Latest news with #KerrieNoonan
Scoop
28-05-2025
- Health
- Scoop
As A Growing Social Movement And Self-Care Practice, Death Literacy Is Fostering Positive Conversations About The End
Press Release – Independent Media Institute The new self-care movement teaches death literacy as a life-enhancing practice. As global populations transition into what has been called the ' longevity society,' caring for the aging and dying has prompted the emergence of an unusual self-care movement promising improved quality of life as it anticipates death. Since its development and introduction, death literacy awareness has seen a steady organic rise, primarily due to the efforts of early adopters advocating for a ' new public health perspective ' that enhances end-of-life awareness and care. '[D]eath literacy is defined as the knowledge and skills that make it possible to understand and act upon the end-of-life and death care options,' according to a 2024 article in the journal Palliative Care and Social Practice, and its four foundational pillars: knowledge, skills, experiential learning, and social action. Although experts and people attest to the benefits of early introductory conversations about end-of-life, industrialized societies like the United States lost touch with end-of-life rituals and home funerals in the early 1900s. As a result, what was once a natural relationship with the ending of life evolved. The dying were consigned to hospitals and then transferred to funeral homes. Such distancing from dying led to denial, avoidance, and fear of the process. Origins: Defining Death Literacy A chance meeting in 2010 between clinical psychologist Kerrie Noonan and playwright Peta Murray led to the formation of The GroundSwell Project (TGP), an end-of-life educational initiative. Employing community-driven strategies to build awareness and momentum, TGP went on to launch Dying To Know Day (2013), an annual grassroots event encouraging open conversations about death and dying across Australia. By 2021, Proveda merged with TGP, integrating D2KDay into its portfolio of community resources. While casually researching nonmedical end-of-life educational resources late one night in 2015, I discovered this Australian grassroots organization using the term 'death literacy' to describe their mission. As a branding professional, I immediately recognized the power of this term as a positive change agent. Upon receiving permission from TGP's co-founders to introduce and represent the death literacy movement in North America, Bevival organized its first national grassroots D2KDusa campaign in August 2016. By then, Noonan had become a founding member of the Caring at End of Life research team at Western Sydney University and part of the pioneering research team that coined the term 'death literacy' and developed the Death Literacy Index in 2019. A Culture Change Moment The lure of transformation typically attracts early adopters who, in turn, inspire change through collaboration. To evangelize death literacy's mission, the movement attracted support from a wide range of critical stakeholders and change agents —creators, educators, entrepreneurs, academics, social scientists, and health care practitioners. Mindful of creativity's role in laying a foundation for culture change, these advocates took it upon themselves to foster public awareness with a cautious message about the economic and emotional consequences of living longer and dying slower. In the ensuing years, the death literacy awareness movement spawned many mission-driven organizations that endeavor to normalize dying, death, and grief as inevitable human experiences. Examples include Reimagine, End Well, my organization, Bevival, and influential individuals such as Dr. Ira Byock, Katy Butler, Frank Ostaseski, and many others. Collectively, we are helping to dimensionalize the term 'death literacy.' Setting the Stage: America's Aging Demographics The 2014 U.S. Census report pointed to an unprecedented population shift in America—an inflection point that announced the future of America's obsession with youth and consumerism belonged to three consecutive aging populations: primarily boomers, closely followed by Gen X and millennials. 'Between 2012 and 2050, the United States will experience considerable growth in its older population. … In 2050, the population aged 65 and over is projected to be 83.7 million, almost double its estimated population of 43.1 million in 2012,' stated the report. This unprecedented ' silver tsunami, ' with its unique macroeconomy, has led marketers to influence a wide range of consumer goods and services tailored to America's aging population. Popular magazines such as Time, AARP, and the New York Times began addressing our nation's emerging death consciousness. While some offered practical advice, such as the demise of social security and the rising cost of health care, others inspired readers with bucket lists and lifestyle stories highlighting the West Coast's youthful ' Death Positive Movement.' Death With Dignity Congruent with the movement promoting death literacy education, an important parallel initiative supporting the legalization of Medical Aid In Dying (MAID) has become legal in 11 states and Washington, D.C. The right to die conversation has been slowly making its way through individual state legislations spearheaded by Compassion & Choices, Death with Dignity, NHPCO, and End of Life Choices. As of 2025, states where legislation is under consideration include Delaware, Massachusetts, Michigan, North Carolina, Pennsylvania, and Virginia. Peak 65 The U.S. Census named 2024 as the start of ' Peak 65,' a period that will last through 2027. Around 4.1 million Americans are expected to turn 65 each year from 2024 to 2027 (approximately 11,000 a day). By 2030, all baby boomers will be 65 or older. Implications of 'Peak 65' include: – Long-term care: According to a 2002 Health Services Research study, the trickle-down economics of aging will impact younger generations, who may need to become caretakers for their aging loved ones. 'The real challenges of caring for the elderly in 2030 will involve: 1) making sure society develops payment and insurance systems for long-term care that work better than existing ones, 2) taking advantage of advances in medicine and behavioral health to keep the elderly as healthy and active as possible, 3) changing the way society organizes community services so that care is more accessible, and 4) altering the cultural view of aging to make sure all ages are integrated into the fabric of community life.' – Labor gap: Retirement will cause a massive reduction in talent, leaving employers to lose expertise, and they may struggle to replace retiring workers. – Retirement: It's a well-known fact that many boomers are entering an underfunded retirement and will face challenges with dwindling finances. It is impossible to overstate how critical widespread death literacy adoption is for our society. As the demand for public-facing initiatives supporting end-of-life preparedness accelerates, ratification within professional environments validates the evolutionary arc of social transformation. By building proficient narrative long before the end, entire populations will be better served before, during, and after the passing of loved ones. Author Bio: Caren Martineau is the CEO and founder of Bevival, a death literacy content brand and movement dedicated to promoting death literacy. Find her online here at
Scoop
28-05-2025
- Health
- Scoop
As A Growing Social Movement And Self-Care Practice, Death Literacy Is Fostering Positive Conversations About The End
As global populations transition into what has been called the 'longevity society,' caring for the aging and dying has prompted the emergence of an unusual self-care movement promising improved quality of life as it anticipates death. Since its development and introduction, death literacy awareness has seen a steady organic rise, primarily due to the efforts of early adopters advocating for a 'new public health perspective' that enhances end-of-life awareness and care. '[D]eath literacy is defined as the knowledge and skills that make it possible to understand and act upon the end-of-life and death care options,' according to a 2024 article in the journal Palliative Care and Social Practice, and its four foundational pillars: knowledge, skills, experiential learning, and social action. Although experts and people attest to the benefits of early introductory conversations about end-of-life, industrialized societies like the United States lost touch with end-of-life rituals and home funerals in the early 1900s. As a result, what was once a natural relationship with the ending of life evolved. The dying were consigned to hospitals and then transferred to funeral homes. Such distancing from dying led to denial, avoidance, and fear of the process. Origins: Defining Death Literacy A chance meeting in 2010 between clinical psychologist Kerrie Noonan and playwright Peta Murray led to the formation of The GroundSwell Project (TGP), an end-of-life educational initiative. Employing community-driven strategies to build awareness and momentum, TGP went on to launch Dying To Know Day (2013), an annual grassroots event encouraging open conversations about death and dying across Australia. By 2021, Proveda merged with TGP, integrating D2KDay into its portfolio of community resources. While casually researching nonmedical end-of-life educational resources late one night in 2015, I discovered this Australian grassroots organization using the term 'death literacy' to describe their mission. As a branding professional, I immediately recognized the power of this term as a positive change agent. Upon receiving permission from TGP's co-founders to introduce and represent the death literacy movement in North America, Bevival organized its first national grassroots D2KDusa campaign in August 2016. By then, Noonan had become a founding member of the Caring at End of Life research team at Western Sydney University and part of the pioneering research team that coined the term 'death literacy' and developed the Death Literacy Index in 2019. A Culture Change Moment The lure of transformation typically attracts early adopters who, in turn, inspire change through collaboration. To evangelize death literacy's mission, the movement attracted support from a wide range of critical stakeholders and change agents—creators, educators, entrepreneurs, academics, social scientists, and health care practitioners. Mindful of creativity's role in laying a foundation for culture change, these advocates took it upon themselves to foster public awareness with a cautious message about the economic and emotional consequences of living longer and dying slower. In the ensuing years, the death literacy awareness movement spawned many mission-driven organizations that endeavor to normalize dying, death, and grief as inevitable human experiences. Examples include Reimagine, End Well, my organization, Bevival, and influential individuals such as Dr. Ira Byock, Katy Butler, Frank Ostaseski, and many others. Collectively, we are helping to dimensionalize the term 'death literacy.' Setting the Stage: America's Aging Demographics The 2014 U.S. Census report pointed to an unprecedented population shift in America—an inflection point that announced the future of America's obsession with youth and consumerism belonged to three consecutive aging populations: primarily boomers, closely followed by Gen X and millennials. 'Between 2012 and 2050, the United States will experience considerable growth in its older population. … In 2050, the population aged 65 and over is projected to be 83.7 million, almost double its estimated population of 43.1 million in 2012,' stated the report. This unprecedented 'silver tsunami,' with its unique macroeconomy, has led marketers to influence a wide range of consumer goods and services tailored to America's aging population. Popular magazines such as Time, AARP, and the New York Timesbegan addressing our nation's emerging death consciousness. While some offered practical advice, such as the demise of social security and the rising cost of health care, others inspired readers with bucket lists and lifestyle stories highlighting the West Coast's youthful 'Death Positive Movement.' Death With Dignity Congruent with the movement promoting death literacy education, an important parallel initiative supporting the legalization of Medical Aid In Dying (MAID) has become legal in 11 states and Washington, D.C. The right to die conversation has been slowly making its way through individual state legislations spearheaded by Compassion & Choices, Death with Dignity, NHPCO, and End of Life Choices. As of 2025, states where legislation is under considerationinclude Delaware, Massachusetts, Michigan, North Carolina, Pennsylvania, and Virginia. Peak 65 The U.S. Census named 2024 as the start of 'Peak 65,' a period that will last through 2027. Around 4.1 million Americans are expected to turn 65 each year from 2024 to 2027 (approximately 11,000 a day). By 2030, all baby boomers will be 65 or older. Implications of 'Peak 65' include: - Long-term care: According to a 2002 Health Services Research study, the trickle-down economics of aging will impact younger generations, who may need to become caretakers for their aging loved ones. 'The real challenges of caring for the elderly in 2030 will involve: 1) making sure society develops payment and insurance systems for long-term care that work better than existing ones, 2) taking advantage of advances in medicine and behavioral health to keep the elderly as healthy and active as possible, 3) changing the way society organizes community services so that care is more accessible, and 4) altering the cultural view of aging to make sure all ages are integrated into the fabric of community life.' - Labor gap: Retirement will cause a massive reduction in talent, leaving employers to lose expertise, and they may struggle to replace retiring workers. - Retirement: It's a well-known fact that many boomers are entering an underfunded retirement and will face challenges with dwindling finances. It is impossible to overstate how critical widespread death literacy adoption is for our society. As the demand for public-facing initiatives supporting end-of-life preparedness accelerates, ratification within professional environments validates the evolutionary arc of social transformation. By building proficient narrative long before the end, entire populations will be better served before, during, and after the passing of loved ones. Author Bio: Caren Martineau is the CEO and founder of Bevival, a death literacy content brand and movement dedicated to promoting death literacy. Find her online here at
The Guardian
15-02-2025
- Health
- The Guardian
‘It can be really frightening': knowing the common signs that a loved one is dying can help in their final days
My mum died on a summer's morning. When I walked out of the hospital, where I had spent the last several days and nights curled on a small couch next to her bed, I felt like a stray root of some ancient tree that had accidentally broken out of the earth and into foreign air – wholly unprepared for the strange world I now found myself in. I thought that when she died, maybe the sun would have fallen out of the sky. But it was still bright, golden – as vibrant as my mum had been. On the drive home along the Tasmanian coastline Mum had loved so much, the sea spread out to the horizon in rolls of brilliant emerald. Being with her in the months, days and hours up to her death from cancer was the hardest thing I have ever done. It also felt like the most important. And there was one piece of information that allowed us to recognise what was happening at a crucial moment: a sign that death was close. This information was imparted by a nurse whose name I don't know. She pulled us aside in the hospital corridor when it suddenly became apparent they wouldn't be sending Mum home with a dose of antibiotics like the times before. The nurse asked if we knew there are often changes to someone's breathing shortly before death: alternations between periods of shallow breathing, deeper rapid breaths and sometimes substantial pauses known as Cheyne-Stokes breathing. This meant that several days later, when her breathing did exactly this, rather than calling for a nurse to ask what was happening, my dad, brother, sister-in-law and I spoke to Mum as she died. It meant Mum died hearing the voices of her family telling her how much we loved her; she died being held. There are some other things I wish we had known about death in the months beforehand – things that were confronting, heartbreaking, signs of impending death we missed entirely or which we misunderstood as meaning she had more time left. And while every death is different, experts say knowing some of the common signs that it may be near can change the experience for both the person at the end of their life and their loved ones. Dr Kerrie Noonan, a clinical psychologist and director of the Death Literacy Institute, says that today most people are quite removed from death, dying and illness – meaning we may not recognise signs that someone is approaching the end of their life. 'So, when those signs come, we often haven't seen them before and are relying on health professionals to point them out,' says Noonan, an adjunct associate professor at La Trobe University's public health palliative care unit. 'And if that doesn't happen, they can be quite shocking and difficult to cope with.' Jason Mills, a registered nurse and associate professor at Flinders University's research centre for palliative care, death and dying, says the dying process – from months to hours before death – varies for everyone and there will be different symptoms and trajectories even among those with the same illness. But he says there are some common changes when someone's body is shutting down due to advanced illness or age-related decline. Eating and drinking decreases, and may stop altogether. This can be upsetting to loved ones, Mills says, because food has such a prominent place in our social and family lives. But he stresses: 'It's not that they're giving up on you or that they don't love you. Their body just can't tolerate it any more.' Ken Hillman, professor of intensive care at the University of New South Wales and director of the Simpson Centre for health services research, says 'becoming weaker, not moving around as much, drifting in and out of consciousness' are all common. As is delirium, which may range from confusion, drowsiness and delusions, to hallucinations, euphoria and agitation. Some dying people experience a surge in mental clarity or energy levels in their final days or hours. This may offer a chance for lucid goodbyes – but can also give friends and family false hope the person is recovering. Irregular, loud and laboured breathing can also be distressing to hear, or make it seem the person has died before they actually have. 'It can be really frightening when you're at the bedside of someone dying, and the period of them not breathing is very, very long and so relatives think they've passed, then suddenly they take this huge breath,' Hillman says. Mills recommends asking a health professional if you're concerned by something, since there are often things that help – including adjusting positions, medication or sometimes simply an explanation. 'For example, rattly breathing can be really distressing for family and people around someone who's dying, and often clinicians can prescribe [medication], because ultimately the noisy breathing is due to fluid secretions accumulating at the back of the throat … but it's not actually causing distress or harm to the dying person.' Both experts encourage holding the dying person's hand or gently stroking their forehead, and continuing to speak to them. 'I always tell relatives hearing is the last to go,' Hillman says. Hillman says the medicalisation of death – while alleviating a lot of suffering – can mean social and spiritual aspects are forgotten. 'We live in a death-denying society,' Hillman says, noting that since doctors are 'programmed to cure people' even they can struggle to step back and recognise that someone is dying. Pressure to do everything possible to extend life can come from both families and health professionals, Mills adds. 'Whether it's tacit or otherwise, death is often seen as a medical failure.' Cultural and religious beliefs also influence if and how death is discussed. Eliza Munro, a Gamilaroi woman and sorry business consultant with Ngiyani Wandabaa, is exploring death and dying in First Nations communities globally as a Churchill fellow. She says beliefs vary across communities. In some, death is celebratory – a return to ancestors; some hold to Christian concepts of heaven and hell; and for some, talking about death and dying is taboo and often seen as 'manifesting death'. '[If it's taboo] this impacts access to palliative care and planning ahead for sorry business and sad news … as well as the cultural protocols after someone has passed,' Munro says. Munro and Mills both stress that not knowing a person's wishes for their death and beyond can affect the grieving process and have significant financial impacts on families trying to make decisions for them. Mills says avoiding the topic also means missing opportunities to support others. 'If we're all busy being in denial about death, what often happens is people disappear – when they find out someone is dying, they think, 'That's scary, I don't know what to say'.' 'Death literacy is our 'knowhow' around death, dying, loss and grief, and how that helps us to plan better and to be prepared for end-of-life and death experiences,' says Noonan, who helped develop the concept and a tool to measure it. Using this index in a survey of 1,202 Australians (chosen to be nationally representative, though the full data is not yet published), Noonan says death literacy appeared to grow between 2019 and 2023, with Covid-19 and the introduction of voluntary assisted dying laws triggering more learning about end of life. For all of us, information helps reduce the fear of the unknown. 'Uncertainty tends to cause stress and anxiety … so whether you read some information, or have a conversation with a friend – if you can find a way to alleviate that uncertainty, your anxiety and stress, on one level, can come down,' Noonan says. Even with extensive planning, support and a knowledge of the most common signs, Mills also reminds family and friends to be gentle with themselves, as dying is unpredictable. 'When someone has been spending hours on end by someone's bedside wanting to be there the moment they die, then the moment they walk away to go to the toilet, that person dies … it's not helpful to beat ourselves up and say, 'I should have done this or that,'' he says. Alongside decision-making, he says discussions about death can help us to live more meaningfully. 'I'm not trying to romanticise death – it's not easy, but it's an important part of life and the better we can understand it and prepare for it, then I think we're all better for it, individually and collectively.' In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, call or text Mental Health America at 988 or chat
