Children and Adolescents’ Understanding of Death

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Parents often feel uneasy and unprepared in responding to their children’s curiosity about death. Studies indicate that many parents felt they had not been guided to an understanding of death in their own childhood and as parents either had to improvise responses or rely on the same evasive techniques that had been used on them. It is useful, then, to give attention to the attitudes of adults before looking at the child’s own interpretations of death.

The Innocence of Childhood

Two contrasting developments occurred as a prosperous middle class arose during the Industrial Revolution, which began in the mid-eighteenth century. In the past children had been either economic assets or liabilities depending upon circumstances, but seldom the focus of sentiment. Now both children and childhood were becoming treasured features of the ideal family, itself a rather new idea. By Victorian times (the period of the reign of Britain’s Queen Victoria, from 1837 to 1901), the family was viewed as a miniature replica of a virtuous society under the stern but loving auspices of God. Instead of being regarded primarily as subadults with limited functional value, children were to be cherished, even pampered. Frilly curtains, clever toys, and storybooks written especially for young eyes started to make their appearance. The idea of childhood innocence became attractive to families who had reached or were striving for middle-class success and respectability. Fathers and mothers had to meet obligations and cope with stress and loss in the real world, while it was considered that children should be spared all of that. It was believed that children cannot yet understand the temptations and perils of sex or the concept of mortality and loving parents should see to it that their children live in a world of innocence as long as possible.

Furthermore, Sigmund Freud suggested that in protecting their children from awareness of death, then, parents, in a sense, become that child and vicariously enjoy its imagined safety and comfort.

One of history’s many cruel ironies was operating at the same time, however. Conditions generated by the Industrial Revolution made life miserable for the many children whose parents were impoverished, alcoholic, absent, or simply unlucky. The chimney sweep was one of the most visible examples. A city such as London had many chimneys that needed regular cleaning. Young boys tried to eke out a living by squeezing through the chimneys to perform this service. Many died of cancer; few reached a healthy adulthood. While mothers or fathers were reading storybooks to beloved children, other children were starving, suffering abuse, and seeing death at close range in the squalid alleys.

Children so exposed to suffering and death did not have the luxury of either real or imagined innocence; indeed, their chances for survival depended on awareness of the risks. Many children throughout the world are still exposed to death by lack of food, shelter, and health care or by violence. Whether or not children should be protected from thoughts of death, it is clear that some have no choice and consequently become keenly aware of mortality in general and their own vulnerability in particular.

Children’s Death-Related Thoughts and Experiences

Encounters with death are not limited to children who are in high-risk situations, nor to those who are emotionally disturbed. It is now well established that most children do have experiences that are related to death either directly or indirectly. Curiosity about death is part of the normal child’s interest in learning more about the world. A goldfish that floats so oddly at the surface of the water is fascinating, but also disturbing. The child’s inquiring mind wants to know more, but it also recognizes the implied threat: If a pretty little fish can die, then maybe this could happen to somebody else. The child’s discovery of death is often accompanied by some level of anxiety but also by the elation of having opened a door to one of nature’s secrets.

Child observation and research indicate that concepts of death develop through the interaction between cognitive maturation and personal experiences. Children do not begin with an adult understanding of death, but their active minds try to make sense of death-related phenomena within whatever intellectual capacities they have available to them at a particular time. Adah Maurer, in a 1966 article titled “Maturation of Concepts of Death,” suggested that such explorations begin very early indeed. Having experienced frequent alternations between waking and sleeping, some three-year-olds are ready to experiment with these contrasting states:

In the game of peek-a-boo, he replays in safe circumstances the alternate terror and delight, confirming his sense of self by risking and regaining complete consciousness. A light cloth spread over his face and body will elicit an immediate and forceful reaction. Short, sharp intakes of breath, and vigorous thrashing of arms and legs removes the erstwhile shroud to reveal widely staring eyes that scan the scene with frantic alertness until they lock glances with the smiling mother, whereupon he will wriggle and laugh with joy. . . . his aliveness additionally confirmed by the glad greeting implicit in the eye-to-eye oneness with another human. (Maurer 1966, p. 36)

A little later, disappearance-and-reappearance games become great fun. Dropping toys to the floor and having them returned by an obliging parent or sibling can be seen as an exploration of the mysteries of absence and loss. When is something gone for good, and when will it return? The toddler can take such experiments into her own hands—as in dropping a toy into the toilet, flushing, and announcing proudly, “All gone!” Blowing out birthday candles is another of many pleasurable activities that explore the riddle of being and nonbeing.

JFKsalute
This popular image of the Kennedy family taken during John F. Kennedy’s funeral shows John Jr. paying tribute to his father with a salute.

The evidence for children’s exploration of death-related phenomena becomes clearer as language skills and more complex behavior patterns develop. Children’s play has included death-themed games in many societies throughout the centuries. One of the most common games is tag and its numerous variations. The child who is “It” is licensed to chase and terrorize the others. The touch of “It” claims a victim. In some versions the victim must freeze until rescued by one of those still untouched by “It.” The death-related implications are sometimes close to the surface, as in a Sicilian version in which a child plays dead and then springs up to catch one of the “mourners.” One of the most elaborate forms was cultivated in the fourteenth century as children had to cope with the horrors of the Black Death, one of the most lethal epidemics in all of human history. “Ring-around-the-rosy . . . All fall down!” was performed as a slow circle dance in which one participant after another would drop to the earth. Far from being innocently oblivious to death, these children had discovered a way of both acknowledging death and making it conform to the rules of their own little game.There are many confirmed reports of death awareness among young children. A professor of medicine, for example, often took his son for a stroll through a public garden. One day the sixteen-month-old saw the big foot of another passerby come down on a fuzzy caterpillar he had been admiring. The boy toddled over and stared at the crushed caterpillar. “No more!” he said. It would be difficult to improve on this succinct statement as a characterization of death. The anxiety part of his discovery of death soon showed up. He no longer wanted to visit the park and, when coaxed to do so, pointed to the falling leaves and blossoms and those that were soon to drop off. Less than two years into the world himself, he had already made some connections between life and death.

Developing an Understanding of Death

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The critically acclaimed Longfellow story deals with themes of death and bereavement.

Young children’s understanding of death is sometimes immediate and startlingly on target, as in the fuzzy caterpillar example. This does not necessarily mean, however, that they have achieved a firm and reliable concept. The same child may also expect people to come home from the cemetery when they get hungry or tired of being dead. Children often try out a variety of interpretations as they apply their limited experience to the puzzling phenomena associated with death. Separation and fear of abandonment are usually at the core of their concern. The younger the child, the greater the dependence on others, and the more difficult it is for the child to distinguish between temporary and permanent absences. The young child does not have to possess an adult conception of death in order to feel vulnerable when a loved one is missing. Children are more attuned to the loss of particular people or animal companions than to the general concept of death.

A pioneering study by the Hungarian psychologist Maria Nagy, first published in 1948, found a relationship between age and the comprehension of death. Nagy described three stages (the ages are approximate, as individual differences can be noted):

  • • Stage 1 (ages three to five): Death is a faded continuation of life. The dead are less alive—similar to being very sleepy. The dead might or might not wake up after a while.
  • • Stage 2 (ages five to nine): Death is final. The dead stay dead. Some children at this level of mental development pictured death in the form of a person: usually a clown, shadowy death-man, or skeletal figure. There is the possibility of escaping from death if one is clever or lucky.
  • • Stage 3 (ages nine and thereafter): Death is not only final, but it is also inevitable, universal, and personal. Everybody dies, whether mouse or elephant, stranger or parent. No matter how good or clever or lucky, every boy and girl will eventually die, too.

Later research has confirmed that the child’s comprehension of death develops along the general lines described by Nagy. Personifications of death have been noted less frequently, however, and the child’s level of maturation has been identified as a better predictor of understanding than chronological age. Furthermore, the influence of life experiences has been given more attention. Children who are afflicted with a life-threatening condition, for example, often show a realistic and insightful understanding of death that might have been thought to be beyond their years.

The Adolescent Transformation

Children are close observers of the world. Adolescents can do more than that. New vistas open as adolescents apply their enhanced cognitive abilities. In the terminology of influential developmentalist Jean Piaget, adolescents have “formal operations” at their command. They can think abstractly as well as concretely, and imagine circumstances beyond those that meet the eye. This new level of functioning provides many satisfactions: One can criticize the established order, take things apart mentally and put them back together in a different way, or indulge in lavish fantasies. The increased mental range, however, also brings the prospect of death into clearer view. The prospect of personal death becomes salient just when the world of future possibilities is opening up.

Adolescents have more than enough other things to deal with (e.g., developing sexual role identity, claiming adult privileges, achieving peer group acceptance), but they also need to come to terms somehow with their own mortality and the fear generated by this recognition. It is not unusual for the same adolescent to try several strategies that might be logically inconsistent with each other but that nevertheless seem worth the attempt. These strategies include:

  • Playing at Death: To overcome a feeling of vulnerability and powerlessness, some adolescents engage in risk-taking behavior to enjoy the thrilling relief of survival; dive into horror movies and other expressions of bizarre and violent death; indulge in computerized games whose object is to destroy targeted beings; and/or try to impersonate or take Death’s side (e.g., black dress and pasty white face make-up worn by “goths”).
  • Distancing and Transcendence: Some adolescents engross themselves in plans, causes, logical systems, and fantasies that serve the function of reducing their sense of vulnerability to real death within real life. Distancing also includes mentally splitting one’s present self from the future self who will have to die. One thereby becomes “temporarily immortal” and invulnerable.
  • Inhibiting Personal Feelings: It is safer to act as though one were already nearly dead and therefore harmless. Death need not bother with a creature that seems to have so little life.

These are just a few examples of the many strategies by which adolescents and young adults may attempt to come to terms with their mortality. Years later, many of these people will have integrated the prospect of death more smoothly into their lives. Some will have done so by developing more effective defensive strategies to keep thoughts of death out of their everyday lives—until they become parents themselves and have to deal with the curiosity and anxiety of their own children.

Complete Article HERE!

“To an Athlete Dying Young”

“To an Athlete Dying Young”
By: A. E. Houseman

The time you won your town the race
We chaired you through the market-place;
Man and boy stood cheering by,
And home we brought you shoulder-high.

To-day, the road all runners come,To an Athlete Dying Young
Shoulder-high we bring you home,
And set you at your threshold down,
Townsman of a stiller town.

Smart lad, to slip betimes away
From fields were glory does not stay
And early though the laurel grows
It withers quicker than the rose.

Eyes the shady night has shut
Cannot see the record cut,
And silence sounds no worse than cheers
After earth has stopped the ears:

Now you will not swell the rout
Of lads that wore their honours out,
Runners whom renown outran
And the name died before the man.

So set, before its echoes fade,
The fleet foot on the sill of shade,
And hold to the low lintel up
The still-defended challenge-cup.

And round that early-laurelled head
Will flock to gaze the strengthless dead,
And find unwithered on its curls
The garland briefer than a girl’s.

Drugs to prevent ‘death rattle’ of dying patients not justifiable if intention is only to reduce distress of relatives, says new guidelines

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The National Institute of Health and Care Excellence (NICE) says there is little evidence that the drugs used are effective

By CHARLIE COOPER

Drugs used to prevent the so-called “death rattle” of dying patients can have unpleasant side effects and may not be “morally and economically” justifiable if used only to reduce the distress of relatives, according to new guidelines.

The death rattle is a common symptom in the final days and hours before death. It is one of most well-known indicators that death is near and can be extremely upsetting for relatives at the bedside.

It occurs when secretions such as saliva collect at the back of the throat – often after a person has lost their ability to swallow – creating a hollow, gurgling sound.

Clinicians often use drugs called anti-muscarinic agents to ‘dry up’ the secretions, in order to reduce the symptoms.

However, according to new draft guidance on the care of the dying from the National Institute of Health and Care Excellence (NICE), there is little evidence that the drugs are effective, and they can also cause side effects including dryness in the mouth, blurred vision and retention of urine.

The guidance says that repositioning the patient or using suction tubes can be just as effective at reducing the symptoms.

“It is common to experience noisy respiratory secretions at the end of life…and the death rattle is a strong predictor of death,” the draft guidance says. “The noise can cause considerable distress, both at the time and possibly after death, due to concerns that the person may have drowned or suffocated to death.

“For many years it has been the practice of clinicians to administer subcutaneous anti-muscarinic agents in an attempt to ‘dry up’ secretions and relieve any distress primarily to carers and relatives despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.”

It goes on to say that, along with the side effects, the cost of using drugs makes it “hard both morally and economically to justify their continued use when the current evidence does not support them and treatment is usually aimed at minimising distress of people other than the dying person.”

The new guidance also includes recommendations on fluid intake for dying people, decision-making around medication and communication with patients and relatives.

Their publication follows the abolition last year of the controversial Liverpool Care Pathway (LCP), which was withdrawn after a review found serious failings in the way it was being implemented, including concerns that decisions around end of life care were not always being made by experienced clinicians.

NICE also said the LCP had suffered from a “perception that hydration and some essential medications may have been withheld or withdrawn, with negative impact on the dying process.”

The new guidelines, which will now go out for consultation, state that people in the last days of life should be encouraged to drink if they are able and wish to.

Sir Andrew Dillon, chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

“Earlier this year the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”

Complete Article HERE!

I help terminally-ill parents leave stories behind for their children

Working with cancer patients makes me more determined to experience all that life has to offer, but sometimes the pain is more than I can bear

By Rachel Smith

Rachel Smith
‘I love to swim in the sea all year round – it makes me feel acutely alive.’

We all have an idea of how life is going to be, but mine has changed radically in the past seven years. I work on a project for children whose parents have cancer, helping them understand the illness and supporting them when their parent dies. I also support parents to communicate with children and, when the prognosis is not looking positive, I help them write books and letters for the family they are leaving behind.

I spend months, sometimes years, getting to know a family and then one day while going about my daily life I will receive a text, often early in the morning saying “he slipped away at 4am” or “Rachel, he’s gone”. Over the past seven years I have experienced so many losses in my work. I try to remain emotionally separate, but I am human, a compassionate human, and it hurts every time. Often I check my work phone just before doing the school run. I drive my two young children to school and then cry as I go on to work. It is not the same gut-wrenching loss as that of a personal loved one, but silent tears in the knowledge that a family’s world has shattered.

As I arrive in work, all the normal things are happening. People in the kitchen are talking about diets, referrals for new families are coming in and I am trying to fathom how I can fit a funeral into my week if the family need me to attend. I often get told by families that I’m the one who remained real throughout everything, and I don’t want to let them down at the end.

When working in end-of-life care the level of intimacy with someone changes completely. Time becomes the most precious commodity and communication is honest. To be able to give someone the chance to convey their dreams is an honour, but it takes its toll.

Recently, a gentleman I worked with died. I had known his family for six years, Ifilmed his eulogy and hours of footage for his family. The magnitude of life and death suddenly hit me. I felt I had reached a limit of sadness and could not take any more. I needed time to think, to feel alive again and to be surrounded by life.

In this job there is no place for burnt-out heroes or martyrs. We all have a limit and I felt like an empty cup. I find that to cope I need to strip life back: I want to feel the world around me, the rain falling on my face and be in places of natural beauty. I need to be with people I love, who understand my job without needing to talk about it. Talking is exactly what I don’t want to do; I want to laugh and be outside. I love to swim in the sea all year round – it makes me feel acutely alive.

When recording books with people a common plea I hear is “I have no regrets, I just wish I had more time”. So I create time in my own life; I breathe, love, hug and do all those clichéd things so that I can go back into work and be useful again. I refill my cup. I think that when working in such a profession, at times we need to bend the boundaries to be human and to understand that is what people need. It is ok to be hurt and show hurt, to put your hands up and say I need a break, I need to go and breathe for a while.

To finish, I shall leave you with words by Fiona, who wrote this for her three children two weeks before she died.

“You are meant to be here. I believe that although I wanted to be here and share your life: the ups and the downs. God needs me elsewhere and you have to stay on Earth. Be a good friend and surround yourself with good friends. You don’t need to be the most popular one, the most strong or the most clever. But always be a good friend to those around you.”

Complete Article HERE!

Everything you ever wanted to know about death but were too afraid to ask

By 

When Ally Mosher’s​ grandfather died, the experience was far from peaceful. His death in hospital after a series of strokes was “chaotic and traumatic and something my grandmother knew she didn’t want for herself”.

After clearly expressing her wishes, Ms Mosher’s grandmother Margaret Butler died quietly at the age of 94 last month. She was in her own bed, in comfort and surrounded by close family members.

“Knowing what she wanted made it a lot easier for us,” Ms Mosher said. “We knew she wanted us to be there when she passed and my mum was holding her hand. It sounds like an odd thing to say but it was a perfect death.”

Ally Mosher, whose grandmother died a few weeks ago, is learning how to deal with bereavement in a positive way.

While we are familiar with the idea of living well, the idea of dying well is relatively new but one gaining momentum in the wider community.

Ms Mosher, a graphic designer from Hazelbrook, uses her own experience to promote “death literacy” although she admits not everyone is comfortable with the subject.

“There is a social stigma about death,” she said. “You can’t talk about death in a healthy, positive way. If you are talking about death you must be weird or morbid.”

Community group The Groundswell Project has spent the past five years creating wider awareness about dying to help overcome reluctance to address the issue.

The group has come up with 10 things people need to know about death, with workshops on the topic to be launched in conjunction with Dying to Know Day on August 8.

The Groundswell Project’s director, Kerrie Noonan, a clinical psychologist specialising in palliative care, found most people sought practical advice about death.

“People really wanted more information about the nuts and bolts stuff,” she said. “What do I need to tell my family? How do I approach the subject with them?”

A report by The Grattan Institute published last year found found that dying in Australia was more institutionalised than the rest of the world, with the majority of people dying in hospital or a residential care facility.

“We’re not around death,” Ms Noonan said. “Death is removed; it takes place in a hospital or a hospice. We don’t have a context for having conversations about death.”

Things to know before you go:

1. Make a plan. Fewer than 5 per cent of people have an end of life plan.

2. Write a will. Only 55 per cent of people who die have a will.

3. Tell someone what you want. Of those who know they are dying, only 25 per cent will have spoken to their families about their wishes.

4. Only 30 per cent of deaths are unexpected. Make a decision about how you want to die while you have time.

5. Doctors don’t die like the rest of us. They are more likely to die at home with less invasive intervention at the end of their lives.

6. Earlier referral to palliative care means living longer with better quality of life.

7. You don’t need a funeral director. DIY funerals are becoming more popular.

8. The majority of Australians choose cremation but there are alternatives including natural burial, burial at sea or donating your body for research.

9. We don’t grieve in stages. Only 10 per cent of us need professional support after a death.

10. 60 per cent of people think we need to spend more time talking about death.

Read more: http://www.smh.com.au/nsw/everything-you-ever-wanted-to-know-about-death-but-were-too-afraid-to-ask-20150730-gij35d.html#ixzz3hNlfhyTU

Complete Article HERE!

I’ve Been There For Hundreds Of Dying People — Here’s What I’ve Learned

By 

Over the past six years, I have watched hundreds of people transition from life to death ­— sitting with them in hospice care or in the comfort of their own homes as they sometimes peacefully, sometimes painfully, drew their last breaths. This was my commitment as a hospice volunteer: to support as many individuals as I could in the dying process. This role is becoming increasingly popular as society lifts the veil of silence that surrounds death.

My path to this calling was unexpected. When I met Coop a little over a decade ago, I was 18, fresh out of high school, and eager to explore what early adulthood was like. I didn’t know then that the redheaded flight attendant and comedian would become my first love — and my first great loss. Our first date began with a disclosure. “I have stage-four lung cancer and it is likely terminal,” she told me. Mesmerized by her presence, I decided to overlook that minor detail. Her fiery hair was intact, she laughed like a courageous hyena, and she was spunkier than anyone I had ever met. I told myself that she was going to be just fine.

We proceeded to get to know one another, though we did things slightly differently than the norm. Instead of going to the movies, we watched movies in the chemotherapy wing of the hospital. Our sleepovers were often spent cuddled up on a hospital bed; we proved two people could fit. Aside from the needles and nausea, we were just two people falling in love.

Frightened by the situation, friends would ask, “How can you do this, fall in love with someone who is dying?” My response was unrehearsed and rather simple: “We don’t choose who we fall in love with. It just happens.”

It definitely happened.

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As I became well-versed in cancer lingo, I slowly morphed into the caregiver for a declining middle-aged woman — who was also my lover. From a radical acceptance of the situation on a Monday to kicking and screaming resistance that Wednesday, we rode the emotional end-of-life roller coaster together. Coop’s wild ride in this life ended on December 7, 2008. My heart broke that day: the day I began my solo ride.

Weighed down and often immobile in a deep pit of grief, my raw heart ached for her return. I was clueless about loss, but I managed to reach out to a local hospice that guided me to their bereavement team. A very caring social worker and chaplain showed up at my door just a few days later. She offered a presence that I was desperately hungry for. The most important gift she gave me, however, was her willingness to listen. I have come to understand now that listening is the most powerful gift you can offer someone who is grieving. Most people feel like they have to fill the space with words, but open space is what gives the other person permission for grief, praise, and healing.

During our meeting that day, the social worker planted a seed. “I don’t normally say this to people who are in your position,” I recall her telling me, “but I feel that once you have healed some, you may consider involving yourself in hospice.” I barely heard her at the time, but after a while, I returned to her words again and again.

Two years after Coop’s death, I found myself volunteering for a hospice organization. A patient I saw frequently brought me an immense amount of healing. Her name was Leslie, also the name of my mother. Diagnosed with schizophrenia and 48 years old, Leslie was actively dying with no family or friends to support her. I will never forget the day I went into her room, expecting to see her frail in bed, when to my surprise, she jumped up, turned the radio on, and danced all around the room. Although she was dying, her spirit soared. I learned a valuable lesson that day: Though someone may be dying, their soul remains whole.

I was blessed with the gift of being with her just moments before she died. I watched the thrombosis in her neck and massaged her feet, which were slowly losing circulation. Most importantly, I let her know that it was safe to let go.

About a year later, my best friend, Sreeja, took her own life. Grief pierced my heart once again and a lot of my old wounds reopened. It was a pivotal point in my life — the moment I made a choice that would change its course. I realized that Sreeja, Coop, and Leslie were catalysts in my life, pushing me to get as intimate as possible with love, spirituality, and death. After Sreeja died, instead of fighting death, this time I welcomed it. I invited it in as a guest. I offered it a cup of tea. Stretching my broken heart open, I discovered that my passion and work in this world resides in end-of-life care and advocacy, in helping people understand and embrace their mortality.

When we have the willingness to truly acknowledge death, we open ourselves to become that much closer to life. As an end-of-life advocate, death has become my way of life. I believe it is meant to break us down, because in the rebuilding, we have a critical decision to make: Can we be open enough to allow the loss of loved one or our own mortality to transform us?

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At the end of last year, I established The Conscious Dying Network, an organization that offers retreat-style workshops and an annual summit on topics of conscious dying, aging, caregiving, and grief. We have a network of teachers and end-of-life pioneers and the message at the core of our work is that we will all die. We don’t know exactly how or when, but we can be 100% sure it will happen. The work, then, lies in getting comfortable with that information, working through our fears, and asking what this truth has to offer each of us in our day-to-day living.

Though they were always painful, over time, my reactions to death morphed from anguish to acceptance. Yes, there was still an ache, but it was accompanied with a bittersweet truth: We will all die. My friend Maitreya has a saying, “Good people die, sick people die, healthy people die, bad people die — we will all die.” She’s right. None of us know when we will go, and it is this moment-to-moment uncertainty that leads me to follow my current path — of reimagining how we approach death — in whatever moments I do have here.

My intention is to continue bringing awareness and presence to the bedsides of those who are dying and those who are living. We will all take the same grand leap one day. Life and death are not separate, but all part of the same journey — and when we find appreciation for the beautiful gift that is our own mortality, we discover that life can be good again after the loss of a loved one. I am living proof.

Complete Article HERE!

We need to talk about death

After cancer returned for a third time David (known as DD) and his family decided to forego further treatment and enjoy life, his mother Sacha Langton-Gilks is keen for other families to think positively about end-of-life preparation and talk of a death plan as we do for a birth plan

Sacha Langton-Gilks’ 16 yr old son David (known as DD) who died of a brain tumour in 2012
By Ruth Wood
It might sound shocking when Sacha Langton-Gilks describes her teenage son David’s death as “absolutely fabulous.” But as his story emerges, it makes perfect sense. David, known as DD, was diagnosed with a brain tumour in 2007 at the age of 11. Over the next five years he endured 20 months of chemotherapy, six weeks of radiotherapy and 11 brain operations – an experience his mother says was a “living hell” for her son.

Then in May 2012, the cancer re-appeared for the third time: it was clear he could not be cured. People advised the family to stay positive and try everything to keep DD alive. However, the teenager and his parents decided to be positive in a different way: by rejecting the powerful medication that might prolong his life by a very short time, and by focusing on enjoying the time he had left.

Sacha Langton-Gilks with husband Toby, son Rufus (17) and daughter Holly (12)

“He’d already suffered high dose chemotherapy and it hadn’t worked,” says his mother. “Rather than trying to prolong his life with all that entailed, we chose maximum quality of life in a shorter time because that was right for our child.”

Mrs Langton-Gilks 47 who lives near Shaftesbury, Dorset, with husband Toby and children Rufus, 17, and Holly, 12, says that without doubt the way her son died “is going to be the single biggest achievement of my life. Instead of going back and forth to hospital hoping he was going to be cured and putting him through more suffering, we focused on keeping him calm and comfortable at home.

“He had a stonkingly good party with all his friends. But mainly we just chilled out and kept things as normal as possible.”

David died three months later at the age of 16. His last lucid words were “I love it here”.

David (known as DD), lying in front, at his final party

Mrs Langton-Gilks is keen to help other families think positively about end-of-life preparation and in May gave a powerful talk about her son’s death at an event for parents run by the Brain Tumour Charity[www.thebraintumourcharity.org/dyingwell]. She is part of a growing movement of professionals, carers and patients who say we should approach death the same way as we do that other universal rite, birth – with ante-mortem classes, groups and end-of-life midwives.

“You wouldn’t dream of giving birth without some idea of what to expect and a birth plan” says Mrs Langton-Gilks. “Yet we face death with no equivalent preparation. We need to get to the point in society where it is as acceptable to talk about a death plan as a birth plan.”

Hermione Elliott agrees. In 2011, the midwife and palliative care nurse founded Living Well, Dying Well, a non-profit training provider for end-of-life doulas; like birth doulas, these are self employed laypeople who provide practical and emotional support to families during this rite of passage, either voluntarily or for a small charge.

Seventy per cent of Britons say they would prefer to be at home when they die, yet half of us spend our final moments in hospital.

Barbara Chalmers is the founder of finalfling.com, an end-of-life planning website

“We handed over death to doctors many years ago,” said Ms Elliott. “Families don’t encounter it in a natural way and lack confidence. A lot of people don’t even know they’re allowed to die at home or they can get funding for adjustable hospital beds or aids that they can use at home to make it easier.

“The kneejerk reaction is often to dial 999 if there are difficult symptoms, but paramedics may be duty-bound to take someone to A&E which is often not the right place for someone who is at the end of their life,” she said.

Others are doing similar work. Susan Court, who works for terminal illness care charity Marie Curie, is running a lottery-funded pilot project in Wales providing “ante-mortem” sessions in which family carers referred by their GPs can get information and support to prepare for the death of a loved one: sessions cover anticipating grief and guilt, dealing with end-of-life symptoms such as loss of appetite and breathing changes, and practical matters such as coping with the sudden end to carers’ benefits after a loved one dies.

“Marie Curie nursing services tend to support people at the very end of their lives,” she said. “But feedback from carers is that there are many things they wish they’d known far earlier. This is very much about building carers’ confidence before any crisis.”

The government is also keen to get people thinking about the end of life. ItsAdvance Care Planning initiative, introduced nationwide in 2008, is similar to a birth plan – only it enables people to communicate their dying wishes rather than what they want for the birth. For example, one person might want to refuse treatment and to die at home with only close family nearby and the cat on the bed; another might want to go and watch Manchester United, have lots of visitors and die in a hospice.

It may sound morbid but US research suggests that making such wishes known may even help us live longer. And in a UK study of almost 1,000 patients in North Somerset, three-quarters of those who had completed advance care plans died in their preferred place, usually home. Just one in 10 died in hospital – significantly fewer than the national average of 50 per cent.

Lis Horwich (green) leading a Death Cafe session

Of course death, like birth, does not always go to plan. All the more reason, then, to make it part of common conversation, says Barbara Chalmers, founder of award-winning website finalfling.com. Here people can get help to get their affairs in order, write bucket lists, upload precious photos, tell their life stories and even plan their final farewells.

“We want to be to death what Mumsnet is to birth,” says Ms Chalmers, a communications consultant whose website gets 8,000 visitors a month. “This is going to be a massive movement within the next 10 years. “

Jon Underwood couldn’t agree more. He is the driving force behind the worldwide Death Cafemovement, which enables people to break the taboo around death over coffee and cake, in local cafes or community centres. Going to a “death café” may seem a world away from meeting your antenatal group for a coffee, but the principle is the same. Only, instead of grappling with the dilemmas of how to bring up baby, the group discusses the end of life – with similar amounts of laughter and tears.

This time last year only 100 cafes had been held worldwide since Mr Underwood co-founded the social franchise in 2011. As of this month the number has skyrocketed to more than 2,000 in 31 countries. Today’s older generation says Mr Underwood, want their lives to be “properly celebrated” as they near the end.

It seems the taboo that surrounds death is set to finally be breaking.

http://www.thebraintumourcharity.org/.

http://livingwelldyingwell.net/

https://www.finalfling.com/

www.deathcafe.com

Complete Article HERE!

California Judge Throws Out Lawsuit On Medically Assisted Suicide

By April Dembosky

Christy O’Donnell, who has advanced lung cancer, is one of several California patients suing for the right to get a doctor’s help with prescription medicine to end their own lives if and when they feel that’s necessary.

Three terminally ill patients lost a court battle in California Friday over whether they should have the right to request and take lethal medication to hasten their deaths.

San Diego Superior Court Judge Gregory Pollack said he would dismiss the case, adding that the issues were beyond his role as a judge to decide and should instead be put to the California state legislature or voters to establish new law.

Plaintiffs vowed to appeal the ruling.

“This is certainly frustrating, but it’s a temporary setback,” said Elizabeth Wallner, a plaintiff in the case, who has been diagnosed with Stage IV colon cancer. “I am optimistic that we’ll prevail in the end. It’s too big of an issue to leave uncovered.”

Wallner began a series of treatments for her cancer in 2011, including surgeries to remove her colon and parts of her liver, radiation, and numerous rounds of chemotherapy. In the midst of this, when her son was 16, she realized that she wanted to have control over her own death.

“I was throwing up in the bathroom and my son was taking care of me,” she said. “I looked over at his face and I saw him absolutely stricken, watching his mother experience this. I thought, that’s enough — my son doesn’t need to see this. I should have the right to make that decision when it’s time.”

The case she and others brought to the court seeks to challenge current California law (Section 401 of the state penal code), which makes it a crime to deliberately aid or advise another person to commit suicide. Wallner and the other patients say the law prohibits their doctors from discussing or prescribing medications that could end their lives; and that prohibition, they say, violates their rights to privacy, liberty, and free speech under the California Constitution.

Attorneys for the plaintiffs — the three patients and a physician — argue that the option to hasten death is an extension of previously recognized legal rights to make end-of-life decisions, including the right to refuse life-sustaining treatments, like a feeding tube or ventilator.

“When you’re suffering, and you know you’re going to die anyway, it should be up to you to decide when enough is enough,” said Kevin Diaz, an attorney and director of legal affairs for the advocacy group Compassion & Choices, which is representing the plaintiffs. “We’ll keep trying anyway we can to make sure this is an option.”

But California Attorney General Kamala Harris, one of the defendants in the case, argued that there is no right to assisted suicide embedded in California law. Health statutes that protect patients’ rights to withdraw treatment, Harris said, do not include a right to provide proactive assistance to end someone’s life.

“No court has ever extended the right to privacy to encompass an affirmative medical intervention to kill oneself,” Julie Trinh, deputy attorney general, wrote in a legal brief.

She wrote that while the court has sympathized in the past with the plight of the terminally ill, it concluded that the question of allowing physician-assisted suicide is a legislative matter, rather than a judicial one.

The judge in this case agreed. He said he would issue a formal ruling on Monday.

A bill that aims to legalize physician-assisted suicide in California (SB 128) has been tabled for the rest of the year, after stalling in the Assembly Health Committee. Several attempts in other states to pass a similar bill this year have failed.

The practice is legal in five states: The courts authorized the practice in Montana and New Mexico; Vermont passed a law in its legislature; and voters approved ballot measures in Washington and Oregon.

There is one other lawsuit pending in California.

The three patients who are plaintiffs in the case dismissed Friday are worried that the legal process will be too slow to provide relief for them. Christy O’Donnell, a single mother from Santa Clarita, Calif., who is dying from lung cancer, explains her situation in the video below, released earlier this year.

O’Donnell broke down in tears after Friday’s hearing. “I don’t have much time left to live,” she said. “These options are urgent for me.”
Complete Article HERE!

Grim Reaper Origin And History

The Grim Reaper or the “Angel of Death” is a conceptual entity that is depicted as pale skeletal figure in a long black cloak with a hood, and scythe in hand. Throughout the history of mankind, the concept of death as an omnipotent entity has had a significant impact on human psyche. This article throws some light on the origin and history of the Grim Reaper and the myths and stories associated with this psychopomp.

The Grim Reaper is a diabolically dark figure that has captured the imagination of many people around the world! Was he the answer that man found to his questions about the death and dying? This entity features in folklore and movies. The scythe that he wields symbolizes the weapon of the harvester or keeper of souls. It is believe that this entity escorts souls of the deceased to the unknown territory of life after death. While some believe that he arrives on an old coach drawn by white horses, others believe he arrives on a single horse, without any coaches. His skeletal face bears a grim expression that successfully haunts a number of people, instilling the never-ending fear of death and departure.

Many religions believe a particular spirit or deity is responsible to look after the souls after the death of a person. The Grim Reaper is considered this psychopomp who performs his duties of carrying souls of the dead to the world of the nonliving. In ancient Greek mythology, Charon was such an entity, who carried the souls of the recently deceased in a ferry across the river that separated the world of the living from the dead. Similarly, there are different mythological and religious entities that come from different cultures and beliefs from all over the globe, that somehow link with the origin of the personification of death in the form of the Grim Reaper.

Legend of the Grim Reaper: Folklore, Myths, and Beliefs

Although there are different accounts of the manifestation of death, the Grim Reaper has become a conceptual personification of death the world over. The presence of this nightmarish entity has captured the imagination of storytellers, writers and artists. The following sections will brief you about some notable instances or entities in history, that will help understand the story behind the emergence of the Grim Reaper.

The Fourth Horseman of the Apocalypse

four-horsemen-of-the-apocalypse
Four Horsemen of the Apocalypse by Albrecht Dürer

As mentioned earlier, Death is identified as the fourth horseman of which the Bible says in the Book of Revelation (6:1-8). The following excerpt has been taken from the English Standard Version.

When he opened the fourth seal, I heard the voice of the fourth living creature say, “Come!” And I looked, and behold, a pale horse! And its rider’s name was Death, and Hades followed him. And they were given authority over a fourth of the earth, to kill with sword and with famine and with pestilence and by wild beasts of the earth.

Although the scripture doesn’t call death, “the Grim Reaper”, nor does it say about it wearing a black-hooded cloak holding scythe, it does act as a link to the depiction of the Grim Reaper riding a pale horse. If you carefully observe the image on the right, you would see the fourth horseman on the extreme left, riding a pale and skinny horse, and is himself quite the same, giving an almost skeleton-like look. However, as mentioned earlier, various artists have depicted this horseman in a skeleton figure, some of them include, John Haynes after John Hamilton Mortimer in his 1784 painting “Death on a Pale Horse”, and Victor Vasnetsov in his 1887 painting, “Four Horsemen of Apocalypse”.

In Mythology and Folklore

ankou
Ankou

Ankou
Figure of Death in Breton Mythology
The ultimate symbolism of the Grim Reaper is death. In Greek mythology, Thanatos is the deity associated with death, who was the twin brother of Hypnos, the god of sleep. The portrayal of Thanatos isn’t scary and intimidating. He is depicted as a pleasant-looking young man with wings and a sword. This simply shows that the Greeks did not see death as something horrific, but accepted it as a part of life.

In Breton mythology, and Cornish and Norman French folklore, death was personified as Ankou. His depiction is quite similar to that of the image of the Grim Reaper today. He is believed to appear as a man or a skeleton who wears a black cloak and wields a scythe. Alternately, some legends also state him to be like a shadow that seems to be of an old man wearing a hat. Legend has it that four black horses pulled his cart which helped him carry the souls of the deceased.

It is believed by some that the Grim Reaper has originated from the legend of Ankou. However, there are others that claim this notion to be untrue, considering that the Grim Reaper is a somewhat recent depiction of death, as explained in the next section.

The Black Death

grim-reaper-cholera-pandemic
French newspaper Le Petit Journal. Front page on December 1st, 1912.

Although life and death are the inseparable and inevitable part of this world’s existence, it was not always that death was personified as a scythe-bearer who wears a hooded cloak and carries souls to the afterlife. If we browse through the medieval history and the events that took place in it, it can be concluded that a lot about the figure of death as a skeleton can be linked with the massive deaths that occurred between the late fourteenth to early fifteenth century―infamously known as The Black Death. The plague came in various forms in different cities, wiping out a significant percent of the population. Because of the plague being highly contagious, priests refused to perform last rites, resulting in unburied death bodies. Considering the frightening environment, where everyone feared being affected with this pandemic, it was only natural for people to view death as a skeletal figure, as the amount of corpses in the vicinity were overwhelming.

This pandemic was named ‘Black Death’ because the victims were covered in mysterious black boils that oozed blood and puss. Also, the skin of the victim became black and gangrenous. Black is also the color that is worn in funerals and deaths. Hence, was natural for the artists of that era to see death coming in the color black. While initially, tools such as crossbow, ax, or dart was shown as death’s weapon, gradually it was replaced with a scythe, and many artists portrayed death, or the Grim Reaper, using this tool to mow souls. This is shown in the image on the right, where the Grim Reaper is shown mowing the souls of people who died due to cholera during the Balkan War. These pandemics in different forms depict that the taker of souls comes in different times, through different means, to take its assignment to deliver souls to their rightful place, at the right time.

The Gender of the Grim Reaper

There has been an ongoing debate of the Grim Reaper being a male or a female. First off, being a symbol of the grim reaper as a womandeath, it is unlikely for it to have a gender. While mostly, this psychopomp is depicted as a male, there have been legends associated with death being a female. For instance, in Poland, death is a female word Śmierć and is believed to be an old skeletal woman, whose appearance is quite similar to that of the traditional Grim Reaper. However, death wears a white robe, not black.

Also, in Scandinavian mythology, death is considered to be an old and ugly woman, who especially came into the picture during the Black Plague. It is said that this old lady came with either a broom or a rake and wore a black robe. The days she brought a broom, all would die in the area, while some would escape death when she carried a rake. A similar belief was prevalent in Lithuanian mythology, where death was called Giltinė who was an old, ugly woman with a long blue nose and a poisonous tongue. In both regions, this depiction of death, later evolved as the Grim Reaper wearing a black robe and holding a scythe.

Well, the whole concept of “Life After Death” is well beyond the realm of physical world, and no one has ever ventured back to tell us whether there is such an entity as the Grim Reaper in reality or not, and the fact if this entity is a male or a female! While some people consider it to be nothing more than a myth, a scary fictional character perhaps, the concept of Grim Reaper is a chilling reminder, and teaches us that the death is a reality that we all must face, and that it might just say hello when we expect it the least.
Complete Article HERE!

Life Is But A Dream – 07/21/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.