“It’s about starting a conversation…[Doctors need to] throw in a phrase like how you going, how’s the old boy, is he getting up, is he getting the job done?”
“…I find men want to talk about it, but someone has to start the conversation with them.”
Pulitzer prize-winner Tina Rosenberg visits La Crosse, Wisconsin, home of the Respecting Choices program, where 96% of adults reportedly participate in advance care planning discussions. (Talking Early About How Life Should End, New York Times).
‘Bringing research to life’: 7-8 December 2015, National Ageing Research Institute, Melbourne.
The National Ageing Research Institute is pleased to host the 14th National Emerging Researchers in Ageing Conference in 2015. This is the only national conference in Australia focusing exclusively on the work of higher degree research students undertaking research in ageing across a range of disciplines. The conference presents a unique opportunity for higher degree research students to come together to share their research.
The conference organisers invite the submission of abstracts for oral and poster presentations from PhD, Masters and Professional Doctoral students and other emerging researchers engaged in ageing related research from any discipline.
The call for abstracts is now open and will close on 31 August. A copy of the submission guidelines and abstract template are available on the conference website.
I hope you enjoy this selection of articles (and some links to photos and videos) about palliative care, research and related topics. If you make it to the bottom, I’m interested to know what you think of the last link. Please share your thoughts, and any recommendations, in the comments section.
“Why is so difficult to prognositicate?” asks neurologist Jules Montague, examining cases of poor prognostication throughout history. (Why doctors get it wrong, The Guardian UK)
Team Palliverse still have a place in our heart for textbooks, and we love it even more when their editors write blog posts. To mark the release of the fifth edition of the Oxford Textbook of Palliative Medicine, the OUP blog is publishing a 3-part series titled “Facing the challenges of palliative care”. Part 1 (Continuity) and Part 2 (Development) are available now. (Oxford University Press)
Applications for the Australian Association of Gerontology’s R M Gibson Scientific Research Fund are now open. “The aim of the R M Gibson Scientific Research Fund is to encourage good research particularly from newer researchers in the fields of ageing across all disciplines. The R M Gibson Scientific Research Fund will distribute $15,000 amongst three cutting edge research projects in 2015.”
I’d recommend the current issues of New Philospher (#7: Health) and Quarterly Essay (#57: Dear Life) for some palliative care-related reading. If you can’t make it to the book shop here are some online reads:
Hi and welcome to the first “Elsewhere in the Palliverse” for 2015. There is an (unintentional) geriatric flavour to this week’s links. This is possibly because today marks the end of a six-month geriatrics rotation for me, or maybe because another year has ended and birthday has passed. Regardless, I hope that Palliverse readers enjoy the following links:
Dementia researchers Muireann Irish and Rebekah Ahmed give their take on the new film adaptation of Still Alice, a novel about a 50 year old woman who is diagnosed with Alzheimer’s disease. Have you read the book? Will you see the movie? (Still Alice: A rare look at how dementia steals memories from millions – The Conversation)
Professor Rod McLeod gives some background on his article in this month’s European Journal of Palliative Care, ‘Making it easier to die at home – an innovative programme in New South Wales, Australia’. (Making it easier to die at home – EAPC Blog)
The ASCO Post reviews a review article from JAMA Internal Medicine, about end-of-life discussions and advanced care planning. In summary, it’s all good.
Finally, join the weekly (zombie-free) #hpmglobal tweetchat on Monday (17/11/14 at 11pm AEDT) to discuss an article from BMJ Supportive & Palliative Care about support networks of end-of-life carers. #hpmglobal chat is hosted by Aussie ex-pat Dr Jim Cleary (@jfclearywisc), with participants from several continents. For instruction in how to participate in a tweetchat, see Sonia’s post Twitter 102.
I hope you enjoy these and stay safe from zombies!
Another week has passed and there is much to tell, but before we get into let spare a quick (and envious) thought for Elissa who can’t be with us to post today because she is in the middle of a well earned holiday.
Now down to business.
This clip from the Center to Advance Palliative Care (CAPC) describes a novel analogy for our selves that works neatly with a description of palliative care.
The animation is part of a suite of resources that the CAPC has made available here. Continue reading →
The baby boomers are growing old and in the next 25 years the number of Australians who die each year will double. People want to die comfortably at home, supported by family and friends and effective services.
But more than half of Australians die in hospital and about a third die in residential care. Sometimes they have impersonal, lingering and lonely deaths; many feel disempowered.
Grattan Institute’s new report, Dying Well, released today, sets out how we can improve the quality of dying in Australia. With an investment of A$237 million, we can double the number of people who are supported to die at home – and the same amount could be released from institutional care spending to pay for it.
Institutionalised death
Over the past 100 years, home deaths have declined and hospital and residential care deaths have increased. Even over the past decade, the hospitalisation rate for those aged over 85 increased by 35% for women and 48% for men. Hospitals and residential care – nursing homes – are the least preferred places to die.
Around 70% of Australians want to die at home, yet only 14% do so. People die at home at twice this rate in New Zealand, the United States, Ireland and France, partly because of the differences in support systems.
Adapted from Broad et al 2013.
Deaths for younger people are now rare; about two-thirds of Australians die between the ages of 75 and 95. These days older people are more likely to know when they are going to die in the relatively near future. But we are not taking the opportunity to help people plan to die well.
When asked, most people have clear preferences for the care they want at the end of their life. But rarely do we have open, systematic conversations that lead to effective end-of-life care plans. Most people do not discuss the support they would like as they die.
Dying at home puts pressure on families and informal care, and this pressure is exacerbated in the absence of good support systems. With social change and increased population ageing, the carer ratio – the number of people who need a carer to the number of people who have one – is falling. Already, a significant proportion of dying people do not have a carer.
The result of these problems is that many experience a disconnected, confusing and distressing array of services, interventions and relationships with health professionals. They also end up dying in the very places they expressed a preference not to.
Towards better deaths
A good death gives people dignity, choice and support to address their physical, personal, psychological, social and spiritual needs. As we outline in Dying Well, this would happen more often with three reforms.
First, we need more public discussions about the limits of health care as death approaches, and what we want for end-of-life care. Public education campaigns are a well-established way of promoting change. A national public education campaign would focus on encouraging people to discuss their preferences and choices for end-of-life care with health professionals, including GPs.
Second, individuals need to plan better to ensure that our desires for the end of life are met. Too often we have not appointed someone we trust to make health care decisions when we are unable to, nor set out our wishes for treatment when there is little chance of recovery.
We need trigger points as we get older to remind us to have a conversation about what we want in terms of end-of-life care. Potential trigger points are:
hospital in-patients assessments that conclude the person is likely to die in the next 12 months.
Dying at home puts pressure on families, and this is exacerbated in the absence of good support systems. De Visu/Shutterstock
Third, services for those dying of chronic illness, such as cancer or heart disease need to shift their focus from institutional care and often unrealistic attempts at cures to supporting people’s preference to die at home and in home-like settings, in less pain.
The burden on carers can be reduced by providing more coordinated home care services for dying people including access to personal care and practical support, and symptom management for pain and nausea. Such services will become increasingly important as the number of informal carers declines as a result of more women working and smaller family size, among other changes.
Greater investment
If more people are to die at home, investment in community-based support is needed. Doubling the number of people who are supported to die at home will cost A$237 million a year. However, about the same amount could be released from institutional care spending to pay for it.
Contrary to widespread assumptions about the cost of end-of-life care, only about A$5bn a year – about 5% of the health budget – is spent on the last year of life. Admittedly this spending is only for about 1% of the population who die each year, so the cost per person is high. But less than A$100 million is spent on helping people to die at home. A change in focus will be cost neutral, and help more people to die well.
When death comes for each of us, we want to die comfortably, in surroundings we choose. We need the courage to promote mature discussions about a topic we may dislike but cannot avoid if we are to have better deaths in Australia.
The authors do not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article. They also have no relevant affiliations.
This TED Talk “How Not To Be Ignorant About the World” by Dr Hans Rosling (@HansRosling – Swedish medical doctor, statistician and Professor of International Health) and his son Ola Rosling is an entertaining and eye-opening look at how our biases and intuition lead to misconceptions. (For the record, I vote like a Swede – not a chimp.)
The beautiful poem Japanese Maple by the Clive James (written while he is dying) has been all over my social media feeds this week. Here’s The Guardian‘s take on why it’s resonating with people.
Today (in some parts of the world) it’s Halloween or, as Caitlin Doughty (@TheGoodDeath) calls it, “Culturally Sanctioned Morbidity Appreciation Day.” Please enjoy these links, which have nothing to do with Halloween but may have something to do with palliative care.
palliverse.com 