Transcript No Slide Title

COMMUNICATION ISSUES
IN
PALLIATIVE CARE
Note Poor Communication Skills:
“I think I just
heard my pager
go off”
• Poor eye contact
• Body language - subtly
discourages interaction
• Appears rushed
• Moves around a lot
“HOW DO YOU TALK ABOUT....”
• current status of the illness
• hopes, expectations, fears
• anticipated course, progression, changes
• advance directives
ISSUES THAT ARISE
• how am I doing?
• how long have I got?
• what will happen to me?
• why can’t this just end right now?
• multitude of concerns of loved ones
DISCUSSING TERMINAL ILLNESS WITH PATIENTS:
BASIC APPROACH
1. Set the stage: sit down, minimize noise & other distractions
2. Explore “frame of reference”: what patient knows and
wants to know; fears, misconceptions, preconceptions
3. Explore fears / concerns / worries, and validate them as
legitimate
4. Careful titration of gentle but honest information
• check out how patient is receiving and processing:
question patient, watch body language
5. Be prepared to abandon your own agenda if it clashes with
patient’s
Titrate information
with gentle honesty
“Feedback Loop”
Check response:
Observed & Expressed
The response of the patient determines the nature
& pace of the sharing of information
DISCUSSING PROGNOSIS
“How long have I got?”
• make sure you’re talking about the same thing
“Do you mean how long do you have to live?”
• may be asking about:
– discharge home
– how long until symptoms controlled
DISCUSSING PROGNOSIS
• determine why the question is posed
“I can understand that you would want to talk about
this. Is there a specific reason why you’re wondering
this now?”
– upcoming family event
– waiting for relative to arrive
DISCUSSING PROGNOSIS
Determine patient’s “frame of reference”

What’s your understanding of how things are with your illness?

How have you seen things going in the last month or so?

Do you think about what that means for how things will go?

Have you any ideas yourself about how long you might have?

How do you see things for yourself when you think about the
next few (days/weeks/months) ?
DISCUSSING PROGNOSIS ctd.
“As you know, it’s difficult to be specific when
discussing how long someone might have.
We can usually speak in terms of days-to-weeks,
weeks-to-months, or months-to-years.
From how things seem now and in the last while
I believe we’re talking about a few weeks, or
perhaps 1 to 3 months”
ADDRESSING UNREALISTIC EXPECTATIONS
• “I’m going to beat this thing.”
• “I’m so much looking forward to....”
“That’s something really nice to hope for. I’m concerned
that things are changing with your strength because of
your illness, and this may not be possible. Why don’t we
set some short-term goals to aim for as well, and see
how things go?”
“I WANT YOU TO GIVE ME SOMETHING JUST GET
THIS OVER WITH RIGHT NOW.”
UNHELPFUL RESPONSE:
“I can’t do that - it’s against the law”
DISCUSSING DESIRE FOR EARLY DEATH
A MORE HELPFUL APPROACH:
• pause
• sit down
• touch
“It must be so difficult for you to have things reach the
point that you’d rather not be alive.
Why do you feel this way?”
DISCUSSING DESIRE FOR EARLY DEATH
Explore concerns that have led to the desire for death:
• loss of control over life in general
• being a burden
• anticipation of loss of symptom control
– severe pain
– choking to death
• losing mental faculties
• loss of dignity
ADDRESSING DESIRE FOR EARLY DEATH
 Give control back to patient
• information, knowledge about illness - expected changes
• education about medications, opioid use
• Advance Directives
 Involve support networks
• spiritual support: Church, Pastoral Care
• emotional support: Counseling, support groups
• cultural support
 Is there a treatable depression?
 Is there a significant risk of suicide?
TALKING ABOUT DYING
“Many people think about what they might
experience as things change, and they become
closer to dying.
Have you thought about this regarding yourself?
Do you want me to talk about what changes are
likely to happen?”
First, let’s talk about what you should not
expect.
You should not expect:
– pain that can’t be controlled.
– breathing troubles that can’t be controlled.
– “going crazy” or “losing your mind”
If any of those problems come up, I will make
sure that you’re comfortable and calm, even if
it means that with the medications that we use
you’ll be sleeping most of the time, or possibly
all of the time.
Do you understand that?
Is that approach OK with you?
You’ll find that your energy will be less, as
you’ve likely noticed in the last while.
You’ll want to spend more of the day
resting, and there will be a point where you’ll
be resting (sleeping) most or all of the day.
Gradually your body systems will shut down, and at
the end your heart will stop while you are sleeping.
No dramatic crisis of pain, breathing, agitation, or
confusion will occur -
we won’t let that happen.
OBTAINING SUBSTITUTED JUDGMENT
You are seeking their thoughts on what
the patient would want, not what they
feel is “the right thing to do”.
PHRASING REQUEST: SUBSTITUTED JUDGMENT
“If he could come to the bedside as healthy as
he was a year ago, and look at the situation for
himself now, what would he tell us to do?”
Or
“If you had in your pocket a note from him telling
you that to do under these circumstances, what
would it say?”
Usual response is for comfort
care only; emphasize then that
we have no right to do otherwise.
Family / Friends Wanting to Intervene
With Food and / or Fluids
• distinguish between prolonging living and prolonging dying
• parenteral fluids not needed for comfort
• pushing calories in terminal phase does not improve
function or outcome
• “We can’t just let him die”
 “Not letting him die” implies that you can “make him
live”, which is not the case. The living vs. dying
outcome is dictated by the disease, not by what you or
the family decides to do.
Time that death would
have occurred without
intervention
Patient’s Lifetime
Extending the final days in terminal illness:
Prolonging life or prolonging the dying phase?
Consider the rationale of trying to prolong life by
adding time to the period of dying
“You wouldn’t let a dog suffer this way”
• Try to help them see whose suffering they are
describing... often it’s their own, not the patient’s
• That family’s suffering is still very relevant… but
should be addressed in ways other that
contemplating speeding up the death of their loved
one
PERCEIVED SUDDEN CHANGE
• “He was fine a week ago...he’s changed so fast!”
• “She was fine until I brought her in...”
did things really change suddenly?
 changes had begun, necessitating admission
 diminishing reserves
accelerated decline the

Which Came First....
The Med Changes or the Decline?
Steady decline
Accelerated deterioration begins,
medications changed
Rapid decline due to
illness progression with
diminished reserves.
Medications questioned
or blamed
The Perception of the “Sudden Change”
When reserves are depleted, the change seems sudden
and unforeseen.
However, the changes had been happening.
Melting ice = diminishing reserves
Day 1
Day 2
Day 3
Final
an IV
a feeding tube
a transfusion
“What about antibiotics
......?”
surgery
physiotherapy
resuscitation
etc..
This is Palliative Care...we don’t do that here!
Beware the Argument of “Medical Futility”
• Zero percent chance of achieving a physiologic goal
• Issues of :
 benefit/burden (eg. surgery, chemotherapy)
 resource allocation / distributive justice (eg. dialysis)
 assumed patient wishes (eg. CPR)
are too often presented inappropriately as issues of
“futility”, possibly justifying unilateral withholding of
treatment
“FUTILE”:
< 1%
Holding
lottery
ticket:
1 chance in
14,000,000
Aspect
What
We
See
Positive
Effects
Side
Effects
Assessment
physiologic
Interpretation
Comments
Objective:
decisions
largely
clinical
• lab values
• vital signs
What
Benefits quality of life/ Subjective &
The
value-laden
functional
Patient
• feel better
Feels Burdens
• reassured
require
patient’s
input
WHAT ARE THE GOALS OF THE INTERVENTION?
• Quality of life:
Symptom relief
General well-being
Energy level
Self-image
• Physiologic – Eg. improve hemoglobin
• Prolong life
• Feel like “something is being done”
SUMMARY
• Respond with respect, gentle honesty
• Explore patient’s knowledge, fears, hopes
• Address fears with truthful reassurance
• Empower with information, control