09/30/15

Assisted Death Laws Won’t Make It Better to Die in the US

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SOME PEOPLE JUST want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.

001Soon, terminal patients in California could have that option. Currently sitting on Governor Jerry Brown’s desk is a bill that, if signed into law, would allow doctors to prescribe life-ending drugs. Not surprisingly, this is controversial. Proponents believe the law would save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.

But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.

In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.

Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.

If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.

In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.

Raising the stakes in California

On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.

Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.

Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:

“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”

Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients would have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law would expire.

Missing the point

But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.

Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.

That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.

As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.

“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.

Palliative communication

Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.

“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.

But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.

In California, Governor Brown has until October 71 to sign the aid in dying bill into law. While he hasn’t tipped whether his pen will enact or veto, he has criticized the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Adding to speculation that he may veto, Brown is also a former Jesuit seminarian (Catholic groups oppose the bill).

But the bill has a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: Life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.

1 UPDATE: Correction 12:12am ET 9/30/2015 The original story said the enactment deadline was September 28. In California, the governor has 12 working days to act on bills (such as the End of Life Option Act) passed in special Assembly sessions. But, that time began when the bill landed on the governor’s desk (which was September 25), not when the bill cleared the Assembly (September 11). If the governor doesn’t sign or veto within that deadline, the bill automatically becomes law.

Complete Article HERE!

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09/29/15

I loved my son so much I planned his peaceful death, says brave mum of brain tumour boy

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, SACHA LANGTON-GILKS

David Langton-Gilks died from a brain tumour in August 2012 at the age of 16 but before his death his mum Sacha planned a peaceful passing for him at home surrounded by his family

Loving: Sacha and David

Death. It’s the final taboo, isn’t it? Especially when it’s a child. We can’t – or won’t talk – about it.

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign for earlier diagnosis of brain tumours in children and young people shatters that taboo.

To help other parents, she talks about how her son David, who died from a brain tumour in August 2012 at the age of 16, had a peaceful death at home surrounded by his family.

She emphasises that, just like we make birth plans, we should make death plans and how being able to die peacefully at home was her last act of love for her cherished son.

David Langton-Gilks before his death

Family: David Langton-Gilks before his death with his mum Sacha

Here Sacha tells her story:

Days before he died, the last lucid words my 16-year-old son David, or DD as we like to call him, said were: ‘I love it here.’ He was looking out his bedroom window into the treetops where, at night, owls – one of his passions – would come to call.

It was just a few days before London 2012 Paralympics and for five years, since being diagnosed with an aggressive, cancerous brain tumour at the age of 11, DD had endured everything globally available on the NHS, including 11 brain operations, years of chemotherapy, weeks of radiotherapy, blood transfusions and a stem cell transplant.

His cancer had now spread down his spine and throughout his brain, leaving him with severe dementia. Unfortunately someone’s child has to be in the 25 percent that don’t survive this type of brain tumour, a medulloblastoma .

David Langton-Gilks before his death

Smile: David Langton-Gilks before his death which left his family devastated

Three years on, I can honestly say that giving my child a ‘good’ death – without pain, calm and comfortable in his own bed, in the arms of his family with his beloved cat sitting on the bed, will be my greatest life achievement. And it gives me immense comfort in my grief.

I am speaking out to break a taboo because I remember the silence that hung over parents in the children’s cancer ward when a family ‘went home.’

 

We all knew that meant the child was going to die but no one could say it.

Fear overwhelmed us. If you cannot even say the word, how are you going to be able to discuss what choices best suit your family for end of life care?

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity's HeadSmart campaign

Mum: Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign

With brain tumours being the biggest cancer killer in the UK of children and adults under 40, The Brain Tumour Charity’s feedback from many parents is that they feel completely isolated with no information.

Even doctors do not say the D word because they have been trained to ‘fix’ things and view death as somehow a failure on their part.

But I see my doctors and nurses as geniuses for enabling a fabulous quality of life for my child right up to his death. This taboo about death has to be shattered so that we can improve how we care for our loved ones at the end of their lives.

When I was asked to give a speech to parents and doctors at The Brain Tumour Charity’s first paediatric brain tumour information day about how we managed DD’s death, the process itself, I didn’t know if I could do It. But then I remembered that voiceless fear in parents’ eyes at the hospital.

I call this an ‘ante-mortem class’ – one parent sharing their experience with another parent just as you would at an ante-natal class.

After all, you wouldn’t dream of giving birth without talking to another mum, reading books or going to a class, would you?

Lack of information about end of life care for children breeds fear and stops parents from even being able to articulate questions to their doctors.

David Langton-Gilks before his death with his family

Tough: David before his death with his family

On top of this is our society’s obsession with being ‘positive’ with hope. The fear that somehow by saying the D word means we ourselves might have made it happen by not being positive enough, by giving up hope. It is our punishment for being cowards.

But death is part of life and comes to us all. So how can it be negative or positive? It just is what it is – ceasing to be.

When we ‘went home’ after DD’s final scan in May 2012, which showed his cancer was everywhere and he had weeks to live, we were not doing nothing or stopping treatment – there was a detailed advanced care plan in place.

He was having full palliative care treatment co-ordinated by Southampton General Hospital which included Gold Standards Framework for end of life care at our GP’s surgery and also involved Marie Curie.

It centred on the relief of his symptoms of pain and vomiting to give him quality of life.

It just was not curative treatment as this was no longer possible.

David Langton-Gilks before his death

Tragic: David Langton-Gilks before his death

But we still had hope – we had changed that hope from one that DD could be cured to one where he had the best quality of life possible in the limited time he had left.

Some people do a bucket list, but DD just wanted to hang out at home with me and his dad Toby, his brother Rufus, now 17, and sister Holly, now 13.

He didn’t want to spend another second in hospital and wanted to have a party with his friends. So we did.

If we had not faced up to the fact that he was going to die soon, we would have spent hours of that incredibly precious time in hospital trying to convince ourselves that the chemotherapy on offer would cure him.

DD would have hated it and we’d have been traumatised by each successive scan, contradicting what we longed to see.

My biggest agony was knowing that helping my child to suffer less meant I might have less time with him.

Nothing will ever be as painful as letting DD go, but how could I have made him suffer pain on my account? That would have made me the most selfish mother alive and I couldn’t have lived with that.

So the biggest battle was actually me.

In Childhood Cancer Awareness Month, from one parent to others going through the same thing, as a gift from my heart, I am sharing how my son died to shatter the taboo and make your battle less.

 
Complete Article HERE!

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09/27/15

How Death Came into the World

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By ALLAN KELLEHEAR

Traditional, mythic accounts of the origin of death extend back to the earliest hunter-gatherer cultures. Usually these stories are morality tales about faithfulness, trust, or the ethical and natural balance of the elements of the world.

Asante Culture

In Asante Culture the death of a person is seen as a blow to the entire community and everybody shares the grief.

According to an African Asante myth, although people did not like the idea or experience of death, they nevertheless embraced it when given the choice, as in the tale of an ancient people who, upon experiencing their first visitation of death, pleaded with God to stop it. God granted this wish, and for three years there was no death. But there were also no births during that time. Unwilling to endure this absence of children, the people beseeched God to return death to them as long as they could have children again.

The death myths of aboriginal Australia vary enormously among clans and linguistic groups. Among most of them, however, death is often attributed to magic, misfortune, or to an evil spirit or act. Occasionally death is presented as the punishment for human failure to complete an assignment or achieve a goal assigned by the gods. Still other stories arise from some primordial incident that strikes at the heart of some tribal taboo. Early myths about death frequently bear these moral messages.

Australian-Rainbow-Serpent

Among the Tiwi of Bathurst and Melville Islands in northern Australia, the advent of death is explained by the Purukapali myth, which recounts a time before death entered the world, when a man lived with his infant son, his wife, and his younger brother. The younger brother was unmarried and had desires for his brother’s wife. He met her alone while she was gathering yams, and they spent the rest of the afternoon in sexual union. During this time, the husband was minding his infant son, who soon became hungry. As the son called for feeding, the husband called in vain for his missing wife. At sunset, the wife and younger man returned to find that the infant son had starved to death. Realizing what had happened, the husband administered a severe beating to his brother, who escaped up to the sky where he became the moon. His injuries can still be seen in the markings of the moon every month. The husband declared that he would die, and, taking the dead infant in his arms, performed a dance—the first ceremony of death—before walking backwards into the sea, never to be seen again.

Purukapali myth

The Berndts, Australian anthropologists, tell another ancient myth about two men, Moon and Djarbo, who had traveled together for a long while but then fall mortally ill. Moon had a plan to revive them, but Djarbo, believing that Moon’s idea was a trick, rebuffs his friend’s help and soon dies. Moon dies also, but thanks to his plan, he managed to revive himself into a new body every month, whereas Djarbo remained dead. Thus, Moon triumphs over bodily death while the first peoples of that ancient time followed Djarbo’s example, and that is why all humans die.

Death As a Being

None of these stories is meant to suggest that aboriginal people do not believe in spiritual immortality. On the contrary, their lore is rich in accounts of immortal lands. These are accounts of the origin of physical rather than spiritual death.

 

The idea of death as a consequence of human deeds is not universal. The image of death as a being in its own right is common in modern as well as old folklore. In this mythic vein, death is a sentient being, maybe an animal, perhaps even a monster. Sometimes death is disguised, sometimes not. Death enters the world to steal and silence people’s lives. In Europe during the Middle Ages death was widely viewed as a being who came in the night to take children away. Death was a dark, hooded, grisly figure—a grim reaper—with an insatiable thirst for the lives of children. Children were frequently dressed as adults as soon as possible to trick death into looking elsewhere for prey.

The film industry produced two well-known films, the second a remake of the first, which examined this idea of death as a being who makes daily rounds of collecting the dead: Death Takes a Holiday (1934) and Meet Joe Black (1998), both of which portrayed death as perplexed at his victim’s fear of him. In a wry and ironic plot twist, a young woman falls in love with the male embodiment of death, and it is through an experience of how this love creates earthly attachment that death comes to understand the dread inspired by his appearance.death-takes-a-holiday-movie-poster

But the idea of death as a humanlike being is mostly characteristic of traditional folktales that dramatize the human anguish about mortality. By contrast, in the realm of religious ideas, death is regarded less as an identifiable personal being than as an abstract state of being. In the world of myth and legend, this state appears to collide with the human experience of life. As a consequence of human’s nature as celestial beings, it is life on Earth which is sometimes viewed as a type of death. In this way, the question of how death enters the world in turn poses the question of how to understand death as an essential part of the world.

The Garden of Eden

In the book of Genesis, the first man, Adam, wanders through the paradisiacal Garden of Eden. Pitying his solitary nature, God creates the first woman, Eve, from Adam’s rib. Adam and Eve are perfectly happy in the Garden of Eden and enjoy all its bounty with one exception: God prohibits the couple from eating from the Tree of Knowledge.

The Garden of Eden is utopian. Utopia, in its etymological sense, is literally “no place.” It is a perfect, probably spiritual domain for two celestial beings who, bearing the birthmarks of the God who created them, are immortal. These two beings eat from the Tree of Knowledge, which ironically, distracts them from their awareness of God and his omnipresence. As a result of this error, Adam and Eve become the embodiment of forgetfulness of the divine. In other words, they become material beings, as symbolized in their sudden awareness of and shame in their nakedness.

adam_and_eveAdam and Eve thus “fall” into the flesh, into the world as it is known, with the entire legacy that embodiment entails: work, suffering, and physical death. Paradoxically, the Tree of Knowledge heralds ignorance of their divine nature, and the fall into flesh signals their sleepwalking indifference to that nature. Human beings therefore need God’s help through the divine mercy of his Son or the sacred texts of the Bible to awaken them to their divine destiny. Without this awakening, the wages of sin are eternal death—an eternal darkness spent in chains of ignorance, a blindness maintained by humans’ attachment to mere earthly concerns and distractions. This famous story thus embodies all the paradoxical elements of creation, implying that human life is actually no life at all, but its opposite: death.

In the kernel of this local creation story lies the archaic analogy of all the great stories about how life is death and death is the beginning of true life. The cycles of life and death are not merely hermeneutic paradoxes across different human cultures, but they are also the fundamental narrative template upon which all the great religions explain how death entered the world and, indeed, became the world.

In Greek mythology, as Mircea Eliade has observed, sleep (Hypnos) and death (Thanatos) are twin brothers. Life is portrayed as a forgetfulness that requires one to remember, or recollect, the structures of reality, eternal truths, the essential forms or ideas of which Plato wrote. Likewise, for postexilic Jews and Christians, death was understood as sleep or a stupor in Sheol, a dreary, gray underworld in the afterlife. The Gnostics often referred to earthly life as drunkenness or oblivion. For Christians, the exhortation was also to wake from the sleep of earthly concerns and desire and to watch and pray. In Buddhist texts, the awakening is a concern for recollection of past lives. The recollection of personal history in the wheel of rebirth is the only hope anyone has of breaking this cycle of eternal return.thanatos8403

Sleep, then, converges with death. Both have been the potent symbols and language used to describe life on earth. It is only through the remembering of human’s divine nature and its purpose, brokered during an earthly life of asceticism or discipline, or perhaps through the negotiation of trials in the afterlife, that one can awaken again and, through this awakening, be born into eternal life.

Modern Accounts

The humanistic trend of twentieth-century social science and philosophy has diverged from this broadly cross-cultural and long-standing view of death as earthly existence and true life as the fruit of earthly death. Contemporary anthropology and psychoanalytic ideas, for example, have argued that these religious ideas constitute a “denial of death.” The anthropologist Ernest Becker and religious studies scholar John Bowker have argued that religions generate creation myths that invert the material reality of death so as to control the anxiety associated with the extinction of personality and relationships.

Like-minded thinkers have argued that philosophical theories which postulate a “ghost in the machine”—a division of the self into a body and a separate spirit or soul—are irrational and unscientific. But, of course, the assumptions underlying these particular objections are themselves not open to empirical testing and examination. Criticism of this kind remains open to similar charges of bias and methodological dogma, and tends, therefore, to be no less speculative than religious views of death.

Medicine Wheel DrumBeyond the different scientific and religious arguments about how life and death came into the world, and which is which, there are several other traditions of literature about travel between the two domains. Scholars have described the ways in which world religions have accounted for this transit between the two halves of existence—life and death. Often, travel to the “world of the dead” is undertaken as an initiation or as part of a shamanic rite, but at other times and places such otherworldly journeys have been part of ascetic practices of Christians and pagans alike.

In the past half century psychological, medical, and theological literature has produced major descriptions and analyses of near-death experiences, near-death visions, visions or hallucinations of the bereaved, and altered states of consciousness. Research of this type, particularly in the behavioral, social, and clinical sciences, has reignited debates between those with materialist and religious assumptions about the ultimate basis of reality.

Traditionally confined to the provinces of philosophy and theology, such debates have now seeped into the heretofore metaphysics-resistant precincts of neuroscience, psychology, and medicine. What can these modern psychological and social investigations of otherworldly journeys tell experts about the nature of life and death, and which is which?

The religious studies scholar Ioan Peter Couliano argues that one of the common denominators of the problem of otherworldly journeys is that they appear to be mental journeys, journeys into mental universes and spaces. But such remarks say more about the origin of “mental” as a term of reference than the subject at hand. The glib observation that otherworldly journeys may be mere flights of fancy may in fact only be substituting one ambiguous problem with yet another.

As Couliano himself observes, people in the twenty-first century live in a time of otherworldly pluralism—a time when such journeys have parallels in science and religion, in fantasy and fact, in public and private life.

Conclusion

Death has permeated life from the first stirrings of matter in the known universe—itself a mortal phenomenon, according to the prevailing cosmological theory of contemporary physics. Death came incorporated in the birth of the first star, the first living molecules, the birth of the first mammoth, the first cougar, the first human infant, the first human empire, and the youngest and oldest theory of science itself. Early cultures groped with the meaning of death and its relationship to life. The very naming of each, along with the attendant stories and theories, is an attempt to somehow define and thus master these refractory mysteries. All of the major myths about how death entered the world are, in fact, attempts to penetrate below the obvious.

Most have concluded that Death, like Life, is not a person. Both seem to be stories where the destinations are debatable, even within their own communities of belief, but the reality of the journey is always acknowledged—a continuing and intriguing source of human debate and wonderment.

See also: Afterlife IN Cross-Cultural Perspective ; Australian Aboriginal Religion ; Gods AND Goddesses OF Life AND Death ; Immortality

Complete Article HERE!

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09/26/15

8 Lies We Need to Give Up About What It Means to Grieve

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By Julie Zeilinger

“I live my sadness every day, but I don’t resent it any more,” Zelda Williams recently wrote in an Instagram post about depression and grieving her father, the late Robin Williams. “I do it now so that the wonderful moments of joy I do find are not in order to forget, but to inhabit and enjoy for their own sake.”

Williams is certainly not the only one grappling with the complex process of grief. Most people experience loss at some point in their lives. Yet stigmas and rigid stereotypes about the experience persist. Here are eight lies we need to stop perpetuating about the simultaneously universal yet deeply personal experience of grief.

1. Grief is finite.

8 Lies We Need to Give Up About What It Means to Grieve

“Society as a whole is extremely understanding when it comes to acknowledging that the days immediately following a loss are hard,” Vivian Nunez, founder of the organization Too Damn Young, told Mic. But after the funeral has been planned and final goodbyes said, “the understanding begins to dwindle.”

People are expected to “get over their grief, move on and have closure,” psychologist and grief counselor Heidi Horsley told Mic.

But in reality, grief is an individual process that arguably may never definitively end.

“Loss has a very long arc,” Rebecca Soffer, co-founder and CEO of Modern Loss, told Mic. “It’s something you live with in various forms throughout the rest of your life.”

Though sometimes interminable, grief is a dynamic process that becomes incorporated into one’s life.

“We transform our grief, but we don’t get over it,” Horsley said. Nunez described grief as an emotion that “morphs into something you learn to walk alongside of, but it never goes away.”

2. Grief is a linear progression.

8 Lies We Need to Give Up About What It Means to Grieve

On Grief and Grieving authors Elisabeth Kübler-Ross and David Kessler write that there are five stages of grief: denial, anger, bargaining, depression and acceptance. But while these stages may provide a useful framework, “grief is as individual as our lives,” rather than a concrete, universal timeline.

“There’s a bigger chance of you jumping between stages than there is that you’ll go in order,” Nunez said.

“There’s literally no rhyme or reason to what you’re going to go through because every human being is different, every loss experience is different,” Soffer said. “Loss is a very complex process.” It’s rare to have had complete closure with a loved one before losing them, which means stages of grief can manifest in “a completely haphazard format with endless permutations and combinations,” she added.

3. There’s a “right” way to grieve.

8 Lies We Need to Give Up About What It Means to Grieve

Grieving individuals often feel caught in a double standard of emotionality: Especially beyond a certain age, people are often regarded as cold-hearted if not emotional enough or wallowing if their grief is too palpable. Should they fall somewhere in the middle, as many do, they may feel judged, or misunderstood.

Teens and young adults who participate in the Too Damn Young community often experience this, Nunez said, and feel “ashamed” or like “they’re carrying baggage” when their grief “doesn’t fit a set norm or the one-size-fits-all formula.”

“So many people were expecting me to be crying 24/7,” one community member, 18-year-old Selena, told Mic of her experience after losing her mother. “When I went back to school, everyone was staring at me waiting for me to break down in the middle of the room.”

“The way a person grieves is very much their own to experience,” Nunez said. “Unless you’re harming yourself or others, there’s no wrong way to grieve. No two grief experiences are the same, but there is comfort in knowing we all start from the same place — the simple fact we’ve lost someone.”

Ultimately, “everyone has their own ways of coping, and whatever is working for you is the right way for you,” Selena said. “Don’t feel bad if you aren’t crying all day. Don’t feel bad if you’re not a complete mess.”

4. There’s a right way to support somebody who is grieving.

 

The single worst thing one can say to somebody who is grieving, according to Horsley? Nothing.

“People feel like if they say something it might upset you, but by saying nothing, you’re not acknowledging that anything ever happened,” Horsley said.

Acting as a sounding board for those experiencing loss may be the best approach, Soffer said. Some may worry that the reminder of their loss will cause more emotional damage, she said, but asking them about the person they lost and asking them to tell stories about them can be helpful to them. That’s the idea behind the Too Damn Young community’s campaign #TellUsAboutThem.

“The goal is to remind people that our loved ones are more than just their deaths, they are the lives and moments they lived before they died,” Nunez said.

5. Either make a sweeping gesture or don’t bother.

8 Lies We Need to Give Up About What It Means to Grieve

There are easy ways one can acknowledge and support others’ loss — like setting a calendar reminder to check in with a grieving friend, Soffer suggests. A simple task like cleaning for them or bringing them dinner can be just as meaningful, if not more, than a concerted, serious conversation about their loss.

Support can also take the form of moderating one’s own reaction to those who are grieving. “You have no idea what’s going on behind closed doors,” Soffer said. “Try and stop yourself if they do something to frustrate you, or are a little obnoxious. Just remember that they’ve gone through something that’s really profoundly sad and life-altering and identity-altering and give them the benefit of the doubt.”

While supportive gestures likes these need not be daunting, Soffer said, they should go beyond a text or a Facebook like. While doing so may make grieving individuals briefly feel better, she encourages people to “use these amazing tools of connectivity to be a trigger for more thoughtful action.”

6. Other factors of one’s identity are irrelevant to their grief.

8 Lies We Need to Give Up About What It Means to Grieve

Gender may uniquely affect one’s response to loss, according to the experts.

“Men tend to grieve shoulder to shoulder, not face to face,” Horsley said. Men “have been socialized to suck it up, walk it off, that real men don’t cry,” she said, but “women haven’t been socialized with those kinds of beliefs.”

Research backs this up: According to a study released by the Comfort Zone Camp, 38% of women, compared to 29% of men strongly agreed that losing a parent in childhood was “the toughest thing [they] ever had to deal with.” While 57% of men who had lost a parent in childhood surveyed agreed that people need to get over death because it’s part of life, only 36% of women agreed.

On the other hand, men who lose their wives “are often unprepared,” Rochester Institute of Technology professor Javier Espinosa, a lead researcher of the study, told the Telegraph. Men’s health may be affected more by losing “their caregiver, someone who cares for them physically and emotionally,” than women who lose their husbands, since “this same mechanism is likely weaker,” Espinosa said.

Age can also be hugely impactful. “There are different challenges that come with grieving as a young person because you’re figuring yourself out a bit more,” Nunez said. “When a significant person in your life dies, you begin to ask the bigger questions at a much younger age. It’s hard to face mortality at an age when you feel as though you and those around you are essentially invincible.”

7. Talking about it is morbid and inappropriate.

8 Lies We Need to Give Up About What It Means to Grieve

“I was once a kid in a classroom, under the age of 20, who had lost her mom, and I never knew anyone else who had,” Nunez said. “This is where having a conversation around grief could significantly impact those who are in the shadows about those they lost.”

Soon after Nunez launched Too Damn Young, she received multiple emails confirming she wasn’t the only one who felt they couldn’t discuss the experience of loss.

Surrounding oneself with others who have experienced loss and sharing those experiences, Horsley said, can be hugely beneficial.

“When you’re with other people who have been there and made it, you know you can too,” she said. “You’re not alone and other people have been on this journey of grief that you’re on. You need to reach out and grieving in community is a great way to find hope.”

8. You should feel guilty about moving on.

8 Lies We Need to Give Up About What It Means to Grieve

“Sometimes we hold on to the pain even longer than we need to because the pain represents that person and the loss, and we feel guilty about moving forward and moving farther away from them, even though the reality is when we’re in a positive space,” Horsely said.

But in reality, moving past grief can be an enlightening experience all its own.

“When you experience a loss like this, you get to see a really wild new amount of life,” NPR producer Rachel Ward wrote in a Medium blog post about her experience losing her husband. “Suddenly the range of the type of sad you can feel, to the type of happy you can feel, is busted open. The spectrum from happy to sad isn’t a foot wide anymore ?—? it’s as far as your arms can stretch and then to the edges of the room and then up the block and over into the next neighborhood.”

Ultimately, Ward noted, grief — and life more generally — is not about seeking or even achieving constant contentment. Rather, she wrote, she found that accepting the feeling of “being uncomfortable is a very effective way to be a human.”

Complete Article HERE!

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09/24/15

Deeply religious Jimmy Carter embraces cutting edge science in cancer battle

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Listening to the 90-year-old Jimmy Carter’s press conference last month concerning his battle with cancer, one might assume his pre-political career to have been in medicine, rather than nuclear physics for the U.S. Navy’s early nuclear submarine program. Not only did the former president explain his surgery in terms of the precise volume of liver tissue resected and the size of the four metastatic lesions in his brain shown on his MRI, but he also outlined the treatment plan.Former president Jimmy Carter

Importantly, in response to more than one question regarding whether, due to his religion beliefs, age, or other reasons, he ever considered something other than what his doctors — topic specialists in oncology, surgical oncology, and radiation oncology — were recommending, he replied with a resounding “no”. Despite talking frequently about his religious faith, despite teaching Bible classes to kids on Sundays in his hometown church, Carter will do what he can to prevent nature from running its malignant course. He will not sink into the gutter of alternative, faith-based medicine, but quite the contrary. He his put his fate in the hands of science. In his case, that means immunotherapy, which currently is showing promise for just a handful of cancerous conditions, but that includes the one he has, melanoma. It also radiation therapy, targeted very precisely to the four lesions in his brain.

What the treatment will mean for Carter’s prognosis is not something that can be answered with great precision, given the small amount of information that’s been released about his condition thus far. What is both public and improves his prospects is the fact that the four brain metastases are tiny, approximately 2 mm each, and the fact that it’s a cancer that responds to the immunotherapy drug that he’s getting. On the other hand is a concern that other metastases may yet turn up in other parts of his body. Either way, however, Jimmy Carter apparently plans to make his battle with cancer very public, and potentially this can do a lot for cancer awareness that ultimately can save many lives.

Carter’s diagnosis

In recent years, health-centered media have done a fairly good job at making people aware of malignant melanoma. For this reason, the public has a fairly accurate image of melanoma as a type of skin cancer, in fact the most deadly type. Many people are aware that a change in in a mole or the appearance of a new, dark mark on the skin is not something to ignore, but something to have examined by a dermatologist and biopsied. But what’s not well known is that approximately 2 percent of melanomas begin deep inside the body, not in the skin. These internal melanomas come from melanocytes, the same types of cells that cause cutaneous melanoma. But, unlike cutaneous melanoma on Sun-exposed areas, you cannot prevent internal melanomas by controlling your Sun exposure, nor can you see them in an early stage with your own eyes.

In President Carter’s case, the only reason why doctors found his melanoma, initially in the liver, is that he had an abdominal magnetic resonance imaging (MRI) scan as part of a comprehensive exam after developing a very bad cold. After approximately 10 percent of his liver was resected biopsied, it was confirmed that the liver lesion was cancer, and specifically it was melanoma. However, the testing also showed that it had been removed with clear margins of healthy tissue around it, meaning that the rest of the organ was in good shape.

In a certain sense, the melanoma diagnosis after surgery was a relief for Carter, because initial presentation had looked as though it could have been pancreatic cancer, which runs in Carter’s family. His father, two sisters, and brother all died from it, and the liver is commonly a presentation site, even though it starts in the pancreas. But Carter’s doctors had a high level of suspicion that the melanoma had not started in the liver, that the liver lesion was a metastasis from another site. Consequently, they ordered more MRI scanning. This revealed the four spots in his brain and it’s the reason why some media outlets have referred to Carter’s condition rather inaccurately as “brain cancer”.

Different types of cancer affect the brain

What President Carter has is not “brain cancer”. It’s metastasis to the brain from somewhere else. Metastasis by cancers starting somewhere else actually is the most common kind of cancer to have in the brain. However, it’s important to distinguish brain metastasis from malignant tumors that arise in the brain itself. One category of primary brain malignancies is glioblastoma, which kills approximately 15,000 adults in the US each year and is the brain malignancy that Vice President Biden’s son, the late Beau Biden, may have had, based on reasonable speculation by the Washington Post.

It’s particularly important to raise awareness about brain malignancy and where state-of-the art medicine is at present, in light of a scientifically illiterate and extremely paranoid accusation made last June by writer Mike Adams of the pseudoscience publication Natural News. After outlining his opinion that the younger Biden was “killed by a combination of chemotherapy, radiation, and glyphosate”, Adams went on to slam the field of oncology with a string of accusations and insults:

Oncologists who prescribe chemotherapy drugs earn massive profits from those drugs, all while failing to disclose their own conflicts of interest to their patients. Unfortunately, chemotherapy kills far more people than it saves because its primary side effect is recurring cancer. Yes, chemotherapy causes cancer. And the ignorant oncologists who prescribe it actively encourage patients to avoid protecting their healthy cells with nutritional therapies such as medicinal mushrooms, anti-cancer foods and healthy oils such as cod liver oil. In fact, oncology as practiced today is a barbaric medical practice that quite literally kills people by the hundreds of thousands each year…Beau, it seems, was handed over to the conventional cancer industry which, sadly, told him he had a “clean bill of health” just 18 months before the cancer surged back… almost certainly worsened by the chemotherapy itself.

After attributing Beau Biden’s death to chemotherapy, Adams goes on to blame the herbicide glyphosate (an analog of the amino acid glycine) — and indirectly Hillary Clinton and others who support biotechnology companies — for Biden’s developing the malignancy in the first place. The possibility of a glyphosate-cancer connection has been addressed, and shown to be highly speculative, on the Genetic Literacy Project and other news outlets, but here we can address Adams’ alarmist assertions regarding conventional oncology treatments, and chemotherapy in particular.

Chemotherapy saves lives

There are two things that Adams got right, although he wrote about them so far out of context that they can do nothing but mislead the readers. First of all, people do receive chemotherapy and then die, and often this happens after they initially start to get better after following a cancer diagnosis; they go into what is called remission, but often the remission does not turn into a cure. That happens because many types of cancer respond well at first to certain cancer drugs, and then more resistant cancer cells take over.

What Adams didn’t say is that with many types of cancer, today the incidence of the cancer coming back after initial remission is reduced compared with a half century ago, because of increasing understanding of how the chemotherapy drugs work, increased capabilities of new chemotherapy drugs, and because of the development of systematic protocols for using particular chemotherapeutic “cocktails” of different agents. Adams also didn’t say that reason why patients die when cancer comes back after a remission is not that chemotherapy causes new cancer. He implied that in his article, but it’s completely false. What comes back is the same cancer that the patient had before.

The second thing that Adams got right is that many chemotherapy drugs can themselves cause cancer. As explained above, it’s not the same cancer that comes back within weeks or months in cases when chemotherapy doesn’t get rid of a cancer. Instead, the correct but out-of-context fact is that there are cancer drugs that can cause secondary malignancies decades later. This is particularly true of a category of anti-cancer drugs called alkylating agents. This is a huge issue in oncology, particularly in cases of people who are treated with those drugs for childhood cancers, who are then at elevated risk for other cancers decades later.

But what Adams did not say–what makes it extremely out of context–is the reason why we know about secondary malignancies caused by certain chemotherapy agents. We know about it because there is an increasing number of survivors of childhood, teenage, and young adult cancers who are walking around today and sometimes developing cancer 20, 30, or 40 years after chemotherapy, radiation, and surgery cured them of the cancer they had in their youth, that otherwise would have killed them.

In the 1940s and 50s, cancers, such as acute lymphoblastic leukemia (ALL) in children and Hodgkin lymphoma in teenagers and young adults, were nearly complete death sentences. But today, most of the kids diagnosed with these two conditions survive, and they survive because of chemotherapy. How did this happen? By the 1960s, oncologists had just a handful of chemotherapeutic agents. Sometimes, they worked a little for certain cancers. People got better, or went into remission for a little while, and a small fraction were actually cured. Overall, the cure rate was dismal, but then researchers started noticing that the cure rates varied a great deal from medical center to medical center. Different oncology teams were using and dosing the different drugs in slightly different ways. Some were combining more than one drug but the combinations also varied between institution.

Thus, in the 1960s and 70s, oncologists and scientists started having cancer teams report what their cases and treatments very systematically, and they started looking at the outcomes of different drugs, alone and in combination with other drugs, for different types of cancers.

What grew out of this approach was a knowledge base founded on the collective experience of oncologists around the world. This led to very particular protocols for combined chemotherapy cocktails for specific types of cancer. As the various cocktails were being developed, various new drugs were also introduced to mitigate the side effects, thereby allowing for more aggressive doses. Depending on the type of cancer, and the locations within the body, the chemotherapy protocols are also combined with radiation therapy and surgery, along with other types of drugs.

All of this together has given oncologists the ability to kill off cancer to the point that it does not come back, because any cell that happens to be resistant to one agent is killed by another agent, or by the radiation, or, if the tumor mass gets low enough, by the patient’ own immune system. Thus, while chemotherapy armaments today do include many old drugs used unsuccessfully 70 years ago, they way they are used today is very different, and for a bunch of cancers the rate of survival has increased significantly. At the same time, radiation oncology has also gone through major advances. Not only is the power of radiation that can be delivered to a tumor gone up steadily, but the targeting has gotten better, due to precise imaging with technologies such as MRI and computed tomography (CT) and nuclear medicine techniques. Also, the shielding has improved, which makes a huge difference, allowing delivery of powerful radiation only where it is needed while sparing healthy tissues.

Importantly, one of the main factors affecting survival is matching the precise staging of the cancer (where and to what extent is has spread in the body) to the appropriate treatment. Today, the staging is more precise that it used to be, because of improved diagnostic capability, and that is improving survival as well.

President Carter’s Treatment Plan

Based on what information is available, President Carter is now receiving radiation to the four metastases in his brain. There is a very good chance that all four lesions will be eliminated from his brain with minimal side effects, because of the small size of the lesions, the precise targeting, the high tech shielding, and because of one other reason: special agents can be given that will make the brain metastases more sensitive to radiation. Carter is also getting treatment with pembrolizumab, which is being called abreakthrough drug. It works by boosting the immune system, and therefore is part of an emerging type of therapy known as immunotherapy. Currently, immunotherapy has limited use for cancer across the board, but melanoma is one type of cancer where immunotherapy is showing particular promise.

Complete Article HERE!

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09/23/15

Sexuality and Illness – Breaking the Silence

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By: Anne Katz PhD

Sexuality is much more than having sex even though many people think only about sexual intercourse when they hear the word. Sexuality is sometimes equated with intimacy, but in reality, sexuality is just one way that we connect with a spouse or partner we love (the true meaning of intimacy). Our sexuality encompasses how we see ourselves as men and women, who we are attracted to emotionally and physically, what turns us on (eroticism), our thoughts and fantasies, and yes, also what we do when we are sexually active, either alone or with a partner. Our sexuality is connected to our image of ourselves and it changes over the years as we age and face threats from illness and disability and, eventually, the end of life.seniors_men

Am I still a sexual being?

Illness can affect our sexuality in many different ways. The side effects of treatments for many diseases, including cancer, can cause fatigue. This is often identified as the number one obstacle to sexual activity. Other symptoms of illness such as pain can also affect our interest in being sexually active. But there are other perhaps more subtle issues that impact how we feel about ourselves and, in turn, our desire to be sexual with a partner or alone, or if we even see ourselves as sexual beings. Think about surgery that removes a part of the body that identifies us as female or male. Many women state that after breast cancer and removal of a breast (mastectomy), they no longer feel like a woman; this affects their willingness to appear naked in front of a partner. Medications taken to control advanced prostate cancer can decrease a man’s sexual desire. Men in this situation often forget to express their love for their partner in a physical way, no longer touching them, kissing them, or even holding hands. This loss of physical contact often results in two lonely people.  Humans have a basic need for touch; without that connection, we can end up feeling very lonely.

Just talk about it!

seniors_in_bedCommunication lies at the heart of sexuality. Talk to your partner about what you are feeling, how you feel about your body, and what you want in terms of touch. Ask how you can meet your partner’s needs for touch and affection. The most important thing you can do is to express yourself in words. Non-verbal communication and not talking are open to misinterpretation and can lead to hurt feelings. Our sexuality changes with age and time and illness; we may not feel the same way about our bodies or our partner’s body that we did 20, 30 or more years ago. That does not mean we feel worse – with age comes acceptance for many of us – but we do need to let go of what was, and look at what is and what is possible.

The role of health care providers

Health care providers should be asking about changes to sexuality because of illness or treatment, but they often don’t. They may be reluctant to bring up what they see as a sensitive topic and think that if it’s important to the patient, then he or she will ask about it. This is not good. Patients often wait to see if their health care provider asks about something and if they don’t, they think that it’s not important. This results in a silence and leaves the impression that sexuality is a taboo topic.senior intimacy02

Some health care providers are afraid that they won’t know the answer to a question about sexuality because nursing and medical schools don’t provide much in the way of education on this topic. And some health care providers appear to be too busy to talk about the more emotional aspects of living with illness. This is a great pity as sexuality is important to all of us – patients, partners, health care providers. It’s an important aspect of quality of life from adolescence to old age, in health and at the end of life when touch and love are so important.

Ask for a referral

If you want to talk about this, just do it! Tell your health care provider that you want to talk about changes in your body or your relationship or your sex life! Ask for a referral to a counselor or sexuality counselor or therapist or social worker. It may take a bit of work to get the help you need, but there is help.

Complete Article HERE!

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09/22/15

Sexuality at the End of Life

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By Anne Katz RN, PhD

In the terminal stages of the cancer trajectory, sexuality is often regarded as not important by health care providers. The need or ability to participate in sexual activity may wane in the terminal stages of illness, but the need for touch, intimacy, and how one views oneself don’t necessarily wane in tandem. Individuals may in fact suffer from the absence of loving and intimate touch in the final months, weeks, or days of life.head:heart

It is often assumed that when life nears its end, individuals and couples are not concerned about sexual issues and so this is not talked about. This attitude is borne out by the paucity of information about this topic.

Communicating About Sexuality with the Terminally Ill

Attitudes of health care professionals may act as a barrier to the discussion and assessment of sexuality at the end of life.

  • We bring to our practice a set of attitudes, beliefs and knowledge that we assume applies equally to our patients.
  • We may also be uncomfortable with talking about sexuality with patients or with the idea that very ill patients and/or their partners may have sexual needs at this time.
  • Our experience during our training and practice may lead us to believe that patients at the end of life are not interested in what we commonly perceive as sexual. How often do we see a patient and their partner in bed together or in an intimate embrace?
  • We may never have seen this because the circumstances of hospitals and even hospice may be such that privacy for the couple can never be assured and so couples do not attempt to lie together.

intimacy-320x320For the patient who remains at home during the final stages of illness the scenario is not that different. Often the patient is moved to a central location, such as a family or living room in the house and no longer has privacy.

  • While this may be more convenient for providing care, it precludes the expression of sexuality, as the patient is always in view.
  • Professional and volunteer helpers are frequently in the house and there may never be a time when the patient is alone or alone with his/her partner, and so is not afforded an opportunity for sexual expression.

Health care providers may not ever talk about sexual functioning at the end of life, assuming that this does not matter at this stage of the illness trajectory.

  • This sends a very clear message to the patient and his/her partner that this is something that is either taboo or of no importance. This in turn makes it more difficult for the patient and/or partner to ask questions or bring up the topic if they think that the subject is not to be talked about.

Sexual Functioning At The End Of Life

Factors affecting sexual functioning at the end of life are essentially the same as those affecting the individual with cancer at any stage of the disease trajectory. These include:go deeper

  • Psychosocial issues such as change in roles, changes in body- and self-image, depression, anxiety, and poor communication.
  • Side effects of treatment may also alter sexual functioning; fatigue, nausea, pain, edema and scarring all play a role in how the patient feels and sees him/herself and how the partner views the patient.
  • Fear of pain may be a major factor in the cessation of sexual activity; the partner may be equally fearful of hurting the patient.

The needs of the couple

Couples may find that in the final stages of illness, emotional connection to the loved one becomes an important part of sexual expression. Verbal communication and physical touching that is non-genital may take the place of previous sexual activity.

  • Many people note that the cessation of sexual activity is one of the many losses that result from the illness, and this has a negative impact on quality of life.
  • Some partners may find it difficult to be sexual when they have taken on much of the day-to-day care of the patient and see their role as caregiver rather than lover.
  • The physical and emotional toll of providing care may be exhausting and may impact on the desire for sexual contact.
  • In addition, some partners find that as the end nears for the ill partner, they need to begin to distance themselves. Part of this may be to avoid intimate touch. This is not wrong but can make the partner feel guilty and more liable to avoid physical interactions.

Addressing sexual needs

senior intimacyCouples may need to be given permission to touch each other at this stage of the illness and health care providers may need to consciously address the physical and attitudinal barriers that prevent this from happening.

  • Privacy issues need to be dealt with. This includes encouraging patients to close their door when private time is desired and having all levels of staff respect this. A sign on the door indicating that the patient is not to be disturbed should be enough to prevent staff from walking in and all staff and visitors should abide by this.
  • Partners should be given explicit permission to lie with the patient in the bed. In an ideal world, double beds could be provided but there are obvious challenges to this in terms of moving beds into and out of rooms, and challenges also for staff who may need to move or turn patients. Kissing, stroking, massaging, and holding the patient is unlikely to cause physical harm and may actually facilitate relaxation and decrease pain.
  • The partner may also be encouraged to participate in the routine care of the patient. Assisting in bathing and applying body lotion may be a non-threatening way of encouraging touch when there is fear of hurting the patient.

Specific strategies for couples who want to continue their usual sexual activities can be suggested depending on what physical or emotional barriers exist. Giving a patient permission to think about their self as sexual in the face of terminal illness is the first step. Offering the patient/couple the opportunity to discuss sexual concerns or needs validates their feelings and may normalize their experience, which in itself may bring comfort.

More specific strategies for symptoms include the following suggestions.senior lesbians

  • Timing of analgesia may need to altered to maximize pain relief and avoid sedation when the couple wants to be sexual. Narcotics, however, can interfere with arousal which may be counterproductive.
  • Fatigue is a common experience in the end stages of cancer and couples/individuals can be encouraged to set realistic goals for what is possible, and to try to use the time of day when they are most rested to be sexual either alone or with their partner.
  • Using a bronchodilator or inhaler before sexual activity may be helpful for patients who are short of breath. Using additional pillows or wedges will allow the patient to be more upright and make breathing easier.
  • Couples may find information about alternative positions for sexual activity very useful.
  • Incontinence or the presence of an indwelling catheter may represent a loss of control and dignity and may be seen as an insurmountable barrier to genital touching.

footprints-leftIt is important to emphasize that there is no right or wrong way of being sexual in the face of terminal illness; whatever the couple or individual chooses to do is appropriate and right for them. It is also not uncommon for couples to find that impending death draws them much closer and they are able to express themselves in ways that they had not for many years.

Complete Article HERE!

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