#ANZSPM16 Cost of caring tweet chat

I thought our most recent tweet chat on the cost of caring featuring Dr Merryn Gott was one of our best!

Thanks to James for moderating.

If you were unlucky enough to miss it, I have written a Storify which would provide a quick summary.

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Have a lovely weekend, Sonia

#ANZSPM16 tweet chat: the (hidden) cost of caring

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A game changer at the recent Australian and New Zealand Society of Palliative medicine 2016 Conference (#ANZSPM16) was Dr Merryn Gott’s plenary presentation on the hidden costs of caring. Little is known about the financial impact of caring for people at the end of life.

She detailed some powerful anecdotes, including the story of two sisters whose mother lay dying in a hospital. The cost of parking was prohibitive and the daughters took it in turns to sit in the car watching out for the parking inspector. When their mother died, only one of the daughters was there; the other was in the car. Continue reading

#ANZSPM16 Wrap up

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Days two and three of the Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2016 Conference: The Changing Landscape of Palliative Care was just as brilliant as the first. The plenary sessions featured:

  • Merryn Gott (@MerrynGott) spoke about the ‘last taboo’ in our community: the invisible and sometimes unexpected costs of providing care at the end of life, which are often not explored in clinical and almost never measured in policymaking and research. She also discussed  the impact of culture, ethnicity and gender on who is bearing these financial and non-financial costs. To find our more, read her open access @PalliativeMedJ article here.
  • Meera Agar (@meera_agar) discussed the growing evidence base around delirium care in the palliative care setting. Management of this complex, distressing, life-threatening, but often reversible syndrome is challenging. Non-pharmacological strategies and a system-wide approach to organizing and delivering care are crucial, as research into various drug treatments continue to demonstrate a lack of clear benefit and the potential for harm. Meera recommends iDelirium for more information about this important area of palliative care.
  • Pippa Hawley reflected on the lack of evidence around the use of medicinal cannabis – despite the immense interest from (and considerable experience of) our communities. How should clinicians respond while the scientific and legal issues are sorted out? Ask questions, keep an open mind & work with our patients!
  • Douglas McGregor explored the interface between heart failure and palliative care. He referenced Sarah Goodlin’s open access article, Merryn Gott’s study while discussing prognostic uncertainty and clinician paralysis; and observed that most guidelines still see palliative care as relevant only at the very end of life, rather than a key component of chronic disease management. Amy Gadaud’s (@agadoudreview was flagged as a good place to start when considering issues around early integration.
  • Sam Bloore stimulated and inspired delegates with his fascinating talk about dying well in a culture of bitcoin and botox. How can palliative care adapt, survive and thrive in this changing cultural landscape characterized by information overload, mindless distraction and incoherence? We must remain a “subversive” counterculture and continue to strive towards caring deeply and meaningfully!

In addition to these amazing plenaries, fully (and at times even over-)subscribed workshops on the overlap between palliative care and addiction medicine / chronic pain, aged care, literature and the arts were held, alongside numerous excellent oral and poster presentations from specialists and trainees. The enthusiastic and well-informed audience present during all of the sessions was another highlight for me (and I’m sure all of the other speakers and delegates)!

It’s been a wonderful few days in Perth. A big thank you to the Conference organizing committee, chaired by Derek Eng (@dr_engd), for inviting team @Palliverse to be part of this great event. Thanks also to all of you for engaging with #ANZSPM16 on social media. Keep an eye out for our upcoming tweet chats, during which we will continue the conversation about the changing landscape of palliative care!

 

Michael’s story: Delirium – “the fear on his face was palpable”

Delirium is a common, distressing complication of life-limiting illness, yet poorly understood, often misdiagnosed and poorly managed. The Australian Commission on Safety and Quality in Health Care (ACSQHC) recently launched its Delirium Clinical Care Standard. I was fortunate to attend the official launch event on 15th July 2016 – the stand-out of which was the powerful story of Michael, as told by his wife Joan Jackman, who was Community Representative on the Delirium Clinical Care Standard Working Group.

She has kindly allowed me to reproduce her speech here and I hope it will spark discussion about delirium, what we can learn from Michael and Joan’s experience, and how we can do better.

 

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Michael loved the Australian bush. Photo: Wayne Robinson

Michael’s story:

‘Every medical condition is about a person with an individual history, friends and family, and a personal story. The person in the centre of this story is my husband Michael – a healthy, fit, intelligent man – who had been a fitness trainer in the British Air Force before becoming a British-trained Remedial Gymnast in Rehabilitation, for people with a disability. He was an elite sportsman, with a love of life, and also for his family.

Around the age of fifty-nine or sixty, Michael began to experience changes, utmost being that he became increasingly disengaged –with us, and with life! Something was wrong! We sought help.  After three misdiagnoses and six years, Michael was finally diagnosed with a Younger Onset Dementia. He was by then, 66 years old.   Continue reading

End of life caring a women’s workforce

Ed:  As you may know this month our #pallanz tweetchat in partnership with PCA is focused on Caring for the Carers.  In this article Tessa Morgan, Merryn Gott, and Lisa Williams explore the experience and care needs of women who are palliative carers.  This piece is part of an ongoing series of blog articles entitled “Gender in palliative care” .

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It doesn’t take an expert to conclude that the palliative care workforce is dominated by women. Globally, women make up the vast majority of the paid palliative care workforce. Ninety percent of the nurses and health care assistants involved with end of life care are women and there are a higher proportion of women in Palliative Medicine than in most other specialities. Over half of Palliative Medicine physicians in Australia, for example, are women. This is in addition to the vast (and ever-increasing) number of women who provide unpaid care for their dying relatives. It is hardly a stretch, then, to regard palliative care as essentially a woman’s domain. Indeed, with the rise in population of the oldest-old, the need for more people – presumably women – to provide palliative care in hospice, aged care and community settings will continue to grow.

Continue reading

To die at home or in hospital? Aussies want one but we fund the other via @ConversationEDU

Nikki McCaffrey, Flinders University

Where do you want to die? Provided symptoms can be controlled, most people at the end of life prefer to die at home. However, just over half of Australians who died in 2011-12 died in hospital.

In the same year, about A$2.4 billion was spent on hospital care for people aged 65 or older in their last year of life. But only a small fraction of that amount is spent supporting people to die at home.

Public money is being wasted on ineffective and inefficient treatments and health services which do not meet patients’ and families’ needs and wishes at the end of life.

This money would be better spent on palliative care services. Among other benefits, these more than double the chance of dying at home through the provision of home-based support services such as nursing.

Health funds spent on treatments and health services of negligible and questionable value, such as chemotherapy at the end of life, should be reallocated to palliative care services. This would improve our chances of dying well and in accordance with our wishes.

Palliative care is care provided to people living with a terminal illness where a cure is no longer possible. The aim of palliative care is to achieve the best quality of life possible for patients and their families during the illness and after death by relieving symptoms, addressing emotional, social and spiritual needs and reducing suffering.

This type of care is provided by teams of assorted professionals such as chaplains, doctors, nurses, pharmacists, physiotherapists and social workers. It is provided across all types of settings, including hospitals, hospices, residential care facilities and at home.

A recent report suggested investing A$237 million in providing palliative care services at home rather than in hospital wouldn’t raise the total health care spend but would increase the proportion of Australians dying at home from 14% to 30%.

High-quality palliative care is person-centred and compassionate. Emerging evidence suggests this type of care could even lower health costs, mainly by reducing hospitalisations at the end of life.

Palliative care in hospital

Inevitably, and appropriately, some people will need or desire hospital care at the end of life. The Australian Institute of Health and Welfare’s recent update on palliative care services in Australia showed that over the past ten years there has been a 52% increase in hospitalisations for which the main purpose of care is palliation.

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This trend will continue rising due to our increasing, ageing population and earlier warning of death.

In 2012-13, 42% of people who died in hospital were receiving palliative care. Providing specialised palliative care in hospitals, particularly early on, can reduce hospitalisation costs by shortening the hospital stay and reducing intensive care and laboratory costs, as well as improving quality of life.

What about informal care?

In 2011-12, Australia spent A$140.2 billion on health. Roughly a third of total health costs is associated with people in the last year of life.

But this estimate does not include costs to the individual or their family. Recent research suggests as much as a third of total spending on caring for people at the end of life falls on family and friends.

Without the support of informal carers, home-based care at the end of life would often be unachievable. Smaller, more geographically spread out families, higher divorce rates and changing communities mean these support networks are likely to shrink at a time when the need for them is growing.

When planning health-care services in this setting, it is essential we also think about informal care costs. We need to make sure we avoid over-burdening families who are a vital part of end-of-life care.

Achieving a better death

Without adequate palliative and end-of-life care, people will continue to be cared for and to die in hospitals despite most Australians wishing otherwise. Patients will have a poorer quality of life at the end of life. Families will suffer unnecessarily. Care will not be provided efficiently.

We are all going to die, but how will we die? Investing in palliative care services will improve our chances of dying well and in accordance with our wishes.

The Conversation

Nikki McCaffrey, Health Economist with Palliative Care Clinical Studies Collaborative (PaCCSC), Dept Palliative & Supportive Services & Flinders Health Economics Group (FHEG), Flinders University

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

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to this weekend’s reads. People seem to enjoy the cute animal stories, so I’ve included one (near the end, if you want to read it first).

The latest paediatric palliative care video (below) from Little Stars is about treating chronic pain in children. It’s nice to see how the interdisciplinary team interacts with, and respects, the girl in the video.

An article that is all over my social media feeds this week: Knowing How Doctors Die Can Change End of Life Discussions. It also brought back to mind this article on How Doctors Die. (NPR)

“I felt like I was beating up people at the end of their life…I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone’s life.” Continue reading