Communication%20in%20Palliative%20Care

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Communication 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
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Objectives

• Review fundamental components of effective
  communication with patients and their families
• Discuss potential barriers to effective
  communication in palliative care
• Consider an approaches/framework to challenging
  communication issues
• Review an approach to decision making in
  palliative care
• Review WRHA ACP Policy

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• 5 hospitals across Canada
• face-to-face questionnaire to older patients with
  advanced cancer and chronic end-stage medical
  disease and their family members
• n 440 patients 55 yo with 50 likelihood of
  dying in next 6 mo.
• 160 relations

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Perspective of Patients Top 10 (of 28) Most
Important Issues

1. To have trust and confidence in the doctors
   looking after you
2. Not to be kept alive on life support when there
   is little hope for a meaningful recovery
3. That information about your disease be
   communicated to you by your doctor in an honest
   manner
4. To complete things and prepare for lifes end
   (life review, resolving conflicts, saying
   goodbye)
5. To not be a physical or emotional burden on your
   family
6. Upon discharge from hospital, to have an adequate
   plan of care and health services available to
   look after you at home
7. To have relief of symptoms (pain, shortness of
   breath, nausea, etc.)
8. To know which doctor is the main doctor in charge
   of your care
9. That the doctor discuss concerns relating to your
   illness and care with your family present
10. To have an opportunity to strengthen or maintain
    relationships with people who are important to
    you

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Perspective of Families Top 10 Important Issues

1. To have trust and confidence in the doctor
   looking after the patient
2. To not have your family member be kept alive on
   life support when there is little hope for a
   meaningful recovery
3. That information about your family member's
   disease be communicated to you by the doctor in
   an honest manner
4. To have an adequate plan of care and health
   services available to look after him or her at
   home, after discharge from hospital
5. That your family member has relief of physical
   symptoms such as pain, shortness of breath,
   nausea
6. To have the opportunity to strengthen or maintain
   the relationship with your family member
7. To have information on your family member's
   illness and needs be readily available to the
   doctors treating him or her upon arrival at the
   hospital
8. To complete things, resolve conflicts, and say
   goodbye to your family member
9. To receive adequate information about your family
   member's disease (the risks and benefits of
   treatment)
10. To have trust and confidence in the nurses
    looking after your family member

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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

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Planning For Predictable Challenges
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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?

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• functional decline occurs
• food/fluid intake decr.
• oral medication route lost
• symptoms develop
• dyspnea, congestion,delirium
• family will need support information

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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)

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Macro-Culture
Micro-Culture
Ethnicity,
How does this family work?
a Community
Faith,
Experiences
Values of

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When Families Wish To Filter Or 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
  illness?

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Setting The Stage

• In person
• Sitting down
• Minimize distractions
• Family / friend possibly present

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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?

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Starting the Conversation

• One of the biggest barriers to difficult
  conversations is how to start them
• Health care professionals may avoid such
  conversations, not wanting to frighten the
  patient/family or lead them to think there is an
  ominous problem that they are not being open
  about
• The topic of Advance Care Planning can be
  introduced as an important and normal component
  of any relationship between patients and their
  health care team

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Initiating Conversations

• Normalize
• Often people in circumstances similar to this
  have concerns about __________
• Explore
• Im wondering if that is something you had been
  thinking about?
• Seek Permission
• Would you like to talk about that?

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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
  yourself?

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Patient/Family Understanding and Expectations
Health Care Teams Assessment and Expectations
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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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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
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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
• 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?
• It would help me to have a feel for what your
  understanding is of your condition, and what you
  might expect
• 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

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Discussing Prognosis
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DISCUSSING PROGNOSIS
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

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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
two
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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?
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• First, lets talk about what you should not
  expect.
• You should not expect
• pain that cant be controlled.
• breathing troubles that cant be controlled.
• going crazy or losing your mind

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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?
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Youll 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.
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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.
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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
Final
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Helping Families At The Bedside Physical Changes

• physical changes of dying can be upsetting to
  those at the bedside
• skin colour cyanosis, mottling
• breathing patterns and rate
• muscles used in breathing
• reflect inescapable physiological changes
  occurring in the dying process.
• may be comforting for families to distinguish
  between who their loved one is - the person to
  whom they are so connected in thought and spirit
  - versus the physical changes that are happening
  to their loved one's body.

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Helping Families At The BedsideTime Alone With
The Patient

• family may arrive when the patient will no longer
  recover consciousness they have missed the
  chance to say things they had wanted to
• individuals may wish for time alone with the
  patient, but not feel comfortable asking
  relatives to leave
• staff may have a role in raising this
  possibility, and suggesting they explore this as
  a family

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Helping Families At The BedsideMissed The Death

• some family members will miss being present at
  the time of death
• consider discussing the meaningfulness of their
  connection in thought spirit vs physical
  proximity
• whether they were at the bedside, or had stepped
  out of the room for a much needed break, or were
  in fact in a different country, their connection
  in spirit/heart/soul was not diminished by
  physical distance.

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Decisions
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The Importance Of Context

• The decision about how to approach a new problem
  such as infection or bleeding may depend on what
  is happening with the illness in general i.e.
  recent, present, and anticipated
• Functional status
• Cognitive function
• Quality of life

Present Circumstances
Recent Experiences
Expectations
Advance Care Planning may need to accommodate for
having to assess the context at the time of the
decision
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The Illusion of Choice

• Patients / families sometimes asked to make
  terribly difficult decisions about non-options
• i.e. there will be the same outcome regardless of
  which option is chosen.

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The Unbearable Choice

• Usually in substituted judgment scenarios
• Misplaced burden of decision
• Eg
• Person imminently dying from pneumonia
  complicating CA lung unresponsive
• Family may be presented with option of trying to
  treat which they are told will prolong
  suffering or letting nature take its course, in
  which case he will soon die

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Prolong Suffering
Let Die
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Helping Family And Other Substitute Decision
Makers

• Rather than asking family what they would want
  done for their loved one, ask what their loved
  one would want for themselves if they were able
  to say
• This off-loads family of a very difficult
  responsibility, by placing the ownership of the
  decision where it should be with the patient.
• The family is the messenger of the patients
  wishes, through their intimate knowledge of
  him/her. They are merely conveying what they feel
  the patient would say rather than deciding about
  their care

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Helping Family And Other Substitute Decision
Makers
Example

• 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?

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Helping Family And Other Substitute Decision
Makers

• In situations where death will be an inescapable
  outcome, family may nonetheless feel that their
  choices about care are life-and-death decisions
  (treating infections, hydrating, tube feeding,
  etc.)
• It may be helpful to say something such as
• 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 are
  asking for guidance about how we can ensure that
  we provide the kind of care that he would have
  wanted at this time.

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An Approach To Decision Making

• The health care team has a key role in providing
  information related to technical or medical
  issues, and physiological outcomes
• reviewing/explaining details about the condition,
  test results, or helping explore treatment
  options
• indicating when a hoped-for outcome or treatment
  option is not medically possible
• Patient/family must have a central role in
  considerations relating to value/belief systems
  (such as whether life is worth living with a
  certain disability) or to experiential outcomes
  (such as energy, well-being, quality of life)

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Goal-Focused Approach To Decision Making

• Regarding effectiveness in achieving its goals,
  there are 3 main categories of potential
  interventions
• 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
  care
• 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

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Goal-Focused Approach To Decisions