ADJUSTING TO YOUR
PROGNOSIS
Jane Turner
Discipline of Psychiatry
School of Medicine
Brain Tumour Support and Education Forum
May, 2012
FACING AN
UNCERTAIN FUTURE
Brain Tumour Support and Education Forum
May, 2012
IN THE BLINK OF AN EYE
“We were excited. We were sitting with friends on the
verandah making plans for Tony’s birthday, just
sitting around and relaxing.
Jack said that he would pop down to the frig to get
some cold drinks. When he stood up he said he
didn’t feel well. Then he collapsed.
The trip to hospital felt like a dream. People
everywhere. Tests. Lots of doctors. Going to have
a CT scan. Then the news – just like that.
And life was never the same again.”
Helen, aged 42 years
Brain Tumour Support and Education Forum
May, 2012
THE CHALLENGE OF
THE DIAGNOSIS
Never anticipated
“Like being hit by a cosmic 4X2”
Complexity of medical appointments - who are all these
people?
Waiting for information - getting information you can
understand
Waiting for results
Telling family and friends
Making treatment decisions
Coping with treatment
Brain Tumour Support and Education Forum
May, 2012
WHAT MIGHT HELP?
In general, an active problem-solving approach helps
Brain Tumour Alliance Australia:
 http://www.btaa.org.au/
 1800 857 221
Fatigue often leads to a cycle of rest, deconditioning and
lower energy
Expressing feelings is generally helpful:
 No evidence that “being positive” will affect the
outcome
 There are “tears to be shed”
Open communication is important for families
 The truth hurts but secrets hurt more
Brain Tumour Support and Education Forum
May, 2012
Support from others is helpful, but others may not
always know how to be supportive:
 Feel free to ignore people who urge you to “be
positive”
 Feel free to ignore people who tell you “I knew
someone who had that cancer and he/she…..”
 Feel bold to ask for what is helpful
 Think about some “stock answers” for difficult
situations e.g. the persistent/intrusive questioner
Brain Tumour Support and Education Forum
May, 2012
Depression and anxiety are common
Effective treatments are available
Often due to a combination of factors:
 The diagnosis
 Effect of surgery
 Effect of radiotherapy
 Effect of chemotherapy
 Steroids
 Past history
 Other life stresses
 Financial strain
Brain Tumour Support and Education Forum
May, 2012
ISSUES FOR
FAMILIES
Brain Tumour Support and Education Forum
May, 2012
Challenges posed by physical demands e.g. inability to
drive
Frustration of dependence on others
Lack of awareness of others “but he looks OK”
Changes in memory especially challenging:
 Need to re-think questions/requests
 Only when you are face-to-face!
 Reduce burden of decision-making/choices
 Remember interpolation of words
 Go with it rather than struggle for the word
 Singing
Brain Tumour Support and Education Forum
May, 2012
Coping with personality changes:
 More challenging if the person is not aware
 If aware can negotiate a signal for “listen to
me”
 Distraction
 Seeing warning signs
 Reducing factors which increase difficulty
such as fatigue, pain, hunger
 Having some time to “recharge the batteries”
Brain Tumour Support and Education Forum
May, 2012
SOME SPECIFIC ISSUES
Temporo-parietal problems:
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Spatial issues
Dressing
Calculation
Knowing right from left
Executive function:
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Planning and decision-making
Self-monitoring and self-correction
Initiation and completion of activities
Responding to novel situations
Reasoning and problem-solving
Ability to inhibit impulses based on current need
Brain Tumour Support and Education Forum
May, 2012
PALLIATIVE CARE
Brain Tumour Support and Education Forum
May, 2012
PALLIATIVE CARE =
“TERMINAL CARE”
Palliative care is a specialty area of health care
It does not mean “terminal care”
Focus is on the unique needs of the individual and their family
Aim is to improve quality of life
Attention to practical, supportive, psychosocial and spiritual
needs
Common for people to have periods of needing palliative care
interspersed with intervals where palliative care is not
required
People receiving palliative care can still have ongoing
treatment such as chemotherapy or radiotherapy
Early referral means that there is a “safety net”
Brain Tumour Support and Education Forum
May, 2012
“They arrived just after 4 pm – I remember it was
a Friday afternoon, and I had thought they
would be in a rush to get away for the
weekend. But it was like they had all the time
in the world. As though we were the only ones
who mattered. And for the first time in weeks I
could just feel myself breathe, and be calm. I
knew that they would look after us.”
Angela, aged 37 years
Brain Tumour Support and Education Forum
May, 2012
THE ULTIMATE CHALLENGE:
THINKING ABOUT END OF LIFE
Brain Tumour Support and Education Forum
May, 2012
SOCIETY AND DEATH
We are not good at talking about this!
We use euphemisms to avoid the emotions
Society sanitises things which inhibits us from
being to talk about how things really are:
 The cancer “fight”
 “Brave to the end”
 People “pass away” with loved ones at their
side
 Then people have “closure” – whatever that is!
Brain Tumour Support and Education Forum
May, 2012
To ask or not to ask?
 There is no certainty about prognosis
 Averages are just that - some people will do
exceptionally well
Most people say that knowing even bad news allows
them to prepare and make decisions
Important to talk with family about what matters:
 Reduces burden of family making decisions and
worrying “if it is the right thing”
 Reduces the chance of regrets
Brain Tumour Support and Education Forum
May, 2012
People have a number of very important hopes when
they are facing death:
 They hope not to die alone
 They hope not to suffer
 They hope not of have pain
 They hope to be able to live whatever time they
have left with meaning and joy and purpose
 They hope not to be a burden to others
 They hope to be remembered
Breitbart & Heller
Journal of Palliative Medicine 2003;979-988
Brain Tumour Support and Education Forum
May, 2012
Some final thoughts:
 The script is lousy but you are in the director’s
chair
 There is no right or wrong way - there is just what
works for you and your family
 If you can’t be selfish now when can you?
 Don’t be afraid to seek help to share the burden
Brain Tumour Support and Education Forum
May, 2012