“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.

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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

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.