Transcript Conversations About Care At The End Of Life Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director,

Conversations About Care At
The End Of Life
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 communication
and decision-making about palliative care issues
in Long Term Care settings
• To consider the role of effective communication in
reviewing health care options
• To explore an approach to health care decision-
making
http://palliative.info
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
“Ripple Effect” Of A Patient’s Death
You
Friends/
Community
Family
Patient
Involved
Health Care
Team
Anticipating Predictable Issues and Concerns
• Most palliative clinical issues & patient/family concerns
are very predictable and can be addressed proactively
rather than reactively
• Don’t assume that silence = no concerns
• Engaging patients/families proactively conveys your
understanding of their concerns and an ability to address
them, e.g.: functional decline, decreased intake,
medication concerns
Connecting
• A foundational element 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 taking 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)
“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”, competent 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?”
Setting The Stage
• In person
• Sitting down
• Minimize distractions
• Family / friend possibly present
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
• 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.”
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
How Can I Start The Conversation Proactively?
With difficult
conversations, the
hardest part is starting
them; once they get
going they tend to
take on their own
direction & pace
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?”
Prognosticating
•
difficult – no studies or data can take into
consideration all of the specific considerations for a
given situation
•
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 is momentum of change –
i.e. the illness trajectory; how quickly the person is
declining
Where will the ball land?
it depends on its path and speed
Functional Status
The anticipated patient course is determined by how
quickly things are changing; the “illness trajectory”
Time
Discussing Prognosis With Family
1. Confirm what is being discussed (often the topic is
addressed vaguely or is only hinted at)
2. Acknowledge / validate / normalize – “That’s a good
question – I can understand why you’d be wondering
about that”
3. Check if there’s a reason that this is being asked – (e.g.
out-of-town family member needing to plan, or family
doesn’t want to risk leaving in case patient dies)
• this is often where the true focus of the question lies
4. It is often helpful to ask them what they are seeing, and
what their thoughts are on prognosis – do they have a
“gut feeling”?
5. Answer the question if possible
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Answering The Prognosis Question
1. The disclaimer: “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”
2. We are all familiar with time ranges: hours-to-days, days-to-weeks,
etc. Affirm this with the family: “We can usually speak in terms of
ranges, such as hours-to-days, days-to-weeks”
3. Start with the range higher than your estimate, indicating why it can’t
be that, then settle on the range you feel is correct – be as specific
as necessary and appropriate:
“From what I am seeing and what we’ve just talked about, it won’t
be weeks. This brings the time frame into the hours-to-days range.
From what we’ve seen in the way things are changing, I’m feeling
that it might be as short as the next 24 hours, or perhaps a day or
two”
4. In view of the time frame just discussed – is there anything you can
do to support the family? e.g. speak with out-of-town family
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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 2
Day 3
Final
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
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.
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-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.”
Issues To Address In ACP Planning With Virtually All
LTC Patients
1. Feeding and Hydration
• when no longer able to swallow due to progressive decline
related to dementia
• what about in context of potentially reversible issue?
2. Approach to life-threatening infection (pneumonia)
• pneumonia is a common cause of the final deterioration
at end-of-life
• approach can range from comfort-only care (opioids,
sedatives, antisecretories) to acute care transfer
3. Transfer to Emergency Dept
• Under what circumstances?
● Tube feeding will rarely be appropriate as it does not prevent
aspiration, prolong life or improve function
● Continuing careful and adapted oral feeding is probably as
safe, maintains food enjoyment and social interaction during
meals and will be the most appropriate course in most cases.
- This may not meet conventional nutritional requirements
● Patients should not be made ‘nil by mouth’ if they wish to try to
eat
Feeding tubes are not recommended for older adults with
advanced dementia. Careful hand feeding should be
offered;
- hand feeding is at least as good as tube feeding for the
outcomes of death, aspiration pneumonia, functional status,
and comfort.
- tube feeding is associated with agitation, greater use of
physical and chemical restraints, greater healthcare use due
to tube-related complications, and development of new
pressure ulcers.