Die-alogue Cafe

She is an award-winning Australian writer, who spent the last years of her life fascinated with her own mortality. This has resulted in her writing a memoir that she hopes will trigger more open and honest conversations about death. In her last weeks, she shared some of her insights in a bedside interview with Richard Fidler. To read more and listen to the audio follow this link:  http://www.abc.net.au/radionational/programs/conversations/dying-for-beginners-cory-taylor-on-facing-death-with-honesty/7549798?section=health Continue reading →

Call it bias, distortion, omission, denial, constraints of time, blind spots.  What do we call it when during the telling of a story there is little or no reference made to the facts? Resulting in the fact that the story is at best incomplete and at worst a fabrication? For reasons best known to the storytellers, they choose to withhold information that would not only throw new light on the subject, but most probably dramatically change ones perspective.

This is especially true when our commentary of how Australia was settled omits, chooses to ignore or acknowledge our indigenous brothers and sisters who were here long before us folks of European decent.

Bruce Pascoe in Too upsetting (The Monthly July 2016 page 40) tells about his six hour World Heritage Cruise “… out of the west Tasmanian town of Strahan, across Macquarie Harbour and along the Gordon River. The tour commentary is constant, about Bob Hawke and Bob Brown’s fight to save the Franklin river from the hydro-electricity engineers, about the high quality of the salmon produced in the local fish farms (and their owners fortunes) …. The prisoners and guards at the Sarah Island convict settlement … 3000-year-old Huon pines and how two men could cut down 1000 of these trees each year …. But not once are the words ‘Aboriginal’ or ‘indigenous’ mentioned.”

“Evidence of indigenous Tasmanians has been found up and down the island’s west coast.  There are the whalebone house constructions, their cooking ovens …. The whale etchings older than any other art in the world apart from that of mainland Australia …  and yet they are of no interest” in the cruise commentary.  Bruce Pascoe goes on to write: “I scour Stahan’s information centre, a vast barn of Huon pine memorabilia and nightly re-enactments, but find no mention of whale petroglyphs there either.  Nor on Bruny Island, south of Hobart, where I had gone to look for the whale songline.”  “Perhaps most Australians prefer not to know.”   And he concludes: “There’s only so much history that can be revealed in six hours.”

This leads us to a second story where we have evidence of bias, omissions, denial and blind spots also prevailing.

Galarrawuy Yunupingu in Rom Watangu: The law of the land (The Monthly July 2016 pages 18-29) writes: “Our song cycles have the greatest importance in the lives of our people. They guide and inform our lives.  A song cycle tells a person’s life: It relates to the past, to the present and to the future”

“It is through the song cycles that we acknowledge our allegiance to the land, to our laws, to our life, to our ancestors and to each other.”

He writes: “I have lived my song cycle and I have done what I can to translate the concepts of the Yolngu world into the reality of my life.  I have endured much change and seen many different faces – I have watched both Aboriginal and non-Aboriginal leaders move in and out. And of course I have mixed feelings when I reflect on my life’s work.  I feel deep sadness at times …. “

He tells the story of his father-in-law Wonggu who was an elder in their community. “Just to be in Wonggu’s presence was a great honour.”

Then one morning: “I heard the news that Wonggu had passed away. I went to his camp where my sister was, and there the body lay on a stretcher covered with a white sheet. Wonggu was peaceful but we were all in shock at the death of the great man. Preparations were made, and  I watched quietly as the Djapu men sang to the spirit world. I sat motionless as my brother-in-law, with great love, removed the shirt from his father’s body. Murtitjpuy took his delicate human-hair brush and his ochres, and began to paint his father’s body. I remember the painting as the most beautiful I have ever seen. Murtitjpuy was so focused. He was in his own world, delicately working with the brush. He said no words to explain, but the painting spoke of power and authority. The work covered all of Wonggu’s upper body including his face, which was most carefully done. His hair was decorated with white clay, and his authority and greatness were obvious for all to see.

Four Djapu men then came to the body. With great respect they rewrapped it, making a shroud, and placed it on a stretcher of stringybark. With sacred words they sang a special ceremony, a song cycle of the Djapu people, and raised the great man above their heads, carrying him to his final resting place. The men and women of the Yolngu world came and lined the beach, and Wonggu’s sons carried him on high, in a procession of dignified authority. And then the tears broke: men and women, including my father, were crying and lamenting the passing, throwing themselves about and calling out in respect of this man. At the grave we were directed in the shark dance, the sacred totem of the Djapu.”

That’s how it was, but not any more.  We, by our bias, distortion, constraints of time, have imposed on indigenous societies a foreign and contrived way of farewelling their loved ones who have died.

Says Yunupingu: “Today when a man dies he is taken by the police or a coroner and he is made cold and sterile. Too often he dies violently or suddenly, surrounded by tokens of the Western world, not the Yolngu world. Tokens that have drawn him to his peril. The family loses the deceased and the deceased loses the family. He goes into a coffin, nailed in, screwed down, without love and without respect. Then he is returned in that way to the family for burial.  It is a different world today from what it was then. It will be a different world tomorrow from what it is today.”

Government agencies and the funeral industry have decided that they know best.

When we report on how different cultures practice their traditions and beliefs, we must include stories of relevance to Aboriginal people. It is time that indigenous people be made aware of how Wonggu’s life was honoured and respected in death as it was in life; that they to can be farewelled in the same way- with the same dignity and respect; with the story cycles being passed on to the next generation; without outside forces imposing their paternalistic methods and their costly merchandise.

We are told it is too hard, too daunting, too upsetting, beyond our ability, outside our understanding – every excuse in the book, but not the truth.  The truth is this – we do not need to outsource this most personal and precious of times to strangers who have an agenda most probably at odds with the storyline of our ancestors and dearly departed.

A natural burial ground in northern New South Wales is being proposed by a small group of people with a new to offering earth burials.  Under the headline: Banded Bee farm could host natural burial ground in Armidale reporter Meg Francis (Newcastle Herald, 5 August 2016) tells the story of Jane Pickard, owner of Banded Bee farm, 12 kilometres north-west of Armidale, who has put her hand up to offer two of 16 hectares of her property to be the site for the burial ground.

“Earth funerals” will offer people the opportunity to be buried on the site in a biodegradable coffin or shroud and without being treated by preserving chemicals such as embalming fluids.

‘The permaculturalist said a bush burial offered people a positive sustainable impact even after death by being ‘recycled’ into the land.’  “For me the idea that we make bodies toxic and then put them somewhere that will never grow anything is completely ridiculous,” Pickard says.  Read the full story at: http://www.theherald.com.au/story/4073544/earth-burial-trend/

For a similar story with audio by Jane Pickard and Kevin Hartley, log onto ABC radio news: Composting humans: plans for natural burial ground near Armidale NSW at: http://www.abc.net.au/news/2016-06-09/farm-funerals-natural-burial-ground/7493802

The Federal Indigenous Affairs Minister Nigel Scullion has backed calls for cemetery fees to be re-examined.

“My view is that the council should be looking very carefully at ensuring that people can afford to do something that everybody would see fundamentally as a right – to be able to bury your own with some dignity,” he said.

In a report by ABC journalist Alice Matthews: Calls for graveyard fees to be dropped for struggling Aboriginal families (Monday 25 July 2016) we learn that Wally Stewart from Dream Time Funerals is doing his best to help his people provide affordable farewells for family members who have died.

Mr Stewart said the Dream Time Funerals model could be effective across the state.

“We could teach people how to do that funeral…[and] then we could relieve all the burdens and they would have their own service,” he said.  “If you really want to talk about reconciliation and closing the gap, this is a high need not only [on the south coast], but in a lot of areas,” he said.

“Why should we be paying to be buried in our own land anyway? We’ve been fighting land rights forever and the only land rights we seem to end up with is a six-foot grave.”

To read the full story with pictures and a video, go to: http://www.abc.net.au/news/2016-07-24/aboriginal-burials-funerals-fees-scrapped/7577638

“Hardly a day goes by when I don’t look at someone on a life-support machine and think, ‘Don’t ever let this happen to me.’”

According to Ken Hillman, professor of Intensive Care at the University of NSW, this is one more good reason Why you need to talk about death today  (Emma Reynolds, news.com.au May 25, 2016).

“Be honest about what medicine can do and can’t do,” he says.

Intensive care beds are filling up with patients near the end of life.  At a cost of $4,000 per person per day, it is clearly unsustainable.  Not only financially, but also socially.  The quality of life is not there.

In a previous article: Dying Safely (Oxford Journals 13 August 2010 339-340), Ken Hillman writes that patients who are “ … seriously ill but dying in a predictable and inevitable way, where further active intervention would be futile,” could benefit from what is known as rapid response systems (RRSs).  Having said that he has identified that: “Unfortunately many patients are still inappropriately admitted to the ICU (Intensive Care Unit) for end-of-life care at great cost and the problem will only increase as our society ages.”

In yet another story, this time: When the end is nigh, it’s best to avoid hospital (SMH 31.10.2009) professor Hillman says: “My grandfather died at home in 1959, managed by a wonderful GP. Most of my friends’ grandfathers died at home.”

But then medicine got in the way: “The health system is geared to actively treating patients, not in recognizing the dying,” he says.

“Once death was treated as a relatively normal and inevitable experience.  It is now a highly medicalised ritual.”

The crux of the situation we are faced with is contained in this few lines:

“It is difficult to get off this conveyor belt. The reasons why are many and complex. Unreal expectations of what modern medicine can offer, reinforced by everyday stories of the latest medical miracle; the inability of politicians and funding bodies to rationally limit resources for end-of-life care without accusations of neglect or even murder; the difficulty of progressing this discussion in a society with such diverse opinions; the increasing specialisation of medicine; the practical fact that it is easier for busy clinicians to continue active treatment than to undertake the difficult and time-consuming business of talking to relatives and patients about dying.”

Vital Signs, by Ken Hillman, is a collection of stories about the experiences of intensive care patients, their families and carers. It is about ordinary people facing terrible tragedies and the ways they cope with them. Up to 70% of people now die in acute hospitals surrounded by well-meaning strangers inflicting all that medicine has to offer.  There are others ways.  This book helps clarify our thinking as we search for the way that is right for us. See if a copy is at your local library.

In an appearance on TEDxSydney 2016 Ken Hillman talks about his experiences and how we might get beyond our death denying society to a point where doctors, families and the community work together to find a solution that offers both quality of life and a safe way to die.  Go to https://tedxsydney.com/talk/were-doing-dying-all-wrong-ken-hillman/  or the TEDxSydney mobile app.

Here we are at the start of a new financial year, so let’s take a look at a story by ABC News reporter James Bullen: High number of terminal patients unnecessarily treated, study finds (Wed 29 Jun 2016).  Unnecessary treatment is costly socially and financially.

In an analysis of 38 studies of end-of-life care, published in the International Journal for Quality in Healthcare, “a significant number of patients received treatments that were of no benefit to them.  These included chemotherapy, radiotherapy and CPR, when a person had a not-for-resuscitation order.”

As a result of these revelations, doctors have called for the public to discuss end of life care with their loved ones so as to minimise “unnecessary treatment in the last six months of their lives.”

Lead author Dr Magnolia Cardona-Morrell, a senior research fellow at the University of New South Wales, found some non-beneficial treatments prevented patients from having a comfortable death.

The analysis found one in three elderly patients with an advanced or irreversible condition were treated with chemotherapy in their last six weeks of life, while one in four of those with not-for-resuscitation orders received CPR.

It found families pressured doctors to do everything possible for a patient, and the tension for doctors between saving lives and letting a patient die with dignity, were contributing factors.

“A lack of dialogue between doctors and families prior to a person progressing to an advanced stage of illness contributed to negative outcomes, “ says Dr Magnolia Cardona-Morrell, who went on to say: “people should talk about their end of life care options before they became terminally ill.”

“I would propose that the public start the conversation with their relatives and their GP as soon as possible.”

The full story is at: http://www.abc.net.au/news/2016-06-28/discuss-end-of-life-care-researchers-amid-unnecessary-treatment/7548092

A desire to die at home can only be achieved if all of our ducks are lined up and everything goes according to plan. Dr Christine Sanderson, Staff Specialist, Neringah Community Palliative Care Service, NSW shares her experiences with how this can happen in this story: ’In my own bed’: Managing dying patients at home. (CARESEARCH, 24 Nov. 2015)

‘Staying at home’ is a bit of a mantra for palliative care. When time is precious, home and family beckon as a place of safety and comfort, where a person can completely be themselves.  The challenge is how to get general practitioners and palliative care services working in harmony to bring it off and allow the dying to achieve their final wishes.

This is not the kind of thing that can be done on the spur of the moment.  Just as an Advance Health Care Plan and an Advance Death Care Plan need careful consideration, so to does juggling the various requirements to get a good death at home.  According to Dr Sanderson there are a six factors needing our attention that will mean families are well prepared “and less likely to default to hospital in a crisis.” The ultimate objective is “to be at home safely, comfortably, and appropriately.”  Extracts from the six points follow:

• The patient needs to understand their prognosis and also be aware that they have some choices about how to use their remaining time.
• They need support to navigate the system and make each decision as it arises.
• They need support at home. Many patients understand that they will die but aren’t really fully aware of the dying process; that for at least some of that time they will need care, a lot of care and won’t be able to answer the door or the phone, get to an appointment, or be on their own at home.
• They need a realistic plan for crises and a viable Plan B for what to do if they can no longer be safe or comfortable at home.
• They need proactive symptom management. This includes crisis medications that can be given parenterally – to be available well ahead of time, as deterioration can happen very fast; aids and equipment for safety and comfort. Basically, the family are providing the alternative to hospital, and this is a completely new experience in most cases. Their need for knowledge, new skills, and reassurance is enormous.
• There are limits to the services that can be provided, and families will have to carry the rest of the load.. Family care is essential if a person is going to be able to stay at home, and die at home

Read the full story at:  http://www.caresearch.com.au/caresearch/TabId/3781/ArtMID/6000/ArticleID/7/In-my-own-bed-Managing-dying-patients-at-home.aspx

As consumers become more comfortable with taking charge of their dead, there will be more room to introduce new methods of body disposition, writes Jennifer Luxton in a story published in Yes Magazine (What’s a Death Midwife? Inside the Alternative Death Care Movement, 3rd Sept 2015).

“Keep the body at home after the person dies,” says Char Barrett, a Seattle-based funeral director and certified ‘death midwife.’ “For families who want it, they should have the right to do it.”

For the majority of human history, families handled arrangements for the deceased, from the time immediately after death, to burial or cremation. Until the advent of modern hospitals and health care at the turn of the last century, it was the norm for the old and sick to die at home surrounded by loved ones, says Luxton.

“A funeral director is a wedding planner on a compressed time scale,” says Jeff Jorgenson, owner of Elemental Cremation and Burial.. “With the exception of the legality of filing a death certificate, a funeral director does the exact same things a wedding planner does: They make sure that the venue is available, that the flowers are ordered, the chaplain is there for the service, and that the guest of honor, be it the bride or the dead person, is there on time.”  The business prides itself in being Seattle’s ‘only green funeral home.’

This is one fascinating story and well worth reading in full.  Find it at:  http://www.yesmagazine.org/inside-the-alternative-death-care-movement-20150807

The conventional wisdom within the bereavement community for many, many years has been that our grief follows a pattern and goes through stages.  On Death and Dying by Elizabeth Kubler-Ross, has been held up as the go-to reference for anyone seeking an understanding on this time in our lives.  In recent years this has been challenged to a greater or lesser extent.  Today we highlight two authors who contend that we need to revisit the five (5) stages and perhaps recognise that there is a great deal of diversity in the ways we grieve contingent on: age, background, beliefs, culture, gender, social networks and so on.  It is not a one size fits all explanation.

The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss, by George A. Bonanno, Basic Books, 2009 opens up the field.   Bonanno shares his research into the experiences of ordinary people who have lost a loved one, revealing how their personal journeys through the grief process differ remarkably from what most self-help books and the professional literature on grief describe.

Bonanno covers the traditional response to grief in Western culture, how grief many times is overcome with enlightened levity, the importance of resilience after losing a loved one, the importance of memories in the grief process, the strength that develops after overcoming a loss, and the importance of beliefs in various myths about the afterlife.   For more see: http://www.nytimes.com/2009/12/29/health/29book.html?_r=0

The Truth About Grief: The Myth of Its Five Stages, by Ruth Davis Konigsberg, Simon & Schuster, 2011 expands on this research.  “Perhaps just the knowledge that our survival instinct is strong, and that a great many have not only endured terrible losses but have also thrived, can be a source of hope, something that I found to be quite scarce in our grief culture,” says Konigsberg (p. 197)

In a review by Julie Beischel, PhD Director of Research, Windbridge Institute, LLC she writes that Konigsberg really opened my eyes to numerous aspects of this topic including: the bereavement and grief counseling “industries,” grief memoirs, the grief culture, grief commercialism, how members of other cultures grieve, and grief related to the events of September 11th. The author states, “With this book I hope to offer you a means of escape from our habitual ways of thinking about grief”

For more visit: http://books.simonandschuster.com/The-Truth-About-Grief/Ruth-Davis-Konigsberg/9781439148341

Slow, intimate, simple and family led. It’s the way most people want to say goodbye to their loved ones. Only two generations ago, most Australian families cared for the dead with their own hands.  Today it’s a different story, says Rachael Dexter.

In, Death and the Institution: How one company makes funerals expensive in Australia (Catalyst July 25, 2015),  Dexter writes: ‘The modern death process is clinical, corporate and incredibly profitable. According to market research company IBIS World, the Australian funeral industry makes over $1bn each year, and it’s not hard to see why. Funerals, hearses, undertakers, embalming, tributes, flowers; the avenues to posthumously spend our money are endless.

“It’s not like the funeral industry has been an industry for very long,” Jenny Briscoe-Hough says. Jenny is the manager of the Port Kembla Community Centre. Her mother passed away six years ago and her family did as much as they could: arranging flowers, making memorial cards, washing, dressing and caring for the body.   But the funeral still cost $10,000.

Jenny realised Australia’s ignorance of death care often leads to monetary exploitation. The same warning also surfaced in a recent Grattan Institute report.  Dying Well, warns poor planning, misinformation and reluctance to talk about death puts families through unfavourable and sometimes exploitative funeral experiences.

Death is more institutionalised in Australia than any other country, according to Dying Well. While the report highlighted a dearth of funding for community and home death care, it also revealed social taboos around death talk contributed to the rate.

“People need to empower themselves, the funeral directors aren’t all to blame,” says Natural Death Care Centre  (NDCC) founder Zenith Virago.  NDCC educates on the practicalities of dealing with a corpse. It’s not commonly known that in NSW, funerals can legally be a DIY affair. You can build a coffin, file the paperwork, store the body, run a ceremony and drive your own vehicle to the cemetery or crematorium.

She recommends approaching a funeral director like you would any other service provider.  “If you went to a travel agent and they were bossy and controlling and they said ‘This is the only holiday we’ve got available and we think you should go’, then people wouldn’t stand for it.”

The resounding advice from many DIY and not-for-profit advocates is simply to slow down; embrace the process of death.  “Death puts you right at the centre of life, you’re never more alive than when you’re at that edge, you’re suddenly completely awake, you know?” Jenny says.   To get the full story log onto:  http://rmitcatalyst.com/death-and-the-institution/