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Determining Preferences for Care
Karen M. Knops, M.D.
Dept. of Palliative Care
October 2004
“It is more important to know what
kind of patient has a disease than
what kind of disease a patient has”
(Sir William Osler)
Evaluating Goals of Care:
The Context
1. Patient desires and goals are not the same as
our desires and goals
2. Problems arise when we don’t realize or
acknowledge #1
3. In medicine, a systematic approach to
complex problems can prevent oversights,
redundancy, and confusion
The Benefits of Evaluating
Goals of Care:
• Guide decision-making and prevent
unnecessary treatments
• Identify misconceptions, barriers to care
• Evaluate spirituality, perspective on life,
support system, level of function
• CYA
Current Models of the
Goals-of-Care Discussion
• The “Withdrawal of support”
• The “DNR/DNI”
• The talk so vague that patient does not realize that
end-of-life issues were discussed
• The Advance Care Plan/ DPA talk
• The Hospice Referral (aka the “Hasta la vista”)
We often ask patients and surrogates to speak our
language and fit with existing care options
A Systematic Approach
Step 1: Start where they are
- Open the with a summary
Step 2: Find out where they want to go
and explore how to get there
- GOOD
Step 1: Start where they are
• Solicit a summary :
“What have you been hearing about your
condition so far?”
“Can you tell me where you are at in your
illness and your treatment?”
• Offer a summary:
“Let me see if I can summarize what has
happened so far…”
Step 2: Find out where they
want to go
• Goals
• Options
• Opinion
• Documentation
GOOD - Goals
• Sometimes patient/family are able to
clearly and solidly articulate goals
• When goals are poorly articulated, we
can start by inquiring about three areas
of concern
Three Domains of Patient Perspective,
Three Players in the Illness Narrative
Disease
Suffering
Death
The “Trade-Offs”
Disease
Suffering
Death
Patient’s perspective on the role of disease and desire
for medications & interventions to cure or control it
Patient’s perspective on the role of suffering and
desire for medications & interventions to ease
suffering
Patient’s perspective on death and desire to hasten or
control circumstances of death
Disease
Roles of each
domain:
metaphorical
clues
Suffering
“I’m going to “It’s just my
fight this
cross to
thing to the bear”
end”
Death
“I’m not
giving up
yet”
“This pain is “Let’s get
“That cancer torturing me” the show on
is God’s
the road”
will”
“I’m so lost “I need to be
in all of this” at home”
“It’s stealing
my life”
Patient
Goals
Disease
Suffering
Death
•Prevent
disease
•Control physical
and emotional
suffering
•Control location
and invasiveness
of care
•Improve
morbidity
•Optimize
functional status,
QOL
•Prolong life
•“Doing
everything” to
fight disease
•Emotional,
spiritual support
•Family support
and education
•Avoid lifeprolonging
measures
•Accepting
increased risk of
death to maximize
symptom control
•Assisted Suicide
(Oregon)
Identifying Goals
• Highlight conflicting goals or expectations that
are unrealistic (Illustrates what “homework”
the patient needs to do)
• Provides a framework for discussing complex
patients with other team members and
readdressing patient goals at a later date
Translate Goals to a Plan of Care
• Goals
• Options
• Opinion
• Documentation
GOOD - Options
• Present the options that are most
relevant, as identified in the “goals”
discussion
• Benefits and burdens of each option
• Present Probability
Care
Options
Disease
Suffering
Death
•Medical and
surgical
interventions
•Treatment of
illness for
symptom
reduction
•Spiritual and
emotional
supports
•Treatment of
comorbidities
•Rehabilitation
•Medical and
surgical
interventions
•Monitoring of
disease
progression
•Support of
emotional and
spiritual suffering
•Terminal sedation
•Avoid lifeprolonging
measures
•Risk of death to
control symptoms
•Assisted Suicide
(Oregon)
Translate Goals to a Plan of Care
• Goals
• Options
• Opinion
• Documentation
GOOD - Opinion
• Offer your opinion given all of the
information and patient/family goals
• Use neutral language
• Separate data from opinion
• Provide a basis for your opinion
• Consider carefully what you are willing
to do and not willing to do
Translate Goals to a Plan of Care
• Goals
• Options
• Opinion
• Documentation
GOOD - Documentation
• Record the essence of the discussion and who
participated
• Current and future preferences and a few
lines about the basis of these preferences
• It is not enough to write DNR or Full Code
• Make important preferences easy to find
Three Players
in the Illness
Narrative:
Suffering
Disease
Death
Three Areas of
Care:
Disease
Directed Care
Palliative
Care
End of Life
Care
Disease
Directed
Care
Disease &
Palliative Care
Palliative
Care
End of Life
Care
Disease
Directed
Care
Disease &
Palliative Care
Palliative
Care
Disease &
EOL Care
End of Life
Care
Disease
Directed
Care
Disease &
Palliative Care
Palliative
Care
Traditional
Hospice
Disease &
EOL Care
End of Life
Care
Disease
Directed
Care
Disease &
Palliative Care
Disease &
EOL Care
Comprehensive
Care
Palliative
Care
Traditional
Hospice
End of Life
Care
Vignettes?
Disease
Directed
Care
Disease
Suffering
Death
Disease Directed Care
H.M.
68 year old woman
Class III CHF
Can’t golf anymore
Enjoys time with grandchildren
Good social and emotional support
Church and family involved
“Life isn’t bad. I just take things as they
come. I think about death sometimes, but
I definitely want to see my grandchildren
graduate from high school”
Palliative Care
Palliative
Care
Disease
Suffering
Death
R.B.
58 yo man
12 year h/o idiopathic peripheral
neuropathy causing sensation of burning
and tightness in the feet. Minimal help
from Neurontin and tricyclics. Now
drinking rum each evening to be able to
sleep.
Daughter states:
“He doesn’t even go to his neurologist
anymore- there’s nothing they can do”
Disease Directed with Palliative Care
Disease &
Palliative Care
Disease
Suffering
Death
C.B.
42 yo woman
Stage IV breast cancer
Bone pain, gastric outlet obstruction
Experimental protocol
Wants any available treatment
Emotional suffering due to
illness stigma
disfigurement 2° surgery
“This is a tough battle, but its one that I
mean to play out until the end. I’m a
fighter.”
End of Life Care
End of
Life Care
L.V.
48 yo man
Father and brother died of Huntington’s
Disease, patient is showing early signs
Function not impaired, working as a
lawyer
Lives alone, talks to sister for support
Disease
Suffering
Death
“There is no question in my mind. I can’t
live through that experience like they did.
I just can’t go that way. ”
Traditional Hospice
Traditional
Hospice
Disease
Suffering
Death
S.K.
73 yo woman
End stage COPD
Oxygen dependent, can’t walk a full
block, nebulizer provides minimal relief
Advanced care plan to limit invasive
measures (no hospitalization)
PMD recently recommended hospice
“I’m so tired. My daughter has to do
everything anymore.”
Disease &
EOL Care
Disease
Suffering
Death
Disease Directed Care with End of Life
Care
L.M.
65 yo woman
Recently diagnosed with Multiple
Myeloma
Previously very active, social
Long history of depression and anxiety,
on multiple medications. Accepted
treatment for MM
Wanted no aggressive measures
At the time of diagnosis:
“I feel like this is it for me.”
Terminal Illness Care
Terminal
Illness Care
Disease
Suffering
Death
J.D.
67 yo veteran
ESLD, severe osteoarthritis
Compliant with medications, wants to
remain on transplant list
More afraid of pain than he is of death.
Needs a great deal of social support,
however not in hospice due to desire for
transplant.
“I’ve lived my life. I’d like to live longer,
but it may not work out that way.”
QUESTIONS?
• How tall are you?
6’1/2”
• Why do you pronounce the “K” in
your last name?
It’s Dutch.
• Do you play basketball?
No.
Disease
Directe
d
Therap
y
Illness
Illness with
with
Palliative
Termin DHD
Care
al
Illness
Care
Desire to
Palliative
Traditi
Hasten
Care
onal
Death
Hospice
Disease Directed
Therapy
Palliative
Care
Desire to
Hasten Death
“Vignette” Illness with Palliative Care
C.B.
48 yo woman
Stage IV breast cancer
Bone pain, gastric outlet obstruction
Experimental protocol
Wants any available treatment
Emotional suffering due to
illness stigma
disfigurement 2° surgery
“This is a tough battle, but its one that I
mean to play out until the end. I’m a
fighter.”
Methods
We searched MEDLINE from 1986 – 2004:
• headings that included: patient preferences, chronic
illness (in conjunction with terms such as congestive
heart failure, COPD, renal failure, liver failure),
end-of-life, hospice, palliative care, disease-directed
therapy, resuscitation, hastened death, and
physician-assisted suicide.
•
Bibliographies of relevant papers were reviewed for
additional data sources.