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Responding to the Mental Health concerns
of people living with an advanced chronic and terminal illness
and their family and care givers
The LAR project has been funded by the Commonwealth
Government under the Public Health Chronic Disease and
Palliative Care Program.
A simple definition of the Treatment Gap:
is the number of people with an illness, disease or
disorder who need treatment but who do not get it.
(Rajendra Kale, The Treatment Gap. Epilepsia Vol 43, Issue Supplement S6 pg 31-33,July 2002)
Mental disorders are highly prevalent and cause
considerable suffering and disease burden. To
compound this public health problem many
individuals with psychiatric disorders remain
untreated although effective treatment exists…
The Treatment Gap
(Kohn,R. et al The treatment gap in mental health care. Bulletin: World Health Organ vol 82 n.1
Having a life limiting illness does not preclude the
possibility of having a pre-existing mental illness
one developing as a result of the psychological
impact of the diagnosis or the prognosis
Whilst mental illness does not threaten life
or decrease life expectancy of itself, it can
have a severe impact on a person’s health
and wellbeing
Traditional mental health responses and mental health
systems may not work quickly enough to be of primary
therapeutic value for patients with life limiting illness
coping with limited and uncertain life expectancy.
Delivering an evidence based therapeutic response to this
population group needs specialised training and
understanding that takes into account the impacts of
chronic illness and treatments.
Depressed people were particularly at high risk of suicide ideation
and are four times more likely to report a high desire for hastened
death than those who were not diagnosed with major depression
Hopelessness is significantly related to suicide ideation and is a
stronger predictor than severity of depression
Pre existing psychiatric issues/ disorders increases the risk for
hastened death and suicide ideation
A diagnosis of mental illness in people with a life
limiting illness cannot be treated separately from the
nature and impact of the person’s illness and the
reactions of the family and care givers to the
realisation of impending death and bereavement
Chronic illness makes up more than 70% of Australia’s overall disease
Chronic mental illness is estimated to effect one in five Australians,2
and is defined as mental illness that lasts for 12 months or more.
There is growing concern about the impact that a co-morbid
mental illness can have on the patient approaching end of
Ref: Vos T, Goss J, Begg S, Mann N. Australian burden of disease and injury study: projected health care costs report. Brisbane: University of Queensland and Australian Insitute
of Health and Welfare; 2005.
For those patients with heightened symptoms of their mental illness
such as delirium, delusions, and hallucinations - specialist
psychological support and care is critical when receiving palliative
Ref: Vos T, Goss J, Begg S, Mann N. Australian burden of disease and injury study: projected health care costs report. Brisbane: University
of Queensland and Australian Insitute of Health and Welfare; 2005.
Individuals with a serious mental illness are:
• at greater risk of poorer physiological health and increased mortality.
A person’s negative belief about their mental health is known to be
significantly predictive of a poor physical health outcome.
People with mental illness are also less likely to seek regular check-ups and
less likely to report early symptoms to a medical practitioner often resulting in
a diagnosis not being made until the disease state has become terminal
Ref: Baker A. Palliative and end-of-life care in the serious and persistently mentally ill population. Am Psychiatr Nurs Assoc 2005;11: 398–03.
Scott D, Happell B. The high prevalence of poor physical health and unhealthy lifestyle behaviours in individuals with severe mental illness. Issues Ment Health Nurs 2011;32(9):589–97.
Lobban F, Barrowclough C, Jones S. The impact of beliefs about mental health problems and coping on outcome in schizophrenia. Psychol Med 2004;34:1165–76.
Disability Rights Commission. Equal treatment: closing the gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental
health problems. 2006.
Mental illness complicates many normal interpersonal
and cognitive functions and some patients
with a serious mental illness will also have reduced
insight and comprehension.
Patients may also be
dealing with the effects of psychotherapeutic medications,
such as anti-psychotic, anti-depressant, and
anti-mania drugs.
The symptoms of the mental illness and the treatment
regime, when mixed with the symptoms of the life-limiting
illness and its treatment regime, create a
psycho/physiological state that
is difficult to exist in for the patient,
The care of a person who is dying and who has a serious
and is equally complicated for the clinician.
and persistent mental illness requires a different
approach, which not only meets the person’s current
needs, but also anticipates future mental health needs
that may manifest as a result of a life-limiting diagnosis.4
What about families and care givers?
Families/carers of people with a MH issue - may have spent lifetime
co-existing with their loved one’s mental illness – this can create
considerable social and familial challenges.
While many take on the role of carer because there is a societal
expectation that they do so their desire/willingness to continue in
this role now that the person is dying from a physiological illness
may not be so clear cut, needs to be determined.
Aoun S, Kristjanson L, Currow D, Hudson P. Caregiving for the terminally ill: at what cost? Palliat Med 2005;7:551–5.
Rowe J. Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals. J
Psychiatr Ment Health Nurs 2012;19(1):70–82.
Even the most disadvantaged Australians should be
able to lead a ‘contributing life’, whatever that
means for them …
Prof Allan Fels AO
Chair: National Mental Health Commission (2015)
Why should we do this?
The National Mental Health Commission stated in their 2015 National
Mental Health Survey…
“people with a MH conditions were twice as likely than those that didn’t
have a MH condition to develop a serious chronic illness and to die earlier
form the disease”.
“People with chronic illness were twice as likely than people without a
chronic illness to develop a MH condition or psychological distress.”
People with a terminal illness deserve to live a “Contributing
Life” as defined by the MH Commission
"When we talk about a contributing life, we mean a fulfilling
life - recognising that those people who live with mental health
difficulties want and need the same things as everyone else.“
Prof Allan Fels. AO. Chair - National MH Commission
Contributing lives, thriving communites – Review of Mental Health Programmes and Services,-thrivingcommunities- review-of-mental-health-programmes-and-services.aspx
Davies, J., A Manual of Mental Health Care In General Practice. National Mental Health
Strategy Comm Dept of Health & Aged Care
ISBN 0 642 41587 0
Kale, R., The Treatment Gap. Epilepsia Volume 43, issue Supplement s6, pages31-33, July
Kohn,R., Saxena, S., Levav, I., & Saraceno, B.,
The treatment gap in mental health care. Bull
World Health Organ vol 82 n.11 Genebra Nov. 2004 96862004001100011