What happens if you want access to voluntary assisted dying but your nursing home won’t let you?

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Voluntary assisted dying is now lawful in all Australian states. There is also widespread community support for it.

Yet some residential institutions, such as hospices and aged-care facilities, are obstructing access despite the law not specifying whether they have the legal right to do so.

As voluntary assisted dying is implemented across the country, institutions blocking access to it will likely become more of an issue.

So addressing this will help everyone – institutions, staff, families and, most importantly, people dying in institutions who wish to have control of their end.

The many ways to block access

While voluntary assisted dying legislation recognises the right of doctors to conscientiously object to it, the law is generally silent on the rights of institutions to do so.

While the institution where someone lives has no legislated role in voluntary assisted dying, it can refuse access in various ways, including:

  • restricting staff responding to a discussion a resident initiates about voluntary assisted dying
  • refusing access to health professionals to facilitate it, and
  • requiring people who wish to pursue the option to leave the facility.
  • Here’s what happened to ‘Mary’

    Here is a hypothetical example based on cases one of us (Charles Corke) has learned of via his role at Victoria’s Voluntary Assisted Dying Review Board.

    We have chosen to combine several different cases into one, to respect the confidentiality of the individuals and organisations involved.

    “Mary” was a 72-year-old widow who moved into a private aged-care facility when she could no longer manage independently in her own home due to advanced lung disease.

    While her intellect remained intact, she accepted she had reached a stage at which she needed significant assistance. She appreciated the help she received. She liked the staff and they liked her.

    After a year in the facility, during which time her lung disease got much worse, Mary decided she wanted access to voluntary assisted dying. Her children were supportive, particularly as this desire was consistent with Mary’s longstanding views.

    Mary was open about her wish with the nursing home staff she felt were her friends.

    Sick elderly patient in hospital bed, nurse wearing gloves holding fingertips
    Mary’s condition worsened so she requested voluntary assisted dying.

    The executive management of the nursing home heard of her intentions. This resulted in a visit at which Mary was told, in no uncertain terms, her wish to access voluntary assisted dying would not be allowed. She would be required to move out, unless she agreed to change her mind.

    Mary was upset. Her family was furious. She really didn’t want to move, but really wanted to continue with voluntary assisted dying “in her current home” (as she saw it).

    Mary decided to continue with her wish. Her family took her to see two doctors registered to provide assessments for voluntary assisted dying, who didn’t work at the facility. Mary was deemed eligible and the permit was granted. Two pharmacists visited Mary at the nursing home, gave her the medication and instructed her how to mix it and take it.

    These actions required no active participation from the nursing home or its staff.

    Family and friends arranged to visit at the time Mary indicated she planned to take the medication. She died peacefully, on her own terms, as she wished. The family informed the nursing home staff their mother had died. Neither family nor staff mentioned voluntary assisted dying.

  • Staff are in a difficult position too

    There is widespread community support for voluntary assisted dying. In a 2021 survey by National Seniors Australia, more than 85% of seniors agreed it should be available.

    So it’s likely there will be staff who are supportive in most institutions. For instance, in a survey of attitudes to voluntary assisted dying in a large public tertiary hospital, 88% of staff supported it becoming lawful.

    So a blanket policy to refuse dying patients access to voluntary assisted dying is likely to place staff in a difficult position. An institution risks creating a toxic workplace culture, in which clandestine communication and fear become entrenched.

  • What could we do better?

    1. Institutions need to be up-front about their policies

    Institutions need to be completely open about their policies on voluntary assisted dying and whether they would obstruct any such request in the future. This is so patients and families can factor this into deciding on an institution in the first place.

    2. Institutions need to consult their stakeholders

    Institutions should consult their stakeholders about their policy with a view to creating a “safe” environment for residents and staff – for those who want access to voluntary assisted dying or who wish to support it, and for those who don’t want it and find it confronting.

    3. Laws need to change

    Future legislation should define the extent of an institution’s right to obstruct a resident’s right to access voluntary assisted dying.

    There should be safeguards in all states (as is already legislated in Queensland), including the ability for individuals to be referred in sufficient time to another institution, should they wish to access voluntary assisted dying.

    Other states should consider whether it is reasonable to permit a resident, who does not wish to move, to be able to stay and proceed with their wish, without direct involvement of the institution.

Complete Article HERE!

Small Differences in the Face of Death

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Every medical student has felt apprehensive about facing death at some point, right? Maybe you have experienced someone dying before, or maybe it is something you have never seen and only rarely contemplated. Regardless, there is a subtle tension lurking during your first two years of pre-clinical studies, during which disease and death are intellectualized and abstract. Then clerkships start. Working throughout the hospital, you feel that death is lurking just around the corner. It is palpable. It is hearing a code blue being called on the overhead speaker. It is entering the room of a comatose patient who is technically “alive” but not truly “living.” Whatever one’s experience has been with death, I am confident I am not alone in having felt apprehension and anxiety towards the idea of watching a patient die for the first time.

I managed to get through half of my third year without even being near a patient who died. As I began my rotation in trauma surgery, my anxiety towards the experience had evolved into dread. I was certain that whenever I did finally see someone die, it would surely result in panic. In a weird way, I wanted to just get it over with. I could hear one of my professors saying, “we all go through it, it is best to just rip the band aid off.” As it happened, on just my second night of trauma surgery, a level 1 rolled into the bay. Five gunshot wounds – one to the arm, one to the leg, three to the abdomen. He was in and out of consciousness by the time he got to us. When he was able to speak, he only sputtered out short phrases about being scared. In almost no time, he was sedated, intubated and on his way to the OR. We scrubbed in as fast as we could.

The operation lasted five hours, but it felt much longer. For the most part, it never really looked good. His bowels were shredded from bullet fragments and every time we closed one bleeding artery, we found another. It seemed no amount of epinephrine or fluids could keep his blood pressure up. About two hours into the operation, he coded. The attending surgeon barked an order at me and I started doing chest compressions. They defibrillated him. He still had no pulse. Back to compressions. I felt the crunch of his ribs fracturing beneath my palms. My face shield fogged up from my own labored breathing and I felt sweat building up in my skin-tight surgical gloves.

“This is it, this is the first patient I will see die.” The thought crept into my head for a split second, but there was no time for those thoughts or feelings — I had to do more compressions and another shock. Suddenly, he had a pulse! A brief wave of relief came over me. We operated for another hour, but despite our efforts, his pulse continued to become slower and weaker with each passing minute. Eventually, we found a hole in his aorta and it became clear to everyone in the room that there was likely no way to prevent this man’s death. Yet, we recognized the importance of striving towards the one-in-a-million chance to save a life; so, we continued to work.

But after another hour, the surgeon received a call. A child had fallen from a tree and required the team’s attention in the operating room across the hall. There was no longer the time or resources to work towards that miniscule chance of survival for the person on the table in front of us. The surgeon called off compressions. We stopped plugging holes, most of which at this point had little blood left to spurt out. Most of the team ripped off their surgical gowns, and hurried off to start the routine over again next door. Suddenly, the only people in the room were me, an intern, a nurse and this man on his literal death bed.

His heart was barely beating, a mere technicality keeping him alive for a few more moments. My job was to keep my hand on his aorta and notify the surgeon when there was no longer a pulse so he could call the time of death. All of the monitors had been turned off and the room was silent. I held the now deflated tube of tissue between my fingers, closely focusing to detect the weak, irregular pulsations coming from a desperately failing heart.

Now, there was much more time and space for that dreaded thought to creep in. Surely, this is when I would recognize the reality of the situation and panic from the experience of witnessing death so intimately. Yet surprisingly, fear and dread were hardly present. Rather, I was simply sad. I was sad for this man I knew nothing about whose life was violently cut short. I was sad for his friends and family. At the same time, however, I was proud. I was proud to be feeling for this dying stranger rather than wrapped up in my own anxieties about death. More importantly, I was proud to have been part of what felt like the best effort possible to save this man’s life. My thoughts were interrupted when I recognized the stillness of the aorta. It was over. The surgeon came back to call the time of death and we sutured his wounds as neatly as we could. Even throughout this routine, I felt the gravity of the task at hand. My sense of pride persisted, knowing that we were still working hard to make the coming experience for his loved ones at least slightly less traumatic. 

What made facing death more tolerable that day was the efforts made along the way. Feeling powerless is perhaps the most overwhelming aspect of death. But it is now abundantly clear that small efforts in the world of medicine provide a certain sense of empowerment and peace even in the face of horrific and inescapable outcomes. What I will remember from my first death is that we worked to provide a fighting chance and maybe even some eventual comfort to his loved ones. Efforts like these provide clinicians hope for a better outcome next time, or at least help a family find some peace knowing that everything possible was done. They preserve patients’ dignity in both life and death. Now, I am sure that feelings like fear and anxiety will oscillate throughout my career — after all, medicine is imperfect, things go wrong and people suffer despite our best efforts. I recognize now, however, that the best way to combat our sense of powerlessness when facing outcomes which are out of our control is to appreciate the small differences we are able to make. Ultimately, these seemingly-minimal differences give medicine its meaning, make the hard times more tolerable and more broadly, make this a field I am proud and confident to be joining.

Complete Article HERE!

What Is Complicated Grief

— And When Is It Prolonged Grief Disorder?

Complicated grief is grief that continues for an extended period of time and interferes with day-to-day functioning.

By Markham Heid

Four years after her husband’s death, a 68-year-old woman visits her doctor because she’s having trouble sleeping.

While talking with her doctor, the woman reveals that she’s been sleeping on her couch because sleeping in the bed she and her husband shared makes her miss him too much. She still blames herself and her husband’s medical team for his death, and she thinks about him “constantly” — often wishing to die so that she can be with him again.

The woman’s experiences are detailed in a 2015 article in The New England Journal of Medicine, which explains what complicated grief is and how it should be managed.

Complicated grief is defined as grief that is “unusually severe and prolonged” and impairs a person’s ability to live a normal life, according to the article.

Psychologists estimate that approximately 10 to 20 percent of people who are grieving will develop complicated grief, according to another review on the topic.

“Complicated grief is now called ‘prolonged grief disorder,’” says M. Katherine Shear, MD, the author of the study in The New England Journal of Medicine and the Marion E. Kenworthy professor of psychiatry at Columbia University in New York, who studies grief and bereavement. “The difference between normal or healthy grief and prolonged grief is related to whether certain defensive responses that are a normal part of early grief become persistent and overly influential in mental functioning.”

Grief, briefly defined, is the emotional reaction a person has following a loss. During the weeks and months following a loss — such as the death of a spouse or parent — almost any reaction is considered “normal.”

But at a certain point, if the grief continues to interfere with a person’s life, it may be considered a diagnosable disorder.

What Is Complicated Grief? Prolonged Grief Disorder by Definition

Based in large part on Dr. Shear’s work with people who have experienced complicated grief (Shear is also the founding director of the Center for Complicated Grief at Columbia School of Social Work), in March 2022 prolonged grief disorder was added to the next update of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision, or DSM-5-TR — the formal guide that psychiatrists use to identify and diagnose mental health problems.

According to the DSM-5-TR, prolonged grief disorder is defined by someone experiencing the following six criteria:

1. A death — at least 12 months ago for adults, and at least six months ago for kids — of a person who was close to the bereaved.

2. Since the death, there has been a grief response characterized by one or both of the following nearly every day for at least the last month:

  • Intense yearning or longing for the deceased person
  • Preoccupation with thoughts or memories of the deceased person (in children and adolescents, preoccupation may focus on the circumstances of the death)

3. As a result of the death, at least three of the following eight symptoms have been experienced nearly every day for at least the last month:

  • Identity disruption (such as feeling as though part of oneself has died)
  • Marked sense of disbelief about the death
  • Avoidance of reminders that the person is dead
  • Intense emotional pain (such as anger, bitterness, or sorrow) related to the death
  • Difficulty with reintegration into life after the death (including problems engaging with friends, pursuing interests, or planning for the future)
  • Emotional numbness (for example, an absence or marked reduction in the intensity of emotions, or feeling stunned) as a result of the death
  • Feeling that life is meaningless as a result of the death
  • Intense loneliness (such as feeling alone or detached from others) as a result of the death

4. The loss causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

5. The duration and severity of the bereavement reaction clearly exceeds expected social, cultural, or religious norms for the individual’s culture and context.

6. The symptoms of grief are not better explained by major depressive disorder, post-traumatic stress disorder, or another mental disorder, or attributable to the physiological effects of a substance (such as medication or alcohol) or another medical condition.

Shear adds that complicated grief or prolonged grief disorder is by and large defined by the extent to which grief affects someone’s life. “It’s when grief is continuing to dominate someone’s life, getting other people frustrated, and it feels like they can’t come to terms with the new reality or restore their ability to thrive,” she says.

Complete Article HERE!

Why it is important to take time to grieve a miscarriage

The Government will debate new legislation granting bereaved parents the right to three days’ leave after suffering a loss

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One in four pregnancies ends in miscarriage, a physical and emotional trauma from which it can take weeks to begin to recover. Currently, those who have experienced such a loss are expected to carry on working as normal, with no UK laws in place allowing them time to grieve.

This might all change in December, when Parliament meets to vote on new legislation that would entitle those who have suffered a miscarriage three days of paid bereavement leave – something that is only presently offered if a baby is lost after 24 weeks, when it is considered a stillbirth.

“A miscarriage is a complicated grief because we are grieving the future we imagined with a living, healthy baby,” explains the psychotherapist Julia Samuel, who specialises in grief and is the founder patron of Child Bereavement UK. “It is important to acknowledge that this is a significant loss.”

We are grieving the future we imagined with a living, healthy baby

Indeed, the depth of love parents feel for their infant cannot be measured by how long the baby lived, but in how emotionally invested they are. And, as Samuel says, because we don’t have memories or images of the baby to focus on, “it can feel surreal”. To help create an external focus for their grief, she often suggests parents “make or buy or plant something that represents the baby”.

In the past, people have tended not to talk about miscarriages, but this has started to change – and with more and more women speaking out, the subject has gained greater visibility. Meghan, the Duchess of Sussex, described “an almost unbearable grief” after miscarrying in July 2020; Chrissy Teigen revealed the “utter and complete sadness” of losing her third child at 20 weeks, whom she had named Jack; and after losing two babies during pregnancy, Lily Allen reflected that “it’s not something that you get over”.chrissy teigen and john legend

Some employers, including Channel 4 and Monzo, have already taken the step to offer both partners 10 days’ leave after a miscarriage, but a standard minimum of three days would be a step in the right direction. “Honestly, three days is a tiny amount in regard to grief,” Samuel says, “but what I think it does is mark the legitimacy and significance of the loss.”

Without those precious days to start coming to terms with what has happened, there can be severe repercussions. “If we don’t give ourselves the time, it may cost us psychologically,” explains Samuel, “where we shut down on an aspect of our emotional selves that may come out in other ways – in our bodies; in less joy in life.”

It is also important that others rally around those going through miscarriage bereavement, offering them support and comfort. “Acknowledge their loss,” advises Samuel. “Move towards them with kindness, don’t try and fix it, ask them what they need – and listen.”

Complete Article HERE!

Guns have become the leading cause of death for American kids

By Caitlin Owens

Firearms were the leading cause of death for kids one and older for the first time in 2020, the most recent year for which CDC data is available.

Why it matters: The firearm death rate among children is steadily rising, as more kids are involved in gun-related homicides like Tuesday’s mass shooting in Uvalde, Texas, as well as suicides and accidents.

By the numbers: Nearly two-thirds of the 4,368 U.S. children up to age 19 who were killed by guns in 2020 were homicide victims, per the CDC. Motor vehicle crashes, formerly the leading cause of death for kids one and older, killed nearly 4,000 children.

  • Another 30% of firearm-related child fatalities were suicides, 3% were accidental and 2% were of undetermined intent.
  • Male youths were significantly more likely to be killed by guns, while vehicle crashes claimed more females.
  • There were also stark racial disparities. The firearm death rate for Black children was more than four times that of white children, and white children were still more likely to be killed by motor vehicles than guns.
  • D.C. had the highest firearm death rate, followed by Louisiana, Alaska and Mississippi.

Of note: Among children younger than 1, congenital anomalies — or birth defects — were the leading cause of death in 2020, resulting in 4,043 fatalities, per the CDC.

What they’re saying: “As the progress made in reducing deaths from motor vehicle crashes shows, we don’t have to accept the high rate of firearm-related deaths among U.S. children and adolescents,” researchers recently wrote in a New England Journal of Medicine article that highlighted the trend.

  • The study noted that while the National Highway Safety Administration could take the lead addressing road-traffic fatalities, firearms are one of the few products whose safety isn’t regulated by a designated federal agency.
  • It has taken 20 years to build a database of firearm-related deaths that includes data from all 50 states, the researchers wrote.

The bottom line: School shootings have become tragically common in the U.S., but constitute only a small fraction of gun deaths among children.

Complete Article HERE!

Mourning Elephant Mother Carries Dead Calf in Weeks-Long Ritual

By Rich Co

According to a LiveScience feature, asian mourning elephant mothers, much like their African counterparts, perform rituals for their dead calf.

New research shows that Asian mourning elephant mothers, similar to their African counterparts, mourn their deceased by carrying the dead calf in their trunks for days or sometimes weeks.

Sanjeeta Sharma Pokharel of the Smithsonian’s National Zoo and conservation biology institute, along with Nachiketha Sharma of the Kyoto University Institute for Advanced Study, explained that Asian elephants (Eliphaz Maximus) are social creatures that exhibit emotional responses to the loss of one of their conspecifics.

Pokharel and Sharma, co-authors of the study, pointed out that understanding how elephants react to death could have far-reaching implications for their conservation.

The two researchers observed that people who see an elephant react to a dead relative develop some sense of kinship, compassion, and empathy toward that species.

They added that anything that directly connects people could pave the way for coexistence in elephant ranging countries.

African Elephants and Asian Elephants

The researchers pointed out that African bush elephants (Loxodonta Africana) have been observed to react emotionally when a member of the herd dies.

The elephants’ reactions include approaching the corpse and touching it with their drunkards, kicking at the carcass, and standing nearby as if standing guard.

However, Asian elephants live in forested habitats, the researchers point out, which makes it more difficult to observe the animal.

Brian Aucone, senior vice president for biological sciences at the Denver Zoo, pointed out that Asian elephants can be up to 100 feet away from the observer and the observer still can not see the elephants because the forest is so dense. Aucone is not involved in the study.

Studying Videos

The two researchers, along with Raman Sukumar, a co-author, decided to conduct the observation using YouTube, a video platform. In their search for keywords related to Asian elephants and death, the team found 39 videos of 24 instances between 2010 and 2021 in which Asian elephants reacted to the loss of a herd member.

The search found only 4% for semi-captive elephants, i.e., animals working in the timber industry or tourist parks in Asia. 16% are captive elephants and the rest, 80%, of the videos show wild elephants.

The research team reports that some of the most noticeable behaviors in the videos are when a calf dies. In five of the 12 videos, an adult female is seen carrying the calf. Judging by the condition of the corpse, the mother elephant had been carrying the dead calf for days or weeks.

Other common elephant reactions seen in the videos include restlessness or alertness when elephants are near the corpse.

The elephants also show exploratory movements, such as approaching or examining the body, or touching and smelling it. Aucone pointed out that elephants communicate through their sense of smell, so it is not surprising that the elephant sniffs the corpse.

Aucone also pointed out that this is similar to cases where the zoo has to euthanize older elephants due to illness or infirmity. The staff gives the herd a chance to say goodbye to their fallen member. The survivors often sniffed the deceased elephant or put their trunks to its mouth, which is a social behavior among elephants.

Complete Article HERE!

Claiming a monopoly on truth and decency is no way to win the assisted dying debate

Arguments for and against helping someone die were rehearsed in the House of Lords last week – echoing debates unfolding across the world

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A man is standing on the parapet of a bridge. He is about to jump. What should you do? Most people would agree that the moral act would be to talk to him to try to persuade him not to. Most people would also agree that giving him a push because “that’s what he wanted” would be committing murder.

Your grandmother is dying. She is in great pain, has only a few days to live and wants you to end her life now. It’s unlikely that most people could bring themselves to do that. But most would probably understand if you did accede to her wishes, however tormented you felt. And even more were a doctor to give her sufficient painkillers to allow her to die in peace.

The debate about assisted dying is one in which there are no simple answers; a debate in which we need to acknowledge that truth and moral decency lie on both sides and in which context is particularly important in judging what is right and wrong. On Friday, the House of Lords debated Baroness Meacher’s assisted dying bill, which would allow terminally ill adults assistance to end their life. It’s unlikely to become law, but the debate will undoubtedly continue.

The Lords debate was respectful, often moving. Much of the wider discussion on the issue, however, is mired in bad faith assumptions: on the one side, the idea that opposition to assisted dying is driven primarily by religious obscurantism and on the other that supporters are tantamount to murderers and “not to be trusted”. Those are not good places from which to start a hugely significant yet highly sensitive public debate.

I am broadly in favour of decriminalising, in a limited fashion, acts of assisted dying but I also understand the force of the arguments from opponents and partly agree with them. This is a terrain to be carefully negotiated.

The first, critical argument is about the sanctity of life. This is more than a religious argument. Most of us, religious or irreligious, place special meaning on human life, recognising that we are not merely machines or slabs of meat, but persons, moral agents to whom we accord dignity and respect by virtue of being human.

Few, however, view the sanctity of life in absolute terms. Many who oppose assisted dying support the death penalty. Most would defend the taking of a life in self-defence or accept killing other humans in a war they think is just or necessary. Again, context matters.

The philosopher Ronald Dworkin observed that we value life through three lenses: subjectively (treasuring the inner life of the individual); intrinsically (insisting that a human life is valuable in and of itself); and instrumentally (gauging people through their usefulness for society and other individuals). Opponents of assisted dying rightly stress the intrinsic value of life and worry that in expanding the legal capacity to end life we may be drawn to viewing human worth in more instrumental ways. One of the ironies, though, is that in stressing the intrinsic, we may implicitly downgrade the subjective aspect of being human. We can end up giving priority to the state of being alive – of breathing or being conscious – over an individual’s moral sense of what life means to them. Yet it is that capacity for subjective evaluation that truly makes us human.

A second key argument is that of the “slippery slope” – the belief that one step towards any form of assisted dying would irrevocably lead to a world in which we accepted the culling of the old and the infirm.

There are few spheres of life in which slippery slope arguments have not been deployed. In the late 1960s, a Times leader warned that the new technique of IVF could lead to a race between nations, each “breeding a race of intellectual giants”. Any attempt to decriminalise marijuana becomes a downward path to smack being sold in the corner shop. And, for many, gay marriage is “a slippery slope to polygamy and bestiality”.

It’s a metaphor whose power derives from imagining social developments as though they were natural and inevitable, just as a ball rolls down a slope under gravity. What shapes human laws and conduct, however, are not invisible natural forces but political debate. There is nothing inevitable about social change and taking one step does not mean a slide all the way to the bottom.

Many critics point to developments in the Netherlands as an example of a slippery slope. In 2002, assisted dying was legalised for people with incurable illnesses facing “unbearable suffering”. Over the past decade, there has been a debate over extending the law to all those over 75 who feel they have “completed” their life. This, indeed, would be a calamitous move. The problem, though, is not the mythical slippery slope, but that critics have not yet convinced proponents that their proposals are dangerous and wrong. This, as much as any other contentious issues, from Brexit to immigration, should be worked out through public debate, not fear-mongering about slippery slopes.

Linked to slippery slope arguments are fears that assisted dying laws will devalue the lives of old or disabled people. Many might feel they are a burden on their families or on society and so feel a pressure to die. These are important issues and a primary reason the proposed expansion of the law in the Netherlands is so troubling. Society should view the elderly and the vulnerable as people to whom we have obligations, not as inconveniences weighing us down.

The real issue, though, is less the law than wider social attitudes towards elderly and disabled people. During the Covid pandemic, there have been abuses of “do not resuscitate” orders, apparently given to care home residents and those with learning difficulties without regard for their wishes or welfare. The stories are shocking, but few would argue that the solution lies in getting rid of DNR notices. The same logic should shape the assisted dying debate, too.

There are many other questions – from the need for improved palliative care to the relationship between individual choice and the common good – with which to wrestle in this debate. Too often, though, these get entangled in a common refusal to see the significance of the argument from the other side. Compassion and moral righteousness don’t belong in bunkers.

Complete Article HERE!