I recall the mantra in the early days of palliative care being ‘doing ourselves out of a job’. While perhaps glib, it is certainly the way I have practiced over many years – empowering families to do what they could in supporting their dying family member; teaching students from a range of health disciplines to become familiar with the dying process, which can occur in any health setting; and in policy and advocacy work, informing decision-makers and funders about the intricacies of good palliative care, while mounting demonstrable funding arguments.
All strategies were underpinned by the goal to spread the message that dying belongs to everyone, not just the professional few. It is perplexing then to watch evolving models of end-of-life care in aged care settings, which are heavily dependent on the external clinical support of palliative care services. Perhaps this is only an Australian issue, but I suspect not! A three-year government-commissioned inquiry (Royal Commission) into aged care revealed many interrelated and complicated issues, but there remain basic system and processes issues, including the following questions:
1) How do relatives of older people base decisions about what is a ‘good’ aged care home?
There is a disconnection between preparing staff to care for people with an emphasis on social and environmental aspects of care, against the increasing healthcare needs of very old, frail and dependent people who require significant health care supports. So, is the aged care facility a home, or a place for healthcare?
Because aged care homes are often marketed to families using a social lens of care, when making decisions about where to place their relative, hotel-like facilities can be seductive – manicured gardens, modern amenities in single rooms, happy hour and the cafe. And while not negating a comfortable environment, emphasis on meeting the holistic needs of older people would encompass different healthcare needs; and access to other aspects of care like spiritual care and counselling.
2. Why is dying so unexpected in aged care settings?
Most people go into residential aged care as their final home, and these days are usually frail, with complex needs, meaning that most will die there. Yet, this is not necessarily included in initial information provided to a resident and their family, like establishing goals in planning care, and including preparing for the dying process.
In Australia, personal carers now form the main staff in aged care homes; most seem run off their feet, with the workload and physical demands, for which they receive minimal remuneration. These staff are insufficiently trained to prepare and sustain them in care for the older person and their family. There is little staff professional skill in unique aspects like recognising deterioration and alleviating symptoms; advance care planning for a good death; educating families about what may happen; and involving the general practitioner to ensure appropriate medicines are available.
Is it any wonder then that deterioration in an older person is regarded as a crisis and not the beginning of a decline towards death? If dying and death is so integral to what happens to an older person in this setting, there must be benefits in aged care staff themselves possessing relevant skills to manage an individual’s journey to the end of their life.
And while there are excellent resources to support aged care staff in their care of a dying resident, a casualised and mobile workforce makes it difficult to see the impact of such training, which more rightly should occur in initial training. The acceptability of such a low-skilled staffing profile has been challenged by the Royal Commission, given the profile of residents described above.
3. What happens when an older person has a crisis?
When a crisis occurs, organisational protocols usually dictate that family members be informed; and often through lack of preparation, they insist that their relative be transferred to the emergency department for treatment. While in some instances this may be warranted, too often it is because of the lack of staff skill and the resources to manage what is happening to the person where they live.
Removing an older person from their familiar environment to a busy, noisy and brightly-lit emergency department can exacerbate disorientation, confusion or agitation. Some acute hospitals utilise clinical teams to visit and assess the person in their aged care home, thus sometimes alleviating hospital transfer; and palliative care teams may become involved if it is evident that the person is dying. But this dependence on external skills again highlights the paucity of skill among the staff themselves.
It is these systemic issues that require addressing, to develop a model of care that is equitable both for those requiring care at the final stage of their life, as well as supporting those seeking to provide that care in the best possible way. The Australian Inquiry addresses numbers of these issues, but unfortunately, early responses are couched only in financial terms. It is hoped that significant political commitment will address the complexity of the issues – to provide a more adequate holistic path for the person dying in an aged care home; and to equip staff with the skills that will ‘do palliative care staff out of their job’.
Margaret O’Connor is a registered nurse, who wrote her doctoral thesis on palliative care in aged care settings in 2002. Many of the questions she raises have endured since that time. Margaret works at Melbourne City Mission Palliative Care in Melbourne, Australia and is Emeritus Professor of Nursing at Monash University.