Transcript Session 1: Patient Journey - Listen, Acknowledge, Respond

LISTEN ACKNOWLEDGE RESPOND
“MIND THE GAP”
MAPPING THE PATIENT JOURNEY
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.
“MIND THE GAP”
DEFINITIONS
“MIND THE GAP”
What is Palliative Care?
Palliative care has been defined as: “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.”
World Health Organisation. (2004). Better Palliative Care for Older People. Prepared by Davies, E. & Higginson, I., J. World Health Organisation.
“MIND THE GAP”
Palliative care:
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own
bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement
counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended
to prolong life, such as chemotherapy or radiation therapy, and includes those investigations
needed to better understand and manage distressing clinical complications.
This is the definition adopted by the Palliative Care Intergovernmental Forum as the national
definition of palliative care. (Ref: National Palliative Care Strategy (2010)
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Palliation means “to cover with a cloak”, “to cover up”
…….. care aims at opening up the life of the mind when life goes away
from the body, in times of uncertainty, unpredictability and undefined
length of survival….preventing disabled patients from...waiting for
death, and helping them to experience their situation in a meaningful,
if not a positive way.
Sirois, F., 2012 pg 206
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Chronic condition:
“A biological or physical condition where the natural evolution of the
condition can significantly impact on a person’s overall quality of life,
including an irreversible inability to perform basic physical and social
functions.
Serious and persistent chronic conditions are multidimensional,
interdependent, complex and ongoing. Chronic and complex conditions
are characterised by persistent and recurring health consequences lasting
for an extended period of time”.
Australian Government Department of Health and Ageing. (2010) Supporting Australians to Live Well at the End of Life: National Palliative Care Strategy–2010. p
19. Palliative Care Australia. (2008) Palliative and End-of-life Care: Glossary of Terms, 1st ed. p 5.
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Disease Trajectories:
CHRONIC
ILLNESS
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Disease Trajectories
Three distinct illness trajectories have been described:
• a trajectory with steady progression and usually a clear
terminal phase, mostly cancer;
• a trajectory with gradual decline, punctuated by episodes
of acute deterioration and some recovery, with more
sudden, seemingly unexpected death (for example,
respiratory and heart failure) ;
• a trajectory with prolonged gradual decline (typical of frail
elderly people or people with dementia).
“MIND THE GAP”
End-of-life:
“The international definition is ‘last two years of life’.
By comparison the term used in the Northern Territory is ‘the final
five days’. The average time people are on end of life care is 37
hours”.
(Ref: Australian Government Department of Health and Ageing. (2010). Supporting Australians to Live Well at the End of Life: National
Palliative Care Strategy–2010. p19. )
The Treatment Gap we refer to in this training relates to the last
twelve months or so of a person’s life, or approximately 400 days.
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Difficulty in defining “end of life”
• Assumption about comfort care holistic care to dying patients
and their families
• Hard to predict time frames if EOL is left to just weeks/days
• Many people know that they may die, but have not had a
“Palliative” diagnosis by their medical team.
“ EOL should not be defined from a medical perspective based on a
presence of a terminal illness or estimate time frame remaining, but
should be based on a broader view of life and journey towards an
inevitable EOL”. Shigeko et al (2012)
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“ …EOL care:
“The assistance of people who are facing imminent or distant death
to have the best quality of life possible till the end of their life
regardless of their medial diagnosis, health condition or age.”
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Understanding the psychological impact of living
with an advanced chronic or terminal illness on
the patient journey
WHAT DOES THE EVIDENCE TELL US?
“MIND THE GAP”
Mental illness in people with an advanced
chronic and life limiting illness is under
diagnosed and undertreated.
People generally underreport their distress and
there is an expectation by health care
professionals and the community at large that
dying people will and should experience
depression, anxiety and sadness
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Psychological distress in patients with serious medical
illnesses is best understood as existing along a continuum;
Fear, sadness and grief (at varying times in response to their
disease), others may progress to develop more clinically
significant conditions
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Psychological morbidity, such as depression, anxiety,
and adjustment disorders, are common in cancer
patients
Prevalence:
Cancer: 35 and 50%
Stroke Survivors: 19- 23%
Parkinson’s Disease: 50%
Dementia : 20-30%
Ref:
Marks. S; Heinrich.T. (2013) Assessing and Treating Depression in Palliative Care patients. Current Psychiatry. V12. No8
Pessin.H; Rosenberg.B; Breitbart.W.; (2002) Assessing psychological distress at the end of life. American Behavorial Scientist. Vol 46. No3
O’Connor et al (2010) The prevalence of anxiety and depression in palliative care patients in Western Australia and NSW. MJA. 193. S44-S47
“MIND THE GAP”
Despite its pervasive nature, the literature consistently
indicates that psychological distress in palliative
patients tends to be under- diagnosed and undertreated
Given its effect on patient well-being, social
functioning, perceptions of symptom
distress and length of hospital stay, research
suggests that the importance of proper
recognition and treatment of psychological
distress cannot be overstated.
“MIND THE GAP”
We have to believe that responding to psychological issues
matters for people regardless of how long they have to live and
it can make a difference to the rest of their lives.
We have to believe that it can impact on their legacy and impact
on the bereavement of those left behind.
“MIND THE GAP”
So what is the patient journey, for people with
advanced chronic and life limiting illnesses and
that of their care givers and family in primary
health care, accessing mental health care and
support
“MIND THE GAP”
THE PATIENT JOURNEY : JOHN
• 78 yr old son of an Italian immigrant
• Large extended family – 2 older brothers and niece died of brain tumours
• Older brother retired Haemotology specialist at large teaching hospital. 2 nephews
medical specialists
• Wife a nurse (retired)
• Identifies as Conservative, Catholic, small “l” liberal, politically active and a
philanthropist
• Runs a large accounting business, manages 2 NFP Charities, director of several Boards
• Back surgery – Sciatica, Padgett's Disease (brother also had Padgett’s)
• Diagnosed with Stage 1 bowel cancer when 60
• Diagnosed with Stage 2 Prostate Cancer at 68
• Diagnosed with Neuroendocrine tumour of the liver at 74
• Metastatic Prostate Cancer – brain, bones, liver at 75
• No previous MH diagnosis
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John.
• Initial treatment with private oncologists and urologists
• Bowel resection – no chemotherapy
• Prostate – hormone therapy, no surgery
• Liver tumour – too large for surgery – late diagnosis as symptoms were
similar to prostate hormone therapy
• Always believed he was cured
• Described his strong faith – bargaining with God for cure
Wife
• Advanced ischaemic heart and vascular disease
• Multiple cardiac surgeries
• On multiple medications
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JOHN
• Referral to psychologist at major Oncology Hospital – he was struggling with his
emotions, fearful of stopping work, disengaging with his family
• Diagnosed with paranoia with grandiose delusions with anxiety and depression
• Prescribed – antidepressant, sleeping tablet, mood stabiliser
• Described being angry that he couldn’t work or think straight – thinking and writing
was important to him
• Described sweating – hot flushes – at important meetings with bankers – intense
embarrassment
• Large weight gain, had difficulty walking, described being incontinent and ‘smelly’
• Sons managed the family business
Wife
• Diagnosed by GP as having anxiety – no treatment
• Still angry 4 years after husband’s death – was told this was normal stage of grief
• Recent fracture of hip, wrist, multiple falls
• Has been diagnosed with end stage heart failure
• Has to stop driving, close friend died, husband’s older brother in nursing home.
“MIND THE GAP”
So what is the patient journey, for people with
advanced chronic and life limiting illnesses and
that of their care givers and family in primary
health care, accessing mental health care and
support
http://www.pallcarevic.asn.au/library-media/margarets-story-about-palliative-care-for-her-husband/
“MIND THE GAP”