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Communication and Decision Making in Palliative Care


Communication and Decision Making in Palliative Care Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba – PowerPoint PPT presentation

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Title: Communication and Decision Making in Palliative Care

Communication and Decision Making in Palliative
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
  • To consider the roles that the patients,
    families, and the health care team have in
  • To consider the role of effective communication
    in reviewing health care options
  • To explore an approach to health care

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Case 1
  • 35 yo woman with metastatic CA cervix
  • ongoing bleeding, requiring 1-2 transfusions per
  • transferred to palliative care unit for comfort
    care after her health care team decided that no
    further transfusions would be given, as they were

Case 2
  • 7 month old infant with severe anoxic brain
    injury due to balloon aspiration
  • life-sustaining treatment in the PICU withdrawn,
    was being transferred ward for palliative care
  • as he was being wheeled out of his ICU room in
    his bed, his father noticed that he no longer had
    an intravenous line
  • Where is his IV line? How is he going to get

Case 3
  • 75 yo woman with widely metastatic CA lung
  • brought in near death to ED by ambulance
  • unresponsive, mottled, resps congested and
    irregular, pulse rapid and barely palpable
  • IV started, fluids and cefuroxime administered
    for presumed pneumonia
  • 2 daughters both realize mom is dying and do not
    want CPR, however
  • one wants all meds and fluids discontinued
  • one wants possible pneumonia treated and
    hydration provided if this is not done, she will
    never speak to her sister again

Titrating Opioids
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

Look Up Recommended Dose
Setting The Stage
  • In person
  • Sitting down
  • Minimize distractions
  • Family / friend possibly present

Silence Is Not Golden
  • Dont 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

Be Clear
The single biggest problem in communication is
the illusion that it has taken place. George
Bernard Shaw
Make sure youre both talking about the same thing
  • Theres a tendency to use euphemisms and vague
    terms in dealing with difficult matters this can
    lead to confusion e.g.
  • How long have I got?
  • Am I going to get better?

Titrate information with measured honesty
Feedback Loop
Check Response Observed Expressed
The response of the patient determines the nature
pace of the sharing of information
  • 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)

How does this family work?
a Community
Values of

Families Wishing To Filter/Block Information
  • Dont simply respond with Its their right to
    know and dive in.
  • Rarely an emergent need to share information
  • Explore reasons / concerns the micro-culture
    of the family
  • Perhaps negotiate an in their time, in their
    manner resolution
  • 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 dont 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

Responding To Difficult Questions
  • Acknowledge/Validate and Normalize
  • Thats a very good question, and one that we
    should talk about. Many people in these
    circumstances wonder about that
  • Is there a reason this has come up?
  • Im wondering if something has come up that
    prompted you to ask this?
  • 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?
  • 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

How long have I got?
  1. Confirm what is being asked
  2. Acknowledge / validate / normalize
  3. Check if theres a reason that this is has come
    up at this time
  4. Explore frame of reference (understanding of
    illness, what they are aware of being told)
  5. Tell them that it would be helpful to you in
    answering the question if they could describe how
    the last month or so has been for them
  6. How would they answer that question themselves?
  7. Answer the question

First, you need to know that were 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
youre aware of, it wont be years. This brings
the time frame into the weeks-to-months range.
From what weve seen in the way things are
changing, Im feeling that it might be as short
as a couple of weeks, or perhaps up to a month or
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, lets talk about what you should not
  • You should not expect
  • pain that cant be controlled.
  • breathing troubles that cant be controlled.
  • going crazy or losing your mind

If any of those problems come up, I will make
sure that youre comfortable and calm, even if it
means that with the medications that we use
youll 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
youve likely noticed in the last while. Youll
want to spend more of the day resting, and there
will be a point where youll 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 wont 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 3
Day 2
Helping Families At The Bedside
  • physical changes skin colour breathing
  • time alone with patient
  • can they hear us?
  • how do you know theyre comfortable?
  • missed the death

Anatomy of Decision Making
  • Context forms the background on which decisions
    are considered past experiences, present
    circumstances, anticipated developments
  • Information is the foundation on which decisions
    are made
  • Clinical information facts, numbers the
  • Values / belief systems / ethical framework the
    who this includes is the patient/family and
    the health care team
  • Goals are the focus of decisions dialogue
    around health care decision (or any decision, for
    that matter) should be framed in terms of the
    hoped-for goals
  • Communication is the means by which information
    is shared and discussion of goals takes place

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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?
  • dont want to miss being there at time of death
  • how long can this go on? what will things look

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Preemptive Discussions
You might be wondering Or At some point soon
you will likely wonder about
  • Food / fluid intake
  • Meds or illness to blame for being weaker / tired
    / sleepy /dying?

Starting the Conversation Sample Scripts 1
  • Id like to talk to you about how things are
    going with your condition, and about some of the
    treatments that were doing or might be
    available. It would be very helpful for us to
    know your understanding of how things are with
    your health, and to know what is important to you
    in your care what your hopes and expectations
    are, and what you are concerned about. Can we
    talk about that now?
  • (assuming the answer is yes)
  • Many people who are living with an illness such
    as yours have thought about what they would want
    done if fill in the scenario were to happen,
    and how they would want their health care team to
    approach that. Have you thought about this for

Patient/Family Understanding and Expectations
Health Care Teams Assessment and Expectations
Starting the Conversation Sample Scripts 2
  • I know its been a difficult time recently, with
    a lot happening. I realize youre hoping that
    whats being done will turn this around, and
    things will start to improve were 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 dont
    have the effect that we hoped?
  • Is this something youve experienced? Can we
    talk about that now?

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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 youre being asked to make some
    very difficult choices about care, and it must
    feel that youre having to make life-and-death
    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 three ACP levels are simply starting points
for conversations about goals of care when a
change occurs
Goal-Focused Approach To Decision Making
  • Regarding effectiveness in achieving its goals,
    there are 3 main categories of potential
  • Those that will work Essentially certain to be
    effective in achieving intended physiological
    goals (as determined by the health care team) or
    experiential goals (as determined by the patient)
    goals, and consistent with standard of medical
  • Those that wont work Virtually certain to be
    ineffective in achieving intended physiological
    goals (such as CPR in the context of relentless
    and progressive multisystem failure) or
    experiential goals (such as helping someone feel
    stronger, more energetic), or inconsistent with
    standard of medical care
  • Those that might work (or might not) Uncertainty
    about the potential to achieve physiological
    goals, or the hoped-for goals are not
    physiological/clinical but are experiential

Goal-Focused Approach To Decisions
Revisiting The Cases
Case 1 35 yo woman with metastatic CA cervix, question about the role of transfusions
Case 2 7 month old infant with severe anoxic brain injury, question about hydration
Case 3 75 yo woman with widely metastatic CA lung, conflict between daughters