This is an interesting and pertinent article. However, I question the response of the lead author, Associate Professor Debbie Horsfall, who states that 80 per cent of Australians would prefer to die at home in familiar surroundings and in the presence of family, but only 20 percent of people are able to do so.
To make a fully informed response, it would be necessary to know the complete demographic of Assoc. Prof. Horsefalls subject base.
There are many issues to be addressed. People may prefer to die at home but is this possible? Deaths related to neurological disorders, the many differing types of dementias is now the 2nd highest cause of death in Australia (ABS MARCH 21 2015). Our lifestyle no longer supports the extended family situation as in past generations. People are required to work longer to ensure an adequate retirement. How do caregivers manage with minimal support and illnesses that requires caregiving over an extended period of time? Many 50 to 60-year-olds, primary caregivers are female. They give up careers and their lives to care for elderly and infirm parents. It is not uncommon to be caring for both parents. The physical and emotional strain is intense. Family doctors and social workers are aware of caregiver stress and burnout. Adult children are assuming the burden of managing their parent’s finances as well. Relationships are often a casualty along the way. Individuals may relocate to assist parents who have moved away to a ‘retirement area’. This in itself may cause issues when the individual’s support network is no longer available and children and grandchildren are no longer close.
There are so many factors to be considered when talking about dying at home. There is so little affordable assistance actually provided to assist in keeping a long term terminally ill person in their own home. Help during the day is available and wonderful, as is respite care if the person is accepting of this. The lack of assistance from dusk till dawn has an enormous impact on a 24x7x365 caregiver. Lack of sleep and disturbed sleep leads to illness, guilt and incapacity of the caregiver.
I have strayed somewhat from Prof Horsefalls statement, but it is not a cut and dried situation. Who cares for people in their own home? Who supports the caregivers? How is it funded? The current government funding is worse than inadequate it is almost useless. How does caregiving for extended periods of time impact on the emotional, physical and fiscal well-being of the caregiver? How does it impact marital relationships and relationships with the caregivers own family? When you are caregiving you are isolated and forgotten friends melt away and support systems become non-existent. It would be wonderful if we could all die peacefully in our own home surrounded by loving family members. For many that is simply unachievable due to cost factors and family constructs. And for some the toll of dealing with the illness over long extended periods is simply too overwhelming.