Die-alogue Cafe

There is a disconnect between what we say we would like to happen come those dying days (or weeks or months) and what actually eventuates.  In this ABC Health Report story, Dr Norman Swan relates the thinking of Dr Bill Silvester. An associate professor at the University of Melbourne, Silvester cites a number of studies and then opinions that the real job rests with the medical profession and politicians to engage with the community to change the status quo.

In: Why do so few people have a plan for the end of their life? (ABC RN Health Report,  22 March 2016) Swan says that, “Advance care directives, or documents that specify your medical requests if you become incapacitated, should be a slam dunk. GPs support them, patients want them, yet only 14 per cent of Australians have one. Why?”

 “It isn’t rocket science, it’s simply training [doctors] to sit down and talk to patients,” says Bill Silvester.  Dying at home, reports continually say, is what Australians want.

The Royal Australian College of GPs, no fringe organisation, believes advance care planning should be incorporated into routine general practice.  The consequences of getting end-of-life care wrong, Silvester notes, amount to more than just a missed opportunity.

‘We’re aware of many repeated occasions where people have undergone operations they never wanted—people with advanced dementia being fed through tubes, people with devastating strokes being kept alive.’

‘One per cent of the population are going to die every year. That’s hundreds of thousands of people.  ‘If we don’t identify those people are dying—and they receive treatment they wouldn’t want—we end up wasting money in the health system and delivering care that people never wanted in the first place.’

So if both doctors and patients support advance care directives, why aren’t they more popular?  Here is one line of thinking:  Partly, it’s a problem of messaging—as the frequently asked questions page of Advance Care Planning Australia hints, the issue can easily be mixed up with euthanasia.

Silvester admits the movement had a bumpy start in terms of messaging: ‘When advanced care planning was first developed, people thought you had to cover all the eventualities.’

He stresses the movement has now adopted an outcome-based approach.  ‘What would be an acceptable outcome for you. If you can feed yourself and you can relate to your family, is that enough?  ‘To put it the other way around, if you reach a point and you can’t walk or talk or feed yourself or interact with your family, what would you want at that time?’

Read the full report at: http://www.abc.net.au/radionational/programs/healthreport/bill-silvester-advance-care-planning-directives/7266814

“Grief affects people in different ways,” says Geraldine Doogue, “and when you’re young, shutting out the whole experience can be one way of coping. Melany’s father died when she was 12, and it wasn’t until she was a young adult that she realised she had to find a way to come to terms with her loss.”

On ABC1 TV ( Compass, 20 March 2016) story producer: Richard Corfield, story researcher: Wendy Boynton, editor: Danielle Akayan and Executive producer: Jessica Douglas-Henry have put together a moving story that demonstrates how grief can be expressed in practical ways that can go on to touch the lives of many people.

Melany’s Remedy tells the story of a meeting with Helen Dunne that was a turning point for Melany.  Inspired by her own experience, this professional shroud-maker runs workshops in making and decorating burial shrouds. This process of stitching, talking, and creating a shroud to honour her father’s memory was the catalyst for Melany to face her past.

“I believe that birth and death are two areas of life that test the mettle of humans. If you feel the grief, there are many things that we might want to hide or not address, but if you face it all, there’s so many rich things in there as well – for ourselves, for life in general, and to take forward with us, and sadness can be one of those rich things,” says Helen.

Here is a link to Helen Dunne’s website http://funeralshrouds.com.au/  To watch the program go to: http://www.abc.net.au/compass/s4417263.htm

You can have anything you want, at Alice’s restaurant. That’s what Arlo Guthrie says in one of his classic songs.  When it comes to death, it seems we get anything other than what we want.  This story from ABC Health & Wellbeing reporter Bianca Nogrady (The tough question we all need to think about: what type of death do you want? 22 Mar 2016) provides some insights as why this might be so.   Here are some extracts …..

Nogrady writes: ‘According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.

But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.

It’s easy to forget we have a choice: While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.

Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.

“People don’t like talking about their own mortality. But I think it’s really important as people do age that we initiate this conversation.”  Dr Frank Jones

“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.

The analogy with birth is a useful one because many of the same questions need to be considered:

• Where would you prefer to be when you die?
• What sort of medical care would you like?
• What sort of interventions do you want to avoid?
• Who would you like to have with you?

Have the piece of paper and the conversation: It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.

Directives often missed in hospital panic: Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.

Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.

This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.

Better infrastructure needed to support end-of-life choices: The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.

Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.

“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.

“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”  The full report can be found at: http://www.abc.net.au/news/2016-03-21/where-we-choose-to-die/7263154

Maybe, just maybe, this concept, that is more a reality than a concept in some countries, could be the real meaning of eternal life – in the bigger picture a part of the ecosystem – where life revolves within a biological reality and the sense of being part of something greater than our mortal selves is allowed to flourish.

‘Green, or natural burial is a way of caring for the dead with minimal environmental impact that aids in the conservation of natural resources, reduction of carbon emissions, protection of worker health, and the restoration and/or preservation of habitat. Green burial necessitates the use of non-toxic and biodegradable materials, such as caskets, shrouds, and urns.’

This Huffington Post story: (Green Burials: Life After Death, Feb 25th 2016) features the work of Joe Sehee, founder of conservationburial.com    “Green burial may sound like another trend of the eco-chic, but it’s actually the way most of humanity has cared for its dead for thousands of years. The idea calls for returning to the earth without the use of non-biodegradable toxins or materials—no embalming, no metal caskets, no concrete vaults. Remember that “ashes to ashes” thing? – See more at:  http://www.perc.org/articles/green-burial-its-only-natural

For thousands of years, and throughout most of the world, burial customs have been used to honor the dead and heal the living. And the great religious traditions, which gave us our end-of-life rituals, have invited us to find solace in the fact that we are all connected to the same natural cycle of birth, death, decay, and rebirth. Then something happened.  To get more on this subject, log onto the links or go to the Huffington Post facebook page. http://rise.huffingtonpost.com/watch/green-burials-life-after-death

Many people say their aim is to have a natural death.  Many people would surely like to follow this up with a natural departure as part of the funeral process.  Few have the aim reach its target. Somewhere along the way the arrow swerves horribly off course and we end up with a somewhat unnatural ending, that could involve nasty chemicals and lavishly decorated coffins.

For those interested in knowing about charting a different course this story from ABC journalist Larissa Romensky (#nocoffin: the natural death movement, ABC Central Victoria 27 Nov 2015) is worth reading.

Holistic Funeral Director Libby Moloney is one of the instigators of the Natural Death Advocacy Network, an organisation advocating holistic approaches to dying and death.

Ms Moloney said the natural death movement was becoming more popular, partially as a response to the cost of conventional funeral care and also because of the environmental impact. The ex-accountant and mother of three opened her own holistic funeral business in Woodend about three years ago.

Read the full story at: http://www.abc.net.au/news/2015-11-27/natural-death-movement-hashtag-no-coffin/6981946

We have until now avoided posting any stories that reference medically assisted dying.  This story is sufficiently compelling to warrant it being given our attention, since it calls for nothing more than respect that there are such divergent views on assisted dying that it demands allowing more choice than is currently available.

Dr Ian McPhee poses some timely questions in this story published in THE AGE  (Assisted dying: the difficult conversation we need to have, February 2, 2016)

“How is it possible that doctors continue to administer futile care as if a ‘last right’ for their patients, when for themselves they wish for no such thing. As recently as this month, in the Journal of the American Medical Association, this fact was again highlighted.    The limitations of intervention are understood but this is not translated into the treatments administered to patients. In a 2014 paper, researchers from Stanford University reported that 88 per cent of more than 1000 US doctors surveyed indicated they would forgo high-intensity care for themselves at the end of life.”

“To bring focus here, my colleague Peter Saul said recently that we are facing ‘a perfect storm of ageing and expanding population with a higher burden of chronic disease’. His call to us as a society has been: “Let’s talk about dying.” It is no less directed at health professionals as it is to the public at large. ”

“For me, the recent, wide public consideration and debate of end-of-life issues has taken on special significance. Eighteen months ago, at the age of 59, I was diagnosed with a rare, aggressive T-cell lymphoma. In the interim, multiple attempts to achieve remission have failed. ”

And further into the story: “Palliative medicine is, [however], a vital part of a ‘system’ of care. I acknowledge that for many it is the difference between last months of extreme suffering, and the achieving of some respite. And while it might herald for some a meaningful end, and even approach the Gawande notion of a “good death”, there remain others, and I number among them, whose sense of what is meaningful carries with it vastly different connotations.”

For the full story: http://www.theage.com.au/comment/assisted-dying-the-difficult-conversation-we-need-to-have-20160201-gmiioi.html#ixzz3zNmNf7Iw
Dr Ian McPhee is a clinical senior lecturer at Sydney Medical School and an anaesthetist in provincial practice in NSW.

We picked up a copy of Seniors on the Coast recently (Issue 9 Jan/Feb 2016).

The report by Sarah Tolmie, Writing the story of your life and love, rang some bells and we thought it worth passing on.

“Our life is a storybook we are always authoring.  Each year is like a chapter.  Some of us will have a thin novella, some a weighty tome.”

Sarah is a civil celebrant whose job includes telling the story of the deceased at the funerals she officiates at.

“ … there is no more defining ceremony than one’s funeral, where your story is told; but often this is curated by others and if we aren’t careful, others will try to own, rewrite and even whitewash your story if you don’t claim your space and speak your truth.”

A great funeral …. faithfully captures the complexity, the fullness and the many aspects of a person’s lived experience and their relationships with their loved ones.”

The eulogy will tell of pains, regrets, triumphs, adventures and challenges; the flaws and the fabulous; the things that are perhaps less well known but define the person as special and unique.

Sarah goes on: “At a recent service a great 83 years young lady was farewelled in her red racing car coffin covered with Christmas bush.  We conducted the service in her home which was packed to the rafters. I delivered the service from the doorway of her bedroom.”

It’s time to pick up that pen and write the story from your perspective.  Get a conversation going with family and friends.  Involve the children and grandchildren.  For the most part young people love to hear what went on in the old days / or the not so old days.

For more go to: http://www.sarahtolmie.com.au/  and for the poem I Am Not Old, by Samantha Reynolds, go to: https://wordpress.com/tag/samantha-reynolds

Louise de Winter writing from North London tells the story of a father of three small children, who, as part of his coming to terms with the tragic death of his wife, chose silence as the means of conveying his sadness at her funeral.

In her story headed: Sometimes There Are No Words, and That’s Okay, (Huffington Post, 19 Nov 2015) de Winter says: “The family were enormously brave in having the confidence to break with convention and use an enlightened funeral director who was prepared to cater to their very simple yet complex needs. They were even braver to stand in silence for ten minutes, allowing whatever emotions they had to be out in the open. No one was directing their grief, or justifying it with words.”

“A funeral that serves its purpose is a ritual designed to acknowledge and accept the death of a loved one, so the living can contemplate how they’re going to continue with their lives. It can be whatever it needs to be, not necessarily what the funeral director offers in a standard package.”

“If done with consideration, a funeral can be profound in its ability to process, heal and transform grief.”

de Winter makes a couple of very important point: “When faced with the death of a loved one, don’t pick up the phone to the first funeral director who comes up on Google. Instead find a funeral director who understands the purpose of a funeral. If they tell you something isn’t possible, find a funeral director who is willing to be flexible.”  And: “There can be words or there can be no words; it’s whatever works for you. Don’t let anyone tell you otherwise.”

Louise de Winter is a Funeral Consultant and Founder of Poetic Endings – http://www.poetic-endings.com   For the full story go to: http://www.huffingtonpost.co.uk/louise-de-winter/funerals-burials_b_8599618.html

Amanda Smith from the ABC Radio National program The Body Sphere asks: What happens to your body when you die?  To find the answer she speaks with Caitlin Doughty a former crematorium operator, ‘who now runs an alternative funeral service called Undertaking LA. Doughty has long lost her fear of corpses. Most of us, though, aren’t going to take the same career path, and so the idea of being in the presence of a dead body is frightening.’

Caitlin Doughty ‘believes that in most cases, the body should be prepared with as little intervention from a funeral professional as possible. ‘For anybody who dies of any kind of heart disease, lung disease, cancer, stroke, the things that people typically die of, it is perfectly safe to have the family involved and wash the body and maybe dress the body, either with a funeral director or by themselves,’ she says. ‘In my opinion that’s a much better way to grieve and to interact with death than to just hand the body off to someone else to take care of.’

‘In many cultures and religious practices the body is taken care of in the home. Over the past hundred years in the Western world, however, death has been professionalised.’

The story can be found at: http://www.abc.net.au/radionational/programs/bodysphere/what-happens-to-your-body-when-you-die/6774044

Audrey de Witte writes a most thought provoking opinion piece in the Newcastle Herald (Aussies seem to think dying is unnatural, NH Monday Sept 21, 2015 p.11), that calls on her Dutch heritage and the way her mother and grandmother dealt with death.
“It’s common practice in the Netherlands when someone dies that their body lies in a glass top coffin in the family home for up to a week before a funeral ceremony is held.” It provides the opportunity “to share stores and celebrate a life.”
Audrey concludes that: ” … if we are comfortable with death – the death of loved ones and our own death, then we will live life more fully and completely.”
See: http://www.theherald.com.au/story/3361204/opinion-aussies-seems-to-think-dying-is-unnatural/