Palliative Care and
Shared Decision-Making
HOW TO BECOME AN INFORMED
HEALTHCARE DECISION MAKER
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Definitions “Palliative care is competent and compassionate care which provides
coordinated medical, nursing and allied health services for people who
are terminally ill, delivered where possible in the environment of the
patient’s choice. It provides relief from pain and other distressing
symptoms, integrates psychological and spiritual aspects of care,
focuses on supporting patients to live as actively as possible until
death, and includes grief and bereavement support for the patient,
family and other care-givers during the life of the patient, and
continues after the death of the patient.” – Traditional palliative
care for end of life
“Shared decision making is defined as decisions that are shared by
doctors and patients, informed by the best evidence available and
weighted according to the specific characteristics and values of the
patient.”
-Dartmouth Hitchcock Medical Center
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Shared Decision Making
Honors both the health care
provider’s expert knowledge and the
patient’s right to be fully informed of
all care options and the potential
harms and benefits.
This process provides patients with
the support they need to make the
best individualized care decisions,
while allowing providers to feel
confident in the care they prescribe.
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Shared Decision Making
Informed Medical Decisions Foundation
Partnerships for Quality Care
www.informedmedicaldecisions.org
This foundation works to advance shared decision
making through research, policy, clinical models,
and patient decision aids.
High quality medical decisions are possible if the
patient is fully informed and shares in the
decision making.
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Shared Decision Making
Six Steps
1.
2.
3.
4.
Invitation to the patient to participate
Present options
Provide information on benefits and risks
Assist patient in evaluating options based on their
goals
5. Facilitate deliberation and decision-making
6. Assist with implementation
From the Informed Medical
Decisions Foundation
Shared Decision Making
How to approach your provider
Tips
1.
2.
3.
4.
5.
6.
Explain why you want the visit when you schedule
Don’t bring a laundry list of other problems
Do some research before the visit (websites, etc)
Think about your own goals and values
Enter with an open mind; expect same from provider
Don’t expect provider to do something inappropriate
or against their own values
Introduction to Illness Trajectories
In Hippocrates' day, the
physician who could fore-tell the
course of the illness was most
highly esteemed, even if he could
not alter it. Today, physicians can
cure some diseases and manage
others effectively. Where we
cannot alter the course of events
we must at least (when the
patient so wishes) predict
sensitively and together plan
care, for better or for worse.
Predicting and planning is not just for the physician
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Predicting Prognosis
Whose responsibility is it?
ePrognosis.org
Journal of the American Medical Association article in
January 10, 2012 included information about various
prognostic tools and the association created a website
for MDs and patients. It is easy to enter medical
information into these tools and in a matter of minutes
the
calculator gives a probability of survival.

Using ePrognosis effectively will take much more work before there is a
number that is accurate for a patient. How the number should be applied
to care is as much an art as a science.
Illness Trajectories
Information that helps guide care decisions
What to ask your
healthcare
practitioner
Typical illness trajectories for people with progressive chronic illness. Adapted
from Lynn and Adamson, 2003. From the RAND Corporation, Santa Monica,
California, USA
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Three Typical Trajectories
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Trajectory of Four Domains of Care
Living
Existing
Limitations of Trajectories
“One size may not fit all”
Different models
of care will be
appropriate for
people with
different illness
trajectories.
Most people over
65 years old have
average of 1.5
chronic diseases.
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Palliative Care and Hospice
Care Transitions
There are few mechanisms in place to coordinate
care across settings, and most often no single
practitioner or team assumes responsibility
during patient care transitions
Begin planning for a transfer to
the next care setting upon or
before a patient’s admission.
Elicit the preferences of patients
and caregivers and incorporate
these preferences into the care
plan.
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Major Issue for Care Transitions
Why do hospitals have readmissions?
 Poor Provider-Patient interface, poor
medication management, no effective
patient engagement strategies,
unreliable follow-up
 Unreliable system support
 Lack of standard and known
processes
 Unreliable information transfer
 1 in 5 Medicare patients re-hospitalized
within 30 days of a hospital discharge
 Half of these occurred before the patient was
seen by the outpatient healthcare provider
 Estimated cost 17.4 billion annually in US
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Conversations at Care Transitions
Shared Medical Decision making – time to talk about
changes in goals or make different decisions
Questions that you should be asked by your health
care practitioner if you have a life-threatening
illness – acute or chronic:
1. How much do you want to know about your
prognosis?
2. What kind of information do you want to know
about your prognosis? Statistics – time-frame, etc
3. You may hear the phrase…“if your time is short
what would you like to have your treatment plan
include?”
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Questions?
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