even the entire leg twitching.

Thankfully these more disturbing aspects of death tend to be rare.

Being with someone when they die may be a confronting and even terrifying prospect to many.

But of those people who have sat with a loved one — or even a stranger — when that person died, very few regret it.

For most people who are present at this event, it is a gift; a chance for stillness and communion and honesty and reflection that we are rarely granted at any other time in life.

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12/11/16

NICE guidance on care for dying children highlights importance of supporting families

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Care for dying children must take full account of the emotional and practical needs of their family as well as the young person, according to new guidance from the National Institute for Health and Care Excellence.

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The guideline, published today, also recommended an “advance care plan” detailing treatment decisions that should be routinely updated and that should include information about whether the child wants to donate their organs.

Children approaching the end of their life, as well as families and carers, may find it distressing to discuss the plan, noted the guidance. It added that they might, therefore, be reluctant to speak about it and may also have differences of opinion over what decisions are recorded in it.

Parent and carers must also be talked to about the support they can expect when the child dies as part of developing the plan, stated the document.

The guideline makes recommendations about how to discuss treatment withdrawal, and what can be done to help families when a child is approaching the end of life, such as preparing for important rituals, having photographs and any considerations around the use of social media.

It also covers how to discuss the preferred place of death for the child, how to manage pain in children, possible seizures, respiratory distress and nutrition.

A specialist paediatric palliative care team should be involved in managing distressing symptoms and must include, at a minimum, a paediatric palliative care consultant, a nurse with expertise in paediatric palliative care, a pharmacist with the same level of expertise, and also professionals who have experience in supporting families and children with practical and social elements of their care.

In addition, information on how to recognise whether a child is in the last few days of their life, about rapid transfer arrangements to their preferred place of death and how to provide care at home is discussed in the guidane.

However, it called for more research about how to identity when a child with a life-limiting condition is likely to die within hours or days.

“Healthcare professionals are often asked to estimate how close a child or young person may be to death. There is very little evidence on which to base any such estimate,” stated the guideline – called End of life care for infants, children and young people with life-limiting conditions: planning and management.

“To help predict when a child or young person is in the last hours or days of life, a clearer understanding is needed of which groups of signs and symptoms indicate this most clearly, it said.

“This would improve healthcare planning, but importantly would also allow families to realistically address their ‘hopes and wishes’ for their child’s care while preparing themselves for the child’s or young person’s last hours and days of life,” it added.

The guidance also stated that clear, easy to explain information tailored to the child’s age and level of understanding should be provided to them. This could include using art, digital media or music to explore their feelings and questions.

Dr David Vickers, consultant paediatrician at Cambridgeshire Community Services NHS Trust and chair of the NICE guideline committee said: “Providing care for a dying child can be an enormous challenge. It can place a substantial strain on the family.

“Mothers and fathers can be forced into a medical role in order to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure,” he said.

“By getting this right, and being there for whoever needs us, wherever they need us, we can ensure siblings continue to be a brother or sister, and parents can have time to simply be mum and dad,” he added.

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12/9/16

Terminally ill children should be asked about ‘life ambitions’, experts say

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Children and young people with life-limiting illnesses should be asked if they have a wishlist of achievements they want to accomplish, health officials have said.

 
Medics or care workers developing care plans for youngsters should ask about their “life ambitions and wishes”, according to new guidance on end-of-life care for children and young people from the National Institute for Health and Care Excellence (Nice).

It may be appropriate to ask youngsters what they want to do with social media accounts, such as Facebook or Twitter pages, before they die, experts said

Terminally ill children may wish to close down their social media accounts or keep them as memorial pages

Young people or their families should be asked about what they hope to achieve in life, including ambitions for social activities, relationships and educational attainment, the guideline suggests.

Dying teenagers might want to complete their GCSEs or make specific wishes on who should be given their personal belongings , according to Dr Emily Harrop, who helped to develop the guideline.

The child or a parent, depending on the child’s age, should also be asked about life ambitions, she said.

The paediatric palliative care consultant said: “When we start a conversation about end-of-life planning, rather than introduce that with a very closed question or a very negative question, we often start by asking for things like ‘What do you hope for? What do you aspire to do for yourself? What would you hope your child to achieve?’

“It is incredible what you get back actually. It’s rarely as simple as you’d think.

“It is always very, very individual.

“Some people I counsel are still pregnant but have a baby who has a condition which is life-limiting. One way to deal with the horror of that is to say to the couple ‘what do you and your family still hope for?’. It opens up a conversation where you can look to help them achieve what they hope for and look to be able to talk about, or even dispel, that which they fear.

“For the adolescents I care for, a lot of it is about their legacy, what they leave behind.

“It’s about what they wish to achieve with the time they have – do they want to do their GCSEs? If they have treasured possessions, are they desperate to know who they are going to leave those to?

“On one level, it opens a conversation you need to have and on the next level, it promotes you to think about them as an individual, not just as a person whose medical or social care you are delivering.”

Meanwhile, terminally ill teenagers may want to be asked if they would like social media accounts to be closed down or turned into memorial pages.

The new guidance states that when a child or young person is approaching the end of their life, health or care workers should talk to parents about “what would help them”, such as plans for social media content.

Dr Harrop, who works for Helen & Douglas House Hospices in Oxfordshire, said: “Some young people are old enough to have their own social media pages and when someone passes away, there is a mechanism to make ‘in mem’ (memorial) pages where people can add tributes but the content is limited.

“It was brought up as something that might come into a conversation with parents, or conversations parents have with a young person, to say ‘do you have a specific wish of what we do with your Facebook page or Whatsapp? Do you want us to leave something about you on the net because your friends might find that very meaningful or would you like us to take it all down because it is private to you?'”

The new guidance, which aims to improve the end-of-life care for babies, children and young people, suggests that h ospital, hospice and home care staff must look after the whole family, practically and emotionally, when a child is dying.

It is estimated that more than 40,000 children and young people in England are living with a life-limiting condition – where there is no hope of cure.

Professor Mark Baker, director for the centre of guidelines at Nice, said: “To lose a child is a tragic, life-changing event. But the care given to a child and their family during this difficult time can offer great comfort, if done properly.

“This guidance clearly sets out best practice for all those involved in palliative care, whether that be at home, in a hospice or in a hospital. I hope it will be implemented fully so that those families going through the worst time of their lives are properly supported.”

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