Download Communication With Patients and Families_For Health Care

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
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
• 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
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 life’s 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
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
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
Planning For Predictable Challenges
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?
10
functional decline occurs
food/fluid intake decr.
oral medication route lost
symptoms develop:
dyspnea, congestion,
delirium
• family will need support &
information
•
•
•
•
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)
Macro-Culture
Micro-Culture
How does this family
work?
&
When Families Wish To Filter Or Block
Information
• Don’t simply respond with “It’s 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 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?”
14
Setting The Stage
 In person
 Sitting down
 Minimize distractions
 Family / friend possibly present
15
Be Clear
“The single biggest problem in communication is the
illusion that it has taken place.”
George Bernard Shaw
Make sure you’re both talking about the same thing
There’s 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?”
16
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
Initiating Conversations
1. Normalize
“Often people in circumstances similar to this have
concerns about __________”
2. Explore
“I’m wondering if that is something you had been thinking
about?”
3. Seek Permission
Would you like to talk about that?
Starting the Conversation –
Sample Scripts 1
“I’d like to talk to you about how things are going with your
condition, and about some of the treatments that we’re 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?”
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Starting the Conversation –
Sample Scripts 2
“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?”
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
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
• “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”
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
Discussing Prognosis
DISCUSSING PROGNOSIS
“How long have I got?”
1. Confirm what is being asked
2. Acknowledge / validate / normalize
3. Check if there’s 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
25
“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?”
27
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
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.
Helping Families At The Bedside:
Time 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
Helping Families At The Bedside:
Missed 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.
Decisions
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
Advance Care Planning may
need to accommodate for having
to assess the context at the time
of the decision
Expectations
The Illusion of Choice
• Patients / families sometimes asked to
make terribly difficult decisions about nonoptions
i.e. there will be the same outcome
regardless of which option is chosen.
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
Prolong
Suffering
Let
Die
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 patient’s 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
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?”
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 you’re being asked to make some very difficult
choices about care, and it must feel that you’re 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.”
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)
Goal-Focused Approach To Decision Making
Regarding effectiveness in achieving its goals, there are 3 main
categories of potential interventions:
1. 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
2. Those that won’t 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
3. 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
Goals unachievable, or
inconsistent with standard of
medical care
• 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 to a
setting/providers willing to
pursue the intervention
Uncertainty RE: Outcome
Consider therapeutic trial, with:
1. clearly-defined target
outcomes
2. agreed-upon time frame
3. plan of action if ineffective
Goals achievable and
consistent with standard of
medical care
• Proceed if desired by patient
or substitute decision maker