Ramblings from the past, as I think about 2017…

Excellent writing from Kate Swaffer, with links to some of her previous posts. Her blog is essential reading for anyone who works with people living with dementia.

Creating life with words: Inspiration, love and truth

World Dementia Council members 2016 World Dementia Council members 2016

It is already mid January 2017, and I’ve not yet posted a blog, so am hoping to rectify the today! I started this ages ago, but have had trouble paddling since December so have not achieved very much at all. Anyway, it may be worth looking back and reflecting as we prepare for yet another year. The years certainly fly by so quickly as one gets older, which I wrote about many years ago, but cannot find that particular blog.

As I have a lot of new followers of this blog, I thought I’d highlight a few from over the years (easier than writing a new one, by the way!). The grief of dementia is one of the most unspoken of topics, not our grief families feel as we change and lose function, then die, but the grief we feel as we lose capacity and as our abilities change to disabilities, and we are…

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“Failure to maintain”: do hospitals cause suffering in older people?

Today Palliverse talks to Assistant Professor Kasia Bail (@Kasia_Bail) from the University of Canberra. Kasia is a nurse, a researcher, a kung fu instructor and a drummer in a metal band. She came to our attention via social media when we noticed her crowdfunding campaign for the next stage of her research into nursing care of complex, hospitalised older people. Here at Palliverse we are fans of crowdfunding, although we’re yet to use it for research purposes!

Kasia’s research aims to improve sustainable acute care health delivery for an ageing population, while her clinical experience includes general medical and acute palliative care. In her PhD, Kasia developed an approach to measure nurse-sensitive outcomes, which is currently being used to evaluate a Government-funded implementation of a cognitive identifier. Kasia has a passion for identifying and researching the structures and processes which impede or enable quality patient care, and sharing her learning and inquiry with nursing students, industry and professional groups. Here, Palliverse asks her about her latest research project and dipping her toe into the world of social media.

kasiabail

Dr Kasia Bail (image via Dr Bail)

Your research has led to a new concept in the care of older people with complex medical problems, “Failure to Maintain”. What does this mean? Continue reading

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

A Christmas wish…

A Christmas wish from Kate Swaffer

Creating life with words: Inspiration, love and truth

Screen Shot 2015-12-11 at 9.59.54 am

Yes, I am suffering…
but only some of the time
not every moment of every day

And, importantly…
not always from dementia
more often from the language of dementia

The symptoms of dementia
do not consume me
one hundred percent of the time

Only some moments
of some days
and definitely not all days

So why then must others
with and without dementia
exacerbate the suffering and stigma

by labelling me
a sufferer
ALL of the time?

Please do not label me a sufferer
This is my one and only
Christmas wish

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Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to the 23rd edition of Elsewhere in the Palliverse. I hope you find value in this week’s links about palliative care and research – complete with animal story.

You’re welcome, animal-lovers.

As always, please share your thoughts in the comments.


Brand new blog DocGrief is “a dedicated space for health professionals to reflect and explore our relationship with death and grief, particularly when personally affected by a death in the family.” It was started by a rural GP based in South Australia. Her first post is heartfelt and I am following with interest. Continue reading

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

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

I hope you enjoy this week’s reads, which include topics like wills, funerals, dementia, research ethics and the experience of a hospice nurse who becomes carer for her mother. I hope there’s no typos – I’m rushing off to a communication skills workshop but wanted to post this before I leave.

As always, please leave your thoughts in the comments box below.

Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavoHere’s the latest collection of reads for your weekend, with palliative care news from around the world, research and social media advice, and a palliative pet care story. As always, please enjoy and share your thoughts in the comments below.

Today is World Refugee Day, at a time when world refugee numbers are at their highest since WWII. A new Palliative Care in Complex Humanitarian Emergencies (PALCHE) network has launched to help address the unmet palliative care needs of the world’s >60 million refugees. Read about it (and find out how to get involved) at ehospice.

Happy 10th Birthday, Pallimed! Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

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)

Continue reading

Is the health system designed to crush the creativity and spirit of health professionals?

Do you ever feel like health professional education and the health system are designed to take talented, intelligent, creative individuals and turn them into machines with no ability to innovate? Do you find yourself banging your head against a wall when even the smallest change for improvement requires hours of paperwork (that you probably submitted via fax), approval by numerous committees and months of waiting? Do you feel trapped in a health care silo? Do you feel ridiculous attending “multidisciplinary” meetings when the multiple disciplines are merely different specialties within your own profession?

If the answer to any of these questions is “Yes”, please keep reading. Continue reading