Palliative care aims to relieve suffering and improve quality of life for patients with serious illnesses and their families. It can be provided alongside curative treatment. The presentation discusses primary palliative care provided in primary care settings and specialty palliative care provided by palliative care specialists. It provides criteria for referring patients to specialty palliative care, such as advanced cancers, organ failures, neurological diseases, and frequent hospitalizations. Early referral to palliative care can improve quality of life and mood and extend survival. While many could benefit from palliative care, there are not enough specialists to meet the need.

1. 1
Primary and Specialty
Palliative Care
Michael Aref, MD, PhD, FACP, FHM, FAAHPM, HMDC
Assistant Medical Director of Palliative Medicine

2. 2
DISCLOSURES

3. 3
Disclosure of Financial Relationships and Conflicts of Interest
None

4. 4
OBJECTIVES

5. 5
Objectives
• What is palliative care?
• Basics of primary palliative care.
• When to refer for specialty palliative care.
• Introducing new options in telepalliative care.

6. 6
THE HEALTHCARE WORLD IS FLAT

7. 7
Welcome to Healthcaria
Beware the patient doesn’t fall off!
The Healthcare
World is Flat
Nursing /
Social Work /
Therapy
Primary Care
Specialty Care
IM
FM
Peds

8. 8
Death is NOT the enemy
We die not because we lose, quit, or fail. We die because that is the natural end of life.
The Healthcare
World is Flat
Nursing /
Social Work /
Therapy
Primary Care
Specialty Care
IM
FM
Peds

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WHAT IS
PALLIATIVE CARE

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Questionable Origins
“The term palliative care was coined by
Canadian surgeon Balfour Mount in
1975. Palliative care is interdisciplinary
care that aims to relieve suffering and
improve the quality of life for patients
with critical, advanced, or terminal
illness, and their families. It is offered
simultaneously with all other
appropriate medical treatment. No
specific therapy is excluded from
consideration, including surgical
intervention. The indication for palliative
care is based on the need to achieve
quality-of-life goals, not poor prognosis.”

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Definitions
• Palliative care is an approach that improves the quality of life of patients
and their families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.
• Palliative care, and the medical sub-specialty of palliative medicine, is
specialized medical care for people living with serious illness. It focuses on
providing relief from the symptoms and stress of a serious. Illness whatever
the diagnosis. The goal is to improve quality of life for both the patient and
the family.
• Palliative care is the relieving or soothing of symptoms of a disease or
disorder while maintaining the highest possible quality of life for patients.
WHO • CAPC • AAHPM
www.who.int/cancer/palliative/denition/en/
www.capc.org/about/palliative-care/
palliativedoctors.org/palliative/care

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Type Goal Investigations Treatments Setting
Active To improve quality of life with possible prolongation of life
by modification of underlying disease(s). Ex: Pt. who has
potentially resectable pancreatic carcinoma. May require
immediate symptom control or need guidance in setting
future goals.
Active (eg, biopsy, invasive
imaging, screenings)
Surgery, chemotherapy, radiation therapy,
aggressive antibiotic use,
Active treatment of complications
(intubation, surgery)
In-patient facilities,
including critical care units;
Active office follow-up
Comfort Symptom relief without modification of disease, usually
indicated in terminally ill patients. Ex. Pt. who has
unresectable pancreatic carcinoma, no longer a candidate
for or no longer desires chemo or radiation therapy.
Minimal (eg, chest radiograph
to rule out symptomatic
effusion, serum calcium level
to determine response to
bisphosphonate therapy)
Opioids, major tranquilizers, anxiolytics,
steroids, short- term cognitive and
behavioral therapies, spiritual support,
grief counseling, noninvasive treatment
for complications
Home or homelike
environment
Brief in-patient or respite
care admissions for
symptom relief and respite
for family
Urgent Rapid relief of overwhelming symptoms, mandatory if death
is imminent. Shortened life may occur, but is not the
intention of treatment (this must be clearly understood by
patient or proxy). Ex. Patient who has advanced pancreatic
carcinoma reporting uncontrolled pain (8 on a scale of 10),
despite opioid therapy.
Only if absolutely necessary
to guide immediate symptom
control
Pharmacotherapy for pain, delirium,
anxiety. Usually given intravenously or
subcutaneously and in doses much higher
than most physicians are accustomed to
using.
Deliberate sedation may need to be used
and may need to be continued until time
of death.
In-patient or home with
continuous professional
support and supervision
Victoria Classification of Palliative Care
J Palliat Care. 1993 Winter;9(4):26-32.

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Sufferology
• The area of medicine that deals with alleviating the
physical, mental, spiritual and familial suffering of
patients with chronic, progressive illness.
• Palliative care is concerned with three things:
• the quality of life,
• the value of life, and
• the meaning of life.
More than “there’s nothing left to do”
Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.

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DIAGNOSIS $35
With 1 Hospitalization $175.
With 2 Hospitalizations 500.
With 3 Hospitalizations 1100.
With 4 Hospitalizations 1300.
With Hospice $1500.
Mortality Value $175
Hospitalizations cost $200K. each
Hospice, $0. plus (or minus) 4
hospitalizations.
If a patient owns ALL the Symptoms of any Color
Group, the opiates are Doubled on Uncontrolled
Symptoms in that group.
Mortalopoly and Morbidopoly
• Palliative care is a
philosophy of care for
seriously ill patients, it is
– NOT a place
– NOT a status
– NOT limited by curative
intent

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With, For, and To
Never say nothing
• Even when we cannot cure their
illness or prevent their death, we
can always do something:
provide the best care possible.
#with4not2
• Do as little to the patient as
possible.
• Do for the patient what they
cannot do themselves.
• Do as much with the patient as
you are able.

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Scripting
• “Palliative care works with me, your [provider], to better manage
your [pain, shortness of breath or other symptom (anxiety,
fatigue, nausea)]. They are experts in looking at this holistically
and make a comprehensive plan for how best to relieve your
[symptom].
• They can answer some of the questions you may have about what
to expect in future as your [disease] worsens.
• They help me formulate a treatment plan that is based on what is
important to you and what is going on with your family.
• There is support staff at the clinic who works with the palliative
care providers to help you and your family cope with these
changes and plan for the future”
How to help other providers refer to palliative care

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Palliative Care and Hospice
Clin Geriatr Med 2013; 29:1–29
www.nationalconsensusproject.org
www.nia.nih.gov/health/publication/e
nd-life-helping-comfort-and-
care/providing-comfort-end-life Palliative Care
Symptom Management of Life Limiting Illness
Curative or Palliative Treatment
Disease Management of Life Limiting Illness
Symptom burden
despite or due to
disease
modification
End of Life or
Hospice Care
Symptom Management
and Comfort Care
Untreatable disease
No longer desiring treatment
Symptom burden
increases due to
treatable disease
burden
Comfort Care is an
essential part of medical
care at the end of life. It is
care that helps or soothes
a person who is dying.
The goal is to prevent or
relieve suffering as much
as possible while
respecting the dying
person’s wishes.

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Quality and Quantity
 Of the 151 patients who underwent
randomization, 27 died by 12 weeks and 107
(86% of the remaining patients) completed
assessments. Patients assigned to early
palliative care had a better quality of life than
did patients assigned to standard care (mean
score on the FACT-L scale [in which scores range
from 0 to 136, with higher scores indicating
better quality of life], 98.0 vs. 91.5; P=0.03). In
addition, fewer patients in the palliative care
group than in the standard care group had
depressive symptoms (16% vs. 38%, P=0.01).
Despite the fact that fewer patients in the
early palliative care group than in the standard
care group received aggressive end-of-life care
(33% vs. 54%, P=0.05), median survival was
longer among patients receiving early
palliative care (11.6 months vs. 8.9 months,
P=0.02).

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Carle Palliative Medicine Criteria
General Referral Criteria1
Presence of a serious illness and one or more of the following:
• New diagnosis of life-limiting illness for symptom control, patient/family
support
• Declining ability to complete activities of daily living
• Weight loss
• Progressive metastatic cancer
• Admission from long-term care facility (nursing home or assisted living)
• Two or more hospitalizations for illness within three months
• Difficult-to-control physical or emotional symptoms
• Patient, family or physician uncertainty regarding prognosis
• Patient, family or physician uncertainty regarding appropriateness of treatment
options
• Patient or family requests for futile care
• DNR order conflicts
• Conflicts or uncertainty regarding the use of non-oral feeding/hydration in
cognitively impaired, seriously ill, or dying patients
• Limited social support in setting of a serious illness (e.g., homeless, no family or
friends, chronic mental illness, overwhelmed family caregivers)
• Patient, family or physician request for information regarding hospice
appropriateness
• Patient or family psychological or spiritual/existential distress
Cancer2
• Stage IV disease
• Stage III lung or pancreatic cancer
• Stage II non-small cell lung cancer3
• Prior hospitalization within 30-days, excluding routine chemotherapy
• Hospitalization lasting longer than 7 days.
• Uncontrolled symptoms including pain, nausea/vomiting, dyspnea,
delirium, and psychological distress.
1 www.capc.org
2 www.oncologypractice.com/single-view/five-criteria-doubled-
palliative-care-cut-hospital-
readmissions/f37951d2a4828930104a3fa9b91eb013.html
3 N Engl J Med 2010; 363:733-742

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Carle Palliative Medicine Criteria
Heart Failure1
• Symptoms
• NYHA class III/IV symptoms
• Frequent heart failure readmissions
• Recurrent ICD shocks
• Refractory angina
• Anxiety or depression adversely affecting patient's
quality of life or ability to best manage illness
• Milestones
• Referral
• VAD
• Transplant
• TAVR
• Home inotropic therapy
• Caregiver distress
Kidney Disease2
• CKD Stage IIIb, IV, or V with fatigue, muscle cramps, anorexia,
nausea, insomnia, neuropathy, gout, itch, headache, or cognitive
impairment
• ESRD on dialysis with any stage V symptom as well as abdominal
pain from peritoneal dialysis or fistula problems from
hemodialysis
• Calciphylaxis
• Symptoms due to comorbid diabetes, cardiovascular disease, or
cancer
Liver Disease3
• Ascites despite maximum diuretics
• Spontaneous peritonitis
• Hepatorenal syndrome
• INR > 1.2 without anticoagulation
• Encephalopathy
• Recurrent variceal bleeding if further intervention inappropriate
1 www.acc.org/latest-in-cardiology/articles/2016/02/11/08/02/palliative-care-for-patients-with-heart-failure#sthash.ddHLsX9W.dpuf
2 Adapted from: www.nhslanarkshire.org.uk/Services/PalliativeCare/Documents/NHS%20Lanarkshire%20Palliative%20Care%20Guidelines.pdf
3 www.palliativedrugs.com/download/SpecialistPalliativeCareReferralforPatients.pdf

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Carle Palliative Medicine Criteria
Lung Disease
Chronic Obstructive Pulmonary Disease1
• Age ≥ 75
• Diabetes, cardiovascular disease, or end-stage renal
disease
• Change in 6 minute walk by 50 m
• Functional dependence and patient reported
minimal physical activity
• Poor healthcare quality-of-life
• FEV1 < 30%
• BMI < 20%
• ≥ 1 hospitalization within last year
Restrictive Lung Disease2
• TLC or FVC < 50%
Neurological Disease3
Presence of any of the General Referral Criteria
above, and/or:
• Folstein Mini Mental score < 20
• Feeding tube is being considered for any
neurological condition
• Status Epilepticus > 24 hrs
• ALS or other neuromuscular disease considering
invasive or non-invasive mechanical ventilation
• Any recurrent brain neoplasm
• Parkinson’s disease with poor functional status or
dementia
• Advanced dementia with dependence in all
activities of daily living
1 Int J Chron Obstruc Pulmon Dis. 2015; 10:1543-51
2 Based on severity obtained from review of courses.washington.edu/med610/pft/pft_primer.html#algor
3 www.capc.org

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Carle Palliative Medicine Criteria
• If you want to do everything for your patient and
they have a diagnosis which says or means failure,
they would likely benefit from a palliative care
referral.
– Symptomatic heart, lung, kidney, or liver failure.
– Cancer is cellular failure.
– Stroke, dementia, and neurological degenerative
diseases (ALS) are neurological failure.
General Referral Criteria

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Choosing Wisely
Don’t delay palliative care for a patient with
serious illness who has physical,
psychological, social or spiritual distress
because they are pursuing disease-directed
treatment.
www.choosingwisely.org/doctor-patient-lists/american-academy-of-hospice-palliative-medicine/

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Primary and Specialty Palliative Care
Primary Palliative Care
• Referrals
• Feedback
• Managing patients closer to
home
Specialty Palliative Care
• Education
• Support
• Adding value to preexisting
exemplary care

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WHY
PALLIATIVE CARE

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Curative or Palliative?
• Morphine
– No mortality benefit.
• Oxygen
– No mortality benefit (unless hypoxic).
• Nitrates
– No mortality benefit.
• Aspirin
– OK, now we start decreasing mortality (anti-platelet effects onset of
action is 2 hours, analgesic effect is 10-15 minutes).

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Total Symptoms
Pain
• Physical problems (multiple)
• Anxiety, anger and depression—
elements of psychological distress
• Interpersonal problems — social
issues, financial stress, family
tensions
• Nonacceptance or spiritual distress
Dyspnea
• Physical symptoms
• Psychological concerns
• Social impact
• Existential suffering
Curr Opin Support Palliat Care. 2008; 2(2):110-3

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Total Suffering
Social
Psychological
Physical
•Role
•Relationships
•Occupation
•Financial cost
•Emotional response
•Comorbid mood disorder  anxiety
•Adjustment to new baseline
•Cause?
•Associated symptoms
•Debility and fatigue
Superimposed on Maslow’s Hierarchy of Needs
Spiritual
•Existential coping
•Religious beliefs
•Meaning of life/illness
•Personal value
Interventional Pain Service
Other Specialties
Pharmacy
Physical Therapy
Social Work
Financial Navigator
Occupational Therapy
Chaplaincy
Art & Music Therapy
Social Work
Psychology
Psychiatry
Curr Opin Support Palliat Care. 2008; 2(2):110-3
Maslow AH, A Theory of Human Motivation, 1943

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WHY NOT
CHRONIC NON-MALIGNANT PAIN

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Life-Limiting Illness Population
• It is estimated at there is 1,200 patients with life-
limiting illness for each specialty palliative care
provider.
– By comparison there are 141 cancer patients per
oncologist.
• It is estimated that 30% of hospital patients “need”
a palliative care consult:
– At Carle Foundation Hospital that would be a 120 patient
service, currently we see about 30 in-patients per day.
These numbers don’t add up either
www.capc.org/about/press-media/press-releases/2016-9-9/Hospital-Palliative-Care-Programs-Understaffed/
www.ajmc.com/journals/evidence-based-oncology/2015/april-2015/how-and-why-oncologists-should-do-palliative-careor-get-some-assistance-doing-it-

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Chronic Non-Malignant Pain Population
• 5000 opioid-dependent chronic non-malignant pain
patients in the Carle Health System.
• Opioid prescriptions are written every 28 days, or
20 working days, ≈ 250 patients per day.
• Active ambulatory palliative care FTEs ≈ 2.
• We don’t manage chronic non-malignant pain any
better than you would.
The numbers don’t add up

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33. 33

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Chronic Inflammatory Pain
1st Line
• NSAID + PPI
see tables following
• Selective COX-2 Inhibitors
celecoxib 200 mg daily or 100
mg every 12 hours
•  Acetaminophen 1000 mg TID
2nd Line
• 2 agonists
tizanidine 2-12 mg PO TID
• Serotonin-norepinephrine
reuptake inhibitors (SNRIs):
duloxetine 60-120 mg PO daily
venlafaxine 75-112 mg PO BID
• Tricyclic antidepressants (TCAs):
amitriptyline 25-150 mg PO QHS
nortriptyline 25-150 mg PO QHS
3rd Line
• Corticosteroids
Require an extensive risk to
reward discussion with patient
• Strong Opiates < 50 mg MEDD
Pharmacological Management
BJA, 2001; 87(1):3–11
Up-To-Date

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Chronic Nocioceptive Pain
1st Line
•Topical agents:
capsaicin 0.025% - 0.075%
topically TID
lidocaine 5% topically TID
2nd Line
•Acetaminophen
acetaminophen 1000 mg
TID
3rd Line
•NSAID + PPI
see tables previous
•Selective COX-2 Inhibitors
celecoxib 200 mg daily or
100 mg every 12 hours
4th Line
•Serotonin-norepinephrine
reuptake inhibitors
(SNRIs):
duloxetine 60-120 mg PO
daily
venlafaxine 75-112 mg PO
BID
•Tricyclic antidepressants
(TCAs):
amitriptyline 25-150 mg PO
QHS
nortriptyline 25-150 mg PO
QHS
5th Line
•Strong Opiates < 50 mg
MEDD
Pharmacological Management
Up-To-Date
If signs/symptoms of muscle
spasm:
• cyclobenzaprine 5 mg PO TID
• tizanidine 2 mg PO TID
• baclofen 5 mg PO TID

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Neuropathic Pain
1st Line
•Calcium channel 2 ligands:
gabapentin 300-1200 mg PO
TID
pregabalin 100-150 mg PO BID
•Serotonin-norepinephrine
reuptake inhibitors (SNRIs):
duloxetine 60-120 mg PO daily
venlafaxine 75-112 mg PO BID
•Tricyclic antidepressants
(TCAs):
amitriptyline 25-150 mg PO QHS
nortriptyline 25-150 mg PO QHS
2nd Line
•Topical agents:
capsaicin 0.025% - 0.075%
topically TID
lidocaine 5% topically TID
•Tramadol
tramadol 100 mg PO TID
tramadol ER 100-200 mg PO
BID
3rd Line
•Strong Opiates < 50 mg MED
oxycodone
methadone
Possibly Effective
•N-methyl-D-aspartate (NMDA)
antagonists
dextromethorphan-quinidine
30-30 mg PO BID
•Muscle relaxants
tizanidine 2-12 mg PO TID
Pharmacological Management
www.uptodate.com/contents/image?imageKey=PC%2F58265&topicKey=ANEST%2F2785&search=peripheral%20neuropathic%20pain&rank=1~150&source=see_link
Finnerup NB et al, Lancet. 2015 Feb; 14: 162-173. Shaibani AI et al, Pain Med. 2012 Feb;13(2):243-254. Semenchuk MR, Sherman S, J Pain. 2000;1(4):285-92

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HOW TO
GOALS-OF-CARE

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HCPOA
Surrogate decision makers
1. the patient's guardian of the person
2. the patient's spouse
3. any adult son or daughter of the
patient
4. either parent of the patient
5. any adult brother or sister of the
patient
6. any adult grandchild of the patient
7. a close friend of the patient
8. the patient's guardian of the estate.
Choosing a surrogate
• Choose the person who would
make the decision you would
make for yourself if you were able
to.
• And tell them you chose them
and talk about your health and
wishes.
(755 ILCS 40/) Health Care Surrogate Act

39. 39
Talk Early. Talk Often.
• Anticipate trajectory of disease so that you can
have continuing conversations about goals-of-care
and advance directives.
• Making decisions empowers patients and
decreases burden on family because these
conversations have already occurred.

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Speaking and Translating Caring
Goals of Care
• Identify what is important to and
priorities for the patient.
• Identify what they hope to
achieve by receiving care.
• Identify what they fear will
happen because of the disease.
• Life review and legacy building
are separate, equal, but not
independent parts of care.
Plan of Care
• Representation of the goals of care in the form
of
– Documentation
• Advanced Directive
• Living Will
• HCPOA
– Orders
• POLST
• Code Status
– Medications
• Starting and stopping
– Services
• Social Work
• Chaplaincy
• Hospice
• Home Health
National Committee for Quality Assurance: Goals to Care

41. 41
S.M.A.R.T. Goal
• Specific
– What does the patient mean to accomplish with this goal?
• Measurable
– What observable shows we are meeting the stated goal?
• Agreed Upon
– Are the patient, family, and provider all on the same page?
• Realistic
– Is this possible – physiologically, clinically, financially, humanly, etc.?
• Time-Bound
– When will this be observable?
General goals cannot be translated into a plan of care
Management Review. AMA FORUM. 70 (11): 35–36
National Committee for Quality Assurance: Goals to Care

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Unclear Goals = Unplannable Caring
Goals of Care
• “I’m going to beat this [disease]!”
• “My family won’t let me go to a
nursing home.”
• “We’re going to fight this!”
• “I’m going to get my miracle.”
Plan of Care
• These are general, usually not agreed
upon, often unrealistic, and do not
meet a timeline consistent with life
expectancy.
• The plan of care in these case is to
explore:
– “Tell me what this means to you.”
– “Help me understand more about this
by telling me how you feel about…”
And get a family meeting with all the key
partners in the patient’s care both family
and providers.
vitaltalk.org

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It Is All Going Downhill
Disease Trajectories
bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif

44. 44
Birth
Actively
Dying
Death
Diagnosis
Treatment
New
Problem
Life
Simplified

45. 45
Years – Months – Weeks – Days
Birth
Actively
Dying
Death
J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
Diagnosis
Treatment
New
Problem

46. 46
DNAR is a (Small) Part of Goals of Care
Birth
Actively
Dying (B)
Death (A)
(C)
www.polstil.org
Diagnosis
Treatment
New
Problem

47. 47
POLST
A. “If you had no heart beat and
are not breathing, that is you
are dead, what do you think
would be the best thing to
do? Try to bring you back,
which is a Full code, or
knowing that you have a
number of progressive
health conditions feel that a
natural death is right at that
time, which is Do Not
Attempt Resuscitation?”

48. 48
POLST Continued
B. If they choose Full Code in A, then the only
appropriate selection in B is “Full
Treatment”
If they chose DNAR, “If you are dying, that
is your lungs and heart cannot get oxygen
to your organs, what would like us to do,
take you to the hospital and try to correct
the situation, even using life support (Full
Treatment) or using everything short of
that (Selective Treatment), or try to keep
you comfortable at home and only moving
you to keep you comfortable (Comfort-
Focused Care). No matter what you chose
if you are feeling ill you can always elect to
see your physician or come to the
hospital.”

49. 49
POLST Continued
C. If they elected Comfort Care in B
the only appropriate selection is No
medically administered nutrition.
If they elected Selective Treatment
in B then any option is appropriate.
If they elected Full Treatment only
Long-term or Trial period of
medical nutrition is appropriate.
“Would you want artificial
nutrition, that is a tube in the nose
or in the belly that supplies
nutrition?”

50. 50
POLST Continued
D. Make sure the patient or
surrogate and witness sign
it.
E. Make sure that you sign
the POLST to complete it.
I make a copy to be
scanned in and return the
original to the patient. I
tell them to place it on
their fridge.

51. 51
Advance Care Planning
• CPT Code 99497
– Advance care planning including the explanation and
discussion of advance directives such as standard forms (with
completion of such forms, when performed), by the physician
or other qualified health care professional; first 30 minutes,
face-to-face with the patient, family member(s), and/or
surrogate
• CPT Code 99498
– each additional 30 minutes (List separately in addition to code
for primary procedure)
Billing
Frequently Asked Questions about Billing the Physician Fee Schedule for Advance Care Planning Services , www.cms.gov, July 14, 2016

52. 52
WHO IS
PALLIATIVE CARE

53. 53
In-Patient Palliative Care
• Since January 2017, the in-patient service has been 7 days a week, 365 days a year during
regular business hours.
• Minimum staffing for the service is three (3) providers, one of whom is a physician, except on
weekends and holidays.
• Follow-Up Orders
– on patients we already see
– on patients that receive other care here at the main campus who would benefit from
ambulatory palliative care follow-up
If they are sick enough to be
in the hospital and need a
palliative care consult, they
need that consult in-patient.

54. 54
Ambulatory Palliative Care
• Clinic staffed Monday – Friday during regular business hours.
• To refer place order in EPIC
– Type “amb pal”
– Clinical coordinator or RN will call patient to set-up appointment
• Embed Clinics:
– Oncology (5 days/week)

55. 55
Telepalliative Care
• Carle Palliative Care Services now offers telephone and
telehealth consultations.
• Patients and families must be made aware that our
service may require them to be seen in-person prior to
initiating or continuing symptom management,
particularly when prescribing opioids.
• If the referring service is willing to write all
prescriptions for symptom management it will be less
likely that in-person visits will be necessary.
The positives of a pandemic

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THANK YOU
QUESTIONS. CONCERNS. COMMENTS.