By Mollie Carlile AM
November 2nd 2015
If you feel able, please share this post with your networks, How we do Death is the conversation we have to have!
I attended Andrew Denton's presentation on euthanasia or voluntary assisted dying at "The Di Gribble Argument", conducted by the Wheeler Centre on Monday night at The Regent Theatre in Melbourne. It was a thought provoking, and engaging presentation, but as someone who has worked intimately with dying and grieving people for almost thirty years, I am totally frustrated that the whole conversation we need to be having about improving how we do death in the community, has suddenly been reduced to this one tiny piece of a huge jigsaw of end of life care, purely because it has celebrity endorsement. Don't get me wrong, I both admire and respect Andrew Denton, and think him brave and insightful for taking on this very emotive piece of the puzzle, but it is only one, small piece! Since Monday night the whole conversation about end of life in the print, radio and TV media has been hijacked and has become wholly and solely about euthanasia being the universal panacea to a "good death". I'm guessing this was not Andrew Denton's intent, but it has fast become the reality.
I understand the distress of watching someone you love die and as Andrew spoke of his experience watching his father Kit die, I could empathise. I cared for my father, two of my uncles, two aunts and more close friends and colleagues than I care to count while they lived their last day's and weeks. Because their pain and (HOLISTIC) symptoms were well managed, they were all able to die in their place of choice, surrounded by family and friends.... in other words, they died 'comfortably'. Death is always distressing, especially for those sitting by the bed watching it happen, even when you're a professional clinician. Of course each one of these experiences was distressing for me!!! I loved each and every one of these people and will carry their dying moments in my memory until I die myself. I trust, however, that the provision of individualised, holistic, end of life care for each of them and every other patient I've cared for over the years, eased their transition..............but how will any of us know, when they can't come back and tell us? Does this mean that those who have managed to die "well" as defined by them, have no place in this debate?
I asked Andrew on Monday night, why his presentation focused on doctors views/opinions and practice when it is predominantly NURSES and carers who are asked by dying people to relieve their suffering via the euthanasia route. Andrew's response was that he didn't have enough time to talk about the experiences of nurses which is a pity! In my experience the request to "hurry things along" (as it is mostly framed by the dying person and their families alike) is a "red flag" that highlights we're missed something in terms of their holistic pain and symptom management and very often it's the spiritual element of their care that has been overlooked. I've also found that if we can address these elements of total suffering (physical, emotional, psychological, spiritual, social and cultural) effectively, often the whole issue of euthanasia becomes irrelevant. I also note that Andrew stated openly in this linked article that we don't do enough research in this area in Australia.....I dispute this. We have a rigorous, broad focused and ongoing research agenda that informs palliative care practice and as one example, resulted in the discontinuation of the use of the Liverpool Care Pathway that was seen previously as a way to ensure quality end of life care. Sure we should be doing more and research around the impact of complementary therapies, meditation, arts (including storytelling and meaning making) and environmental therapies are in their infancy, we're slowly building a body of work on which to base future practice. From my perspective any therapy that has no potential to do harm and is perceived by the person as improving their quality of a life, (in the absence of an evidence base) is worth doing.
That's not to say, I object to people having choice, I don't (and beside that I have no RIGHT to) , BUT the conversation we SHOULD be having is far more extensive than access to voluntary assisted dying, important though that element of the conversation is. We should be asking different and broader questions such as; how do we de-medicalise death and return ownership and control to the individual and their support network? How do we get specialist palliative care services, acute health, aged, community care and the wider geographical and friendship community working TOGETHER in a more effective way to cater for the individual needs of our dying and grieving community members? How do we make Advance Care Planning the norm rather than the exception and how do we ensure that there is a national legislative process that is consistent, so that there is an obligation and regulations that enable and mandate that health professionals carry out the wishes contained in these documents? How do we normalise death in the wider community so that people feel comfortable to discuss it and communities are motivated to support their dying and grieving members? How do we address the avoidance culture ingrained in our language (we don't use the word 'death' but euphemisms in an attempt to somehow 'soften' the message) and practices around death in our modern, western, secular culture? How do we embed death literacy in primary and secondary school curricula and in ALL undergraduate health professional curricula? How do we ensure kids aren't excluded from all of the practices around death, particularly the deathbed vigil, after death care of the deceased person, funerals and memorialisation? How do we ensure people die in their "place of choice" and DONT end up dying in an intensive care unit or Accident and Emergency Department AGAINST their wishes because the people caring for them panic at the last minute or are completely exhausted and don't have the support they need? How do we create meaningful rituals to humanise after death care and ensure grieving families are not at the mercy of people who think "they know best"? These are but a few questions from the enormous list of issues that surround end of life care....but are they being included in the conversation? NO!
Why? because the media is only interested in a "headline" that grabs the public's attention and what we need in this space is an open and informed dialogue that enables people to "die well" as defined by them. There are multiple individuals, organisations and small community groups trying to broaden the conversation, but we get very little airplay because we don't have celebrity endorsement. It won't stop me continually banging on about this, in my role as The DeathtalkerÂ® but I really wish the media would access the wealth of information, initiatives and interest being driven by individuals like myself and Yvonne McMaster, Louisa Weir, Dianna Waycott, Vanessa McColl, Rosemary Speidel, Margaret O'Connor AM, Rod Harris AM, Carmel Smith, Dr Bruce Rumbold, Frank Brennan and the gazillion of people out there who are asking questions and engaging with their communities. Likewise, organisations like The Natural Death Advocacy Network, The GroundSwell Project (initiators of both Dying to Know Day and the National Death Literacy conference), The Motor Neurone Association of Victoria, Dr Pia Interlandi who designs and constructs burial garments with people prior to their death and is involved in after death care, Sally Cant (celebrant and community death advocate), Libby Moloney (who plans and conducts holistic funerals and rituals that are meaningful for families, including natural burial) HealthPlay (founded by Alan Hopgood AM and conducting plays such as Four Funerals in One Day which addresses the very issue of euthanasia and palliative care) to name but a few. These people sit outside the mainstream end of life care focused peak bodies and provider organisations who also contribute enormously in this area, but who are easy targets when the issue of euthanasia is raised.
My single caveat to the above "bagging' of the media is to highlight that my appearance on The Weekly with Charlie Pickering, The Project and multiple radio and print media over the last eight years is because there ARE some high profile media people interested in the bigger picture. It would be nice to think others might join the movement towards compassionate and community supported death, in the person's place of choice (be that hospital or home), respecting their values and wishes and then caring for their relatives afterwards. Euthanasia is a part of this conversation, but is NOT the whole conversation we need to be having!
This post may upset some people...............GOOD! People who are angry or vehemently disagree are at least thinking and have a position on the topic and hopefully may be open-minded enough to look at it from a different perspective. It may also make some people think "YES", I can contribute to this debate, by talking with my family and friends about what they think. Others may even feel empowered enough to start "rattling the can", by writing to their local member of parliament or writing a letter to the editor, or posting on social media. We all have a stake in this, because eventually we will all die and I don't know about you, but I have very particular wishes based on my personal values and the "stuff that matters" to me. If you've not thought about this, now is the time....think, talk, act..........be the difference you want to see. If you think a "good death" is totally about euthanasia, maybe you might like to think about the other aspects I've highlighted, like how do we inform and empower our communities and how do we create the type of compassionate community of which we are proud to be a part?
My Dad, Hector (Jim) McPhee who in partnership with my Mum, Bernadette, taught me from an early age, that if you passionately believe in something, you need to be prepared to fight for it, no matter how hard the fight is or how strong the opposition. This is the reason I speak whenever I can, I've written books and plays and continue to dedicate hours of time to keeping death a topic on social media platforms. For me, when I'm the day comes and I'm dying, surrounded by the people I love, I want to be able to say, "I did all I could to create a better informed, more empowered and compassionate society than the one I inherited and now we do death very differently!"
If you've not seen Andrew Denton talking on television all week or in every newspaper and want to read more about what he has to say, here's a link, but if you google it, you'll have a month's worth of reading!
Republished with permission. Visit Molly's website: The DeathTalker
Molly Carlile AM, FAICD, FACN
AKA The DeathtalkerÂ®. Ambassador for Dying to Know Day. General Manager Integrated Cancer Services, Austin Health.