Palliative Care
How to Open the Door
What is on the Other Side
Charles S. Stinson, MD
Medical Director
Palliative Care Services
The Approach
 The
Basically Healthy
 Those
with Advanced or Chronic
Illness(es)
 Imminently
Dying
The Approach
 Life
Prolonging Goal
 Restorative
or Rehabilitative
Goals/Maintenance of Function
 Comfort
Timing the discussion
 Any
non-elective admission to hospital
 Any elective admission for a high-risk
surgical procedure.
 The diagnosis of a serious, incurable or
end-stage illness.
 Any clinical deterioration that signals a
change in prognosis.
Timing the discussion
 Any
admission to a critical care unit.
 A patient who considers stopping therapy
for a chronic or end-stage condition.
 A patient feels that his/her quality of life is
unacceptable.
 The physician feels that further nonpalliative treatment would be futile.
Timing the discussion
 Any
time a patient or family member
brings up discussions about appropriate
treatments or code status.
Assessing Readiness
“If you were to get very sick, have you thought
about how you want to be cared for during this
time?”
“Is there anyone you trust to make medical
decisions for you, and have you talked with this
person about what is important to you?”
“Can we talk about this today?”
Assessing Readiness
Not Ready to Engage
“I do not plan to get sick.”
“I don’t want to burden my family.”
Explore concerns, appeal to the benefits of
the process (reducing SDM burden,
maintaining control, achieving peace of
mind).
Educating and Motivating
“Because of an illness or an accident, most
patients will be unable to make their own
decision at some time in their life.”
(Up to 76% of patients at end of life are not
decisional.)
Educating and Motivating
“When patients talk with me and their loved
ones about what would be important to
them if they were to become very sick, it
helps them to keep a sense of control
about their medical care and to have
peace of mind.”
Educating and Motivating

ACP prevalence nationally is 20-30% in the
general population and less than 50% for end
stage illness
 Palliative population at FMC 49% patients have
HCPOA and 35% living wills
 Nationally, AD are available to the physician at
initial time of treatment 25% of the time
 Palliative population at FMC, 22% pts with AD
have HCPOA documents available at time of
initial treatment and 23% have living wills
Educating and Motivating
At FMC, for the palliative population, 21
patients (2%) have a MOST form at the
time of initial contact and 38 patients (3%)
have a MOST form completed by the
palliative team prior to discharge from the
hospital
Educating and Motivating

Retrospective cohort of 1711 patients from a
random sample of 90 nursing facilities in
Oregon, Wisconsin, and West Virginia
 Comparison of EOL wishes expressed through
POLST (Physician Orders for Life Sustaining
Treatment) v. more traditional means.
 Pts with POLST were more likely to have their
preferences recorded, and those who chose
comfort measures only were less likely to
receive medical interventions.
Educating and Motivating
“Because making decisions for someone is
very stressful, you could help to take the
burden off of your family/friends by starting
to think about what would be important to
you if you became very sick.”
Framing the discussion

Goals of care should be discussed rather than
“code status”
 Explore patient/family’s values, current
perception of their illness, hopes for the future.
 Understand goals of care AND
Prioritize with the patient and family:
Prolongation of Life,
Maintenance of Current Status,
Comfort
Framing the Discussion
 Focus
on the patient’s goals and values,
not the disease:
“How can we help you live well as this point
in your life?
NOT
“How can we treat your disease?”
Framing the Discussion
We are in Health CARE,
NOT
Health TREATMENT.
Framing the Discussion
“
How can we help you live well?”
“What fears or concerns do you have?”
“What or who helps or supports you when
you are in distress?”
Use of Neutral Language
“SOME patients say that if they became so sick
that they could not recognize or talk to their
loved ones (for example if they had dementia or
were in a coma), they would want all possible
treatments to prolong their life. OTHER patients
say they would rather have care focused on
comfort. Which kind of person are you?”
MOST, MANY, A FEW are not neutral, but may be
important to give weight to appropriate
treatments.
Exploring Changes
“Your health has changed/will change over
time. Sometimes patients can get used to
these changes and sometimes they
cannot. In the past, you told me that (e.g.,
staying out of the hospital) was important
to you.”
Exploring Changes
 Treatment
preferences and values change
when health changes: ADAPTABILITY
 Treatment
preferences and values change
when health changes: BURDENS OF TX
Clarifying and Articulating Patient’s
Values over Time
 “Patients
are often deeply affected by their
past medical experiences.”
 “Have you seen someone on
television/has someone close to you/had
your own experience with serious illness
or death?”
 “If you were in this situation (again), what
would you hope for? What would you be
most worried about?”
Clarifying and Articulating Patient’s
Values over Time
“Did this situation make you think of ways of
being that would be so unacceptable that you
would consider it worse than death?”
 “Some patients say that if they became so sick
that they could not recognize or talk to their
loved ones (for example if they had dementia or
were in a coma), they would want all possible
treatments to prolong their life. Other patients
say they would rather have care focused on
comfort. Which kind of person are you?”

Clarifying and Articulating Patient’s
Values over Time
“When (e.g., you were in the hospital with
your heart failure, when your brother died),
did this situation change your opinion
about the ways of being that would be
unacceptable or a state worse than
death?”
“If you went through this situation again,
would it be worth it to you?”
Establishing Leeway in
Surrogate Decision Making
“If your loved ones have to make medical
decisions for you, they have to think about
what you said in the past, but also about
what the doctors are telling them about
your medical condition and what they are
able to do for you. If these differ from one
another, this can be very stressful for your
loved one.”
Establishing Leeway in
Surrogate Decision Making
“Having told me what is important to you,
what if your surrogate finds it difficult to
provide this for you?”
“What if it is too hard for loved ones to
provide care for you/help you die at
home?”
Establishing Leeway in
Surrogate Decision Making
“What if, based on changes in your health, the
health care team recommends something
different from what you have told your loved
one?”
“Will you give your loved one(s) permission to work
with your health care team to make the best
decision they can for you even if it may differ
from what you said you wanted in the past?”
Establishing Leeway in
Surrogate Decision Making
“Are there certain decisions about your
health that you would never want your
loved one to change under any
circumstances?”
Counterproductive Behaviors
 Behavior
One:
The clinician initiates the discussion about
goals of care without assessing the
readiness of patient and family to consider
death and dying issues
Implies a task oriented approach to “get the
DNR”
Counterproductive Behaviors
The clinician initiates the discussion about goals of care without assessing the
readiness of patient and family to consider death and dying issues
Motivational interviewing needed:
 What do you understand about your illness?
 Where do you see things going with your
illness?
 What questions or concerns do you have?
 Are there things that particularly worry you?
Counterproductive Behaviors
 Behavior
Two:
The clinician unintentionally links relief of
suffering with a demand upon the patient
or family to accept limited lifespan; this
disrupts trust
Counterproductive Behaviors
The clinician unintentionally links relief of suffering with a demand upon
the patient or family to accept limited lifespan; this disrupts trust.
 The
clinician waits for an incurable clinical
event to occur to discuss palliative care
 I’m sorry, but there is nothing more we can
do, leaving the patient with a feeling of
abandonment
 Link treatment choice we provide as driven
by care rather than the patient’s prognosis
Counterproductive Behaviors
58 y/o male with widely metastatic
adenocarcinoma of the lung, worsening
despite three trials of chemotherapy. He
is now admitted to the hospital for
treatment of post obstructive pneumonia.
The physician knows that Mr. A. still has
hope that his cancer can be cured.
Counterproductive Behaviors
Clinician:
Pt:
Clinician:
Pt:
Clinician:
Pt:
Clinician:
How are you feeling?
The breathing is pretty bad.
Yes, I can see that you’re suffering. We’re
going to treat that aggressively. (The
clinician explains the use of oxygen,
antibiotics, chest PT, bronchodilators,
morphine, and a bowel regimen.)
I’m glad. That should help the breathing.
Yes, it should make you more comfortable.
When can I start the chemotherapy again?
We’ll talk about that in a couple of days. Let’s
get you feeling a bit better first.
Counterproductive Behaviors
 Behavior
Three:
The clinician misdiagnoses patients and
families as being “in denial” of medical
reality, when they are actually
experiencing normative grief and conflict
Counterproductive Behaviors
The clinician misdiagnoses patients and families as being “in denial” of
medical reality, when they are actually experiencing normative
grief and conflict.
1.
2.
3.
The reluctance of the patient or family to
engage in the goals of care discussion
Their request for “all life-sustaining
measures”
They are really saying, “I know that
things are going poorly, but I just do not
want death to occur. I need more time.”
Counterproductive Behaviors
 Behavior
Four:
The clinician engages in a distracting and
sometimes destructive debate with the
patient or family over the medical reality of
impending death
 For the family to forego treatment, they
must be able to FEEL that their decision is
a CARING thing to do.
Counterproductive Behaviors
The clinician engages in a distracting and
sometimes destructive debate with the patient or
family over the medical reality of impending
death.
Often due to staff’s repeated attempts to obtain
a DNR order
 Clinician sometimes argues by becoming
emotionally disengaged from the patient or
family

Counterproductive Behaviors
For the family to forego treatment, they must be
able to FEEL that their decision is a CARING
thing to do.
“Your mother is very sick. Let’s talk
about what we can do to help
your mother.”
Counterproductive Behaviors
 Behavior
Five:
The clinician presents value-laden medical
decisions without “right or wrong” answers
in a hypothetical, impersonal, and binary
manner
Counterproductive Behaviors
“If your heart stops beating or you stop
breathing…..” calls for a generic “yes or
no” decision.
“…..what would you like for us to do” OR
“would you like us to code you or just keep
you comfortable?” presumes personal
choice without informed consent.
Counterproductive Behaviors
Behavior 6:
All members of the health care team and the
appropriate members of the family are not
informed of the patient’s goals and values
and are not able to support the patient
during all stages of their journey.
Imminently Dying
Resuscitation serves as a powerful and complex
symbol: the most familiar “death ritual” in our
secular, medicalized society.
Even if the treating team is confident that
resuscitation will be futile, it may provide the
patient or family with the symbolic assurance
that the team did not “give up” on the patient and
that he or she died despite every effort being
made to save him or her.
Palliative Care
What’s Behind Your Door
Incorporation into Existing Resources
Disease Management Teams
Alzheimer’s Association
Cancer Services
Heart Failure Clinic
American Lung Association
AIDS Support
Specialty Clinics: ALS clinic, Hemodialysis Units
Mental Health
Prison populations
Underserved Communities: Poor, Medicaid, ESL
Pediatrics
Medical Home
Palliative Care
What’s Behind Your Door
Location of Care
Home
Residential or Assisted Living
Communities
Skilled Nursing Facilities
Long Term Acute Care Facilities
Outpatient Clinics
Palliative Care
What’s Behind Your Door
Provider of Palliative Services
Hospice
Independent Provider
Health Care System
Palliative Care
What’s Behind Your Door
Education
American Association of Hospice
and Palliative Medicine
Center to Advance Palliative Care
Carolinas Center for End of Life Care
Hospice or palliative providers
Resources
Fast Facts/EPERC (End of Life Palliative Education
Resource Center)
Primer of Palliative Care/UNIPAC Series (AAHPM)
Blogs: Pallimed/Geripal
References
Downar J, Hawryluck M. What Should We Say When Discussing “Code Status”
and Life Support with a Patient? J of Pall Med 2010; 13: 185-195.
Sudore RL, Fried TR. Redefining the “Planning” in Advance Care Planning:
Preparing for End-of-Life Decision Making. Ann Intern Med 2010; 153: 256261.
Taylor RM, Gustin JL, Wells-DiGregorio SM. Improving Do-Not-Resuscitate
Discussion: A Framework for Physicians. J Supp Oncology 2010; 8: 42-44.
Hickman SE et al. J Am Geriatr Soc. 2010; 58[7]:1241-1248.
Hammes, B. Advance Care Planning: Successes and Failures. Presentation,
Forsyth Medical Center, March 2010.
Palliative Care
What’s Behind Your Door
What’s on your Mind?
Charles S Stinson, MD
csstinson@novanthealth.org
336 718-7041