For this discussion, aged care refers to the additional care required for an older person needing regular health professional input either in the community or in an aged care home. Palliative care is, according to the WHO (World Health Organisation), ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’.
When palliative care was introduced in the 1980s, it was restricted to adult patients with a diagnosis of cancer and a prognosis of six months or less. The criteria have now broadened to include all incurable diseases. Currently, most older people entering residential care or requiring additional community nursing care have conditions such as chronic lung disease, osteoarthritis, diabetes, kidney disease, and neurological conditions. While most aged care workers are aware of the increasing dementia statistics, not all are aware that dementia is an incurable disease which will end in death. Palliative care experts who may be very competent in managing symptoms of end stage cancer may not be as familiar with end stage dementia. This very challenging disease requires the application of ‘impeccable assessment’, particularly when the older person is unable to describe their symptoms or articulate their distress. Many have several other incurable comorbidities, including cancer.
The average length of stay from admission to death in nursing homes is around 12 months, with a considerable proportion dying within the first three to six months. This means that, because of their diagnoses, most nursing home residents fit the criteria for palliative care.
In my ten years as a community nurse (RDNS supervisor) and twelve years’ experience as a director of nursing/manager of a nursing home, many patients and residents have never been told of their diagnoses, let alone their prognoses, nor the benefits available through palliative care. ‘It’s too early for palliative care’ is the all-too-common opinion, even of health professionals. The logical rejoinder to this statement is ‘when is the right time?’
One of the meanings of ‘palliate’ is ‘to cover with a cloak of care’. Looking closely at the WHO definition, it is evident that most aged care residents and community clients/patients would benefit from the impeccable assessment, closely monitored symptom management, and carefully applied cloak of comfort palliative care offers. Some treating doctors are unaware of the application of palliative care principles in residential or community care. These factors, together with broader community lack of understanding, mean that many older people are missing out on comprehensive end-of-life care.
One of the most common misunderstandings of palliative care in aged care is that ‘opioids hasten death’. Consequently, the principles of pain management involving regular analgesia for the continuous pain often associated with the comorbidities mentioned above give way to the ubiquitous ‘prn’ medication. Ignoring the ‘impeccable assessment’ associated with palliative care, the ‘whenever necessary’ is all too often left to the individual subjective judgement of nurses and doctors. When aged care health professionals are not confident about the most appropriate analgesic regimen in this context, a referral to their regional palliative care service is recommended.
To ask what is the difference between aged care and palliative care is to focus on the impeccable assessment of every older person who can no longer live independently and ask whether they would benefit from the least burdensome form of care and to be offered the best form of comfort care until the end of life.
Families are often uninformed about the relationship between aged care and palliative care, evidenced by this brief case example:
Joan’s family had assumed she was ‘no longer there’, due to her end stage dementia, but they did not wish to see her suffer. It seemed a hopeless situation as Joan could not explain her distress or calculate her pain level. A well-informed nurse suggested referral to the palliative care service for advice. Joan’s family were assured that, even within the seemingly ‘hopeless’ context of dementia, hope could flourish. Not hope for a magic cure, but hope kept alive by impeccable assessment, relief of distressing symptoms, and appropriate comfort measures until she died.
Comfort care is optimized when there is a seamless merging of aged care and palliative care, as the writer ‘Anonymous’ opined:
To cure sometimes
To relieve often
To comfort always
Links to relevant resources:
Assoc Prof Rosalie Hudson (RN, Dip Arts, B App Sci, B Theol, M Theol, Grad Dip Geront., PhD) is an Honorary Senior Fellow, School of Nursing & Social Work, University of Melbourne, Adjunct Associate Professor, Charles Sturt University, and a Consultant educator in palliative aged care and dementia care.