Dying at home: Demystifying dying and reskilling families

An article written by Professor Davina Porock, VC Professorial Research Fellow, Director, Centre for Research in Aged Care, School of Nursing and Midwifery, Edith Cowan University

Providing care at home for the sick and dying is difficult to sustain in our current social and economic situation. In Australia we have small families [1], most if not all adults in the family work outside the home to make ends meet, and many of our family members, particularly in our migrant families, are geographically spread. This makes caring very difficult to sustain, particularly over many months or years, leading us to “outsource” care to residential and home care services.

If we were to turn back the pages of history to somewhere in the Victorian era, we would find that most deaths occurred at home. People were cared for by family members and, for those who could afford it, servants or private nurses. In those days, of course, mortality rates were high, and life-expectancy was low. The pain and symptom management that we know and value today was not available and so, to deal with the suffering, dying was infused with religious sensibility. Interestingly, at the same time dying was romanticised in prose, fiction, and poetry and there were clear expectations that the dying should bear their suffering well. Children were often visitors and helpers in the sick room and, as a result, became familiar with care and the dying process, taking that knowledge with them to care for the next generation.

As advances in medicine enabled terminal illnesses to become chronic conditions, care of the dying became the province of professionals, making hospitals and residential aged care facilities (RACFs) the place of death. Indeed, 80% of all Australian deaths now occur in those two places.

Although 70% of Australians say they would prefer to die at home being cared for by family, less than 15% do. This statistic doesn’t seem to have changed despite more aged care being provided at home than in RACFs.  So, even though all health policy is required to be ‘person centred’, honouring personal values and preferences, death at home is mostly denied to the dying.

So how are we to change this situation? Two areas have been addressed.

• Advanced care planning with provision of surrogate decision makers has been promoted for many years.
• Developing in families and home care services the capability to provide end-of-life care at home. We are seeing some policy support for this with the promise of an additional funding in home care for the last three months of life.

But more is required to build wide social acceptance of dying at home and improve conditions when that is not possible. Here is a short list.

1. Boldness and candour from health professionals to provide realistic information about the end stages of chronic conditions. This would give the dying the opportunity to make a timely decision to return home while they still can in relative comfort.
2. Death literacy (including advance care planning and grief) must become a public health priority.
3. Employers need to understand the extended caring role when an employee’s family member is at the end of life and the return on investment by arranging flexible leave and support.
4. Around one in five people receiving aged care at home do not have any family close by or available. We need social programs, volunteers, and community services to reduce or prevent social isolation and unnecessary use of residential care rather than clinical interventions.
5. Given our longevity even with chronic conditions that result in many deaths occurring in residential care – let’s make residential care more like home enabling families to help provide care near the end of life.
6. Given that 80% of residents in residential care will die there, let’s transform the goals of residential care into long term palliative care. The goals of long-term palliative care are comfort and maintenance of function where possible.
    

Footnote

1. Family is used here as shorthand to indicate those who are most important to you whether by blood, partnership, or choice.
    

Authors

Professor Davina Porock

VC Professorial Research Fellow,  Director, Centre for Research in Aged Care

School of Nursing and Midwifery, Edith Cowan University