Guidelines for a Palliative Approach in Residential Aged Care

This list may serve as a reminder for the aged care team to assess these issues each time they are
aware of a resident’s imminent death, so they can take comprehensive steps towards optimal
end-of-life care. The list may also act as an agenda for a family conference, prompting the
resident and their family to express their ideas of what optimal end-of-life care means to them.
It is also important at this time to determine the appropriateness of unwanted or unhelpful
interventions (also known as ‘clinical futility’) for residents who are dying. Determining clinical
futility is a step towards providing a successful palliative and end-of-life approach [24] (Level
QE). For residents without an established advance care plan (see Chapter 4, ‘Advance care
planning’), particularly when discussions regarding end-of-life wishes have been unfruitful or
have not occurred, clinical futility can be an issue for the resident, their family and carers, and
the aged care team [23] (Level QE).
14.2 RECOGNISING WHEN A RESIDENT IS DYING
Yedidia and MacGregor (2001) [395] (Level QE) have identified seven themes that characterise
the attitudes and perspectives that people may confront when dying. These themes are; struggle
(living and dying are difficult), dissonance (dying is not living), endurance (triumph of inner
strength), coping (finding a new balance), incorporation (belief system accommodates death),
quest (seeking meaning in death), and volatile (unresolved and unresigned). Aged care team
members familiarity with such life and dying themes may facilitate their provision of more
appropriate care and support for residents.
The capacity of individual’s who are dying to accept their impending death seems to be
positively affected when their primary caregiver accepts death and the terminal prognosis is
appropriately communicated [396] (Level QE).
End-of-life care refers to the phase where death may be expected within a period of hours to
several days. Determining when the terminal phase has commenced may be difficult. Most
residents have multiple clinical diagnoses involving multi-system pathology, and the diagnosis
of dying is often made only by exclusion. [397] There are different illness trajectories for people
with cancer, organ system failure and dementia (as shown in Figure 4):
• Cancer. Residents diagnosed with cancer have a more predictable course and can usually
perform activities of daily living until quite late in their disease process (see Section 2.2.1,
‘Prognostication’, for further details).
• Organ system failure. Residents dying of chronic organ system failure tend to follow a second
trajectory. With conditions such as heart failure, obstructive lung disease and cirrhosis, those
affected may be ill for many months or even years, with occasional exacerbations. Each
exacerbation may trigger fears of death, with uncertainty regarding the resident’s ability to
recover from the most recent episodes.
• Dementia/frailty. A large and increasing number of people with progressive disabilities such as
strokes, dementia and frailty due to old age may experience a third trajectory and need longterm
help with activities of daily living; they will generally experience a more gradual decline
in health [13] (Level QE). The most common symptoms during the last year of a person’s life
with dementia are mental confusion (83%), urinary incontinence (72%), pain (64%), low
162 Guidelines for a Palliative Approach in Residential Aged Care