Download palliative.info

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 helath care options
• To explore an approach to health care decision-
making
http://palliative.info
Case 1
• 35 yo woman with metastatic CA cervix
• ongoing bleeding, requiring 1-2 transfusions per
week
• transferred to palliative care unit for comfort care
after her health care team decided that no further
transfusions would be given, as they were “futile”
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• life-sustaining treatment in the PICU withdrawn,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
fluids?”
Case 3
• 65 yo man with esophageal CA, extensive
mets to liver, cachexia
• difficulty swallowing
• Asking about a feeding tube
Case 4
• 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
Anatomy of Decision Making
• Information is the foundation on which decisions are
made

Clinical information – facts, numbers; the “what”

Values / belief systems / ethical framework; the “who”
• Patient / family
• 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
Preemptive Decisions
• 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:
 food/fluid intake
 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?
functional decline occurs
food/fluid intake decr.
oral medication route lost
symptoms develop:
dyspnea, congestion,
delirium
• family will need support &
information
•
•
•
•
Some Problems Are Easily Predictable
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?
18
Introducing the Topic
 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
 Discussions around goals of care can be introduced
as an important and normal component of any
relationship between patients and their health care
team
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?”
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
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?”
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 are asking for guidance about how we can ensure that we
provide the kind of care that he would have wanted at this time.”
The three ACP levels are simply starting
points for conversations about goals of care
when a change occurs
Comfort
Medical
Resuscitation
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
Revisiting The Cases
Case 1: 75 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: 65 yo man with esophageal CA, wondering
about feeding tube
Case 4: 75 yo woman with widely metastatic CA lung,
conflict between daughters