Meera Agar, University of Technology Sydney
Delirium robs dying people of their autonomy, dignity and last conversations with loved ones, at a time when every moment is precious.
Symptoms are highly distressing to experience and watch. Confusion, incoherent communication, poor attention, agitation, drowsiness and hallucinations are some markers of this common complication for people dying in hospital from cancer and other advanced illnesses. On average one in three people in end-of-life hospital care are affected.
Doctors commonly prescribe antipsychotic medications to try to relieve these symptoms. However, our study just published in JAMA Internal Medicine, raises serious concerns about their safety and efficacy.
So, what are we to do for people experiencing delirium, who are robbed of their mental awareness and ability to communicate?
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.
Michael loved the Australian bush. Photo: Wayne Robinson
‘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