What is Palliative Care?

J. Keith Mansel, M.D.

Relevant Financial Relationships
• None
Objectives
• Describe the role of palliative care in patients
with serious illness
• Understand the use of communication tools in
physician-patient interactions
• Discuss assessment and management of actively
dying patients
UMMC Palliative and Supportive Care
“We are a specialized team that is patient
centered and relationship based who care for
persons with advanced, serious illness. Our goals
are to help them make wise choices, focus on what
is most important to them, and provide relief from
suffering.”

UMMC Care and Communication Team

Patient Centered and Relationship Based
“Where is the knowledge we have lost

in the information,

And, where is the wisdom we have

lost in the knowledge?”

T. S. Eliot
Case One
You are asked to see a 64 y/o man with
recently diagnosed small cell carcinoma of the
lung. He is experiencing pain and dyspnea and will
begin radiation therapy followed by chemotherapy
in the next few days. He has limited disease and
his oncologist is optimistic about a positive
response.
You begin opioids for symptom management
and schedule another visit in one month.
Pain is inevitable……Suffering is optional

Anonymous
 Palliative Care
• Palliare- “to cloak, deceive, or cover”

• Palliate- “to lessen or mitigate without curing”

• Palliative Care- term first coined in 1974 by Dr.

Balfour Mount
Palliative Care
• Provides relief from pain and other symptoms
• Affirms life and regards dying as a normal
process
• Intends neither to hasten death nor postpone
death
• Integrates the psychological and spiritual aspects
of patient care
Palliative Care
• Offers a support system to families, including
bereavement
• Uses a team approach
• Enhances quality of life and at times may
positively influence the course of a disease
• Is applicable early in the course of an illness and
in conjunction with other life prolonging
therapies
• Hospice is one facet of palliative care
Integrating Palliative Care into Chronic
Life-Limiting Disease Management

“best care possible”

100

% Bereavement
clinical
efforts

0
Terminal phase Death
Time
Palliative Care & Hospice

Palliative
Hospice
Care
Comfort
Care
 Hospice
• Support and care for patients and families in the
last phase of an incurable illness
• Attempt for patients to live as fully and
comfortably as possibly
• Focus on quality of life and symptom
management
• Continue to care for the patient, with a shift in
focus
Hospice
• Medicare benefit, enacted 1983
• Hospice is paid a per diem
• Pays for nursing care, meds, DME
• No routine office visits
• Hospice is a conversation and a philosophy
• Hospice is a disposition only after the
conversation
 Hospice
• Interdisciplinary approach-nurse driven
• 24 hour on call RN
• Supplies, equipment, most medications are paid
for
• Hospice takes over medical care
• Respite care
• Do not have to be DNR
 Hospice
• Most care provided in home
• May be provided in NH or residential hospice
• Two physicians must certify that survival is
anticipated if the disease trajectory continues
it’s expected course
• Patients may stay in hospice more than six
months
Hospice GIP
• Care in an inpatient setting for pain or other
symptom management
• Cannot be managed in other settings
• Intended to be a short term intervention
• Hospice makes determination of eligibility
• It is not an “automatic” level of care for imminently
dying patients
• Examples are pain crisis on IV meds and delirium with
behavioral issue
• Cap on these for each hospice
Early Integration of Palliative Care in
Patients with Serious Illness
• Palliative Care is not just for patients at the end
of life
• The goal of palliative care is to improve quality
of life throughout the trajectory of a serious
illness
• Focus is on symptom management, advance care
planning, psychosocial support, and relief of
suffering
Early Integration of Palliative Care….
• A recent study in patients with advanced lung
cancer and early palliative care revealed
improvement in quality of life and survival
• Palliative Care can be provided with concurrent
target-directed therapy
• American Society of Clinical Oncology
recommends palliative care be integrated early
in cancer patients
Early Integration of Palliative Care
• Generally focus on symptom management
initially
• Patients want to have relief of symptoms and
know you care- this helps build trust
• Advance Care Planning (ACP) can come later
• ACP is a conversation about the right medical
treatment for your patient
Early Integration of Palliative
Care….ACP
• Improves patient compliance
• Reduces hospitalizations at the end of life
• Leads to greater patient satisfaction
• Is longitudinal, iterative, incremental, and
almost always changes over time
• Slow is sometimes best-patients can only
assimilate so much information
Take Home Message
Palliative Care is appropriate for patients
with serious illness at any stage of their disease
process
Case Two
A 72 y/o woman is admitted to the CVICU
after sudden cardiac arrest. She has severe anoxic
brain injury with status myoclonus and minimal
brain stem reflexes present.

Palliative Care is consulted for goals of care.

Family doesn’t “get it” and insists on “doing
everything”.
Goals of Care
• A common reason for Palliative Care
consultation
• Often elderly patients with multiple medical
problems and large symptom burden
• Not just at end of life
Goals of Care…..
• Complex interaction requiring an intricate
knowledge of the clinical realities as well as
prognosis
• Necessitates understanding your patient’s
values, preferences, and priorities
• Skill at responding to emotion, breaking bad
news, and using a shared decision making model
Goals of Care-How to Conduct the
Discussion
• Through compassionate listening, establish a
bond by making a non-medical connection
• Have your patient share their narrative-this can
be both diagnostic and healing
• Understand their perception of their medical
condition (Ask-Tell-Ask)
• Ask about the “Big Picture”
• Give small pieces of information and check in
Goals of Care Guide
• If your health worsens, what are your most
important goals?
• What are your biggest fears and worries about
the future of your health?
• What abilities are so critical to your life that you
can’t imagine living without them?
• If you become more ill, how much are you
willing to go through for the possibility of
gaining more time?
“Between the emotion and the response,
Falls the shadow”

T. S. Eliot
Relationships- PEARLS
• Partnership- “We are going to work on this
together”, “I will be here for you”

• Empathy- “You appear sad”, “I wish things were

different”, “I imagine this is very hard”, “Tell me
more”
….silence….head nodding….emotive vs.
cognitive….never respond to an
emotion with a fact…..state the
obvious…..
Communication…PEARLS
• Acknowledge/Apologize- “You have done a
wonderful job caring for your mother”, “ I am
sorry I am running late and made you wait”

• Respect- “We may disagree, but I respect what

you are telling me”, “I can’t tell you how great
it is to see you doing some exercise, that’s really
important”
Communication PEARLS…
• Legitimize- “Anyone in your situation would be
tearful”, “It is normal to have the frustrations
you are experiencing now”

• Support- “ I am going to call your doctor so she

knows we are all working together on this”,
“Here is my contact information. I am here to
work with you.”
Communication…Helpful Phrases
• “Before we talk about your medical issues, tell
me a little about yourself”
• “How do you understand the big picture of your
health right now?”
• “What are your expectations of the time we
have together today?”
• “What else?”
• “Is there anything we haven’t talked about that I
should know to help care for you?”
Communication….Helpful Phrases
• “I think I am beginning to understand what is
bothering you”
• “Go on”
• “Uh huh” with head nodding
• “So what I heard is…”
• “Let me be sure I got this right”
• “I share your sorrow. I consider your father a
good friend.”
• “Just so we are on the same page…”
Case continued…
• 72 y/o woman with anoxic brain injury
• What did I do?
Take Home Message
• Goals of Care conversation requires knowing
your patient, listening to their story, and
understanding their values and preferences
• Showing empathy and responding to emotion are
essential features of communication
• Using a shared decision making model, making a
recommendation when appropriate is beneficial
Case Three
A 28 y/o man is admitted with pain, dyspnea,
nausea, and altered mental status. He was
diagnosed 3 years ago with melanoma and now has
widely metastatic disease including brain mets. No
further disease specific therapy is warranted. He
has spent most of the past 6 weeks in bed and for
the past 5 days has experienced the
aforementioned symptoms. His family can no
longer care for him at home. You are consulted for
symptom management.
Care at the End of Life
• Being present at the bedside of a dying patient is
one of the most meaningful acts a physician can
perform
• Sit on the bed, touch your patient, express
kindness both verbally and non-verbally
• Listen to what is said….and not said
• Talk about the end of life, dying, and what they
can expect
End of Life…What Patients Want
• Be as comfortable as possible
• Be free of pain, dyspnea, and anxiety
• Be clean
• Know what to expect
• Have someone who will listen
• Maintain dignity
• Say goodbye
• Deal with unreconciled issues
End of Life…What Patients Want
• Trust their physicians and nurses
• Physical touch
• Share time with friends and family
• Say “I love you”
• Say “I am sorry”
• Be sure their family is prepared
• Little things matter
End of Life…Assessment and
Management
• Pain
• Dyspnea
• Nausea
• Delirium
• Secretions
• Agitation
• Anxiety/Depression
• Existential Distress/Anticipatory Grief
End of Life…Assessment and
Management
• Grimacing
• Tachypnea
• Work of Breathing
• Delirium
• Death Rattle
• Mottling
• Pulses
• Body temperature
End of Life Medications
• Pain- opioids, steroids, ketamine
• Dyspnea- opioids, benzodiazepines
• Delirium- haloperidol
• Nausea- haloperidol, steroids, ondansetron
• Anxiety- Benzodiazepines
• Secretions- scopolamine, glycopyrrolate
• Cachexia, Fatigue- Steroids
• Depression- Methylphenidate, SSRI, ?ketamine
Take Home Message
• Patients and families have expectations we
should meet and they deserve
• Be present
• Prepare the patient and family
• Aggressively assess and manage symptoms
Objectives
• Describe the role of palliative care in patients
with serious illness
• Understand the use of communication tools in
patient-physician interactions
• Discuss assessment and management of actively
dying patients
Advance Directives
• Legal documents that give direction to a
patient’s care when they are unable to make
their own decisions
• Apply only when they have lost decision making
capacity
• Surrogate decision maker- durable healthcare
power of attorney
• Preferences for future care- living will
Objectives
• Describe Palliative Care and how it differs from
hospice
• Identify goals of care and how they can help
with shared decision making
• Define some communication techniques to help
with goals of care and breaking bad news
 Objectives
• Describe Palliative Care and how if differs from
hospice
• Identify goals of care and how they can help
with shared decision making
• Define some communication techniques to help
with goals of care discussions and breaking bad
news
What is Palliative Care?

J. Keith Mansel, M.D.