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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.
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.
Move it or lose it, as the saying goes, is relevant to the field of palliative care. In fact, evidence suggests that up to 30% of muscle weakness in advanced illness can be due to inactivity itself.
Physiotherapists are in a prime position to make a difference to how patients experience end of life by helping them maximise their independence at each stage. Expertise in functional assessment combined with an understanding of the impact of symptoms on the lived experience enables therapists to work closely with patients to improve their quality of life (QOL).
Let’s be frank, end-of-life care can be tricky. Yes, dying is normal, but it hasn’t been a major focus in the acute hospital systems. Health care professionals working in acute hospitals can find themselves challenged by patients with end-of-life care needs. Doctors, nurses and allied health professionals can be in a situation where they do not know how to best respond to a patient with end-of-life needs. Appropriate end-of-life interventions can be missed.
With 52% of Australians dying in acute hospitals, end-of-life care is essential knowledge for all health care professionals.
National Carers Week provides us all with an opportunity to stop and think about the care that is needed by palliative care patients and that is given by carers to someone with a life limiting illness. Anyone, at any time, can find themselves responsible for the wellbeing of a partner, family member or friend at the end of their life. Most Australians who know they are going to die spend most of the last year of their life in the community – in their own home, in residential aged care or living with family or friends. This would not be possible without the willingness of people to take on a caring role.
I often hear people say that once a person enters a residential aged care facility that the caring role provided by the person’s family and friends is no longer required, and yet this couldn’t be further from the truth. Aged care staff encourage family and friends to stay actively involved in a person’s life. There are many obvious reasons why this is so necessary.
Moving homes is generally a stressful and emotional time and, for residential aged care, this can be further exacerbated by the fact that it is often in response to a crisis. Someone’s mother has been admitted to hospital after a nasty fall or the care requirements of someone’s husband has increased because their diabetes isn’t being well managed. Therefore, not only are people having to make important decisions about where they, or their loved one, is going to live, but this is generally during a time when emotions are high and various members of the family may have different opinions.