1. COMMUNICATION ISSUES IN
PALLIATIVE CARE

2. “I think I just heard my pager go off”
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

3. “HOW DO YOU TALK ABOUT....”
current status of the illness
hopes, expectations, fears
anticipated course, progression, changes
advance directives

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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) ?

10. 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”

11. 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?”

12. “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”

13. 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?”

14. 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

15. 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?

16. 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?”

17. First, let’s talk about what you should not expect.
pain that can’t be controlled.
breathing troubles that can’t be controlled.
“going crazy” or “losing your mind”

18. 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?

19. 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.

20. 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.

21. OBTAINING SUBSTITUTED JUDGMENT
You are seeking their thoughts on what the patient would want, not what they feel is “the right thing to do”.

23. 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?”

24. Usual response is for comfort care only; emphasize then that we have no right to do otherwise.

25. 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.

26. Extending the final days in terminal illness:
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

27. “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

28. 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

29. 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

30. 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

31. “What about ......?” an IV a feeding tube a transfusion antibiotics
surgery
physiotherapy
resuscitation
etc..
“What about ?”

32. This is Palliative Care...we don’t do that here!

33. 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

34. “FUTILE”:
< 1%
Holding
lottery
ticket:
1 chance in 14,000,000

35. Positive Effects physiologic Objective: lab values vital signs
Aspect
Assessment
Interpretation
Comments
What We
See
Positive Effects
physiologic
Objective:
lab values
vital signs
decisions
largely
clinical
Side Effects
The
Patient
Feels
Benefits
quality of life/
functional
Subjective &
value-laden
feel better
reassured
require
patient’s
input
Burdens

36. 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”

37. SUMMARY Respond with respect, gentle honesty
Explore patient’s knowledge, fears, hopes
Address fears with truthful reassurance
Empower with information, control

38. HOPE