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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
Wandering around your city or town, have you ever seen ‘pop-up’ chalk boards inviting you to contribute your thoughts on an issue affecting us all? If you were asked what one thing you’d want before you die, what would it be? Travel to a dreamt-of place? Marry your beloved? See your grandchildren born? See Collingwood win the AFL Grand Final (go the ‘pies!)?
Chances are you’ll see a ‘Before I die, I want to…’ board somewhere (Before I Die website). It’s an initiative that encourages open dialogue about death with the hope that it will engender compassion for those in our community who are living with a life-limiting illness. It’s a bit like a bucket list, really.
The 21st Century has exposed us to vast stories of loss and grief affecting many people in communities worldwide. The upsurge of these catastrophic events has altered the way we view the world and the way we relate to others in our communities. Often distressing events intrinsically motivate us to seek support via our own networks of family, friends and community; ultimately in times of crises we are reliant on one another for comfort as we continue to grieve individually and collectively. However, sometimes people turn inwards to grieve and support from the community is ignored. Recognising different grieving styles is imperative in grief therapy and explored herein.
Health professionals need to know the law that governs withholding and withdrawing life-sustaining treatment. Law is not at the centre of the clinical encounter, but it is part of the regulatory framework that governs these decisions. Failure to know and follow the law puts health professionals and their patients at risk. But we know there are gaps in health professionals’ legal knowledge in this area and this is not surprising either, given how complex and difficult this field of law is.
As a young doctor I spent some time working in a palliative care hospital in the early 90’s. It was such a privilege to be working with people at end of life - with the opportunity to make a difference to quality of life and well-being of patients, and their family members. That experience made me decide to devote my career to Palliative Medicine.
I had some experiences at that time that stayed with me.
I had a patient, Marion, who had been a school principal. Marion had suffered a severe stroke. She had survived but was very incapacitated, confined to bed and unable to communicate. She was being kept alive, surviving on a feeding tube, and facing a life of care and dependence. Her specialist was very committed to her survival.
When someone has an incurable disease like advanced cancer or motor neurone disease, they experience many changes, one of which is functional decline. Although functional decline is inevitable at the end-of-life, the drive for people to remain as independent as possible is actually heightened at this time. The occupational therapist (OT) has two key roles to play here. Firstly, they play an active role in optimising a person’s independence and participation as function declines. Secondly, by supporting active participation in everyday activities to the best of a person’s ability, the OT can support people to come to terms with bodily deterioration and pending death. I’ll look at these two concepts in more detail.