A good death (via @ConversationEDU)

A good death: Australians need support to die at home

By Hal Swerissen, Grattan Institute and Stephen Duckett, Grattan Institute

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:

  • over-75 health assessments
  • entry to a residential aged care facility
  • 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 Conversation

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 article was originally published on The Conversation.
Read the original article.

twitter 102 – I know what a hashtag is, what’s next?

Greetings tweeps.
That’s not an insult by the way, a tweep is a person who uses twitter, think twitter/people.

So maybe by now you have had a look at twitter and know what a handle is, i.e. a person’s user name that starts with an @ symbol.
And you know we use hashtags like #palliative to “tag” topics of interest so other people can find them.
Hopefully you have registered and have a handle of your own.

What’s next? Time to dive into the fabulous world of tweetchats. A tweetchat is an event on twitter that can happen as a regular event, or as a one off or occasional event.

One of my favourties is #hpmglobal which is hospice and palliative medicine global. It’s hosted by Prof Jim Cleary (@jfclearywisc) who works at the University of Wisconsin Carbone Cancer Center as an oncologist and palliative medicine physician. He passionately promotes global access to opioids. https://twitter.com/jfclearywisc
Each week at a particular time, which at the moment is Monday 22:00 AEST, he hosts a multidisciplinary discussion which is attended by people interested in palliative care from all over the world, including clinicians in Africa, the Americas, Europe, and of course a strong showing from Australasia.

Your well-run tweetchat has a theme that is decided and promoted on Twitter ahead of time. Examples from the past have included discussions of opioid availability in developing countries, and end of life care policies in your country. It has an international emphasis. Another great chat, #hpm, is terrific but sadly at a bad time for ANZ tweeps, in work hours on a Thursday. See the link below.

The tweetchat hour may be structured like this:
The topic has been announced, often with a link to a blog written by the host of the tweetchat or by the co-host of that week’s chat.
1. restatement of the topic and relevant link
2. introductions
3. topics one, two and three (marked as T1 etc)
4. CT (closing thoughts)
5. Announcement of next week’s topic
6. Sometimes the data analysis of the tweetchat is tweeted

It’s really fun and you meet great people. You are welcome to just listen in and not say too much (“lurk”).

Once you have the hang of this, it’s time to start trying out other twitter related platforms like tweetchat, tweetdeck and hootsuite. These make it easier to follow several conversations at once, and tweet as different identities. So for example, sometimes I tweet as @sonialf and sometimes as @palliverse.

Other tweetchats I enjoy are #hcldr (health care leaders), #hcsmanz (health care social media Australia/New Zealand) and #hpmjc (hospice and palliative medicine journal club).

I hope to see you at 22:00 Monday night, i.e. tomorrow (Melb/Sydney time) for a combined #hpmjc and #hpmglobal. Let us know if you are there as a result of @palliverse!
Here is the tweet about it including the link…
#hpmglobal meets #hpmjc “How good r we at diagnosing dying?” Join @drol007 Mon Sept 29 12n GMT (10pSYD; 1pLON; 8aNYC) http://spcare.bmj.com/content/4/3/263.full.pdf

What is your favourite tweetchat? Let us know in the comments.

Cheers, sonia

Article by Christian Sinclair @ctsinclair about #hpm

Palliverse researchers database

You asked for it. Here it is! Behold the beginning of the Palliverse researchers database!

Please feel free to contact people on the database who share similar research interests to you – that’s the whole point of the database!

Please join us and invite your colleagues to join us! Here’s the invitation.

Email us at Palliverse@gmail.com if you have any questions, want to join the database, or wish to join the Palliverse community!

Love and hugs from the Palliverse Team

Palace of Care – Mate

I thought to myself while I was talking to him today, I’m really going to miss this guy, who I’ve been calling mate.

Some people will really pull on your heart-strings. Mate is one of those people. He’s really unwell, and his time is very limited, but he’s still charming the ‘socks off’ of all of the ladies. He’s always very polite, and well-mannered. I’ve been looking after him for the past week or so, and he has been deteriorating on an almost daily basis. He never complains and has never liked to cause a fuss. He’s a shy man, who doesn’t want to be a nuisance, I’ve had to almost beg him to ask for pain relief when he needs it. He has been through an awful lot of pain. It has improved since he came under our care, but it is still there. He has never complained, either before or after his illness was discovered.
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Elsewhere in the Palliverse – reading list

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.

Bioethicist Ezekiel Emanuel writes in the Atlantic on Why I Hope to Die at 75. And here’s a rebuttal from Alex Smith at GeriPal.

Making a case for the integration of palliative care in policies on ageing and dementia – a European perspective (EAPC Blog)

More on dementia – Ageism and death anxiety (ehospice UK)

In Australia: Call for a Royal Commission into Nursing Home Care (ABC Radio National)

And a more positive look at residential aged care: A Nursing Home Can Be a New Beginning (Adele Horin)

An interview with the Groundswell Project (Dying Wishes – Australian Ageing Agenda)

The NHS (UK) has an End of Life Guidance app! (iTunes store)

The Institute of Medicine (US) released a report entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” There’s been a lot of discussion about it on palliative care social media and the mainstream media over the past week. Pallimed has a nice summary.

Terminally ill, but constantly hospitalised. (NPR)

Many Palliverse readers would be able to relate to this – The reality of nurses completing their own research (EAPC Blog)

If you haven’t already, consider signing the Montreal Declaration for palliative care (AHPCA Blog)

Also consider crowdfunding Little Stars, a movie about paediatric palliative care.



Call for papers by Palliative Medicine for special edition

Palliative Medicine have put out a call for papers for a special edition focussing on integrated care for people with palliative care needs.

“This proposal for a special edition of Palliative Medicine aims to address the increasingly important topic of integrated care in the context of palliative and end-of-life care service delivery. Integrated care can be defined as ‘an approach that seeks to improve the quality of care for individual patients, service users and carers by ensuring that services are well coordinated around their needs’.”

The deadline is 30 March 2015.

Thanks to @jfclearywisc for posting on Twitter.

Further details from : http://pmj.sagepub.com/content/28/9/1078.full

Cheers, sonia

Brief reflections from Montreal – plus a selection of posters!

Balfour Mount 1

The 20th International Congress on Palliative Care was held in Montreal, Canada between 9-12 September 2014. Overall, it was a wonderful conference with:

  • Thought-provoking plenaries and masterful workshops
  • Knowledgeable speakers and engaged audiences
  • A wide range of parallel sessions covering diverse topics from basic pharmacology to service delivery and development to spirituality, psychology and ethics, catering for every member of the palliative care team
  • Wonderful moments of reflection
  • Opportunities to meet new friends and catch up with old colleagues

… all set in the beautiful city of Montreal, which had a decidedly European feel to it, with all the cobblestoned streets in Old Town, as well as the rapid-fire French in our ears. Continue reading

Top 5 advances in Oncology… what’s your vote?

Undoubtedly the practice of palliative care has radically changed and continues to be influenced by the development and use of new, biological agents in cancer. Medscape has surveyed health care professional for their views on the top 5 advances in Oncology in the last 50 years. Can you guess? Do you agree with their choices? The below is taken from http://www.medscape.com/viewarticle/831867?nlid=65887_2201

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How to participate in #hpmJC – palliative care Twitter journal club

Interested in Twitter journal club but not sure what it’s all about? Keep reading.
The next #hpmJC will be held on 29th September 2014, 10pm AEST (noon GMT). It will be hosted from the UK by Dr Ollie Minton (@drol007). The article to be discussed is Diagnosing dying: an integrative literature review, by Kennedy et al. It’s available via open access from BMJ Supportive and Palliative Care.

Twitter journal club is a regular (approximately monthly) “tweet chat”. Unlike a traditional journal club, participants are located all over the world, giving a global perspective to the discussion and sharing their local practices. Sometimes the study authors participate!You don’t need a Twitter account to watch the discussion – simply go to twitter.com and type #hpmJC into the search bar in the top right-hand corner of the page. An even easier option is to visit a website like tweetchat.com or tchat.io – these websites automatically update when anyone tweets with the #hpmJC hashtag. Again, you don’t need to sign in to use these websites.

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Striving for better research: Transparency, reproducibility, robustness

Transparency, reproducibility, and robustness… These are central concepts to undertaking thorough research that, importantly, can be replicated or reliably used by the broader field of science to advance medicine… or whatever field it is that we choose to dabble in.

The world’s most influential (i.e. ‘highly cited’) scientific journal Nature, with its impact factor of no less than 38.597 (Thomson Reuters, 2013), has drawn light to “the worrying extent” to which our research “have been found wanting” in terms of reproducibility.

It’s an interesting idea. While our research may be robust enough to pass the test of a reviewer, does it ensure sufficient transparency for reproducibility? And if indeed it’s not reproducible, how can we ever know it’s false?

Have a read: go.nature.com/huhbyr