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

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

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

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

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

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

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

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

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

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

“It is always very, very individual.

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Festival of dying: is your ‘death literacy’ lacking?

Lying in a satin-lined coffin or wearing a bondage hood may help you face up to your inevitable demise

 

The Sydney Festival of Death and Dying aimed to spark conversations about mortality.
The Sydney Festival of Death and Dying aimed to spark conversations about mortality.

By

[N]othing could evoke more gut-wrenching melancholy than Syrian musician Adnan Baraké playing the oud in a dimly lit boat shed at a festival of death. At least, that’s what I’m thinking right up until the moment a foghorn bellows ominously from some distant ocean liner, swamping us entirely in a sombre aura of doom.

It’s the opening ceremony at the inaugural Sydney Festival of Death and Dying – and it’s only going to get more macabre.

Held this past weekend, the festival was billed as three days of workshops, lectures, and performances that “do justice to the full spectrum of what is at stake in mortality”. Presented by Dr Peter Banki, he has compiled a line-up of peers such as anti-death-phobia advocate Stephen Jenkinson, designer of posthumous fashion Pia Interlandi, and president of Dying with Dignity NSW, Dr Sarah Edelman.

Together, they aim to illuminate all angles of death and dying: living with grief, dying at home, the afterlife, visions, suicide, and voluntary assisted dying, among others.

Nobody close to me has died, and my “death literacy” is lacking – I have a lot to gain from a weekend like this. In curatorial advisor Victoria Spence’s terms, I’m here to “build muscles in relation to mortality”.

Death is and perhaps always will be taboo, but it’s something we need a lot of help preparing for. Before we become a parent, we have months to get ready: we read books, we go to classes, we shop, we see a counsellor. When someone dies though, it’s often unexpected – but there are ways we can make the process easier, and they usually begin with a conversation. Or in this case, a festival.

Victoria Spence is a civil celebrant, consultant and former thespian. She begins her session – Developing Your Mortality Muscle – by explaining her objectives: to help us be aware of, and understand, our physiological responses to loss.

Death may cause us to fight, flee, freeze or submit, she says, but one response is pretty much guaranteed: shock. We react to death by abruptly drawing in breath; and in the rituals that surround death, we metaphorically hold it in. But if we’re prepared, if we learn to breathe, we can be properly present.

“When somebody dies, you put the kettle on,” she says. “That’s how you be with your dead.”

Having physical proximity with the deceased – being privy to their new smells, witnessing physical changes – activates a physiological response, changing the way we view our dead and encouraging the grieving process.

The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.
The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.

Victoria says being physically intimate with death can be crucial: bathing your dead person, or clothing them. Another way to be intimate is through language. We sit in groups to exercise our vocabulary of condolence: “I’m sorry”, “You’ll get through this”, “You will heal in time” – my phrases seem to avoid the moment, while others engage with it: “How does her death make you feel?”

Next we’re given the chance to get up close and personal with the accoutrements of death. I slink into a satin-lined coffin, and as the lid is repositioned I imagine the sound of dirt raining down on me. This experience builds no bridge to death, the same way being wrapped in toilet paper for Halloween brings me no closer to the experience of mummification. But it does make me wonder about alternative burial rites.

In another session, Dr Sebastian Job creates a simulation where participants “face the worst” ahead of time. By inflating a balloon until it bursts we experience a symbolic death, he says, allowing us the opportunity to process death anxiety and life regret. He hopes this jolts us from social paralysis into affirmative action.

Have you ever thought about what song you want played at your deathbed? Peter Roberts is a music thanatologist; he plays music for people who are at the end of their life. In this session he discusses how music can help dying people to let go – and several have during his service.

Tempo tempers breathing, and tone and timbre can quell fear, he explains; his use of vowel sounds, not words, can offer uncomplicated companionship, and provide the dying an opportunity to abandon their pain-riddled bodies and follow with their mind, travelling peacefully with the harp’s melody.

 


 
Palliative care physician Dr Michael Barbato has devoted a significant part of his life to the exploration of dreams and visions at the end of life. He believes that we overlook the mystic elements of death and dying simply because they appear too “fringy”.

He quotes a study that found up to 50% of respondents believed their dying loved one was experiencing unusual visions. The study quoted was his own – the Palliative Medical Journal refused to publish it because, he says, it was too fringy. His talk is entertaining and peppered with emotive stories, but it lacks the scientific substance I require to get into the moment.

Dr Peter Banki, the festival director, believes proximity to death can make us feel alive. He says we often use words such as pain, fear and submission when describing death. One of his workshops, Thresholds and Lust, is an intersection of both his festivals – this Festival of Death and Dying, and his prior Festival of Really Good Sex. It is designed to playfully evoke death-related emotions from willing participants.

A bondage hood is placed on my head, suffocating my senses. My partner manipulates my head and body, she runs her hands over my arms and head (submission). I can’t help but wonder what everyone else around me is doing – are they watching (fear)? The heat bakes my gimp head like a potato jacket, while my body is uncomfortably contorted on the pungent floorboards (pain). I tap out.

I’m not yet ready to yield to the vagaries of dying, whether real or imagined, by the festival’s end – but I do notice I’ve begun cultivating a relationship with death that I’m thankful for. Perhaps more importantly, I’ve also observed friendships forming, information exchanged, and future plans being made – the festival of death has facilitated the birth of a community. We are all dying, after all.

Complete Article HERE!

British death exhibition has skeletons, mummies and even fantasy coffins

BY TIM CHESTER

crow
Crows have long been shrouded in superstition and associated with death.

Aside from taxes, there’s nothing more certain in life than death. Daniel Defoe knew that. As did Benjamin Franklin. Many are keen to avoid the subject, though.

A new exhibition in Bristol is hoping to change that, attempting to de-stigmatise the issue and encourage more discussion around death and dying.

Death: The Human Experience, which was two years in the making, draws together some 200 items from across the world to show how different nations have lived with life’s great inevitability for centuries.

Coffins, mummies, mourning clothes and grave goods are among the artefacts on display at the Bristol Museum and Art Gallery.

The exhibit explores the science, ethics, attitude and process of death, and features examples of Mexico’s Day of the Dead celebrations (which feature in the new James Bond film’s opening scene) as well as Victorian Britain’s mourning rituals. Mortuary tables and fantasy coffins are also included, with some exhibits behind doors allowing visitors to choose if they see them.

A mortuary table from the former Bristol General Hospital which was used until the 1960s.
A mortuary table from the former Bristol General Hospital which was used until the 1960s.

An installation entitled Death: Is It Your Right To Choose? provokes debate around end of life choices at a time when euthanasia is undergoing scrutiny in the UK.

“Around the world, different cultures have expressed their relationship with death in a myriad of fashions, from the visual Mexican Day of the Dead to the audible lament of the Australian Aboriginal death wail,” city councillor and assistant mayor for culture Simon Cook said.

“Yet in recent times we have seen a reluctance to engage with the subject, something I hope this exhibition will help to change. Death: The Human Experience will provide visitors with an opportunity to encounter the death practices and beliefs of many world cultures whilst also being encouraged to reflect upon their own thoughts on death and the dead.”

The exhibition has already been a hit in Bristol, with thousands pouring through the doors. Here are a few of the items on display.

 

Ghanain-fantasy-coffin-1
A Ghanian fantasy coffin is featured in the exhibition.

 

Figure-in-the-form-of-a-stylised-european-ship-figurehead-%25c2%25a9-bristol-culture
A figure in the form of a stylised European ship figurehead.

 

Skeleton-%25c2%25a9-bristol-culture
Skeletons, mummies and coffins feature in the exhibit.

 

The show took two years to put together and features 200 exhibits.

 

The exhibit explores the science, ethics, attitude and process of death.

 

Visitors can choose what to pay and the show is designed to be seen in a lunch hour.

 

Some of the exhibits are behind mortuary style doors, allowing the visitor to choose if they see them.

 

“Death: The Human Experience” runs until March 13.

Complete Article HERE!

Join Me on The Death Chicks Crowdcast Show

I’m going to be a guest on The Death Chicks Show!

09/10/15, Noon Pacific and 3pm Eastern

(Does that make me a death dude?  I’ll have to ask them.)

 
 
Who here is an expert in ACTUALLY dying???

Have you done it?

To achieve expert status, one usually has to be proficient in something or have done something over and over again.  Hmmm… kind of tough with the death thing”, eh?.  Even those who have had near death experiences are still amateurs in a way– because they’re back!  They didn’t do it right the first time! 😉

This is why we LOVE the title of this book and the work that Richard Wagner, PhD has been doing for the last 30 years.  Since we are all amateurs at “the death thing”, there is actually a road map for those who are dying and will be dying.  Is that you?

ABOUT OUR GUEST
Richard Wagner, Ph.D. is a psychotherapist/sex therapist in private practice in Seattle, WA, 1981 to present.  He has AGDD_front coverover 30 years of experience working with terminally ill, chronically ill, elder, and dying people in hospital, hospice, and home settings.  He facilitates support groups for care-providers as well as healing and helping professionals.  He provides grief counseling for survivors both individually and in groups settings. He is the Founder of PARADIGM/Enhancing Life Near Death, a cutting edge, health related nonprofit organization.

Dr. Wagner was awarded the prestigious University of California, San Francisco Chancellor’s Award for Public Service in 1999 for this very work.

He is also the author of Longfellow And The Deep Hidden Woods, a critically acclaimed children’s book that touches upon the topics of death and bereavement.

Dr. Wagner was born in Chicago and grew up in Niles, Illinois, a Northwest suburb. He left home to attend the seminary after high school and graduated from Oblate College in Washington, DC in 1972. He moved to Oakland, California in 1972 and studied at The Jesuit School of Theology (part of the Graduate Theological Union) in Berkeley.  He was ordained as a priest in November, 1975 and obtained his Ph.D. in 1981. Dr. Wagner lived in Oakland until 1978 and moved to San Francisco until 1999.  He then relocated to Seattle, Washington where he lives today.

Richard can be reached at http://theamateursguide.com

ABOUT YOUR HOSTS
+The Death Chicks   show was created to shine light on the tabooed topics of death, dying, grief, and loss.  We’re listening to all perspectives and having the conversations that we as human beings who live and die on this earth, need to have, without fear of judgement.

+Patty Burgess Brecht   is the President of Possibility for Doing Death Differently and Teaching Transitions.  She is an End-of-Life Educator and Certified Grief Recovery Specialist.  She is the developer of the End of Life Specialist Training and Certification (CEOLS), and teaches individuals and organizations how to Do Death Differently by not being overwhelmed or afraid of death, but to seek and experience the joy, the passion, and the even the exhilaration inherent in the honor of BEing with the dying.  Her video-based, online, inspiring course is used in hospices, hospitals, home care, colleges and universities across the country and is now open to individuals who are drawn to this work.

www.doingdeathdifferently.com – for Individuals
www.teachingtransitions.com – Hospices and Colleges/Universities

+Myste Lyn  is an Empowerment Coach who specializes in supporting women recovering from loss.  Myste is an intuitive healer who reconnects women with their inner place of peace.  She specializes in reducing fears, alleviating guilt, and creating inner confidence.  http://www.bittersweetblessing.com/

Join  on Thursdays Noon Pacific and 3pm Eastern.

As we like to say NO ONE is getting out of this gig alive!   So we may as well talk about, learn about it, plan for it, lean into it, and feel comfortable with it when it is our time or the time of our loved ones.

Please share and help us get the word out!

Can you think of someone:

  • who is facing their own death and might be comforted by a roadmap
  • who is burdened by very heavy feelings, and could use some help re-entering life after a death?

If you do, please pass this invitation on (or after the fact, recording…).

You never know when a suggestion out of the blue from YOU, can give another a reason to go on.  This could make a true difference for another. And there are people, only a mouse click away to with whom to connect and share.

A GREAT NEW WAY TO WAY TO WATCH THE SHOW:
The new crowdcast app lets you watch the show from Facebook, Twitter, or simply sign in via email, and of course you can always watch it from this page or YouTube.  For those not on Google plus, they can watch it from where ever they are happiest!  Find your happy place here:
https://www.crowdcast.io/e/mystelyn(new)6

See you there!

 

CLICK ON THE LINK BELOW:

The Amateurs Guide to Death and Dying: A Truly Aventurous Way to Explore Your Mortality

 

Thu, September 10, Noon Pacific and 3pm Eastern

Hangouts On Air – Broadcast for free

A comprehensive resource for people living with disabilities

I thought I’d take a moment and share with you a resource that has come my way.

This guide aims to help make the federal grants available to seniors, veterans, and disabled people much easier to understand and take advantage of, particularly for remodeling homes for accessibility.

Click on the image below to access the guide

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The reasoning behind Expertise.com is to help people make truly better decisions by clearly laying out their options, with content written by industry experts. Because of their non-biased approach, they’ve been a trusted source for government entities and organizations throughout the US. Many publications and businesses already use our guides as resources for their readers.

So give it a look-see.  I think you’ll be impressed.

Death Education

The term death education refers to a variety of educational activities and experiences related to death and embraces such core topics as meanings and attitudes toward death, processes of dying and bereavement, and care for people affected by death. Death education, also called education about death, dying, and bereavement, is based on the belief that death-denying, death-defying, and death-avoiding attitudes and practices in American culture can be transformed, and assumes that individuals and institutions will be better able to deal with death-related practices as a result of educational efforts.

There are two major reasons for providing death education. First, death education is critical for preparing professionals to advance the field and accomplish its purposes. Second, it provides the general public with basic knowledge and wisdom developed in the field. The overarching aims of death education are to promote the quality of life and living for oneself and others, and to assist in creating and maintaining the conditions to bring this about. This is accomplished through new or expanded knowledge and changes in attitudes and behavior.

Death education varies in specific goals, formats, duration, intensity, and characteristics of participants. It can be formal or informal. Formal death education can involve highly structured academic programs of study and clinical experience. It can be organized into courses, modules, or units taught independently or incorporated into larger curricular entities. It can be offered at the elementary, middle, and high school levels, in postsecondary education, as professional preparation, and as short-term seminars or workshops for continuing professional and public education. Informal death education occurs when occasions arising in the home, at school, and in other social settings are recognized and used as “teachable moments.” In the home, the birth of a sibling or the death of a pet may naturally lead to interactions that answer a child’s questions about death. At school, a student’s sudden death may trigger educational follow-up, in addition to crisis counseling.

Two distinct methodological approaches to structured death education are the didactic and the experiential. The didactic approach (involving, for example, lectures and audiovisual presentations) is meant to improve knowledge. The experiential approach is used to actively involve participants by evoking feelings and thereby permitting death-related attitudes to be modified. This approach includes personal sharing of experiences in group discussion, role-playing, and a variety of other simulation exercises, and requires an atmosphere of mutual trust. Most educators use a combination of the two approaches.

Death education can be traced back to the death awareness movement, which unofficially began with Herman Feifel’s book, The Meaning of Death (1959). He and other scholars noted that the subject of death had become “taboo” in the twentieth century and challenged individuals to acknowledge their personal mortality, suggesting that to do so is essential for a meaningful life. Feifel pioneered the scientific study of attitudes toward death and pointed to the multidisciplinary nature of the field. At about the same time other pioneers focused on more specific issues concerning dying persons and their care and the experience of grief.

Complete Article HERE!