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Communication and Decision
Making in Palliative Care
Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care
The presenter has no
conflicts of interest to
disclose
Objectives
• To consider the roles that the patients, families,
and the health care team have in decisionmaking
• To consider the role of effective communication in
reviewing health care options
• To explore an approach to health care decision-
making
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“Ripple Effect” Of A Patient’s Death
You
Friends/
Community
Family
Patient
Involved
Health Care
Team
Silence Is Not Golden
 Don’t assume that the absence of question
reflects an absence of concerns
 Upon becoming aware of a life-limiting Dx, it
would be very unusual not to wonder:
– “How long do I have?”
– “How will I die”
 Waiting for such questions to be posed may
result in missed opportunities to address
concerns; consider exploring preemptively
Setting The Stage
 In person
 Sitting down
 Minimize distractions
 Family / friend possibly present
10
Connecting
• A foundational component of effective communication
is to connect / engage with that person… i.e. try to
understand what their experience might be
• If you were in their position, how might you react or
behave?
• What might you be hoping for? Concerned about?
• This does not mean you try to take on that person's
suffering as your own
• Must remain mindful of what you need to take
ownership of (symptom control, effective
communication and support), vs. what you cannot (the
sadness, the unfairness, the very fact that this person
is dying)
Titrating Opioids
Look Up Recommended Dose
Titrating Information
“Look Up Recommended Dose”:
•Check with health care team, review chart
to see what patient has been told and
understands
•Check with patient/family what they
understand
Start conservatively, usually with
lower end of recommended range
unless severity of distress dictates
otherwise
Observe/assess response, titrate
accordingly
Start Conservatively:
• “Sometimes people in these situations
wonder about…”
• “I’m wondering what made you ask this
today?”
Observe/assess response, titrate
accordingly
Be Clear
“The single biggest problem in communication is the illusion
that it has taken place.”
George Bernard Shaw
• people often speak “around” difficult topics – make sure
everyone is clear about what is being discussed
• messages need to be clear, though not brutally blunt.
• you can start with a “vague and gentle”, paced approach
– however you may need to be increasingly direct
• intuitive approach to how direct you need to be
Examples Gently Working Towards A Clear Message
What you want A gentle, but vague
the family to message – not quite
understand
enough
Your Mom is
“She is changing
likely to die within quickly, and things are
48 hrs
getting close”
Your Mom has an
irreversible endof-life delirium,
and must remain
sedated until
dying
“There’s been a big
change, and your Mom
is much more confused.
We can give her
something to settle her.”
[the problem here is that
families may expect that
this is temporary]
A better way – an
increasingly direct message
that conveys the message
“She is changing quickly, and we
believe things are getting close.
Judging by what we’re seeing, it
seems likely that your Mom will die
within the next couple of days”
“She has become much more
confused, and is changing quickly.
We believe that she will only live
another day or two. We can give her
something to settle her, but she
must remain sedated until she dies
from her underlying illness, as we
can’t fix the reasons for her
worsening confusion.”
“Don’t Tell Him He’s Dying…”
• Sometimes families will want to protect a loved one from
knowing that they are dying
• Complex - don’t simply respond with “It’s their right to know”
• Explore reasons / concerns – the “micro-culture” of the family
• Rather than a “right to know”, people have the right to accept
or decline information; they may indeed want to defer to
family
• Ultimately, may need to check with patient:
“Some people want to know everything they can about
their illness, such as results, prognosis, what to expect.
Others don’t want to know very much at all, perhaps
having their family more involved. How involved would you
like to be regarding information and decisions about your
illness?”
16
Responding To Difficult Questions
1. Acknowledge/Validate and Normalize
“That’s a very good question, and one that we should talk about. Many
people in these circumstances wonder about that…”
2. Is there a reason this has come up?
“I’m wondering if something has come up that prompted you to ask this?”
3. Gently explore their thoughts/understanding
• “It would help me to have a feel for what your understanding is of what
is happening, and what might be expected”
• “Sometimes when people ask questions such as this, they have an idea
in their mind about what the answer might be. Is that the case for you?”
4. Respond, if possible and appropriate
• If you feel unable to provide a satisfactory reply, then be honest about
that and indicate how you will help them explore that
Prognosticating
•
difficult – no studies or data can take into
consideration all of the specific considerations for a
given situation of advanced illness
•
some circumstances are fairly consistent – e.g.
complete absence of fluid intake (survival usually a
few days or up to two weeks)
•
the most helpful predictor as end of life nears is
momentum of change – i.e. the illness trajectory; how
quickly the person is declining
DISCUSSING PROGNOSIS
“How long have I got?”
1. Confirm what is being asked – often question is vague
2. Acknowledge / validate / normalize
3. Check if there’s a reason that this is has come up now
4. Explore “frame of reference” (understanding of illness,
what they are aware of being told)
5. It would be helpful if they could describe how the last
month or so has been for them (“momentum of decline”)
6. How would they answer that question themselves?
7. Answer the question
19
“First, you need to know that we’re not very good
at judging how much time someone might have...
however we can provide an estimate.
We can usually speak in terms of ranges, such as
months-to-years, or weeks-to-months. From what
I understand of your condition, and I believe
you’re aware of, it won’t be years. This brings the
time frame into the weeks-to-months range.
From what we’ve seen in the way things are
changing, I’m feeling that it might be as short as a
couple of weeks, or perhaps up to a month or
two”
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?”
21
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.
The Perception of the “Sudden Change”
When reserves are depleted, the change seems sudden
and unforeseen.
However, the changes had been happening.
That
was
fast!
Melting ice = diminishing reserves
Day 1
Day 2
Day 3
Final
Anticipating Predictable Issues
• The clinical course at end of a progressive illness tends
to be predictable... some issues are “predictably
unpredictable” (such as when death will occur)
• Many concerns can be readily anticipated
• Preemptively address communications issues:
 oral intake – food/fluids, medications
 sleeping too much
 are medications causing the decline?
 how do we know he/she is comfortable?
 can he/she hear us?
 don’t want to miss being there at time of death
 how long can this go on? what will things look like?
How Can I Start The Conversation Proactively?
With difficult
conversations, the
hardest part is starting
them; once they get
going they tend to
take their own
direction.
Potential Ways To Start Conversations
• “You might be wondering why your Mom is…
- more sleepy, spending more time in bed
- weaker, seeming to have less energy
- not eating or drinking very much
- etc…
We’ve noticed that too, and thought it would be good to talk
about these changes, and about what your thoughts and
concerns are”
• Other potential ways to start…
 “Many families in this situation wonder about…”
 “Sometimes when things start to change, families
have concerns about…”
Sometimes it seems that the health care team and patients/families are in
two separate rooms – the patient/family in the “don’t get it” or “won’t accept
it” room and the health care team in the “we know what’s coming” room
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Common ground– the scary “what-if?...” territory
“I know it’s been a difficult time recently, with a lot happening. I
realize you’re hoping that what’s being done will turn this
around, and things will start to improve… we’re hoping for the
same thing, and doing everything we can to make that happen.
Many people in such situations find that although they are hoping
for a good outcome, at times their mind wanders to some scary
‘what-if’ thoughts, such as what if the treatments don’t have the
effect that we hoped?
Is this something you’ve experienced? Can we talk about that
now?”
Displacing the Decision Burden
“If he could come to the bedside as healthy as he was a
month 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?”
Life and Death Decisions?
 when asked about common end-of-life choices, families
may feel as though they are being asked to decide
whether their loved one lives or dies
 It may help to remind them that the underlying illness
itself is not survivable… no decision can change that…
“I know that you’re being asked to make some very difficult choices
about care, and it must feel that you’re having to make life-anddeath decisions. You must remember that this is not a survivable
condition, and none of the choices that you make can change that
outcome.
We know that his life is on a path towards dying… we are asking for
guidance to help us choose the smoothest path, and one that reflects
an approach consistent with what he would tell us to do.”
The CPR Issue
• Simplistically, there are two main circumstances under which the
heart stops:
1. a primary cardiac problem – e.g. ischemic event, arrhythmia
2. everything else is in such a mess that the heart simply can’t
keep going – e.g. multisystem failure in advanced cancer;
sepsis; progressive respiratory compromise; acute stroke. etc
• CPR was developed to attempt restoration of cardiac function in
the 1st of the above situations
• In the 2nd of the above situations, unless you can reverse the
underlying non-cardiac problems that resulted in cardiac arrest,
CPR cannot work and should not be offered as an option
 Rather, it can be acknowledged that while CPR is something
that they may have heard about, it cannot work when the
reasons that the heart has stopped can’t be fixed.
Consequently, it won’t be attempted.
Goal-Focused Approach To Decisions
What are the goals of what is being considered?
Whose goals are they?
How and when will success in achieving those goals be assessed?
Things that work
Things that don’t work
Goals achievable and
consistent with standard of
medical care
Goals not achievable, or
inconsistent with standard of
medical care
• Proceed if desired by patient
or substitute decision maker
• Discuss; explain that the
intervention will not be offered
or attempted.
• If needed, provide a process for
conflict resolution:
 Mediated discussion
 2nd medical opinion
 Ethics consultation
 Transfer of care
Things that might work
Uncertainty RE: Outcome
Consider therapeutic trial, with:
1. clearly-defined target
outcomes
2. agreed-upon time frame
3. plan of action if ineffective
Whose role is it to discuss ACP/Goals of Care?
* SDM = Substitute Decision Maker
The three ACP levels are simply starting
points for conversations about goals of care
when a change occurs
Comfort
Medical
Resuscitation
Helping Families At The Bedside
 physical changes – skin colour; breathing patterns
 time alone with patient
 can they hear us?
 how do you know they’re comfortable?
 missed the death