Do You Want to Be Awake For Your Death?

By Chris Bodenner

 

 

Jennie Dear has an evocative piece for us examining the scant evidence that scientists have so far about the mysterious threshold between life and death—what the body goes through and how a person subjectively feels it, both in terms of pain and hallucinations:

“A lot of cardiac-arrest survivors describe that during their unconscious period, they have this amazing experience in their brain,” [neuroscientist Jimo Borjigin] says. “They see lights and then they describe the experience as ‘realer than real.’” She realized the sudden release of neurochemicals might help to explain this feeling. … Most of the patients interviewed [for a study at a hospice center], 88 percent, had at least one dream or vision.

One reader says of Dear’s ostensibly morbid piece (“What It Feels Like to Die”): “The article is comforting in a way I did not anticipate.” Another reader agrees:

I kissed my dad goodbye on the forehead right before he died. He smiled briefly. So, this article was some comfort in maybe explaining that smile of his.

This next reader also lost her father:

I remember when my dad was dying, and my mom forbade any of us from telling him that he was dying. I thought that that was terribly selfish on her part, and I told my husband that if I were dying I would want to know.

When my mom passed away, she was “treated” to the experience of my sisters bitterly arguing as to who was the favorite. (I knew I wasn’t and just held her hand.) My husband got my sisters to stop. Finally, the doctors came in and actually said she had permission to die … Mom was like that; you had to have permission in her mind for everything.

My dear husband is gone now, and I just hope that when I go, I’ll be thinking of him.

That reader’s line—“if I were dying I would want to know”—prompted a question in my mind I’ve long answered in the affirmative: “Do you want to be awake for your death and know it’s coming?” The conventional wisdom says most people prefer to die in their sleep, but, as long as there’s no intense pain involved, sleeping seems like a disappointing way to experience one of the most profound parts of life—it’s ending. And whenever I think of that question, I’m reminded of these lyrics from Björk’s “Hyperballad”:

I imagine what my body would sound like
Slamming against those rocks

And when it lands
Will my eyes be closed or open?

Would you rather be sleep or awake? How exactly would you prefer to die? What’s the ideal situation? Email hello@theatlantic.com if you’d like to share.

Back to a few more stories from readers regarding the death of a loved one. This memory is particularly poignant:

Twelve months ago, my 33-year-old daughter Phoebe began to die from metastatic melanoma. Over the next 10 weeks at a hospital in Melbourne, she went through each of the experiences outlined in Jennie Dear’s article. During this time, Phoebe asked her nurse how would she know when she was about to actually die. Donna told her that something would happen and she would know—both vague and oddly specific, but Phoebe was satisfied.

A week before her death, having gotten her pain under control, Phoebe was at home to say goodbye to her animals, clean out her cupboards, and give away her possessions. She was standing in the yard throwing a ball for the dog when she suddenly sat down, as I watched from the kitchen. I’m sure she realized as she collapsed to the bench that her time had come. I doubt that there could be a lonelier moment in a person’s life.

She didn’t speak again. Her hearing and hand gestures reduced over a few days to squeezing, then nothing but breathing quietly. Her brother-in-law, who was with her at the end, said she simply stopped breathing.

Each person’s death is different, so I found Dear’s article comforting in a way I did not anticipate.

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One more reader for now:

My father was put into hospice, and all his meds were stopped. He “recovered” and lived another six months. After they “kicked him out” of hospice, he and I spent a lot of quality time together. When the end came, he was ready even though he could no longer speak. The hospice nurse came and looked at all the meds and found that while we still had the liquid morphine, we no longer had the Ativan, so we ordered a stat delivery from the pharmacist.

Giving morphine to a dying person can feel a lot like murder, and listening to the death rattle is more distressing than listening to a crying infant, but I think that the death experience is far worse for the person attending the death than for the one who is dying.

The Ativan was given to my father late in this process, but that was the drug which provided him with joy and relief. Shortly after he received the drug, I believe I witnessed him greeting his mother who had died 40 years ago.

My father then developed what is called a Cheyne-Stokes respiration; he would breath rapidly for a few minutes and then stop breathing. He resumed breathing like clockwork at 65 seconds from his previous breath. This lasted for hours. His last breath sounded much like a laugh, and I thought it was his way of saying good-bye.

I thought the event would be gruesome, but it was a special bonding experience which has helped me to reduce my fear of dying.

Complete Article HERE!

Belgium minor first to be granted euthanasia

Belgium is the only country that permits euthanasia without age restrictions
Belgium is the only country that permits euthanasia without age restrictions

A terminally-ill minor has become the first to be helped to die in Belgium since age restrictions on euthanasia requests were removed two years ago, officials say.

The head of the federal euthanasia commission confirmed the case but gave no further details.

Belgium is the only country that allows minors of any age to choose euthanasia.

They must have rational decision-making capacity and be in the final stages of a terminal illness.

The parents of the under-18 year olds must also give their consent.

“Fortunately there are very few children who are considered [for euthanasia] but that does not mean we should refuse them the right to a dignified death,” Wim Distelmans of the federal euthanasia committee told the Het Nieuwsblad newspaper.

He told Reuters news agency the case had been reported to his committee by a local doctor last week.

The case occurred in Flemish-speaking Belgium, reports RTBF (in French), the public broadcaster for Belgium’s French-speaking community.

The age of the minor has not been reported.

The Netherlands also allows euthanasia for minors, but they must be aged over 12 years old.

Belgium lifted the age restrictions in 2014. The law passed by parliament said the child would have to be terminally ill, face “unbearable physical suffering” and make repeated requests to die before euthanasia is considered.

Many people, including church leaders and some paediatricians, questioned whether children would be able to make such a difficult choice.

Belgian Paralympian Marieke Vervoort, who suffers from an incurable degenerative muscle disease, says she will choose euthanasia, but not yet.
Belgian Paralympian Marieke Vervoort, who suffers from an incurable degenerative muscle disease, says she will choose euthanasia, but not yet.

Where is assisted dying permitted?

  • The Netherlands, Belgium and Luxembourg permit euthanasia and assisted suicide
  • Switzerland permits assisted suicide if the person assisting acts unselfishly
  • Colombia permits euthanasia
  • California last year joined the US states of Oregon, Washington, Vermont and Montana in permitting assisted dying
  • Canada passed laws allowing doctor-assisted dying in June of this year

How old must the patient be?

Only the Netherlands and Belgium permit euthanasia for patients under the age of 18.

In the Netherlands, a competent patient between the ages of 16 and 18 may request euthanasia or assisted suicide. The parent or guardian does not have a veto, but must be consulted. Competent patients aged between 12 and 16 may also qualify, but only if their parent or guardian consents.

In Belgium, a competent patient under the age of 18 may request euthanasia with parental consent. Additional scrutiny of the child’s competence is required, and suffering based on a psychiatric disorder is excluded.

How many people take this option?

The rate of euthanasia in the Netherlands has remained fairly stable at 2.8% of all deaths (in 2010), according to Penney Lewis, Professor of Law at King’s College London.

The most recent survey of doctors in the UK was in 2007-08. The rate of euthanasia was reported to be 0.21% of all deaths, and a similar rate has been reported in France (in 2009), even though euthanasia remains illegal in both countries.

In contrast, research carried out in Flanders, Belgium found the rate prior to legalisation was unclear, with separate surveys reporting rates of 0.3% of all deaths in the region (in 2001-02) and 1.1% (in 1998). The rate has risen steadily since legalisation in 2002 to 4.6% of all deaths in the most recent survey in 2013.

What do the different terms mean?

Euthanasia is an intervention undertaken with the intention of ending a life to relieve suffering, for example a lethal injection administered by a doctor

Assisted suicide is any act that intentionally helps another person kill themselves, for example by providing them with the means to do so, most commonly by prescribing a lethal medication

Assisted dying is usually used in the US and the UK to mean assisted suicide for the terminally ill only, as for example in the Assisted Dying Bills recently debated in the UK

Complete Article HERE!

Early Palliative Care Improves Patients’ Quality of Life

Also increases chances of having end-of-life discussions, study shows

By Robert Preidt

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.

Starting palliative care shortly after a person is diagnosed with incurable cancer helps patients cope and improves their quality of life, a new study shows.

It also leads to more discussions about patients’ end-of-life care preferences, the researchers added.

Palliative care, also called comfort care, is given to improve the quality of life for patients who have a life-threatening disease or terminal illness, such as cancer. The goal is not to cure the patient, but to manage the symptoms of the disease, according to the U.S. National Cancer Institute.

The new study included 350 people recently diagnosed with incurable lung or gastrointestinal cancer. They were randomly assigned to one of two care groups. One group received early palliative care integrated with cancer care. The other received cancer care alone.

The patients were evaluated at 12 and 24 weeks after diagnosis. At 24 weeks, the early palliative care patients were much more likely to report using active and engaged coping styles than the standard cancer care patients.

Early palliative care patients also had much higher quality of life and lower levels of depression at 24 weeks, but not at 12 weeks, the study found.

Thirty percent of early palliative care patients said they had discussed end-of-life care preferences. Just 14 percent of standard care patients had similar talks.

The study was presented recently at an American Society of Clinical Oncology (ASCO) meeting in San Francisco. Findings presented at meetings are generally viewed as preliminary until they’ve been published in a peer-reviewed journal.

“What we found was the patients who received early palliative care were more likely to use adaptive coping strategies — meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis,” lead author Joseph Andrew Greer said in an ASCO news release.

“Palliative care is a key ingredient to improving a quality of life, which is important to both patients and their families,” said Greer. He’s clinical director of psychology and a research scientist at Massachusetts General Hospital.

ASCO spokesman Dr. Andrew Epstein said these findings help show the benefits of integrating palliative care into cancer care.

“A diagnosis of cancer is never easy for patients, so it is promising that we now have a strategy of early palliative care that can help patients cope while improving their quality of life,” Epstein said.

More information

The Center to Advance Palliative Care has more on palliative care.

Complete Article HERE!

Musings on Mortality: Difference between suicide, medical aid in dying

By Deborah Alecson

There is a profound difference between suicide and medical aid in dying, otherwise known as death with dignity. It is not a matter of semantics.

Death with Dignity Campaign

In a death-phobic culture such as ours, one in which we prevent ourselves from projecting into our dying time, we cannot grasp the distinction. True, both result in the taking of one’s own life, but one is an act of desperation and self-destruction, while the other is an act of self-love. How can choosing death over life be motivated by self-love, you are wondering. We will explore this later in the column.

People commit suicide often in the prime of their lives because living for them is unbearable. Unlike the terminally ill who choose medical aid in dying, people who seek to commit suicide are not in their dying time but in their living time. More often than not, there are underlying and unresolvable emotional and psychological torments. There is depression or a psychiatric illness that has not been or cannot be treated. For the elderly, suicide can be motivated by the suffering that comes from living a compromised life without the support of family, friends, or community. Loneliness and feelings of abandonment are factors in suicide, especially for the elderly.

Suicide is considered a failure of the person and of our society. Help was needed and not found. In our culture, suicide is to be prevented at all costs including the involuntary psychiatric hospitalization (or incarceration depending on how you view that which is “involuntary”) of the person who discloses his or her suicidal thoughts. There are consequences for a patient in therapy to even talk about suicide: The therapist must report him or her to the authorities. The horrible irony is that the one place a suicidal person can get help to understand his or her own feelings, with a therapist, is the one place where he or she can’t talk about these feelings.

In a death-phobic culture, thoughts of suicide are considered aberrant. But let’s be honest, who hasn’t thought about suicide at least once in their life?

The will to live is an instinct of such force that human beings kill other human beings to stay alive. Human beings accept life-prolonging treatments during what would be their natural dying time that in the end, diminish the quality of time that they had bought with more treatment. People will do unbelievable things to ensure their own survival.

So, choosing to die under the weight of the instinctual and societal will to live is either accomplished out of sheer terror of life itself or incredible courage. Courage to venture into the unknown.

Since most of us have not been around dying people and as I wrote earlier, rarely imagine ourselves in that situation, we have no idea what dying is like. We don’t understand what it asks of us and what it takes out of us. While hospice care can be a possibility for how we live our dying time, it is not for everyone.

Medical aid in dying is now possible in five states. This means that people who are dying of a terminal illness can request a lethal dose of medication to end their own lives. Those few terminally ill patients who request and qualify for medical aid in dying do so to have a dignified death on their own terms. That’s all. This choice is a logical, sound, and deeply compassionate act of relief, not a desperate escape of a circumstantial situation as suicide often can be.

How can choosing death over life be motivated by self-love? When your dying time comes, you may want to spare yourself and your loved ones a prolonged and brutal decline. This to me is self-love. It is not suicide.

Complete Article HERE!

The sobering thing doctors do when they die

By Carolyn Y. Johnson

The sobering thing doctors do when they die

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly more time in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” Craig C. Earle wrote in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it’s much harder to write a prescription.

Complete Article HERE!

“Dying with dignity” versus “doctor-assisted suicide:” ballot initiative sets off language battle

Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people

By

dignity_human

In November Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people who have less than six months to live and want to die on their own terms. Whether the initiative is called “doctor-assisted suicide,” “dying with dignity” or “medical aid in dying,” though, will depend on who is paying for the campaign ad.

The language behind the fight is becoming almost as impassioned as the years-long battle over “pro-choice” and “pro-life” that morphed into “abortion rights supporters” and “abortion rights opponents.”

People in favor of the initiative use the terms “dying with dignity” and “right to die” but named their Colorado ballot measure the more neutral “end-of-life options,” although the secretary of state’s office calls it the Medical Aid in Dying initiative. The campaign also uses “medical aid in dying,” which is what proponents predict doctors will call the procedure if it becomes legal in Colorado, as it is in five other states.

Opponents of the proposed law — including many for religious reasons and others who fear it would target people with disabilities — call it “physician-assisted suicide.”

The loaded words on both sides are a case study in the power of language, and how rhetoric — or the art of public persuasion — can shape political debate.

“To communicate and attach ourselves to language is a very natural thing for a human to do, to the point that people will come to blows over ‘physician-assisted suicide’ or ‘dying with dignity,’” said Dr. Christina Foust, chair of the communication studies department at the University of Denver.

“When I think of the word suicide, I think of the words that sound just like it — homicide, infanticide. It has such a negative connotation,” she said. On the other side, “dying with dignity” connotes the ability to choose one’s own death, which is an affront to somebody who “might rest that power in God or a higher power.”

Coloradans probably will get tired of both terms by the election, after they are bombarded with TV and radio ads. But Foust and Dr. Jeff Motter, who teaches political rhetoric at the University of Colorado at Boulder, find it fascinating.

A similar linguistics battle exists over greenhouse gases: Is it “global warming” or “climate change”? There is the intense division over the #blacklivesmatter versus #alllivesmatter, a matter of a single word. And for more proof that language is powerful, consider that the words “date rape” and “spousal rape” weren’t part of the lexicon until the 1970s or 1980s, and their mere existence effected change, Foust said.

Motter, who recently moved to Colorado from North Carolina, has picked up on the way the cannabis industry is “very careful to always use the term cannabis and not pot or marijuana.”

“They are trying to reinvent the story, and the story of cannabis is the story of medical, clothing, the fiber of it, and it’s not about the recreation of it,” he said.

In Colorado’s latest social debate, “death with dignity” and “doctor-assisted suicide” tell two “very different stories,” Motter said. “Is it a story of human compassion or a story of murder?”

“Medical aid in dying” is a more neutral term because it sounds clinical, like most of the vocabulary used in medicine, Faust said. Motter agreed but questioned whether the word “aid” is innocuous because it implies “it’s not just optional; aid is essential.”

Opponents of the measure say the campaign is attempting to “sanitize” the act, in which a doctor writes a prescription for secobarbital that is later self-administered.

“If I was on their side, I’d want to sanitize it too,” said John Stonestreet, who is with the Chuck Colson Center for Christian Worldview. “It’s a hard thing to swallow. But some things are hard to swallow because they should be hard to swallow.”

“Dying with dignity” is a “euphemism for killing elderly and terminally ill patients by giving them a cocktail of toxic drugs,” Stonestreet wrote on his blog. He told The Denver Post “medical aid in dying” doesn’t convey the reality of what’s at stake. The phrase makes it sound as if doctors are only making their patient comfortable as they die, not providing the prescription that ends their life, he said. “A doctor should never do anything to cause death or harm,” Stonestreet said.

But proponents of the measure said “suicide” is a pejorative, shame-inducing word that implies someone has a mental illness and is choosing to die. “People who use medical aid in dying are victims of a terminal illness,” said Barbara Coombs Lee, president of the national Compassion & Choices organization and a board member for the Colorado end-of-life options campaign.

She compared the “choice” that terminally ill patients have to the one made by people who jumped out of buildings on Sept. 11, 2001, to avoid burning to death.

The political movement initially used the term “dying with dignity” in the late 1980s and 1990s, and was successful in passing a law by the same name in Oregon. “We knew the term was biased in our favor — it was our term,” Coombs Lee said.

The term “medical aid in dying” arose because the medical community needed language to distinguish the new practice from the crime of aiding and abetting a suicide — coercing someone to jump from a building or persuading them to overdose. “Those are heinous crimes,” she said. “They should be clearly disassociated from a legitimate and authorized medical practice. Doctors stab people with knives, and we call it surgery. They inject people with poisonous toxins and we call it chemotherapy.”

The ballot measure says two physicians must agree that a person — who must be at least 18 years old — is terminally ill and has six months or less to live and is mentally competent. It also requires that the person self-administer the secobarbital, which historically has been used in low doses as a sleeping aid.

The divisive language has left news organizations considering what is the most objective term to describe the procedure. KUSA-Channel 9 recently informed viewers the station will call it “assisted suicide,” going by the Oxford definition of “the action of killing oneself intentionally.” Others, including The Denver Post, use “medical aid in dying,” noting that the word suicide carries meaning beyond the dictionary definition.

“Language does matter,” Motter said. “Both sides want their frame, and that’s because both sides are creating their story.”

Complete Article HERE!

First step to improving palliative care: change its name

There is a cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care.

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.
The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.

By

Somewhere, packed inside a box of childhood memories, is a photo of 3-year-old me. Dressed in child-sized scrubs, beaming, as I grasp my uncle’s hard earned medical degree (my name delicately taped over his). With the right amount of hard work and good fortune, I am two years into medical school and on the brink of my clinical rotations at the University of Toronto Mississauga Academy of Medicine.

I am truly amazed at all the incredible advances that have been made in medicine. People with cancer live longer, women are less likely to die in labour, and robotic surgery is no longer science fiction. Friends and family often ask what the most surprising part of medical training is. They often ask what it’s like to be in an ICU or an OR for the first time, and I always thought that would be the biggest deal for me. But it’s not. What I have been most shocked about is our failure to provide people with a dignified ending of their life.

The public has been galvanized around a conversation about the legalization of medically assisted dying, an incredibly important issue. It’s our system’s formal acceptance of a person’s right to die. It’s a step forward – one that I would argue is necessary, but not sufficient, to make dying with dignity the rule, as opposed to the exception. Alone, it applies to a small group within the population of terminally ill patients, and of those, not all will elect to utilize the service. We have renovated the roof of a building with a shaky foundation. That foundation is palliative care – a type of care all patients with terminal and chronic illness should be receiving. The key to helping our patients die with dignity is improving the palliative care we provide.

The World Health Organization defines palliative care as an approach that improves the quality of life of patients, and their families, when faced with the challenges of life-threatening illness. It strives for early identification, assessment, and treatment of pain and other problems – whether physical, psychological, social, or spiritual. Interestingly and notably, it makes no mention of restriction to the final days of life, yet that is what it has come to be associated with. This critical field of medicine has also become synonymous with a lack of timely access to services, delayed referrals by health-care professionals, and limited resources at local levels.

We are doing a disservice to our patients and their families – and I would argue that much of that disservice can be linked to the cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care itself. Perhaps it is my naivety as a student, but I can’t help but feel that it’s time for a change. Palliative care is broken. The goal is to support people as they approach one of the most challenging times they will ever face – emotionally, intellectually, and financially. The goal is to support – so why not call it supportive care?

Some major centres have even played with this idea. The MD Anderson Cancer Center in Texas, a global leader in oncology and palliative care, surveyed physicians to ask if they thought a name change to supportive care could impact referrals. Overall, physicians preferred the name supportive care, and expressed they were more likely to refer patients to a service with that name.

These were not the only interesting results – physicians also found that the term “palliative” more frequently causes distress and hopelessness in patients and families. They then trialed the name change at their own palliative – whoops, supportive – care centre, and actually saw an increase in referrals over a nine-month period. The research and sample size are small, but what does exist suggests that a name change could have a real impact on perceptions, and more importantly, patient access to palliative care.

Our country is on a journey of realization around what it is to live a good life and to have control over one’s destiny. That conversation is happening in many different worlds, and medically assisted dying is one of them. What needs to happen next, as difficult and overwhelming as it may seem, is trying to tackle that shaky foundation. Until we do that, we are failing our patients at their most vulnerable – we are failing to give them a good death. I believe that timely and quality palliative care is a right, not a privilege; it ought to be the rule, and not the exception. So let’s support our patients.

Complete Article HERE!