“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).
And we are back! After our very successful inaugural tweet chat last month, let’s rock again with our next effort, and Let’s talk about death, baby together with Palliative Care Australia.
A tweet chat is a virtual meeting on twitter. This chat has the hashtag #pallANZ. Remember to use this hashtag in all your tweets, otherwise people will miss your comment. If you are not familiar with tweet chats, check out our Twitter 101 and 102 articles on this site.
It’s hard to talk about dying, or as we sometimes say (only half joking), the D word.
Here are some great references on the subject recently:
It’s hard to predict events in the final days and hours of a person’s life. Some deaths are wonderful – a gentle decline preceding a gracious demise. Certainly these are the sorts of deaths we see in films or on television, where the dying patient bids farewell to gathered family and friends before softly closing his eyes.
These gentle departures happen in real life too – many people simply die in their sleep, and many families and friends share the privilege of witnessing the calm and serene departure of a loved one. Of course, grief follows, but those left behind are able to take solace in the knowledge and memory of a peaceful passing.
Unfortunately for every “good” death, there are many which are much more stormy and drawn out. These deaths can leave families traumatised for many years or simply make the grief that much harder.
I have so many links to share with you. Here are a few of them:
Australian critical care doctor and blogger Andy W writes about death and taxes and asks, “…why is it that we seem to spend so much time talking about the taxes, and not nearly enough about death?” Thought-provoking stuff. “The Things That Are Certain“, The Flying PhD
If you’re lucky enough to have a break over the summer holiday season, I would advise that you to avoid anything work-related. However, if you just can’t pull yourself away from the worlds of palliative care and research, here (in no particular order) are some related links:
Check out the short films from Little Stars TV, sharing stories of paediatric palliative care.
Need a last-minute gift for an older person? See GeriPal’s list of Gifts for Seniors (although my Dad didn’t seem to appreciate it when I shared it with him!)
A medical conference with rapping and singalongs? I’d love to attend this “creative medical conference“, which explores “the spaces between medicine and humanities and media and technology.” (Dotmed conference via Irish Times)
Some of our readers will be able to relate to this piece on the post-PhD slump. I am slowly working my way through the rest of this excellent blog, Patter, from Professor Pat Thomson.
And here’s a great article about palliative care in the emergency department. You can join the discussion about palliative care in your local emergency department (Academic Life in Emergency Medicine)
Prof Nick Talley, President of the Royal Australasian College of Physicians, laments the lack of clinicians involved in research in this opinion piece in The Guardian.
The Heart Sisters blog (@HeartSisters) is a great read for a patient’s perspective of living with heart disease and navigating the health care system.
Another patient blog I recommend is Living with Bob (Dysautonomia) (@RustyHoe). She writes detailed, thoughtful posts about living with chronic illness. Her descriptions of dysautonomia symptoms are eloquent. I can’t do it justice. Check it out.
I’m excited enough about the pedometer app on my phone, so you can imagine how much I’m geeking out about these Top Ten Medical Uses of the iPhone. (from internetmedicine.com)
This is another article from the Death and Dying series on the fantastic website The Conversation. We’ve shared a couple of these articles before and I would recommend reading the rest over at The Conversation.
Tweets from the afterlife: social networking with the dead
Media technologies have operated as both a means of communicating news of a death and memorialising the deceased for a significant period of time, moving from traditional epitaphs, eulogies, wakes and inscription in stone to centuries-old obituaries printed and circulated in newspapers. So where are we now? Continue reading →
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!
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.
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 